Doc's Cluster Headache Journal

Monday, June 27, 2011

Serious research? At Last!

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.

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.

Wednesday, January 19, 2011

Sleep, How Can It Be Wrong?

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.

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Sunday, December 26, 2010

Christmas Day

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.

Friday, November 19, 2010

Some Bad Non Clusters and Fear

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.

Monday, August 02, 2010

Update On Recent Cycle

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.

Monday, May 24, 2010

The beast returns, with a vengeance

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.

Friday, February 05, 2010

Son of a...

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.

Saturday, January 09, 2010

Maintaining A Low Roar

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.

Monday, December 28, 2009

As Much As I Hate To Do It...

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

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. : )

Saturday, November 14, 2009

Latitude Effect?

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. : )

Wednesday, June 10, 2009

Long Absence

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.

Tuesday, December 02, 2008

Fed up with doctors...

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...

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

Thursday, November 06, 2008

Recent Headache activity

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.