Topamax-Depakote day 3

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

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

Topamax-Depakote day 2

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

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

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

I hope this calms down.

Depakote officially a bust for me

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

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

New Dosage Evaluation, Day 13

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

New Dosage Evaluation, Day 12

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

New Dosage Evaluation, Day 11

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

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

New Dosage Evaluation, Day 9 (I think)

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

New Dosage Evaluation, Day 3

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

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

still very spacey and out of it.

New Dosage Evaluation, Day 2

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

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

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

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

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

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

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

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

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

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

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

Well played sir, I salute you!

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

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

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

New Dosage Evaluation, Day 1

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

New dosage of Depakote

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Peace,
Doc.