Doc's Cluster Headache Journal

Serious research? At Last!

2011-06-27T23:40:00.003-05:00

I know I am probably behind the curve on this information... I have been in "lock-down" mode. Focusing all my scant energies on a 2.5 year old and keeping up with my work. But look! Much like a frigg'in ground hog after a long winter, I am poking my head out to Check my shadow, and post in case anyone still comes across these scratches in the clay.

A friend pointed out this article to me today.

LSD Alleviates 'Suicide Headaches'

Now, although I don't beat the drum about it on this blog, I think most cluster sufferers are aware that that people have been (apparently) getting results with psychedelics for many years. I think it has been tough for many of us to get on board with this idea. As I understand it, the people in the cluster community who have braved this path use very small doses of psilocybin or even morning glory seeds to self medicate. Damn, I don't even like taking well tested pharmaceuticals over long periods of time (under a doctors care mind you...) I don't think I would want to "roll my own" so to speak and although I have made mention of it on this blog, I never felt right about popularizing the idea based solely on what seemed to be anecdotal evidence. This stance was sometimes much to the chagrin of die-hard "shrooms cure clusters" fans. I am not really prudish about the substances themselves, I am not entirely a stranger to them or their effects. I mostly have issue with desperate people using potentially dangerous compounds over LONG periods of time with no understanding of how such use could effect them. I can say I have been very tempted to try it on many occasion. You know how it is, you really will try anything when the pain is at its worst. But even though I was interested, I never planed ahead before a cycle hit and besides I don't have the "connections". Well maybe I do, I am a musician after all... ; )

So to me, someone finally doing even a small study like this is very good news. I don't know that I have seen a study like this before. Perhaps it will lead to a safe, measured treatment or at least a greater understanding of what may help. So many people need an answer but just don't want to risk other aspects of their health in the process struggling for it.

Hey, If this does lead to an effective widely used treatment, we will all owe a big debt of thanks to the crazy bastards that first said to themselves... "Damn! This cluster is killing me! I wonder if it would help if I dropped some acid?" Personally, I don't think I would have wanted to take that trip with them.

Sleep, How Can It Be Wrong?

2011-01-19T05:50:00.003-06:00

Tonight I decided I needed rest I had been nursing a headache (not a cluster) that I had awoke to the day before and decided that my wacky theories about sleep being a trigger for pain in my head MUST be false. (I go back and forth on thinking I am crazy about this point)

So I retired early, leaving my wife to deal with our extremely rambunctious 2 year old. (I had been dealing with him all day so I guess I shouldn't feel too guilty). I stayed in bed to see when I would crash, and for once I would be dressed for it and in the proper place for sleeping. At around 10pm I realized I was "sputtering" in and out of sleep like a short circuiting toy. I was jerking around and fighting it like I usually do (involuntary response akin to mild night terrors, possibly like the hypnic jerk (Myoclonic spasm?) movements infants make). Normally I try to occupy my mind during these periods because to be honest it is unpleasant and feels a bit like I imagine having a bad head injury would feel like. This is why I don't make it to bed so often and fall asleep wherever I happen to be when the "switch" finally gets thrown.

This is interesting...
"Myoclonic spasms and Epilepsy:
Spasms which are accompanied by a loss of consciousness indicate epilepsy, and should be explored further with an epilepsy clinic or specialist."

I am not implying that I think I have some form of epilepsy, just that there is clearly something weird going on in my noggin that no one has yet figured out fully. Topamax IS an anti seizure medication after all. But I digress...

The last time I saw the clock it was close to eleven and I finally passed out for good. At around 3:30am I came awake with a lot of pain. It was the same headache but it was intensified greatly and I could not sleep through it. I can no longer ignore it, I have to firmly assert that the longer I sleep, especially off schedule, (2-7am the more likely I an to get headaches of all varieties.

I hate these "other" headaches almost as much as clusters because they are annoying in a whole different way and require different tactics. Ignoring mild clusters is a skill I have mastered, it seems unfair to force me to learn a whole different method of pretending to be "normal" around other people.

Honestly I think I am failing and people are starting to tire of me.

Christmas Day

2010-12-26T23:36:00.002-06:00

On Christmas morning I was going to wake up and get the house ready for my 2year old son. Start Christmas music, build a fire, make "Ho, Ho, Ho" sounds as he was waking up... that sort of thing. But at 6:50 my eyes fluttered open, I tried to move and pain shot through my skull. I started assessing the pain to see what I was dealing with...

It was on the right side mostly, but also spread all around the back of my head. It was a margarine and it was a bad one. Now I have had these a LOT in the last couple of years but it was Christmas and I was hoping to escape on this of all days. While not nearly as painful as a decent cluster, I knew that these "morning migraines" had the potential to last all day and in some ways be even more debilitating then a cluster.

Then I felt a tiny hint of it... there was a modest cluster brewing under the pain of the migraine.

My wife woke to me softly sobbing.

I am thinking of all you out there that have to put on a brave face during holidays. If you are like me and spend Christmas trying to "keep it together" while feeling like crap, I just wanted to say that as lonely as it feels, you are not alone... Merry Christmas, and keep up the good work.

Some Bad Non Clusters and Fear

2010-11-19T07:03:00.002-06:00

I have not been getting bad cluster pain recently perhaps because the Topamax I have been on for quite a while has kept them under control or maybe because I am just in a natural lull like I have experienced before.

But that doesn't mean that I get to enjoy living with the reduced number and much more mild cluster attacks, oh hell no! Other "varieties" of headache have crept in to fill the void. Something about me just makes me very susceptible to headache... It is as if some entity even seems to "WANT" me to have a headache most of the time and will find a way to make it happen. It is a very unpleasant way to live your life. (a huge understatement due to a desire to avoid profanity for once)

So as if the headache that started sunday evening and lasted till Wednesday morning were not enough... My special friends the "intense pain in the morning if you sleep as much as a normal person" headaches are back.

The two day headache was close to the surface on the left temple very intense twingeing like a nerve gone haywire. the skin on that side of my face was tender and by the end of the marathon it felt like i had been hugging a cactus for 2 days while a prize fighter whacked me in the temple during breaks from the hugging.

The morning headaches I have described before, but they are particularly insidious. If I sleep enough to get good rest... I wake with a screaming vascular "all over" headache that hurts when I move and dissipates the longer I am awake. It takes about an hour for a really bad one to get low enough so I don't notice it. One thing I am noticing as this one dissipates is that is feels a bit like a cluster that has switched sides and is hidden "underneath" the tension pain.

The message of these headaches is clear... sleep to much (more than 4-5 hours) and you will suffer.

Neither of these varieties of pain is any were NEAR a modestly powerful cluster attack... but I am "used" to those and dealing with them. Plus, this is supposed to be MY time dammit. I am supposed to be rebuilding my spirit at any chance I get. Always in the back of my head is the fear that this my be the precursor to me becoming one of those poor souls that is genuinely chronic and has clusters every day of their life.

I have great empath for any of you out there that deal with that. Keep being so brave please.

Update On Recent Cycle

2010-08-02T00:51:00.003-05:00

After the series of strong classic attacks that happened in late may (4 in one 24 hour period, Yikes!) I had a couple of weeks of moderate to strong attacks that slowly became less frequent. It took many more weeks of a slow tapering off before I could say that the cycle was coming to an end. Still, even as recently as yesterday I found myself complaining of low level "cluster type" pain in my "spot". But then anything less painful than around twice the power of a "normal" headache I tend to ignore.

Also I have been having a lot of problems with daytime drowsiness again... and also the weird thing where my muscles and legs especially ache in a strange way. My doctor has suggested that I may suffer from Fibromyalgia and I am resisting that diagnosis because who the hell wants yet one MORE unexplainable "condition" and take yet MORE mind altering drugs to control it.

I am convinced that there is one damn thing wrong with me that leads to a myriad of related issues. I often grow weary of being the recipient of "shotgun blast medicine". The attitude seems to be that if you toss enough pills at it, some of them have got to work!

What I want is to understand WHY I fell like I have been beaten up with baseball bats, had hot pokers shoved behind my right eye, and feel worse instead of refreshed and recharged if I try to sleep as much as normal people do.

I have a appointment with my neurologist this week and I am not looking forward to telling her that I had a bad cycle. It may mean that I have just been lucky and that the topamax is ineffective to some degree or that she will think that it is no longer working as well as is once seemed to be. Either way I am betting she will want to increase my dosage again or move me to a different drug... ugh.

The beast returns, with a vengeance

2010-05-24T12:50:00.002-05:00

This is Katy writing; I just wanted to make a quick post about the most recent cluster cycle. It started in earnest on Sunday, May 16. Doc had four really bad ones that day -- one got up to a level 8. I think he may have had a few "low-level" ones in the few days prior. That Saturday was the Dallas 24-Hour Video Race, so he slept only about two hours Friday night, and was go-go-go all day Saturday. Then on Sunday he got hit really hard. Monday I think he had one, on Tuesday he had two (one was during a client photo shoot, bad timing, but it didn't get to the point that he had to excuse himself), Wednesday he had four again, and then I think three on Thursday. I believe that on Friday, Saturday and Sunday he may have had one or two per day. Doc says that his perception is that they have been decreasing somewhat in intensity over the course of the week.

Son of a...

2010-02-05T02:15:00.002-06:00

Defiantly in a "muted" cycle.

I just woke up in my office chair at 2:00am (classic time for an attack) and I realized that the nightmare I was having was my mind trying to wake me up... because I have a little cluster ramping up right now. I don't expect it to get very bad. maybe a three in my scale. over the last two weeks I have gotten a couple of sharp attacks that "poke through" like this, often related to sleep. Like if I take a nap or sleep a lot the night before.

This have been one of the worst though... it may get up to a four before its ready to break.

Really just a reminder to myself that Topamax is not perfect and I am still getting really painful headaches more than any frigging human should have to.

not to mention that I wake up nearly every day with some level of migraine type pain... OK gonna have to stop typing, getting bad.

Maintaining A Low Roar

2010-01-09T03:41:00.002-06:00

I know I haven't been posting much...

A 13 month old son with food sensitivities who wakes up 2-6 times a night and sometimes requires hours of soothing to get him back to sleep will cut into your "writing time". But thats not the only reason... I have been in a lull, bad cluster attack wise. I feel guilty in a way because I know so many of you are out there in such great pain and I don't think I feel worthy to speak about it at during a time that I am not feeling it as intensely.

I am still waking almost every day to a 2-3 migraine style headache and at least I forget... I AM in a little cycle right now. I am getting 1-3 level (my scale) "long and low" cluster pain at my typical times of day for the last two weeks but I am so used to mild cluster pain that I sometimes have to stop and think about it, almost "hunt for it" before realizing oh yeah! There it is!

Kinda sad, being so familiar with pain that it becomes like background noise that you tune out. Its still slowing you, making you less effective, you just don't have the time to acknowledge it anymore.

Now the burning question... Am I not getting bad attacks because I am on Topamax? Yes? Maybe? Partly?
a. I think Topamax is having a positive effect (for me).
b. I have had long stretches of time were I didn't get bad attacks before.
c. I get less headaches when I sleep less... and I have been up a LOT with the baby
d. I honestly think my body may just be "walking it off" due to my son

Topamax has pretty much proven to me that it is having some effect on my attacks. It is the best preventative I have tried so far. I understand it does not work for everyone and that just points out the elusive nature of controlling cluster attacks. For all I know my bad attacks will return with a vengeance in spite of Topamax and I would not be surprised in the least. In fact I am waiting for that shoe to drop.

Hell, It doesn't Have to be the Topamax that is fully responsible. Sometimes I just take a long stretch of time off from bad cycles... It has happened a couple of times before and each time I was hopeful that my nightmare was ending. I was heartbreaking to find I was so wrong.

Its now very clear that for me sleep is a "trigger". Yup! The more I sleep the more likely I am to get bad attacks and even migraines. Well, my son has been a real challenge over the last 13 months he needs around the clock attention and his headache ridden insomniac father can usually stay awake to give it to him. This could be 80% of the answer right here to be honest. When we get help watching him and I get the chance to catch up on sleep... I feel like crap after.

I am a firm believer that the body can rise to a challenge for a period of time and that I may be calling on resources that are keeping me healthier because I am caring for a baby. Now that may sound a bit odd coming from me but I think our own bodies are the best pharmaceutical factories on the planet. I don't think is too far fetched to think that I have triggered "fatherhood" changes in my body and that I am reacting in a positive way to providing care for a new person. Its a nice thought anyway

So there it is.

Still lots of headaches over the months, just not the ones that leave you rocking in a corner beating yourself at the base of the skull with the first weighty object you could find.

My wife told me something the other day that made my blood run cold. Our son has been waking up at night more often that usual recently and screaming loudly when he does. She was having a hard time getting him back to sleep and she said he started banging his head rhythmically against he arm and then started hitting himself in the head with his hand in the same way. We both just just kind of stood there for a moment knowing that if he had headaches it would explain so much about why he has had so much difficulty. Then we both decided it was too horrible to consider and I broke the silence by saying "head banging in children is pretty common".

When I was alone I spent a few minutes sobbing at the idea that I may have passed any of my insane health issues on to my wonderful son.

As Much As I Hate To Do It...

2009-12-28T19:35:00.002-06:00

I think I am going to have to put tighter restrictions on posting comments. Lately I have been getting comments which are just long lists of links to commercial sites and I can't abide by that. Thats not what this place is about. People should not have to dig through crap text to get helpful information or the honest comments of someone going through the same awful pain that they suffer.

The fact that people don't respect that is astounding... I know these new posts are likely automated but the people that created the automation knew that it would not be selective or empathetic as it polluted useful sites with garbage text, so they still have no excuse in my book.

Hell, as you may have noticed... to date I haven't had any ads MYSELF! why the hell would people feel comfortable trying to advertise here?! It STUNS me just how rude people can be.

I have always kept the comments open so that people could come and post freely and anonymously without hassle... (The last thing you want when you are in the middle of a cluster attack is to have to set up a damn account so you can vent!) I am sincerely sorry that human greed and my lack of time to police the result of that greed now forces me to close that freedom down.

Honestly I just can't keep up with all the spam and its starting to slip by me. It makes me angry that they have changed the way This blog operates because they are trying to sell "Ugg Boots".

I Don't Use The Kip Scale Personally

2009-12-28T09:24:00.000-06:00

Its not because I don't find it adequate mind you... its mainly because I had developed my own scale many years before hearing about the kip scale and everything in my long record is based on my own measurement. (I had clusters long before the magic of the interweb!) Converting now I'm afraid would cause more disassociation with that old pain and cause me to forget what I had really experienced. a level 3 should always be a level 3 in my mind. It will "drift" and you can't stop that with ANY pain rating system but I think changing my point of reference mid stream would be really bad for me.

My apologies if this causes confusion for any readers.

Having said all that I do like mine better because it doesn't spend as much time on the low end. It starts were I precive a bad tention headache peaks in pain and thats what I call a "one". This makes it easy for me to explain the pain to others. I have little doubt that my worst attacks have qualified as being described as 9-10 times more painful than a tension headache.

So on my scale, I tend to be conservative with assigning high ratings. Many times I have marched in circles around my downstairs at 3am repeating a mantra and beating myself in the base of the skull with a heavy object only to rate that a level 6-7. I think I have only given my self 9's a few times and I may have only used 10 once.

On my scale, 10 represents almost a mythic level of pain... believe me I know most of us have peaked into that pit. I just don't want to be casual about it... when it really happens, I want to document it. I want to have a rating that stands out and screams "that night was pure horror." So I kind of keep 10 in reserve.

I think If I was using The kip scale I would be tempted to grant myself 10s more often.

Here is what the KIP scale looks like.
KIP PAIN SCALE
Pain level 0: No pain
Pain level 1: Very minor, shadow's come and go
Pain level 2: More persitent shadow's
Pain level 3: Shadow's are getting constant but can deal with it
Pain level 4: Starting to get bad, want to be left alone
Pain level 5: Still not a "pacer" (needing to walk back and forth) but need space
Pain level 6: Wake up grumbling, curse a bit, but can get back to sleep with out "dancing“
Pain level 7: Wake up, sleep not an option, take the beast for a walk and finally fall into bed exhausted
Pain level 8: Time to scream, yell, curse, head bang, rock, whatever work's
Pain level 9: The "Why me?" syndrome starts to set in
Pain level 10: Major pain, screaming, head banging, ER trip. depressed. suicidal.

Note: Between Pain level 6 and 7, the eye on the hit side starts to tear and nose starts running.

My scale looks more like this
Doc's PAIN SCALE
Pain level 0: No sensation at all (like that ever happens. I get migraines now as well so I usually got some pain in the noggin)
"Aura" Dull non painful sensation behind eye and "stupid feeling" mild confusion( "shadows?" )
Aura w/pain I will sometimes refer to these as a .5 (yes, I know that if I used KIP I wouldn't have to do that.)
Pain level 1: Approximately the pain level of a tension headache
Pain level 2: I am able to mask this level of pain and function, but it is twice what I used to consider a "normal" bad headache
Pain level 3: 3x Even though I am very well practiced, at this level I start losing the ability to "act normal"
Pain level 4: About the level of bad migraines I have experienced, urge to pace and beat self in the head starts.
Pain level 5: Pacing starts, talking to self can begin... this is when fear of a really bad attack sets in
Pain level 6: Marching, try a hot bath (placebo effect imo), full blown mantra by this point. Cursing.
Pain level 7: Trying to keep it together, marching louder mantra, screams of anger common, constant beating self in head.
Pain level 8: Nearing the breaking point, often abandon pacing and retreat to hot bath, question fairness of life.
Pain level 9: Breakdown, too much pain to take. Even a seasoned cluster veteran loses it
Pain level 10: Reserved for events to nightmarish to describe with words.

So as you can see its really similar, just a different "curve" it starts quicker and is more stingy with the ratings as they go up. I may have to go back through my blog and do a "KIP" conversion for each time I rate a cluster. (that would be a pain)

One useful tool I have found for describing clusters to people is telling them to think about an Ice cream headache. Then tell them to imagine that lasting for 45 to 90 minutes! I let them chew on that for a bit... then I drop the bomb that I would consider that about a level 2-3 at most. Of course this assumes everyone experiences those little intense throbs the same... maybe they just always hurt me more than other people... well, people seem dutifully horrified. hehe Pain will never be an easy thing to discuss.

I feel like I bought a set of wrenches and found out I needed metric. : )

Latitude Effect?

2009-11-14T22:25:00.000-06:00

A while back a visitor mentioned in a post that people believe location in reference to the earths equator has some effect on cluster headaches. At the time, I had only heard that the theory existed, I had never seen any facts or real studies... A quick poke around seemed to indicate that its based mostly on anecdotal evidence at this point. I can still find no studies. That doesn't mean they don't exist, I didn't look very hard.

I tend to update my knowledge in waves... I am a bit like an Anne Rice vampire that buries himself for one hundred years until things change enough to be interesting... I have had this affliction for so long that its a bit depressing to hash over the stuff that doesn't seem to make any difference or hasn't been thoroughly researched. So every few years I go on a tear... usually because I get one too many REALLY bad cycles and I find out every new bit of information I can. By the end of it, I usually end up a little beaten up because nothing seems to be a firm answer or pertain to me and I begin wondering if I should switch neurologists again and crawl back beneath the surface.

Personally it seems a bit far fetched to me, but finding every bit of the puzzle helps. So this is a quick post to remind myself to look into it further when I am in "research mode" and also to tell people if I think my living in southern latitudes has had a positive effect on my headaches.

Now I would say that in my personal experience that I can NOT confirm the equator phenomena. I live in one of the southern most US states and when I travel I usually go north and spend good amounts of time in places like Boston, and Sandpoint Idaho, Squiem Washington, San Francisco, Victoria Canada and it seems to have the opposite effect. I have noticed I get less headaches... But the same was true when I went to Belize. Basically, when I leave home, I do better.

But then, I am too small of a sample (and I don't travel enough) to base any firm opinions on...

A lot of people seem to be moving because of this... believe me I understand, most of us will do anything for a chance to feel better. But I want to see data before I start packing my bags... because I sure can't go much further south unless I leave the U.S.A. and I really hate the heat. : )

Long Absence

2009-06-10T20:59:00.002-05:00

Thank you to all the people still reading the archives and posting or finding this blog for the first time.

I know I have been gone for a while now and just to explain quickly, My son who is now 6 months old has food sensitivities and is pretty demanding. I take care of him during the day and try my best to keep up with my work at night. I also handle night time feedings so his mother can rest and be alert at her job. I am often awake with some type of headache anyway so why not use it to our advantage.

My headaches have not been bad lately (clusters and migraines) it would be nice to think that my son is causing the release of some hormone in my brain that will eventually "repair" me. But its more likely that I am just in one of my long lulls that happen every few years... its like I get a break so that I keep going. Just enough relief to string me along.

Also I am convinced that the lack of sleep I am getting is having a positive effect on my headaches. I have been getting 3-4 hours of sleep a night for the last 6 months and it has seemed to make an impact. Anytime I sleep more I get hit with pain of some type. The last few days my wife and I have changed the schedule so she controls the mornings more and she tends to let me sleep because from her point of view "how could I not need sleep?" but I have been feeling worse than I have in months so I need to start setting an alarm or something.

Of course I am still under treatment... Topamax is not a wonder drug, but it's the least offensive preventative I have taken so fare and at my current dose it seems to contribute to "mixing up" and "muting" the cluster attacks and the migraines.

So I don't know how often I will be posting or answering comments over the next few months... Mr. Babies GI claims he will eventually get over his sensitivities and hopefully that will make him a lot calmer and happier. Maybe he will even sleep through the night! But for know I just have my hands full, and it was not like I had a tone of excess energy before... heh.

I have been suffering with clusters for 18 years now... I have had times when it almost drug me down and times were I got a nice long break from it and started to imagine that I was free. I know how much it sucks... Hang in there folks. I hope everyone who reads this finds relief soon.

Fed up with doctors...

2008-12-02T09:40:00.003-06:00

I see 3 doctors at the moment, all 3 generally treat me like I have a time limit on my visits. I have had one stop me in the middle of describing my symptoms and say "We need to move on, we are running out of time." He didn't say he didn't feel what I was describing was unrelated mind you... just that he didn't have time to hear about it.

I have a horrible time contacting another of my doctors, I can't call and speak with her. I have to call her assistant. Now thats not so unusual, except that her assistant doesn't take calls either! You have to leave a voicemail to get a callback from the assistant and that can take 24hrs! The message sternly warns you that only one call can be made a day and that calls must be made before 3pm... remember, this is just to speak to her helper. I just don't feel there is any interest in connecting the dots and finding out what is really wrong with me. She just seems to medicate away my symptoms. Can't any neurologist can do that?

Even the doctor I really like is usually so fast during visits I feel like I am speed dating.

This takes the cake however, My wife is having a baby and yesterday was the due date she was given originally so we called her doctor to see what we needed to do and schedule an appointment (he told us to call if she had not gone into labor yet) But the prick had left the country! Yes, thats right... just left without saying a word to us. My wife is not prone to be overly emotional and she is a level headed chick... but as you might imagine this upset her a great deal. That pisses me off to no end.

We made the decision to use him based on the recommendation of friends and information we had gathered in meeting with him and spending time with him over the last few months. We now know nothing about the doctor that will be in charge of the delivery.

He robbed us.

I have often defended the actions of doctors in this blog, but I don't feel so forgiving at the moment. This is how they see us folks... I know it is different for each doctor, but I honestly think that in order to be successful as a physician you need to be able to be "selectively" empathetic. I think it helps a great deal to be able to turn off your concern for others like a light switch. Watch them like a hawk, and feel free to use them like they use us.

What a pitiful little thing you are...

2008-12-02T09:25:00.002-06:00

I fluttered back from the unconsciousness that I hate so much and poured myself out of bed. Shambled down the stairs like an old man and collapsed in a chair.

When I had enough of me gathered, I looked inside to access how much I hurt and how badly beaten I had been in the night.

What a pitiful little thing you are...

-Murdock Scott 2008

Recent Headache activity

2008-11-06T08:57:00.002-06:00

Mon. Sharp Twinges of cluster-like pain in the afternoon and evening dull throbs of migraine like pain off and on throughout the day.

Tues. Woke with somewhat intence migraine pain. Faded by mid morning. Same cluster like twinges throughout the day.
Wen. Woke with bad migraine pain that lasted most of the day. A few very sharp and painful Cluster-like twinges in the evening.

Thursday. woke with a dull migraine pain on the left side by mid morning pain had seemed to consolidate behind the left eye into a throbbing "mock cluster". Its vaguely in the right spot but doesn't really feel the same and "moves" or undulates differently. Its like Mr. "M" is entertaining Mr."C" by putting on his clothes and doing an impersonation of him.

Annoying.

So, the lower dose of Topamax I would say defiantly is not going to be enough to keep them quiet.

Hands feel better after stretching exersizes... still feel like passing out when I do them... weird.

Coughing is reduced but I an on medication for that until we know whats going on I guess.

I don't know, I am sick of all this to the point that I can't even describe.

Long And Low Cluster Pain, Side Effects Update.

2008-11-02T01:58:00.003-05:00

I had pain typical of cluster in the classic cluster location for several hours today. It never got over about a 3 on my personal scale (different from the commonly used Kip scale). These "Long and Low" types of headaches are not new for me and typically have a long ramp up that leads toward the more classic short intense attacks sort of like compressing a spring.

I don't really know if other people experience clusters this way. I somethings think that my reluctance to take pain medication gives me a somewhat more "detailed" view of my pain than others may have when its less intense that is. I also firmly believe that everyone is different and its possible that my headaches are just a little "weird". The other possibility I see is that they are "old" I used to have nothing but the short intense attacks, like most people describe. These "long and low versions that now come in between are fairly new, I have developed them over the last 3-4 years. They seem to be an "addition" not just a modification to the attacks I was already having.

Plus, In the last year or two I have also been getting more and more migraines which feel completely different and are located in a different area.

So, one got through the lower dose of Topamax is the point I guess. I think its clear. I am more susceptible to feeling pain from whatever causes the headaches at this lower dose. I want to stress that even at higher doses I could feel "stuff" going on. It just didn't usually get to be long lasting pain... weird short little bursts and twinges while the two demons fought under the blankets piled up on my head.

Also, I had a visit with my regular doctor and he does not seem to think the weird stuff going on with me is related to the Topamax. I love this guy, but I think he may be wrong... I kinda hope he is wrong. He thinks I have carpal tunnel (not necessarily repetitive stress injury I guess but something else falling under that umbrella) and a disorder that makes the lungs sensitive to temperature changes (like from inside and outside your body) and thats causing my airways to spasm. He took some chest X-rays and I am waiting to hear back on that. Ugh.

I would much rather it be the medication.... I don't want more weird stuff wrong with me.

Reduced Topamax Dosage Update

2008-10-16T10:21:00.002-05:00

Since my doctor reduced my Topamax dosage I have been doing much better on the complaints I was having.

1. Numbness and or tingling in face, hands and sometimes feet.
Seems to have reduced substantially. I have hardly noticed it in the last week or so.

2. Muscle aches, pains and weakness. Mostly in the hands but also in the feet and legs
Still kinda weak but not as bad as before I would say.

3. Urge to cough when I draw a deep breath.
I was hoping this would go away completely but it hasn't and it really worries me. It IS getting better though. I have had one or two days since the drop in dosage that were as bad but mostly I am able to take a deep breath and not cough now.

4. Cloudy urine
I haven't been checking... It's a gross task. heh.

5. Strange and unpleasant taste/smell in mouth and nostrils

Doesn't seem as bad.

6. Unusually weak and tired ( I believe more so than before dosage increase but hard to gauge)

I would say I have more energy.

I also had some lab tests that showed negative for SOMETHING. This hasn't really been explained to me yet, but I assume they wanted to check for some possible negative effect of the drug.

So what about the headaches... sadly yes, I have been feeling them more. Not too badly. But last night I got a cluster twinge and this morning I can feel it again... lurking in there. Its been a good while since I felt "distinct" cluster pain so I am convinced that the Topamax has been "muting" a mild cycle in progress.

Who knows, that may explain some of my "side effects" maybe the fatigue, numbness and weakness were all just what happens in me when I get cluster attacks that are modified by the presents of enough Topamax in my system. Like splash damage in a grenade fight.

Ack! the twinging continues...

Reduced Dosage On Topamax

2008-10-05T01:45:00.002-05:00

As of Yesterday I dropped down to less than half the dose of Topamax I was on before on the advice of my doctor. I and getting some lab work done monday and I assume this is to check for issues that may have been caused by the drug. Routine I am sure when someone starts complaining of such an array of possible side effects.

With the drop in dosage the "muting effect" of the drug on headaches that are bouncing around is already noticeably lessened.

I which I had been able to speak with the doctor but all this was arranged by leaving messages for her assistant. So at this point I really don't know what to expect. I am not really sure what amount of my current symptoms are related to the drug. Its hard for me to discern some times. I don't know how other people can be so sure of such things. I guess they have a clearer understanding of what feeling "normal" is like.

I also wanted to say in regards to my last post and the danger to vision from Topamax. I don't feel like my doctor ever put my vision at risk. I was not aware of the issue and I would have liked to know in case something HAD gone wrong and I needed to get to an emergency room fast and demand they take action. But in fairness the chances of that seem next to impossible to me. She has always crept my dosage up very slowly and I am sure this is one of the reasons why.

As I get to know her I am getting to trust that she is very good at what she does. I just wish that it worked out that I could have better access to her. But its probably BECAUSE she is good that I can't speak with her on the phone and our very rare visits seem so rushed. She is just in demand.

Topamax Possible Side Effects

2008-09-29T15:29:00.003-05:00

After several weeks on a higher dose of Topamax I am feeling a collection of problems that compelled me to finally call my doctor and see if these could be related to the drug. Now if any doctors read this, pleas note that these symptoms have been going on for weeks, but it is very hard for me yo discern what is "new" discomfort because I don't fell well most of the time... I have been generally tired and have had body aches for example since I was in my 20s and I am almost always suppressing some kind of headache pain. On top of that I simply don't like to complain... If I complained about every ache and pain I have The bitching would be constant and annoying as hell to those around me. So I have trained myself to hush my mouth and "take it".

You may need to understand these traits about some people you give medications to... I am sure some of you do, but in case I catch the ear of someone who had not considered it I thought it was worth explaining.

Drug manufacturers might want to make a note as well... if you actually care. (Yes I am sorry, I see you that way. Please prove me wrong.)

Here is the list of things I have noticed that seem to be going strange with me on my current dose of Topamax:

1. Numbness and or tingling in face, hands and sometimes feet.

2. Muscle aches, pains and weakness. Mostly in the hands but also in the feet and legs

3. Urge to cough when I draw a deep breath.

4. Cloudy urine

5. Strange and unpleasant taste/smell in mouth and nostrils

6. Unusually weak and tired ( I believe more so than before dosage increase but hard to gauge)

Details:

1. Numbness and or tingling in face, hands and sometimes feet.
I had something similar to this before starting Topamax that I believe is just a natural occurrence in me. I am referring to them as "Sleep attacks" my legs and arms get "weak" and "numb" and I feel like I can't move them and I am in a strange half asleep state. much like sleep paralysis. these seem to happen when I am in the low points of my modern headache cycles.

At first I thought the Topamax was just "smoothing" these out and making them occur at weird times and feel different. Now I am not so sure. They are similar, but now I am wondering if the Topamax is not triggering the thing that used to only happen once and a while "naturally" and therefore changing the nature of it.

2. Muscle aches, pains and weakness. Mostly in the hands but also in the feet and legs
Dunno...Is this related to point 1?

3. Urge to cough when I draw a deep breath.
This really freaks me out, I swallowed a pill wrong a few weeks back and honestly I though thats why I have been coughing... but its been weeks now. I don't seem to have any raspyness or flem... and that actually makes me MORE worried.

4. Cloudy urine
I started taking this pharmaceutical quality fish oil for my high triglycerides and I though that was what was doing this so I cut it out for a week and it seemed to get better but then I saw a cloudy batch... I didn't suspect the Topamax until I reread the side effect warnings and connected the dots about kidney stones. I just want to know if this is what is doing it so I can relax and drink tons of watter... I should be any way I guess.

5. Strange and unpleasant taste/smell in mouth and nostrils
Once again I thought this was all because of the fish oil... but I think its BOTH! I am a super taster and this may be a problem for me. Its really annoying, it almost makes me feel ill to have the smell/taste with me all day. Sometimes its like burning electronics.

6. Unusually weak and tired
Like I mentioned, its hard for me to gauge. But, I believe I am worse off than before my dosage increase. I feel pretty crappy as of late.

But of course then there is the big question...

"How have your headaches been doc?"

Not bad... modest pain, manageable, mostly brought on my sleep. If I sleep I hurt... Classic for me. But the short story is that nothing has peaked above a 3-4 since I have been at this level of medication.

My doctor discribed this class of medications as "throwing a blanket over the headache". I would modify that by saying its like throwing a wet wool blanket that sort of stinks over two fighting demons that want yo beat the crap out of your brain and that each increase in dosage is like another smelly old wool blanket that you use to try to block the sound and pain of the fighting demons but also makes it harder for you to walk around normaly and hold your head up like a person without a stack of stinking wet wool blankets wraped tightly around your head.

So at those levels of pain I could function pretty well... IF i had the energy and didn't feel like crap in OTHER ways *sigh* Thats always the story I can trade the pain for side effects that are almost as bad as the pain... and in some cases may be dangerous.

The sad truth is that as much as they hurt like hell, If you are used to them like I am, even the worst clusters can't really hurt you if you refuse to hurt yourself... the medication on the other hand just may blind you or worse.

Please read and be aware about this happening in a small number of Topamax users.
Topamax and Another Acute Glaucoma Attack - Almost.

Sleep=bad post 687

2008-09-16T02:55:00.002-05:00

I accidentally fell asleep at just before 11pm tonight and awoke at 1:30am with a pretty screaming "two dogs fighting under a wet blanket" style type headache. Its almost 3am now and I am hoping I can get back to sleep soon and get a few hours of sleep like a normal person.

I need to post my summary of my recent visit with my neurologist. I keep forgetting.

I also need to post about Topamax induced "buzzy" extremities and unique daytime sleepiness I have been experiencing since a recent dosage increase.

Too tired now...

I am still having headaches in the morning.

2008-08-17T14:48:00.002-05:00

Almost every morning when I wake up I have a headache usually not that bad, (for me) level 2-ish. Most of the time these disipate withing 30-45 min after waking, almost like being asleep was the cause. Sometimes they stay with me for the rest of the morning and rarely they can last all day. They are normally in the migraine area and have the characteristics of that type of pain.

The day before yesterday. I slept for longer than usual (7 hours) and woke with a very bad headache that lasted much longer. I am trying to get back to a schedule of sleeping a full nights sleep each night but if I continue to wake up in such pain each morning I am afraid I will have poor motivation to do it.

I Want To Zap My Brain With Magnetic Pulses

2008-07-21T20:46:00.003-05:00

Many years ago I read about researchers using strong electromagnets to attempt treat depression and also epilepsy I think. I was hoping that it would pan out and eventually lead to somewhat passive way to help those of us with migraines and clusters. I have been hearing that studies have been going on for a while along those lines but now it looks like its getting pretty serious.

http://www.webmd.com/migraines-headaches/news/20080627/magnetic-pulses-may-zap-migraine-pain

The article just talks about using it for treating migraine with aura but perhaps it is effective for cluster to some degree. The results quoted in the study don't make me want to jump up and down mind you... but even some measurable success with a non invasive and non pharmaceutical way to help with headache management appeals strongly to me.

The Return Return

2008-07-20T23:00:00.002-05:00

Just a quick note, within a day of returning home from the trip I mentioned in the last post, I started a pretty bad migraine that lasted for well over 36 hours.

Since then I have been suffering through some pretty bad daytime wakefulness problems, this usually seems to happen in between bad headache bouts.

I could be coincidental, but It would seem that something in this area may be a trigger for my headaches and possibly my theoretically associated sleep problems.

I always feel better... when I am away.

2008-07-08T18:01:00.002-05:00

Travel seems good for me. I have been out of town now for about a week and I have been feeling pretty good. The thing is, this is not the first time I have noticed and this has me thinking.

Posibilities...

A. I just refuse to give in to it as much while I am away and I use reserves of energy and hide the pain and exhaustion better, even from myself. Being distracted by unique surroundings could also have a calming effect.

B. I am sensitive to something in the environment of the city that I live in that acts as the main trigger for my clusters and migraines. I only started getting the headaches a few years after relocating to that area and now it really seems that every time I leave it they start to taper off somewhat. I believe that I have a difference in me that makes me prone to the headaches and that many things can trigger them. like booze or strong smells, but maybe there is an underlying trigger that is pushing them up 24/7 in the air or water that I can get away from. of course different people have different triggers and I don't think that its a poison gas or something like that... it could just be some perfectly normal thing that irritates only me. It's an interesting thought at least.

C. Maybe it is the heat... even in the dead of winter were I live its not that cool. So just about anywhere else I travel to is cooler. I don't know if I really believe this one much. I do hate being hot though.

D. Coincidence. The desire to feel better and get relief from these horrid headaches are notorious for making people think people see patterns were their are none... I am no exception.

Tomorrow we fly back home... In some ways, I am not looking forward to it.

Meat Gone Bad

2008-06-04T10:43:00.003-05:00

For several days after my last post, I was doing reasonably well and was encouraged that I was on an upswing. But unfortunately yesterday I had a very bad day I felt I needed to write about briefly.

First of all, I want to note that since I am trying very hard to get more rest and set aside my phobia of sleep I went to bed quite early and slept for close to eight hours which is pretty unusual for me.

I woke up with a headache, which have become so common I hardly notice them anymore. The last couple of weeks I seem to have about a 50-50 chance of waking up in pain. The headache pain was mild and disorienting all throughout the day and evening mostly non-distinct but sometimes settling in the cluster specific area of my head but more often feeling like migraine pain.

The more disturbing symptom was the feeling of stupidity and disorientation. I'm pretty sure I've described this feeling before, but it was very pronounced yesterday. The overall effect is like and out of brain experience, it's literally like someone has removed part of my cognitive ability surgically, it's still somehow remotely connected, but I have to search for it each time I want to use it, like the evil imaginary surgeon is playing a hideous game of "keep away" with parts of my brain. It's very unpleasant.

Usually I experience this during cluster cycles and so often I would describe it as having a cluster headache without the pain. But I don't know, maybe it's a separate effect entirely. Maybe it's a headache aura. From what I've read, when people start seeing spots before they get migraines it's because parts of their brain are having little malfunctions and the chemical corrections these malfunctions are eventually what causes the migraine. So, knowing that I have learning disabilities and sleeping problem since I was a kid that don't seem to be purely pulmonary, A slightly disturbing question arises... What brain malfunction is causing my headaches?

Of course that's the $24,000 question that no one seems to know yet.

Well, I don't want to make this long post about comorbidity, and everything I feel it's wrong with me. But I wonder sometimes if deep within my brain if there isn't a little messed up bit of meat that is causing a lot of problems for me.

Don't Dare Fall Asleep! They Are Coming for you!

2008-05-28T04:43:00.000-05:00

I had planned to make a triumphant post about not having a headache all day yesterday. I woke up, noticed that for the first time in a long time I didn't have any noticeable pain in the morning. I started doing some things that I had planned to get done during the day and even though this required me going out in the Texas heat and holding my breath as I rushed through fragrance and cosmetic areas of a couple of department stores, I started to notice that I still have not developed any noticeable headache by late afternoon.

In my hurry to take advantage of a pain-free day I didn't actually find the time to make a post. I'm sure that some of you who have headaches all the time understand, but it sort of the last thing you want to think about when you're feeling good. Instead, I spent time talking to my family, spending little extra time with my wife, and just doing some things that I wanted to do.

Well, all that running around must have worn me out, because I started to get very tired around 12:45 AM which is very early for me. Since I am trying to get my sleep cycles under control, I decided to take advantage of this and go to bed.

While about 35 minutes ago I was hustled out of my sleep by a migraine headache.

Now, some of you who've read my blog before may have heard me mention that I believe my headaches are actually triggered by sleep. In my experience, this is becoming more and more clear. It's almost like going to sleep puts me in a weakened state so that the headaches have a foothold. Like if I'm awake I have a fighting chance to resist them. And if I'm asleep, it's all over.

You know, its like one of those science fiction films. I'm sure there's been dozens. Where the hero or heroine can't fall asleep because that's the time that the alien entities take over your mind because you're in your most weakened state.

So it's 4:36 in the morning, I guess I got about four hours of sleep, and that's not bad for me. But if I'm lucky this pain in my head will fade pretty rapidly as it often sometimes does after I wake up and I'll be able to get back to sleep before the sun comes up.

It's five o'clock, my mask is cracking...

2008-05-23T05:07:00.006-05:00

It's five o'clock in the morning so I doubt I will be eloquent, charming, or funny. But I wanted to make a post because my head is killing me. It's not the searing white-hot poker pain of a cluster headache, I guess it's a migraine, hell, does it really matter anymore? All I know is I hurt a lot. 15 years ago it made a difference if it was a level 3 or a level 4... now its more about having had headaches nearly every day for years on end. I have crossed a threshold where I have some type of pain more than I don't and that sucks. I find myself almost nostalgic for the days of the powerful but short lived attacks that left me much more space in between to feel "normal".

I'm very tired at the moment and somewhat down. I got a lot done yesterday but not as much as I wanted to. And now it's five o'clock in the morning, and I fell asleep downstairs again but really didn't get any rest because I'm pretty sure I had a headache the entire time. And when it started hurting so bad that I woke up from it, I didn't feel like I could, or wanted to go back to sleep.

I'm sure that I will crawl up stairs a little while and curl up next my wonderful wife, sleep for a few hours and rebound mentally. I have no doubt that'll be able to face new day and new challenges with something that approaches normal human behavior. But I have to tell you, I really wish I didn't have to do this little dance. I really wish I knew what was like to just be me and not be pretending to be someone who I think is like me...

Honestly, I would really love to know what I am really like because after nearly 2 decades of having to try to push what I remember of myself and my personality through this wrecked, exhausted, and pain tempered shell, I'm not sure I know anymore.

I Get An Upgrade On Topamax

2008-05-06T20:45:00.002-05:00

First off, I woke with only the faintest of headaches this morning but mid morning I started to feel Mr. M take hold again. So I was nice and mildly migraine riddled for my afternoon appointment with my Neurologist.

Long story short. I am going up to 200mg of Topamax per day over the next few weeks. Yay! hmmm. Maybe not so yay... lets see how this stuff messes with me. : P

Side effects may include short term memory loss.

Side effects may include short term memory loss. So if you see me on the street ambling about... point me in the direction home.

Also, I am giving abortives another shot... Up the nose this time. I got some samples of Zomig in a nasal spray. Mostly for the migraines, as I have mentioned before, I figure by the time I know I am having a really bad cluster, I am 1/4 of the way done and pills of course, take too long to work so that is pointless. Imitrex injections make my heart race and cause bad rebounds for me, so that has been on my avoid list for years also. But I haven't tried the nose applied method, I don't think it was available back when I was really trying all the medications to abort clusters.

Still uneasy about Imitrex... I opted to try the Zomig. If it works on the migraines then I will get a prescription and I will have it on hand for bad cluster attacks as well.

Mr M. Continues to dance On My Left Side

2008-05-06T04:16:00.002-05:00

I woke up this morning and the migraine that started last night was still there. It continued on all day making it hard to focus on work. Around 6pm it started getting worse and eventually I fell asleep in the bathtub for a bit... Of course thats a big mistake and it really started to knock me around after that. I would say the level got to around 3-4 at least.

I had a intimate relations with my wife and although I am used to the explosion of cluster pain that follows "completion", the migraine experience is less familiar and therefor I was less perpaired... It really hurt.

I told her it was like I was awake for surgery and someone was tugging on my brain.

falling asleep... better hit post. Sorry if there are typos.

Bad day today

2008-05-05T03:58:00.004-05:00

I got my regular afternoon visit today but I made a bad choice to go to a movie at 4pm today and the 1-2 got exacerbated to a well over a level 3 and lasted all evening and into the night.

Oddly at around 2am the cluster started fading but it was replaced by a level 2-3 migraine which continues now at 4am and shows no sign of stopping.

Have I ever discussed the fact that movies trigger my cluster attacks? hard to say I am really out of it right now... very tired.

Also early this morning I had stabbing pains on the base of my skull in the back, very sharp very short and very intense.

I am going to try to sleep, I think I can sleep through the migraine pain.

The State Of My Headaches Address

2008-05-01T13:28:00.003-05:00

It's been awhile since I made a post about what's happening with my headaches, so I thought I would update the record. Shortly after dropping the Depakote and only continuing on with the Topamax the randomness of the headache pain seem to stop. I no longer had the flipping from side to side or the dancing between migraine and cluster style pain that I was experiencing. On the Depakote, I remember this being quite pronounced and feeling like I was getting cluster pain at all hours of the day randomly and little throbs that traded off with similar throbs of migraine pain. The timing seems random in the level of pain seems random. If I had an analogy may be the best the cluster headache is like a little demon that would set up a roar once in the afternoon somewhat loudly and then once at night very loudly. Whereas the migraine is little demon that sits there and shrieks somewhat loudly for hours at a time at random intervals whenever it feels like it. While the Depakote it was like I had thrown a blanket over them and this had infuriated them and they were running around in rage yelling randomly and trying to poke their heads out from underneath the edges.

So, on the Topamax I would say that I'm having much less trouble with migraine style pain in general

Why to mention before the randomness is pretty much stopped and I've fallen into a pretty predictable regimen, and although I know exactly when things are going to happen they are still pretty strange.

Here's what's going on...

I wake up every day with a headache, this is a vague pain that has a more all over feel that there is definitely a central nexus of it behind my right eye and it exhibits a lot of the same characteristics that I have come to know as being associated with my cluster headaches. For example, there is no light sensitivity, nausea, and if I strike myself sharply in the base of my skull with a meaty part of my fist repeatedly in a rhythmic pattern it has the same sensation of momentarily "interrupting" or "resetting" the pain. the thing I find strange about these is that they seemed to dissipate very quickly after I wake, almost as if being asleep is what is causing them.

Usually, within 30- 45 minutes these headaches are gone. Typically they are not very severe, I would say no more than level to on my scale. But this does make it difficult to get moving and be productive first thing in the morning.

The next symptom in this modified schedule is that I'm having a feeling of extreme fatigue legs for most of the morning almost every day. I've describe this feeling before it's very similar to the feeling I was having a while back where it was difficult to move any part of my body but now it all seems concentrated in my legs. This feeling of fatigue starts almost immediately after waking up and will continue at least into the early evening on most days. It's a sensation of extreme muscular exhaustion as if I'd been exercising my legs for hours and had just stopped. I really don't know what could be causing such a thing but it's kind of disturbing.

Around 2-3 o'clock in the afternoon to start developing what I have come to call a "long and low" cluster attack in recent years, before and after a round of serious high-intensity cluster attacks, my cycles have seemed to start performing a new trick. I used to get just a few mild attacks before and after the really bad ones, but now these mild attacks can go on for months it seems and the even more disturbing part is that instead of coming in short little bursts like a good little cluster headache should, they linger for hours and sometimes my afternoon attack doesn't fully end before what I perceive as my nighttime attack begins.

So about 2-3 o'clock in the afternoon I have been getting the level 1-2 cluster headache that lasts well into the evening hours sometimes as late as nine or 10 o'clock. But during the last few weeks the pain has occasionally spiked a little bit higher and once in a while it is continued on all evening.

And the last thing, my insomnia is just completely out of control the last few weeks. I'm really lucky if I get to bed before four in the morning. I guess it's just because I feel pretty bad for a large part of the day and in the evening I feel productive and alert. Most of the work I've been doing lately is late at night. Also, and I really don't have anything to base this on other than personal experience, I think I am afraid to sleep because I think that sleeping triggers headaches in me. It may not be rational, but I think subconsciously after years of what amounts to torture, I simply don't want to be asleep during that time when I would have the worst attacks because I think I'm less likely to get them if I'm awake.

What's really interesting to me is that my nighttime or should I say early morning attacks have always traditionally been the worst but recently they seem to have been somewhat absent. But honestly I don't know if that's an effect of the Topamax, not sleeping during those hours or just a natural progression of the cycle winding down.

So in summary I would say that I am in a cluster headache cycle that is winding down very very slowly. Over the last few years this is become fairly normal for me. So it's a little hard to judge whether the Topamax is having an overall positive affect. However, I do seem to be handling it a lot better as far as the side effects are concerned as opposed to the Depakote. And considering all the problems I was having with migraine headaches before starting these treatments and the fact that those seem to largely be not as much of an issue now makes me prone to continue giving the Topamax a chance.

So far, I have yet to have a cluster attack above a level 3 while on the Topamax so when I go back and talk to mind their own just about it, I'm likely to stick with the treatment if that's what she wants to do until the next time they get into a really bad cycle and see if it really prevents the big gun cluster attacks.

As annoying as it is to have headaches everyday, I'm pretty used to it. So waking up a level 1 or two and having a lingering low level cluster in the afternoon each day is something that I can pretty much do standing on my head.

Sure would be nice to not have to stand on my head though...

Clusters Eat My Music Career

2008-04-10T23:43:00.007-05:00

Recently I've been spending a little time reconnecting with the fine folks at cluster headaches.com. I'm not sure why I feel so uncomfortable around other cluster headache sufferers but I honestly think it's that seeing so many of us in one place is little overwhelming for me. Knowing that each one of these people hurt as badly as I have is honestly something thats difficult for me to deal with. For example, I noticed that there is a message board heading for parents of children with cluster headaches... I haven't been able to bring myself to click it. I had just never before considered that there were child suffers and the idea of such a thing nearly has my mind paralyzed.

So I go for long periods of time were I don't seek out the company of other clusterheads. I'm a bit of a recluse as it is, but all it takes is little bit of me feeling out of place for me to want to hide myself away. And if there's one thing the cluster headaches will do for you, they definitely make you feel out of place, out of sorts, and quite often out of your mind. This is not to say that I don't care, I think it's almost the opposite I'm afraid of getting way too involved. Getting overwhelmed by the community and the stories of every person in it. I can absolutely see myself doing that.

So I set up a new account (I can't find the information on my old one, I think he used some funky alias because I was afraid my boss at the time would find out about my cluster headaches and I would get fired) and I started poking around again. Well tonight I found the "getting to know you" thread and started thinking how I would describe myself and what I do. Well, this is the exact sort of thing that when discussing with other cluster sufferers I can be brutally honest with myself about and discuss in a way that I usually don't. So when "normal" people ask me what it is I do, I tell them I'm a graphic designer, a photographic illustrator, photographer, but mainly I'm a musician. I explain to them that I'm a vocalist in a somewhat progressive avant-garde vocal oriented genre defying band by the name of Payne's Grey... well when considering how I would describe what I do to other cluster suffers I realized that it would most likely admit I don't really do music much anymore.

I try, I aspire to do more, I keep my gear up to date, and talking with my wonderfully talented guitarist Shawn O'Neill about finishing a few of the songs that we haven't quite gotten done but the real story is that the cluster headaches have pretty much crushed my drive and ability to make music. Making music was never easy for me. Everything about it was very challenging time consuming especially when you consider the fact that I was so demanding of myself and wanted everything to be perfect. I want the music to be absolutely the best I could make it. And I'm really not willing for it to be anything less. Unfortunately, those goals are a little hard to reach when you feel like absolute crap half the time and you're exhausted the other half.
When I think back, and really kind of amazed they did it for as long as I did. I started getting headaches while I was in bands that were regularly performing live. I can remember several times being on stage with headaches and praying that my head wouldn't get any worse. Luckily, my clusters were on a very regular schedule for quite a while and I could pretty much count on a mild to medium attack around 2 PM to 3 PM and nothing more until the really heavy duty attack usually around 1 PM to 3 PM. So the chances of me still being onstage singing during a bad attack are usually pretty slim but I did sometimes get them off schedule and I kind of lived in fear of that. Although it was never a conscious decision that I recall, I wonder now if that's one of the reasons I stopped performing.

As far as creating and recording original music I kept going strong for many years after getting the headaches but looking at it in retrospect, I think I eventually just ran out of steam and I had to start narrowing down the things in my life and making choices about what to accomplish. I'm very proud of what I have done musically and I would say I have had modest success with but it is never been something that earned a lot of income, especially when you consider the amount of time that I put into it. I don't really ever remember having the thought "I need to stop making music because it's wasting my time" but with big chunks of my life being ripped away from me, with all kinds of strange medications being poured down my throat having all kinds of unsettling effects on my mind and focus, with exhaustion being heaped upon the last round of exhaustion that I never fully recovered from. I think it just became clear that I couldn't afford it... I couldn't afford the luxury of the time necessary for me to create music.

So now, I mostly do photography as a creative outlet, and doesn't require as much attention to detail, or a whole different set of disciplines from the photographic illustration that I do currently to earn a living. In other words, I get to do creative stuff and still simplify my life. Of course, if my recordings were to start selling to the point where I could justify it, maybe I could refocus on music as a career... but with the way the music industry is going the chances of an avant-garde emotive male vocalist who is a bit older making a living from selling digital music on the Internet is... well highly unlikely.

Where's my camera...

by the way if you want to hear this wacky music or see some of my goofy photos hit up these links:

PaynesGrey.com

Payne's Grey on the iTunes Music store

Something in Doc's Eye

Doc's Photography at Murdockscott.com

War Part 3

2008-04-10T14:13:00.004-05:00

OK, I think I am going to just stop responding to them because I am getting creeped out. The person I have been speaking with offered to have the lab mix a stronger batch for me. *blink* *Blink*

Honestly, I know they probably know what they are doing and have good backgrounds but that just seems reckless to me. After all, no matter where the substance comes from, it is still a chemical compound. So, I don't think I will be accepting the offer to be a guinea pig.

I could huff puffer fish pee too but in large enough quantities who the hell knows what THAT would do to me? But its natural right?

WAR! Part 2

2008-04-08T15:56:00.004-05:00

I received a reply from my new friends at S*nol and they kindly offered to make me a shill as well! I can give away free trials of the stuff weeeeeeeeeeeee. hmmmm. Set up trials of a product that I personally believe doesn't work.... hmmm let me think on that one.

This was my email back to them... They have one of those scary "DO NOT REPRODUCE" footers in their e-mails and although I think those are worthless and intended to intimidate in just these type of situations... I will honor their wishes, I don't want to stoop to a lack of respect similar to theirs, and I will not post any portion of what they wrote.

Name Withheld,

I would in fact like to see those clinical trials, but be aware that I am aware of how such things could easily be procured especially in our current climate of poor regulation. I wont necessarily see such documents as "Proof" of anything unless I could independently verify said findings. I see a sleep specialist, a neurologist at a well considered headache management clinic in Dallas as well as a general partitioner that has a special interest in treating headache sufferers. I will be sure to ask them all what they think of the research you provide. Maybe they could answer what it is I am doing wrong as to make it not work for me.

Maybe they could also shed that same light on the reasons if doesn't seem to work for several people at Clusterheadaches.com or why it does not seem to even be listed as a treatment option at O.U.C.H?

Maybe the documents will shed some light on why it doesn't work for the husband of the poor woman that just posted on my site about it. I am sorry sir, but saying it enough times will NOT make something true and from my perspective, that is what you marketing department is trying to do. I have my experiences and no matter how many people you send in to try to "spin" them, they are still valid. It would be best to stay clear of my blog in the future. Be aware that I am somewhat savvy and can see a visitors IP address.

The funny thing is, at first I was simply off handedly stating that it didn't work for me and that people should try it for themselfs.... its the aggressive behavior of you company that has put me at odds and made me feel like I have to defend my position and the people I feel I represent.

"person makes satement about personal space on the internet and internet having "no limits" and that the cost of being on the web is to have companies and individuals take advantage of that freedom"

Are you serious? No limits? Sir, we have the same limits we have ALWAYS had. It is a public space same as any other, and I expect your company to act the same way they would if they were in a park, mall, or on my green as it was viewable from the street... with respect. The fact that you choose not to do that speaks volumes.

Look, I know you may very well believe in what you are saying... but if you have never personally experienced a cluster headache you may just not understand. I think your company may just be barking up the wrong tree recommending this to people with cluster headaches. Where did they even get the people for the cluster studies? I just can't imagine it, Have you ever SEEN a person in the middle of a really bad attack? If they took 10-15 people having mild attacks then... pft. sure. but you know what? Most of us SLEEP THROUGH THOSE. We could care less about something that takes out the pain of a 1-3 level attack (2-5 being what I would consider a migraine level pain, yes... I have both) After 16-17 years I can do a "normal" level of headache pain without batting an eye.

So when I say it wasn't worth it to me... I mean it... it simply didn't offer me anything worth the effort and annoyance. Hitting myself in the base of the skull with a blunt object repeatedly offers more relief. Thats not a joke by the way, if you don't know what I'm taking about then you need to learn more about cluster headaches.

I don't know if your email was an attempt at an apology, but in some ways it had quite the opposite effect. heh. once again, you may have underestimated that you are dealing with a population of people who are constantly in a foul mood. (that was a joke, sorta)

Doc.

Sniff Sniff

2008-04-08T13:16:00.007-05:00

Post from this morning...

Sinol works for me as well. I have found that I must use it when my auras first appear or else it only takes the pain down a notch. Dont give up on it!
By Anonymous, at 4/08/2008 9:08 AM

Site visitors from that time frame:
9am 24.181.183.216 12 actions 5m 27s
Visitor detail IP address:24.181.183.216
Name this visitor IP lookup: ARIN / RIPE
Language:English
Location: Monroe, CT, USA
Oper. System: Windows
Web browser: Internet Explorer
Resolution:1024x768
Javascript: Enabled

Compare to:
Sinol USA
PO Box 73587 S. Main St. Newtown, CT 06470
(203)270-7755 Fax (203)270-6866
www.sinolusa.com

WAR!

2008-04-08T12:23:00.004-05:00

Last night the line in the sand was crossed... you do NOT come on to my land and set up shop without my say so. You DO NOT take advantage of the weakened and fragile state of the desperate people that may stumble into this place looking for answers or just the friendly voice of someone who knows what kind of hell they are going through!

I sent the invader a quick email last night asking when I could expect payment for their ad. They replied this morning with confusion. Here is the response to the Parts of the following is redacted as to not promote them more...

Sir,

As you may have guessed from my previous e-mail, and quite annoyed. I've been a cluster headache sufferer for over 17 years. I'm sure this is something that you know a little bit about as it is remotely related to the nature of your product. I think you would agree though, the idea that your product could offer complete relief for someone who suffers from the amazingly brutal pain of cluster headaches is a bit far-fetched. At least I hope you're not trying to market your product as a "cure" to these poor people like myself. That indeed would be a sick, sick joke.

Having said that, we as cluster sufferers will try anything and I mean anything for even small amounts of relief. So yes, on the recommendation of a friend, who merely has "normal" headaches, I tried your product. Honestly I found it to be ineffective against the tidal wave of pain that is associated with cluster headaches. To be fair I don't blame your product, it was unmatched fight to begin with. Cluster headaches are described as some of the most terrifying pain that can be experienced by a human being and yet allow them to survive.

So, sometime ago. On my personal blog where I relate and archive my experiences with having this debilitating condition, I mentioned in a polite manner that remedies of this type didn't seem to have much effect for me personally. I was very careful not to mention any product names, but explained that I had tried both available brands that I was aware of. I also encourage people to try the products for themselves as I am keenly aware that not everyone responds the same way to these type of treatments.

Since that time, the mere mention of the words "Capsaicin Spray" has brought about quite a few posts on my site glowingly praising the seemingly and miraculous effects of your product, always carefully mention it by name or saying how much better it is than the competitor. Now it is true that I am a bit of a cynic. But it is also true, but this is the digital age and the wild West of internet advertising. It seems as if almost anything goes, and anything is fair game. So I personally was polite to these posters and respectfully disagreed with them repeating my position that even though the product didn't work for me everyone should draw their own conclusions. Other visitors to my website, were not as kind and seemed to identified them as shills and marketing wonks and went as far as calling them non-sufferers. Personally, I have to agree. I find it very hard to believe that anyone who suffers from cluster headaches would find your product to be anything more than just a minor tool in their bag of tricks to fight this horrible affliction. But at the same time, I didn't want to misidentify anyone or falsely berate someone who did feel that they had gotten some relief from using your product. I am sure some feel they do. So, I've quietly seethed and held my suspicions at bay.

Until last night, my God! Do your people ever have giant ones.
I got a ping from my blog showing that I have a new comment post and I went to go see what it was and I found this jewel...

*********************************snip**************************************
p said...
All New Natural Nasal Spray: Sinol

"My Headaches are gone! Thank you so much." – Jean Burns

“I eat a lot of hot peppers,'’…“I for some reason started doing that in 1992, and I swear by it. I think it keeps my metabolism revved up and keeps me healthy.” – Hillary Clinton

Capsaicin, an ingredient that comes from the pepper plant and is found in most spicy foods. – SinolUSA

Sinol All Natural Nasal Spray with Capsaicin

Sinol is the first over-the-counter nasal spray created for allergies, sinus problems and headaches. Our homeopathic all natural nasal spray is made effective with Capsaicin and provides relief of sinus pressure, allergy symptoms and headaches, including sinus, cluster and migraine headaches and post nasal drip. Nasal sprays for headaches, allergies and sinus problems sprays work faster than pills or liquid form because nasal sprays go directly to the problem area. Pills or liquids needs to be digested and absorbed before they become effective. Sinol relieves pain and pressure associated with sinus problems, allergies and headaches in minutes!

Headache:
Headaches are caused by the contraction of blood vessels around the eyes and across the forehead. Capsaicin is effective in dilating constricting blood vessels and is the main ingredient in Sinol. For fast relief of migraine, cluster, sinus, premenstrual, menstrual and tension headaches. Sinol is a fast acting all natural remedy that can relieve headaches when they first begin. Nothing works faster than Sinol Nasal Spray for headache pain!

Sinol is extremely effective for migraines, cluster and tension type headaches. You will experience relief in 2-12 minutes. If your headache persists follow up immediately with 1-2 sprays.

For Allergies/Sinus:
For relief of indoor/outdoor allergies and sinus conditions.
A daily regimen of Sinol will keep you breathing clearly and easily each and every day.
If used in a regular daily regiment (3x a day) Sinol can prevent allergy symptoms throughout the allergy season.

Sinol will drain sinuses and keep them clean and bacteria free. For severe sinus problems such as infection or sinusitis, use Sinol daily.
The all-natural ingredients in Sinol perform a specific task in relieving headache symptoms:

Aloe Vera Extract, Eucalyptus Oil. Rosemary Extract, Sea Salt, Ascorbic Acid (vitamin C) and Capsicum 4x,

For more information call us at 1-888-******* or http://www.*********/
*******************************snip*****************************************

Now THAT, is just plain as day. It's an advertisement. Placed in my personal blog. Without my permission.

Let me ask you something, do you see anything wrong with that? Do you see a problem here? Do you understand why I would be upset?

Sure, I could delete it. But why should I have to? Why should I have to defend myself against companies trying to promote themselves on the site were all I'm trying to do is provide my friends and family and interested people information about what is going on in my life with my head, with my pain. If your people had looked at my blog they would have seen that I don't even have ads for myself! none... not even the little google ones. I don't want there to be any question about my motivation... so no ads.

You're dealing with people who are in pain... in the case of cluster sufferers, a great deal of pain. You don't really see anything wrong with spraying your digital graffiti on our personal space, and if you're willing to do this, then how can I be sure that Mary or Ted or Jake who posts about how much they love your product are not just marketing people doing spin control. Its just so damn wrong on so many levels.

You need to find a new way to promote your product. Have you ever tried advertising, with you know, dollars? It's a lot more of a direct relationship and leaves the people you're dealing with feeling a lot less like they've been abused. Perhaps you should consider that.

I don't think I will be removing your post. Instead I think I will make an example of it. I cannot tell you how much I absolutely despise this type of behavior. Any goodwill I had toward your company is completely eroded. Good job!

Doc.

Tolerance of Topamax

2008-03-18T17:03:00.002-05:00

I have been a space cadet.

I think it was the combination of the topamax and Depakote that was really giving me fits. I still feel quite a bit loopy with just the Topamax but its better that being on both by far.

So how "out of it" does Topamax make me? Hard to Judge... Cluster cycles themselves make me feel that way, so the only way I could really know would be to stop taking it and see how my cycle is at the moment without the meds. I'm pretty sure the plan is for me to stay on some preventative for the rest of my life.

What the hell should I to do? Stay confused in between cycles and hope to prevent new ones or enjoy my potential "Time off" to the fullest. ugh.

Topamax day 4: Cluster Pain Pushes Back Up

2008-03-18T16:32:00.003-05:00

I don't know what to make of this but I have had sort of a "relapse" yesterday.

A bit of background...
Over the last few years my cluster cycles have taken forever to "wind down" and during those long slow curves I get what I call my long and low attacks. This can be described as pain in the cluster area that feels like a typical mild attack but lasts for hours instead of the usual 45-90min. These long attacks are never over around a 2-3 on my scale an are most likely to be about a 1. They are never severe and usually come in the afternoon as opposed to my severe attacks which come around 2-3 am. I try to describe it to people like a a spring... the harsh attacks are when the spring is compressed the long and low attacks are when the spring is relaxing and when the spring is filly relaxed... it is a straight line and I am out of my cycle. I sometimes think that I report these or notice them more due to my reluctance to take pain medication. Maybe other people are getting them but are wisely taking meds that let them not have to deal with moderate pain.

So, I had a bad cycle right in the middle of trying the Depakote but the bad part of it didn't last very long and I started the long wind down that I have grown accustomed to. While taking Depakote I didn't perceive these long and low clusters as much. I sorta felt like they were more wavy and spiked, and in recent days I was feeling like the cycle may be over.

Yesterday I got hit with a good old level 2 behind the right eye, long and low classic 2pm start time lasted most of the evening.

Today I can feel it again... So either I never fully left my last cycle and these are just the dying pangs of it that Topamax fails to suppress as well as Depakote did, Or I an starting a new cycle already.

Off The Depakote

2008-03-15T03:15:00.003-05:00

So tonight was the first night that I am taking the full dose of Topamax and no Depakote. We will see how that goes. The last few days have been better as far as headaches go, but like clockwork the fatigue has set in. Today I had the "Strange Fatigue in the legs" feeling I have described in my posts before and all through the day I was just "conking out" even though I have medication to prevent daytime sleeping due to my sleeping disorder... well, I guarantee you that someday they will discover that my headaches, odd sleeping behaviors, Learning disorders, and tendency to get headaches of every kind at the drop of a hat are all part of the SAME neurological disorder.

Mark my words.

Ack Just fell asleep... sitting up on the floor hunched over my keyboard at the coffee table. No real warning I was just writing this then I was dreaming about getting kicked out of a 7-11. I bolted awake because I think I wasn't breathing well and here I am wide awake again.

Someone really needs to do a study me, I wouldn't mind making my living as a freak of science... Oh did I mention that my triglycerides are like 12 times what is considered high but all my other cholesterol and such is normal? and I am not some huge mountain of a person... just a bit typically overweight. Its just some odd genetic mishap.

I think I don't conform to my doctors word view of what a living human being should be. lol

A disturbing tought...

2008-03-09T12:00:00.003-05:00

I am still in pain, my wife said I was moaning the entire time as I tried to sleep for a few hours this morning.

I think this is unlikely but I found myself wondering this morning if the migraine I was having now was the same one I was having for weeks and weeks before I started the Depakote.

I found myself wondering if this was my new "normal" state. If the part of my brain that was malfunctioning and causing migraines is now permanently malfunctioning and the Depakote was the only thing keeping it in check.

Like I said, I doubt that is what is going on... at least I hope.

Just to remind readers... I am a long time cluster sufferer, I hate to confuse things by talking about migraines here, but recently I have developed pretty severe migraines as well. They are significantly different in feel and intensity but can also be nearly as annoying in some ways, like the fact that they don't go the hell away. I am used to Clusters... I have learned to deal with that beast. But migraines thats a totally different skill set. You know how after a Cluster breaks, how sometimes you can feel so much relief, the pain just falls away, leaving you with all the adrenaline and endorphins pumping. I have to admit sometimes I feel almost good after an attack. I feels like I should not have survived, yet I did...

Migraines are nothing like that... just a boring long banshee wail of really annoying pain that makes it hard to move, think, enjoy anything... for long long long stretches of time. Oh, and just for fun the banshee kicks you in the side of the head now and again for fun. When the headache does die down, it takes its own sweet time.

I am afraid that my future is to be filled with a rotating lazy susan of severe headache pain flavors. Yay!

Dazed, Confused, and Very Behind On Posts...

2008-03-09T05:43:00.002-05:00

I am really out of it the last few days. I am way behind on posting about my med switch. Feeling like my sense of time is way out of whack.

Last night I stepped down to 500mg Depakote and stepped up to 75mg Topamax daily. I Really don't know any more if I was more "confused" on the Depakote than I am now... at the 2000mg I recall being really freaked and just disoriented but I don't really recall feeling that unhappy about it. This last few days is just pissing me off.

It could be the effect of the "crossfade" between the two drugs. Seems like a weird way to do it if you ask me, Having two different mind effecting drugs in your system at the same time... but I am trying to be a good patient and do what the doctor tells me.

So For the last few days I have had a steady annoying low level headache that is on the side I get migraines and has the characteristics of a migraine. Therefore if it walks like a duck....

I think I still have fading weak waves of my "long and low" pain in the cluster area but no recent intense cluster attacks so I would say that the cycle is "done-ish" for the moment. This "long and low" pain in between intense attack cycles has made me wonder recently if I am in the first stages of becoming chronic.

Also about a week back I had scalp sensitivity n the back left of my head. I also had the same "raw nerve" feeling at my left eye and my left ear... for around 3 days I would get very sharp shooting pains that would make me cry out if I was not carefully paying attention. Now that I think of it, the migraine I have now is most likely the same pain... just "spread out". Meaning I have had this headache for a week. No wonder I am grumpy emotional and behind on posting to my blog. : P

Sure its not a cluster every night at 3am... but dammit, what the hell should I get clusters AND migraines... that is really not cool.
As I tell my wife sometimes, "If there if such a thing as Karma, I must have done something REALLY evil in my last like to deserve this."

Topamax-Depakote day 3

2008-02-25T04:12:00.002-06:00

Still very disoriented, I am having less visual weirdness today but I still am having problems focusing my eyes and also putting together a sentence. I would describe it as having a thought in my head but not being able to find the right words to say it... very unnerving for me.

Headache for most of the day getting a bit worse in the afternoon and evning, cluster-ish in nature.

Topamax-Depakote day 2

2008-02-23T03:30:00.003-06:00

Yesterday I started to taper off Depakote. At the same time I am starting to take 25mg of the topamax.

I feel very strange. Pressure in my head... still have pain... confusion is really bad. I am also seeing spots and jumping little "illusions" in my field of vision. I have been thinking I see movement out of the corner of my eye but nothing is there. this is really bad when I an on the computer. I am having trouble typing this for example. its like I cant focus my eyes.

I seem to have problems stringing sentences together... many times over the last 2 days I have not been able to get an idea that is in my head out of my mouth.

I hope this calms down.

Depakote officially a bust for me

2008-02-21T03:25:00.001-06:00

I have spoke with the doctor and we are in agreement that depakote isn't going to have the desired effect. At 2000mg per day it just made me mostly feel out of sorts and confused... and I was still having daily headaches.

Starting to take Topamax tomorrow and starting to taper off the Depakote.

New Dosage Evaluation, Day 13

2008-02-17T12:32:00.000-06:00

I woke with a headache. Around a one in level. I am disoriented and even more spacey than usual.

New Dosage Evaluation, Day 12

2008-02-16T03:05:00.001-06:00

Bad headache tonight. on the migraine side, very tired.

New Dosage Evaluation, Day 11

2008-02-15T04:24:00.002-06:00

Another long headache this evening that started around 6PM. By 8pm it was fairly bad approching the range of a level 1. Cluster-ish in nature. Afraid to sleep I think for the last few nights.

4:30 am ATM and still having headache pain. Not feeling like sleeping still.

New Dosage Evaluation, Day 9 (I think)

2008-02-13T12:00:00.002-06:00

Long headache this evening that started around 8PM. By 10 0r so it was getting in the range of a level 1. At 4AM I can say that it may be up to a 2 now and then. It is distinctly cluster-ish in nature.

New Dosage Evaluation, Day 3

2008-02-07T13:52:00.000-06:00

in the morning hours I have been suffering through a pretty constant wavy pain. it moves all around my head and like in previous days seems not to feel distinctively like a cluster or migraine.

I also got several sharp intense stabs the left side in the back of my head.

still very spacey and out of it.

New Dosage Evaluation, Day 2

2008-02-06T23:18:00.000-06:00

No major pain today, still some very low dull pain. Also felt some brief but fairly intense "sweeping" pains that didn't feel particularly like a cluster of a migraine. Still feeling a new flavor weird and spacey. on reflection, I think this is not really new with the Depakote. I have complained of it before, but maybe its a bit stronger now.

The doctor said that most anything she gave me as a preventative would likely have this kind of effect.

Update: latter in the evening I started feeling really out of it and I started getting little "visions" every time I closed my eyes. My brain turned these odd shapes into even odder little creatures. They wernt frightining... but they should have been. heh

But I have a dark imagination at times and making up fun little monsters is not something I would get to disturbed by.

I am betting that sort of thing will fade as I get used to the new dose.

Interesting tid-bit from the NYU science line site about "icecream headaches"

2008-02-06T10:42:00.000-06:00

Poking around this morning I found this article:
Why do I get ice-cream headaches?

In this bit of text that tries to explain the phenomena of "brain freeze" they mention clusters.

"Interestingly, migraine and cluster headaches seem to be caused by a similar, albeit probably differently triggered, activation of the trigeminal nerve that may cause pain in other regions of the head. This means that for those of us who have never experienced the searing pain of migraines or cluster headaches, an ice-cream headache may be as close as we get."

I love the part about the doctor that requires medical students to induce ice-cream headaches as part of his curriculum.

"“I think that all physicians and physicians-in-training would benefit and should be made to experience the exquisite pain of ice-cream headache to help them understand, empathize and appreciate the urgency for sufficient prophylaxis and treatment of the pain of their cluster headache patients,” wrote Dr. Eric Lewin Altschuler"

Well played sir, I salute you!

I found the comparison of "ice cream" headaches and clusters to be a useful tool in explaining to people what is going on with me. I will sometimes say something like "Imagine a brain freeze headache..." People will usually respond with something along the lines of "OH Wow! I hate those!" Then I will say "now imagine that 2-8 times more powerful, lasting 45min to almost 2 hours and imagine getting one every night at 3am for 2-5 months... People start to understand a bit better.

We should be careful not to trivialize the intense suffering some migraine and cluster victims go through, but as I recall Ice cream headaches were some of the most intense headache pain I had felt before I started getting clusters, so using them as a point of reference like Dr. Altschuler seems to me like a very good idea.

So for any people reading this who don't have serious headaches... Just feel lucky the next time you get a brain freeze that they only last for a very short while... then go hug a migraine or cluster sufferer. :)

New Dosage Evaluation, Day 1

2008-02-05T23:12:00.000-06:00

No major pain today, some very low dull pain. Feeling very weird and spacey, but in a different way then the clusters themselves make me feel. I am also very down emotionally but that is likely do to other factors going on in my life.

New dosage of Depakote

2008-02-04T15:04:00.000-06:00

I saw my neurologist today and we agreed to try a bit more Depakote before moving on to something else. So I am up to 2000 mg a day. Lots of little posts will follow this month as I attempt to track the effect this new dosage is having, if any.

I am trying to see if I can filter these boring posts in some way or at least make it simpler to find the useful or interesting stuff on this Journal.

Another user of psychedelics reports success and encourages me to try it

2008-02-02T02:47:00.000-06:00

A fellow sufferer left me a comment yesterday about his/her experience with psychedelics. Maybe I am being over sensitive but for some reason I felt compelled to write a long response to them about my position. I am sure I was just reading too much into the post and they just wanted to strongly encourage me to try it. But since it ended up being so long winded I decided to post it as a new entry. It covers a lot of stuff I was feeling and probably should be considered less of a direct response to them as much as a stream of conscious inspired by their post... if that makes sense. heh

anonymous said...
My cluster headaches have been put under control by the use of magic mushrooms. Not liking the mind-altering effects, I have found that small monthly doses are equally, if not more effective at headache prevention than large doses, and can even abort a headache in progress. Prior to using mushrooms, I fought a several-year-long battle with these monsters - I was full on chronic - I had no breaks. What kept me alive then was daily use of melatonin - which, at the correct daily dose, could keep my headaches at bay. Psilocybin and melatonin are very similar molecules - the difference being that I needed melatonin daily, and psiloybin only monthly or even less. It took me over six months to locate a source of magic mushrooms once I made the choice to try this treatment. I hope for your sake that you can put aside your skepticism and fear of the law. Meanwhile, please try a daily dose of melatonin. After a few weeks, you should be able to guage how much melatonin is enough - I cycled between 1.5 to 6 milligrams - some people have needed as much as 9 mg. a day.

Doctors have no answers for this kind of pain, and because the market is so small, probably never will. Without the internet and the information I found there, I would have killed myself long ago. Now I live a healthy, normal life like I did before my first attack.

Anonymous,
It's good to hear that this is working for you! I hope you never have to feel the pain again.

I know you are trying to be helpful and if I come off sounding a bit gruff please don't take it personally but I think you may have a few misconceptions of me that I would like to address.

a). I don't blindly trust or even "like" many doctors.
b). I would not call myself "skeptical" about self medication or non traditional cures.
c). I am not "afraid" of breaking the law.

Doctors:
I am in full agreement that doctors don't have the answers, god knows I have seen enough of them and taken a shopping list of drugs that they prescribed. A casual reading of my blog will quickly show that I often feel the frustration we all do about our doctors.

I do however hope that the medical profession will someday be able help us. You are very right when you imply that the pharmaceutical companies have no reason to do the research necessary to find a "cure" due to the rareness of clusters but like many other discoveries it may come as a side effect of other research or just a greater understanding of what makes humans tick.

So, I have no "allegiance" to doctors but in many cases I do belive they are trying to help us. The first time I heard the words "Cluster Headache" they came from a very concerned emergency room doctor. He told me that sometimes people that have them get so distraut that they take their own lives and he took the time to convince me that as bad as they hurt... I would survive them.

This was many years before web resources were available, and unlike yourself I was completely in the dark about what was happening to me for quite some time before this Doc had the humanity to go out on a limb, make what at the time was a rare diagnosis and more importantly, a personal connection.

He gave me courage and knowledge that day and I saw the pain he felt for me in his eyes... He was genueinly sorry that he could not really help me. I believe many of our doctors are like this, they WANT to help us and they are embarrassed and saddened that they can't. Perhaps that makes some of them seem extra distant and cold.

That emergency room doctor telling me about clusters and being honest about what to expect most likely saved my life. To this very day when I am trying to calm down during a severe attack, I repeat some of what he told me "I can survive the pain, It can't kill me." as part of my mantra... The things we scream/yell/chant during an atack...I'm sure you know what I mean.

I have to force myself to go to doctors... I hate going through the motions knowing full and well that nothing will likely change. But one thing I know, taking ourselves out of the "loop" won't help the condition be understood sooner.

My current Doc has been very straight with me and I am doing my best to give her a chance to help and learn abut what will and won't work for me.

Skepticism:
I have tried many things that have been "guaranteed" to work over the years by sufferers on the web... none of which has been more than slightly effective. I don't see this as unusual really. I think 2 things may be happening.

1). A self administered remedy actually works... for a percentage of people but maybe not all.

As an example you mention melatonin. Well I have taken melatonin off and of for years due to sleeping disorders and I have never had it effect my cluster cycles. Recently I was taking 3-6mg each night during the time I had my worst cycle in years. I think clusters are tricky and what works for some may not work for others.

2). Coincidental lulls in cycles... I have had clusters for a very long time and I have had them be constant for years with 2-3 attacks a day and I have had bad cycles for equally long periods. Most of the time I have a 4-6 month cycle with a completely random period of being relatively pain free. I think sometimes I actually have "overlapping" cycles. Like a new one is coming up as an old one is going down. So here is the point... As an example, the medication I am on now got a dosage increase and a few days latter I started a series of the worst attacks I have had in quite a while then within a few days the cycle started quickly ramping down and within 2 weeks I was having attacks that I consider mild, a few weeks later I was relatively pain free for about a week and have been fluctuating in the mild pain range ever since.

Now did my new medication Cure me? Nah. I don't believe it did... I think it was just my time for my cycle to end. But a overly hopeful person may shout to the world that "It's finally over!" Problem being that I don't think we hear as much about it if the attacks come back.

c). Breaking the law:
I have always tried to play roughly within current boundaries of society. But I am not a straight laced angel. I have personally avoided the drug culture because I WAS close to it and saw it ruin so many people. Some can handle it with little effect, others get lost and crash... no different than alcohol really but then you won't get you thrown in the slammer for having a well stocked bar.

If I feel that I can get what I need to try it safely and without risking myself or my family then I will. One thing that may explain my position better is that I LOOK like someone who may be involved with drug culture. I have hair down to the middle of my back and I usually sport a hipster fuzz on the chin. So I have lived my adult life assuming that people will cuff me first and ask questions latter. I would not say I an "afraid" just maybe realistic and careful.

So, I am not suggesting that psychedelics don't work at all... Just that they may not work on everyone and that I am taking a cautious stance until I can confirm it myself.

Sorry if I seem easy to offend, I am hurting at the moment. Actually the worst cluster pain I have felt in a while. (new cycle ramping up?) Good luck to you. I genuinely hope you have found your answer and maybe I will join you soon. :)

Peace,
Doc.

Psychedelic substances still being reported to have great benefits.

2008-01-31T18:15:00.000-06:00

I got a short email from a kind person pointing me to information on LSD & Psilocybin as methods for treating clusters and letting me know that he had success with it. I realized I really haven't said much on the subject in this blog so I thought I would post my response to him.

Name Withheld,

We sure are the lucky (cursed) ones aren't we?

I am very glad to hear that you haven't had attacks in over a year. That is great! There have been a few times since I started getting Clusters (15-16 years ago) that I have had long natural reprieves... but you are right the evidence provided by you and other people willing to risk taking the substances mentioned seems to be much more than coincidental lulls in your cycles. I have known about this treatment for a many years and have been keeping up on the stories from people who have tried it to some degree. It's not at all surprising to me that those it has an effect for many people, they do dramatically change brain chemistry and my (wild) guess would be that they "reset" us cluster suffers in some way.

I guess I am a bit cautious of being on the wrong side of the law so I don't trust casual methods of acquiring what would be needed to try the experiment. Its funny because as a musician, I have been in bands since I was 17 and was constantly surrounded by it but I avoided getting involved in the culture myself so now all these years later I don't have any trusted contacts. heh. I would never order anything like that through the mail as some people do.... I just couldn't trust it.

I was very close a few months back to breaking down and asking around to my old band mates if they knew how to "acquire" still. I was ready to self medicate and try it... But the thing that stopped me was that I finally got into see a neurologist at a pain clinic that is supposed to be top notch and since I had tried to get an appointment with them before and been told I they were not taking new patients, I decided to give that a try. Well, I am committed to sticking to her treatment for the time being.... interestingly she has me on Anti-seizure medication and although I would not say that it made the clusters vanish... It did effect them. It made them inconsistent and "wavy", possibly less intense. So I get the "approved for use" mind altering substance and get little to no relief and you take the stuff doctors won't touch with a 10 foot pole and get great results. That sounds about par for the course...

Currently, My cycle is taking a long time to wind down as it has started doing over the last few years... I think this is natural as opposed to the result of the doctors treatment. So I am feeling pretty decent at the moment, but I guess if it starts ramping back up again I will most likely ask the doctor to put my treatment on hold and see if I can break the oncoming cycle using the methods you did.

Over the years, have gotten used to the clusters... I know what to expect, I know I will survive the attacks, and I know that I can bounce back... But as you know, nothing compares to that pain and I like any clusterhead will do anything to get free from it.

Good luck to you bud, I know what it's like and I am glad you are getting a (hopefully permanent) break from it.
Doc.

My current feeling on LSD & Psilocybin as a Cluster Headache Treatment is that there is something to it... too many people seem to be getting results. But I also know just how desperate cluster sufferers can be for something to finally take the pain away. I think sometimes we hurt so much that we squeeze our eyes tightly shut and imagine something works while trying to convince everyone else it works too. Then we can take comfort (if only for a while) that a "remedy" that may just be coincidental, or not work on more than a few people, is finally the answer... I hope serious study can be done, I really do. But I am not counting on it.

Meanwhile, I was not just blowing smoke, I do intend to try this myself at some point if possible. I may be a bitter, beaten, cluster-ridden, rag doll of a man... But I can still muster a bit of hope.

Recent history

2008-01-04T10:16:00.000-06:00

I woke with a very bad pounding headache on the left side this morning. It had the features of a typical migraine (level 2-3) and started slowly ramping down after being awake for an hour or 2. I know I had been sleeping through it for a while because I remember almost waking up several times. I would say that at its most painful it may have ben a 3 or so in level.

I know I haven't been posting much in the last few weeks. Over all I am feeling much better. Around mid december the morning headaches and lingering clusters started to become only a minor annoyance. I was hopeful that I was finally leaving the cycle I seem to have been stuck in for a long time.

The last part of december I was having periods of headache free existence maybe even a few days in a row where I would only get twinges and the occasional quick spike. Those where interesting really I would just be doing everyday normal stuff when a harsh cluster like pain would spike and only last for maybe 20 sec total. Many times I would be talking with Katy and just sorta cry out a little "ahhh!" and then start the conversation where I left off. I'm glad she is so understanding of these things.

Well, That brings us to the new year and I unfortunately have been feeling lingering clusters growing in intensity more of the spikes and a return of the morning headaches. My hope is that this is just a short "dying gasp" of the cycle that has been clearly winding down and not the start of a fresh one.

Also I should mention I have had the odd aching/weak leg thing going on for several days now. I think if it weren't for my wakefulness medication I would be having problems staying awake during the day as that seems to accompany the leg thing.

Bad headache on waking

2007-12-06T10:41:00.000-06:00

I awoke this morning with a pretty bad headache. Around a 2-3 on the migraine side. In the past few weeks when this has happened they seem to fade within an hour of waking but this one is hanging on... I don't think it will be a good day.

Doc's official capsaicin spray word

2007-12-05T13:27:00.000-06:00

I have noticed some comments popping up in my blog with opinions about these products. These posts are mostly from anonymous posters or from accounts that only seem to be active for short times. Now, these may be people that have used the products and gotten relief from them and thats great... (a friend of mine uses them on occasional migranes and seems to like them very much) but I suspect it may also be whisper marketing so I thought I would make a definitive post of my thoughts about these products.

My personal experience with both brands is that they are nearly worthless.

Both seem to knock down my pain a notch (cluster and migraine) but only briefly and only a small amount. If used as directed, they have no value to me... I would quickly exceed the maximum dose for only minor relief.

I suspect the hope of the people that produce the products is that you will ignore the directions for use and get "hooked" on the slight easing of the pain, shooting this stuff up your nose over and over like it was candy.

Also these sprays seem to be more effective on my migraines but for bad cluster attacks... they are pretty pointless.

Bottom Line:
Try them and make your own decision. Who knows, they may work a lot better for you. Just please don't use them beyond the dose in the directions... just remember that "natural" does not mean "safe". Who knows what overuse of this stuff does.

Me, I just tossed them in the drawer that is over flowing with "cures" that did little to nothing.

2007-11-14T10:57:00.000-06:00

Once again I woke up briefly when Katy left for work and was cognitive enough to realise I had a bretty nasty headache that I was sleeping through. It was at least a level one. By the time I got up about an hour later it had faded to the dull annoying pain I am still feeling. this dull pain seems to be switching sides in waves and is somewhat constant.

I am now convinced I am sleeping through level 1-2 headaches every night.

2007-11-13T00:41:00.000-06:00

level .25 pain for stretches on the migraine side.

I briefly woke up around 8:45 and realized I had a headache while asleep. When I woke again later it was fading. I think I am having headaches each night while I am sleeping.

Katy confirms this, she says I am still moaning and making pain noises in my sleep in the morning after she gets up.

Also my legs have really been aching the las few days.

2007-11-12T00:31:00.000-06:00

I was very sleepy all day. Only minor headache pain mostly on the migraine side.

2007-11-11T11:25:00.000-06:00

Besides having some short bursts of 1-2 pain on the cluster side I was mostly pain free. I was really really tired though. Super sleepy even with provigil.

I tried to take a short nap in the afternoon and I think I crashed for like 3 hours.

2007-11-10T11:24:00.000-06:00

Some short periods of mild pain. extremely tired. I also had weird little bursts of cluster side pain, 1-2 in level lasting for just a minute or so.

Best day I have had in a long time.

2007-11-09T12:28:00.000-06:00

Somewhat bad pain all morning... 1- 1.5 range all on the migrane side, very distracting.

I am hopeing it will leave soon.

Now real cluster pain yet today, just faint twinges.

Medications List Update For 2007

2007-11-08T16:04:00.000-06:00

List Of Medications Murdock Has Taken…

The list first part of the list was before I started getting migraines on any regular basis so all these medications were evaluated based on how effective they were against the short intense cluster attacks I was accustomed to at the time.

Aleve (naproxen sodium): doesn't do anything for cluster pain.
Isolyll: "makes me stupid but will kill pain" (1996)
Amitriptylene (1996) Seemed to have some affect (no further notes)
Maxalt: bad side effects. (2000)
Zomig: seemed to sorta work a bit (2000)
Imitrex: (injection) resulted in horrific off schedule rebound (2000)
Prednisone: steroids. Makes me twitchy, insomniac. Unsure of effectiveness (2003)
Relpax: I got samples, but I don’t think I got a chance to use them (2003)
Vioxx: banned by the FDA (2004)
Axert: prescribed in 2003 but not used; trying right now (2005)
Frova: major side effects, dizziness, dry mouth, nausea, etc, but maybe helped (2004)
Atenolol: may take 2-3 weeks to work. Can't tell if it did anything (2004)
O2 on 2 different occasions. Some effect, but it never seemed to end the attack or offer more than minor relief. (2005)

Between late 2005 through mid 2007 I just sorta “toughed it out” I think, I wasn’t having too many rounds of bad clusters and when I did get a cycle it was short lived so I was trying to not take medication if it was not necessary. In 2006- early 2007 I started getting more long periods of constant dull cluster pain that was around the level of a really bad “normal” headache and I felt I could just deal with those but in July of 2007 I got started on the freaky 3 week migraine that lead me to seek help again.

Depakote 250-1000mg: seemed to “change” the headaches a bit more they started coming and going more quickly and randomly and switching sides and type sometimes quite suddenly, Depakote is defiantly having some effect but overall I am not sure if it is making me have less pain overall, I am starting to have less severe headaches but I wonder if that’s due to the medication or just natural improvement. ( August 2007)
Depakote 1500mg: Shortly after the increase to 1500mg of Depakote I have had a return to the “classic” cluster cycle with powerful attacks happening 1 or 2 times per day in addition to the lingering waves of migraine pain. This cycle lasted for many weeks and is just now starting to wind down. (September 26th – November 8th 2007)

2007-11-08T13:37:00.000-06:00

Annoying migraine pain most of the morning today. level .5 mostly short twinges of cluster pain.

The evening hours were a bit better, mostly just felt spacy and "out of it".

2007-11-07T13:29:00.000-06:00

Long bout of annoying pain in the morning hours (both sides) followed by a break of a few hours and then a more intense level 1 stretch of pain that lasted from around 3pm and never ended... I fell asleep with it.

the pain was odd, I think it may have been a migraine along with long low level "washed out" cluster waves.

2007-11-06T13:35:00.000-06:00

Not a bad day. Low level waves of migraine with twinges of cluster now and then.

2007-11-05T02:48:00.000-06:00

The last few days have been much better.

I have had some headache pain occasionally pretty much every day but these have been mostly mild. Level 1-3 pain has become much more rare and its short lived when it does happen. Tonight I had a short burst of 2-3 pain in the cluster area actually it felt really strange. I had to sit down I rattled my head and it sorta felt like something was "loose" in there. Kinda like a migraine concentrated in the spot a cluster would normally be.

I think I should also mention that I think I am having mild headaches while I sleep. Most mornings, when I wake I still have some pain that lingers for a while and I have been having bad dreams that I think are a reaction to the annoyance of the pain.

Other than that I have the common feeling of being unable to focus and feeling "stupid" that lasts for some time after a cluster cycle. Plus I have been getting the "cluster without the pain" sensation.

2007-10-31T15:59:00.000-05:00

Woke with mild headache on the cluster side, lasted all morning..

Level 3 migraine started around 2pm Blah, blah, blah, blah.. sucks to be me, business as usual.

This is about the story of the last week... no big attacks just lots of tiring pain in the "mild /annoying/level 1" range. A few spikes into the 2-3 range.

I think its safe to say that my cluster cycle is tapering off... but as has become common in the last few years I don't think that means I will be headache free. Merely that the pain in the cluster area will be dull, mild to annoying and last for hours if not days, (have I described my "compressed spring" theory?" The more recent addition of the migraines which have their own schedule will insure that I don't get to have any significant time without "company".

Day of frustration and disipointment

2007-10-23T14:40:00.000-05:00

Woke with no headache

Accidentally took 1500 mil of depakote at 7:45 only a few hours after my last dose before bed at 2:45... called the dr. and was told I would feel sedated and to stay at home and have someone check on me.

Decent and productive morning, got a lot of stuff done.

Very spacy/out of it so far all day.

annoying pain in long and low waves on the cluster side mid afternoon.

2:30pm starting to really feel tired and drowsy... also very out of it. mild/annoying pain continues... possibly more constant now.

6pm Katy came home and found me languishing around in one of my "not really able to get up" episodes. I had been crashing repeatedly since around 3pm falling asleep over and over... I guess since I had the extra depakote in my system I was more prone to a fit of extreme sleepiness. The most disappointing aspect of all this is that since sleep seems to be a trigger for my headaches I now have the worst headache I have had in several days... just when I thought I may have been getting to the point where they were tapering off.

Twinges of cluster like pain @ level 1 and steady migraine like pain around 2 with waves/throbs into the 3 range I think this has been going on for a while while I was asleep.

9pm migraine weaker over all level 1 waves on both sides sometimes dipping dow to "annoying" for the rest of the evening.

2007-10-23T14:16:00.000-05:00

The last several days have been somewhat uneventful at least in terms of severe pain.

Thursday and Friday were mostly short waves of level 1-ish pain off and on throughout the day sometimes spiking into the 2-ish level. Also I had a pretty constant "Sub 1" level of annoying pain. If I recall I woke with headaches those days but they were mild 1-ish and didn't last more than an hour.

Saturday I started feeling really spacy and "out of it". I sometimes get long periods of "feeling stupid" when I am coming off a long cluster cycle. but this was even more confusion and lack of focus than I am used to. Also I had some short waves of level 2 pain but largely felt better... some short waves of what felt like a migraine on the left side also. but it never got too bad. Mostly I was just spacy, unable to focus and had annoying waves of confusion, mild pain and the classic "cluster that doesn't hurt" feeling"

Sunday I crashed big time... I was tired and moving like a turtle on downers... Very "Swimmy/spacy/out of it" Less pain but very sleepy... more of the "stupid/cluster that doesn't hurt" feeling.

Monday was mostly pain free very short little waves of cluster pain/discomfort as well as some waves in the migraine side... Much more spacy/out of it.

I am getting very bored with keeping up with this day-to-day reporting... I may have to just start doing the highlights again.

2007-10-17T09:48:00.000-05:00

Woke with a 1.5-2 headache. Mostly in the cluster spot but I think it is also layered with a mild migraine. I was having nightmares again. an hour and a half later I still have it at the same level.

About 1:30 it became a solid 2 with short waves of level 3 pain.

The pain became a solid 3 for a while at around 2pm then died down to annoying.

from around 5pm on I have waves of 1-ish pain with spikes of level 2 now and then.

2007-10-15T23:42:00.000-05:00

Woke with a 1.5-2 headache. I was having bad nightmares that makes me think I may have slept through a long attack in the 2-ish range.

Annoying waves of pain back and forth all day and night.

2007-10-14T23:44:00.000-05:00

Woke with 1-ish headache all over bolthsides more like a "normal" headache than a cluster or migrane.

Annoying waves of pain most of the day and evening.

level 1-ish cluster pain starting around 6... ramping up to 2-ish around 8 and lasting for about 2 hours.

the rest of the evening was waves of cluster pain in the 1-ish range

2007-10-13T23:49:00.000-05:00

Woke with no headache,

annoying waves of pain bout only off and on though the day and night.

One spike of 1-ish cluster pain around 7pm.

2007-10-12T23:51:00.000-05:00

Woke with 1-2 ish headache on the cluster side, lasted for about 2 hours.

reasonably mild waves of annoying pain both sides off and on all day and night.

One short wave of level one pain around 6pm

If I had a nighttime attack I didn't wake from it.

Migrane Morning

2007-10-11T08:58:00.000-05:00

Driven awake this morning by bad, slowly throbbing migraine-ish pain around 6am. I kept falling asleep in the lulls for a while but it eventually slowly climbed up to around 4-5 in level which is quite annoying for a migraine. In fact, from my limited experience with them it seems to be about as bad as they get, at least for me. Its hard to really compare them to clusters though because the pain is so different.

Although for me, a cluster attack has a much greater potential for severity of pain, I kinda hate the bad migraines as much due to their long lasting nature and ability to rob me of energy.

Its now 9am and its down to a 1 or so in level.

Annoying waves of pain now and then throughout the day.

At 7:45pm I got a cluster attack while exercising that got up to around a 3 and lasted for 2 hours.

The annoying waves of pain returned after that.

They are NOT done with me yet

2007-10-10T10:45:00.000-05:00

I was driven awake this morning around 6:00am by a particularly nasty cluster attack. I was really tired so it reached a higher than normal level before I woke (2-3). While I was still asleep I was having vivid and disturbing nightmares. When I finally got out of bed I was very exhausted so It was like I was being puppeted by the headache... almost like I was sleep walking er, sleep head-aching?

it ramped up quickly and got up to like a 6 with sharp waves of pain in the 7-8 range I think there was a migraine "overlay" that I felt on both sides of my head and was pretty bad. So it was another one of my patented "2 for the price of 1" headache episodes. I got into the bath and that always hurts some as the blood pressure changes I guess, but this time it was excruciating... I thing mainly due to the migraine component reacting very strongly to the change combined with the cluster spike I am more familiar with.

It lasted for over an hour but I cant be sure because I kept fall asleep any time the pain lulled enough. Eventually I crashed while still in the bathtub and after I woke it had only gone down to a solid 2 in level and there it has remained all morning... I have work to do and I am ay a huge disadvantage at the moment for focusing on such detailed tasks. Hopefully it will die down a bit soon.

2007-10-09T11:07:00.000-05:00

Woke with 1-2 level pain in the cluster area that lasted for 2 hours or so.

Felt pretty good the rest of the day, some twinges of pain and spacey-ness throughout the day.

3 days with no attacks above a 2-3 is pretty good for me lately. Starting to feel like I could be coming out of the cluster cycle... I have no idea how that will effect the migraines.

2007-10-08T11:14:00.000-05:00

No headache when I awoke... nice.

I don't thing I experienced much in the way of pain on this day. one of the best days I have had in a while. I think I fell asleep briefly in the after noon and had a short lived level 1 cluster after and maybe a few short waves of annoying pain and dizziness.

2007-10-07T11:19:00.000-05:00

Honestly I don't recall much from sunday.

I think I woke with a mild cluster and I know I was irritable in the evening.

Overall I think it was a decent day with no major attacks.

Maybe Katy remembers more.

Bad Morning Attack

2007-10-06T03:50:00.000-05:00

I was driven awake this morning with a cluster attack that got up to a 6-7 and lasted for an well over an hour at that level. When it broke it never dissipated completely as is happening more and more It felt like a 2-3 for several hours and then settled into a 1 or so for the rest of the midday.

Feeling bad in the head and also tired I made the mistake of relaxing and fell asleep around 2pm and woke about an hour later with a 3-4 ramping up. That attack lasted for about 45 min but once again never fully went away it was around a 1 till about 7pm and there after has dropped to the nagging annoying sub 1 range.

2007-10-04T02:18:00.000-05:00

Well I was going to put this down as a good day...

I woke around 8am with a pretty bad cluster attack about a 3 or so but it never got much worse and I rode it out and for the feat of the day I felt pretty good. Some nagging pain off and on and a few low lever waves on the cluster side.

But then around 11pm a bad cluster started ramping up It was a solid 7 for a long time so it was pretty bad... I did the pacing moaning thing for about an hour. what sucks is that after it broke, It never went away completely... its now 2:25 and its hovering around a 2 with waves of 3ish pain. I have no reason to believe it will stop... I have "passed out" a few times because I am so tired from lack of sleep but I keep getting woken up by the waves and spikes. I think I am just going to have to lie in bed and hope it dies down enough to sleep through.

Very sucky.

2007-10-03T06:08:00.000-05:00

Woke with a 1-2

about an hour after waking I started to feel like I had no pain. I quickly rushed to get as much done as I possibly could and was amazed at how much more productive I was while pain free...

unfortunately Around 5:30pm a cluster started ramping up... I dropped the errands I was out running and headed straight home... It got up to about a 3 before I got to the house, I thought about pulling over and calling Katy to come get me but I was close and just stayed focused and was very careful. The cluster attack lasted for about an hour and a half. I had some mild twinges afterwards but started to feel better again. maybe just annoying waves the rest of the evening.

Here is an odd thing... its 6:16am, I haven't gone to bed. I am not tired in the least. I feel sorta "wooshy" I think from the Depakote that I took around 1am. But overall I feel pretty good and I am doing lots of stuff... I think I dont want to sleep because I feel good if that makes sense. Why wast any time I have without pain by sleeping?

Its not conscious mind you, I just keep thinking of things I want to do and I know that tomorrow these small tasks may seem like giant hurtles through the fog of a constant nagging pain in my head.

2007-10-02T06:06:00.000-05:00

Woke with 1-2 level pain in the cluster area that basically lasted all day sometimes spiking to a 3.

I think I had a 4-5 around 6pm but I forget... maybe Katy will remember.

It became a bit lower in the late evening but I had the pain from the time I woke till the time I fell asleep

2007-10-01T20:48:00.000-05:00

4am:
I was roused from sleep by a cluster headache I dont remember much about it however I am starting to really run out of energy and the days and attacks are sort of running together for me. I think It was about a level 4-5 I drew a bath and cant tell you how long it lasted I fell asleep in the tub and thats were Katy found me this morning when she got up for work. I went back to bed and got a couple hours of sleep.

When I woke I felt pretty good and was sorta of thinking I would get a break today. I did some shopping and picked up the different brand of headache nasal spray because the other night when our friends asked if it had worked for me I told them it had no effect but since it was a different brand I had tried (same active ingredient) they seemed to think that might make a difference and I am trying to be open minded about homeopathic remedies even though it seems unlikely that a few herbs would have much effect against the terrifying pain that I get. But all morning and afternoon I felt pretty good, deeply tired, but mostly pain free.

5:40pm:
I made the mistake of letting myself fall asleep around 5:00, I dont know if I have expressed this before but I think one of the worst "triggers" I have for cluster headaches is sleep. any time I take a nap during a cycle I am almost guaranteed to get a attack shortly after waking. Today was no exception. It ramped up slowly but maxed out around a 5-6 for about 20min. It started falling off but took a very long time to decrease in strength. actually it has never completely fallen below a 1 or so... Its 9pm now and I expect I will have it for the remainder of the evening.

2007-09-30T18:06:00.000-05:00

Bad cluster attack that woke me from sleep at 3am. Lasted a lot longer than normal and got up to around a 6-7 in level... at some point twords the middle it became a steady 5 with rapid waves of extra pain this part was the most annoying and lasted for a very long time it seemed. by the end of the attack it was more like a 3-4 that drug on untill I just felt too tired to stay awake.

I think Katy may have gotten sick durring all this. I tried to find her to see if she was OK but she was hidding away from me.

I got sort of emotional during this attack. I dont remember what I said but I think I was being pretty defeatist. I am just hoping I didn't upset Katy too much.

I have had a weird day since.... I woke up with level 2 cluster pain and decided to prove to myself once and for all that extra sleep doesn't fix it, doesn't help. I let myself go back to sleep and didn't take any provigil this morning. Every so often when the pain would crest a little bit, I would wake up and then immediately try to go back to sleep. I guess because of how tired I am from the last few days of bad headaches, I was actually able to sleep for quite a long time, but every time I woke up I would feel just as bad if not a little worse.

I don't know how many times I woke up and went back to sleep, but it was many many times. Eventually around 3 p.m. I decided that the experiment had failed and that sleeping more wasn't going to do anything, and that in fact, my feeling that sleep seems to bring them on or make them worse is correct. I eventually got up. I've had lingering pain in the cluster area around level 1-2 since then. It's now 6:30 p.m.

The lingering level 1-2 pain in the cluster area continued till I bedtime, we went out to meet with friends at a bar where they have a trivia competition. I avoided drinking, and really was not much help on the trivia... I played a different game of "pretend to be normal".

2007-09-29T18:06:00.000-05:00

Slept through the night and got up around 10:30 a.m. with annoying pain.

3 p.m. had a short intense cluster attack, around a 5. Only lasted about 30 minutes.

For the rest of the evening I felt annoying dull pain, sometimes rising above a level 1, off and on throughout the evening, even up to the time I went to sleep. I was at a party celebrating my birthday, so I had a shot of alcohol. I don't know whether that had any real effect or made things worse, but it didn't seem to at the time.

Nice Birthday so far...

2007-09-28T12:21:00.000-05:00

The pain is out of control today...

I started waking up around 5 am for short periods as the waves of pain reached a level I couldn't sleep through (1-2) I would then pass out and go back to the nightmares I was having. During one of these short periods of being awake I made note that the pain seemed to be switching sides although I don't know if I was cognitive enough to judge if it was a "wrong side cluster" or migraine-like in nature.

When I got up I had a throbbing pain in the cluster area that was well into the 1-2 level. I tried to relax and ride it out but around 9:15 it started to ramp up and became a full on attack that had rapid waves of 6-7 and a baseline of about a 5. This is a bit unusual, most of my clusters don't seem to "throb" as bad as this one did.

So here is the real sucky part... when it "broke" it never fully went away, it only dropped to around a 2 with waves approaching 3 for like the last 2 hours.

I am hoping for some relief soon...

4:45pm
The level 1-2 cluster pain has been pretty much constant since the last time I posted. Now on top of that I feel like I have a pretty intense "migraine" layered with it, it I feel it mostly on the cluster side but its more spread out and often throbs on the other side as well. Light sensitivity, feeling queasy, wanting to lie down and rest...all the things associated with migraines... along with the pin point cluster pain that makes you want to move and such.

its very tiring.

2:05am
The pain continued the rest of the evening. eventually the cluster "layer" faded mostly leaving the migraine "layer" (still on the wrong side). The migraine became a bit worse and I also started getting sharp stabbing pains in the back of my head that would make me wince and flinch. I still feel pretty crappy. But I guess I am going to try yo go to bed anyway.

This has been a simply horrible day for the most part. Thank god for my wife, she gave me presents, got me a tasty diner, rubbed my head and generally made me have a little joy amidst the pain.

2007-09-27T11:52:00.000-05:00

I didn't seem to have a nighttime cluster attack, at least not one that woke me up... I think it may be possible for me to sleep through a 1-2 nowadays.

I woke with a mild headache in the cluster location, annoying, but not too bad. Around 11:15 I noticed a classic cluster attack beginning to ramp up. It's now 11:58 and it is up to around a 4 in the intensity. It feels like it may get worse before it breaks.

I am dictating this using my voice recognition software and it's very difficult. It doesn't seem to be able to understand me. I guess because of all the gasps and moans. I made just post this and correct it later when I feel better.

OK, that got really bad... probably around a 7 maybe even 8 in level. It also lasted a really long time. Especially the bad part. Sometimes the attacks ramp up slow and only peak at hi levels of pain for a relatively short period of time... its more likely that they ramp up quickly and hit a plateau of high pain then break and ramp down in stages. this one stayed at the high plateau level for much longer than usual... its hard to judge but at that level of pain 5-10 minutes can seem like an eternity. Mercifully, it started to break at 12:35 and very quickly dropped several levels in pain. Its now 12:45 and I am experiencing twinges around a 1 in level. Hopefully I will get a bit of a break this afternoon.

Severe daytime attacks always bother me, If I ever needed to take a regular 9-5 again, how would I handle something like that? In my last 2 office style jobs I had a lot more freedom than I would have in most jobs, and back then I was almost never getting really bad ones during the day. I just cant imagine being able to "vanish" from my cube for 2 hours and have it be ok. Hopefully my freelance work will continue to come in.

Annoying pain on the cluster side for the rest of the day. around 8PM it got a little nasty but only ended up getting up to about a 2 for an hour or so. Around 10pm the pain diped below the threshhold.

Big scary clusters are back

2007-09-26T17:30:00.000-05:00

On advice of Dr. Watts' office, increased Depakote dosage by 50%. Now taking three 500-mg pills each night. Started that Tuesday night.

Wednesday morning about 3 a.m., woke up with a cluster that quickly ramped up to a level 8. Haven't had one at that level in a while. Lasted a long time too. Eventually started to break a little. Was able to fall back asleep around 4 a.m.

Annoying pain on the cluster side all through the morning and afternoon. Sometimes felt like it was going up to a 1.5 or a 2.

In the afternoon about 5 p.m. got another cluster attack, this time about a level 6.

These are the two worst cluster attacks in recent memory. I've had really painful ones but two that are this severe, one right after the other, hasn't really been happening too often in the past couple of years.

Waves of pain in the cluster area continued after the evening cluster attack and never really left sometimes breaking the 1-2 level for short peoiods. At around 9pm I felt like it might break for good but within a half hour I was hurting again... its after 11:00 now and I don't thik its gonna completely stop any time soon.

All and all, this has been a truly crappy day.

2007-09-25T17:39:00.000-05:00

Felt pretty good most of the morning. Mild waves of pain off and on throughout the day.

Visited Dr. Watts' office for a follow-up. Talked about not taking over-the counter medications for a while. I don't really think they do anything anyway.

They wanted to increase the Depakote dosage to 1500 mg each night.

Cluster attack (1.5-2) around 7pm annoying pain the rest of the evening.

2007-09-24T09:38:00.000-05:00

Woke with no headache. Mild cluster started ramping up around 12:30. Never got very bad, maybe around have one or two. Faded by 2:00p.m. to a slight uncomfortable feeling in the cluster spot nagging low-level pain the rest of the evening and also a pretty strong bout sleepiness around five o'clock

All in all, in manageable day. I found myself thinking that if most days were like this one I wouldn't have much problem working around headaches.

2007-09-23T09:28:00.000-05:00

Woke up with no headache but started feeling paint fringes around 10:09a.m.. Around 11:20 a classic right side cluster started ramping up...

11:40 now about 3 in level

11:55 up to around pay for or five

12:15 breaking

12:30 gone

Around 1:00p.m. a lingering pain developed in the cluster spot and slowly ramped up to about a 1 to to by 5:00p.m..

7:30p.m. down to just annoying again

Nagging low-level pain for the rest of the evening on the cluster side.

2007-09-22T09:12:00.000-05:00

I slept until morning but had a headache when I woke. Experienced waves of uncomfortable pain and most of the morning.

Had a 45 minute cluster attack around1:00p.m. reaching around a three or so in intensity. Waves of pain thereafter on the cluster side for the remainder of the day.

2007-09-21T01:57:00.000-05:00

3:00a.m... I woke with overall headache, but I was to sleepy to remember details. I know I had kept waking up in pain over and overafter that. By around 7:00 a.m. it started getting worse or maybe I was just awake enough to understand the level of pain. During the lulls, I would continue to fall asleep and have nightmares about not being able to do my job of managing a shoe store because of exhaustion and headaches.

Around 7:30 I stopped falling asleep due to the pain being more constant and possibly more intense. It started ramping up quickly on both sides. By around 8 o'clock it had faded on the migraine side by had gotten worse on the cluster side about a 3-4.

Around 9 clock the cluster had "broken" and started quickly disipating leaving only in mild migraine and that I was hopeful it would not last long but unfortunately it started building in intensity again and became really bad about 10:00 it's now 10:40 and it has calmed down some but I think it is going to last a long time... I'm sad.

By around 1:00p.m. I started feeling better, see tired, but only mild pain.

Waves of uncomfortable loans of pain return in the evening and I also started feeling very sleepy again.

2007-09-20T18:15:00.000-05:00

Bad cluster attack again this morning at around 5-6 am.

The interruptions in my early morning sleep are not good, sometimes those few hours is the only time I get any rest.

waves of annoying but moderate pain all through the morning and afternoon. also bouts of sleepiness despite taking provigil this morning but then I really have not had much rest the last 2 nights.

2007-09-19T18:20:00.000-05:00

Very bad cluster attack this morning around 5am lasted for the normal 1-1.5 hours but I was really out of it so thats mostly a guess.

Annoying waves of pain switching sides during the morning hours which was bad because I had a teaching gig at 1 PM. I still felt like warmed over crap as I drove to the assignment but luckily I was able to suck it up and started feeling better not long into the session.

I felt pretty OK during the evening but I still think I had some pain off and on.

2007-09-18T18:19:00.000-05:00

Only mild pain... felt good for the most part. I began to imagine that maybe it was a trend.

Doc's Cluster Headache Journal

Serious research? At Last!

Sleep, How Can It Be Wrong?

Christmas Day

Some Bad Non Clusters and Fear

Update On Recent Cycle

The beast returns, with a vengeance

Son of a...

Maintaining A Low Roar

As Much As I Hate To Do It...

I Don't Use The Kip Scale Personally

Latitude Effect?

Long Absence

Fed up with doctors...

What a pitiful little thing you are...

Recent Headache activity

Long And Low Cluster Pain, Side Effects Update.

Reduced Topamax Dosage Update

Reduced Dosage On Topamax

Topamax Possible Side Effects

Sleep=bad post 687

I am still having headaches in the morning.

I Want To Zap My Brain With Magnetic Pulses

The Return Return

I always feel better... when I am away.

Meat Gone Bad

Don't Dare Fall Asleep! They Are Coming for you!

It's five o'clock, my mask is cracking...

I Get An Upgrade On Topamax

Mr M. Continues to dance On My Left Side

Bad day today

The State Of My Headaches Address

Clusters Eat My Music Career

War Part 3

WAR! Part 2

*Sniff* *Sniff*

WAR!

Tolerance of Topamax

Topamax day 4: Cluster Pain Pushes Back Up

Off The Depakote

A disturbing tought...

Dazed, Confused, and Very Behind On Posts...

Topamax-Depakote day 3

Topamax-Depakote day 2

Depakote officially a bust for me

New Dosage Evaluation, Day 13

New Dosage Evaluation, Day 12

New Dosage Evaluation, Day 11

New Dosage Evaluation, Day 9 (I think)

New Dosage Evaluation, Day 3

New Dosage Evaluation, Day 2

Interesting tid-bit from the NYU science line site about "icecream headaches"

New Dosage Evaluation, Day 1

New dosage of Depakote

Another user of psychedelics reports success and encourages me to try it

Psychedelic substances still being reported to have great benefits.

Recent history

Bad headache on waking

Doc's official capsaicin spray word

Medications List Update For 2007

Day of frustration and disipointment

Migrane Morning

They are NOT done with me yet

Bad Morning Attack

Nice Birthday so far...

Big scary clusters are back

Sniff Sniff