Doc's Cluster Headache Journal

Latitude Effect?

noreply@blogger.com (Murdock Scott) — Sun, 15 Nov 2009 04:25:00 +0000

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

noreply@blogger.com (Murdock Scott) — Thu, 11 Jun 2009 01:59:00 +0000

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...

noreply@blogger.com (Murdock Scott) — Tue, 02 Dec 2008 15:40:00 +0000

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...

noreply@blogger.com (Murdock Scott) — Tue, 02 Dec 2008 15:25:00 +0000

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

noreply@blogger.com (Murdock Scott) — Thu, 06 Nov 2008 14:57:00 +0000

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.

noreply@blogger.com (Murdock Scott) — Sun, 02 Nov 2008 06:58:00 +0000

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

noreply@blogger.com (Murdock Scott) — Thu, 16 Oct 2008 15:21:00 +0000

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

noreply@blogger.com (Murdock Scott) — Sun, 05 Oct 2008 06:45:00 +0000

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

noreply@blogger.com (Murdock Scott) — Mon, 29 Sep 2008 20:29:00 +0000

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

noreply@blogger.com (Murdock Scott) — Tue, 16 Sep 2008 07:55:00 +0000

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.

noreply@blogger.com (Murdock Scott) — Sun, 17 Aug 2008 19:48:00 +0000

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

noreply@blogger.com (Murdock Scott) — Tue, 22 Jul 2008 01:46:00 +0000

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

noreply@blogger.com (Murdock Scott) — Mon, 21 Jul 2008 04:00:00 +0000

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.

noreply@blogger.com (Murdock Scott) — Tue, 08 Jul 2008 23:01:00 +0000

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

noreply@blogger.com (Murdock Scott) — Wed, 04 Jun 2008 15:43:00 +0000

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!

noreply@blogger.com (Murdock Scott) — Wed, 28 May 2008 09:43:00 +0000

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...

noreply@blogger.com (Murdock Scott) — Fri, 23 May 2008 10:07:00 +0000

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

noreply@blogger.com (Murdock Scott) — Wed, 07 May 2008 01:45:00 +0000

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

noreply@blogger.com (Murdock Scott) — Tue, 06 May 2008 09:16:00 +0000

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

noreply@blogger.com (Murdock Scott) — Mon, 05 May 2008 08:58:00 +0000

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

noreply@blogger.com (Murdock Scott) — Thu, 01 May 2008 18:28:00 +0000

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

noreply@blogger.com (Murdock Scott) — Fri, 11 Apr 2008 04:43:00 +0000

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

noreply@blogger.com (Murdock Scott) — Thu, 10 Apr 2008 19:13:00 +0000

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

noreply@blogger.com (Murdock Scott) — Tue, 08 Apr 2008 20:56:00 +0000

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

noreply@blogger.com (Murdock Scott) — Tue, 08 Apr 2008 18:16:00 +0000

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

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Doc's Cluster Headache Journal

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*

Sniff Sniff