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.

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

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.

Long And Low Cluster Pain, Side Effects Update.

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

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

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

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

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.

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

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

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.

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

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!

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.