Doc's Cluster Headache Journal

I Get An Upgrade On Topamax

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

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

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

Side effects may include short term memory loss.

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

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

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

Mr M. Continues to dance On My Left Side

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

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

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

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

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

Bad day today

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

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

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

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

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

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

The State Of My Headaches Address

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

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

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

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

Here's what's going on...

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

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

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

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

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

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

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

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

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

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

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

Clusters Eat My Music Career

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

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

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

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

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

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

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

Where's my camera...

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

PaynesGrey.com

Payne's Grey on the iTunes Music store

Something in Doc's Eye

Doc's Photography at Murdockscott.com

War Part 3

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

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

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

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

WAR! Part 2

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

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

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

Name Withheld,

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

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

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

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

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

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

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

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

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

Doc.

Sniff Sniff

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

Post from this morning...

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

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

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

WAR!

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

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

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

Sir,

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

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

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

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

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

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

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

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

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

Sinol All Natural Nasal Spray with Capsaicin

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

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

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

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

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

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

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

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

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

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

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

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

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

Doc.

Tolerance of Topamax

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

I have been a space cadet.

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

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

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

Topamax day 4: Cluster Pain Pushes Back Up

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

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

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

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

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

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

Off The Depakote

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

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

Mark my words.

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

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

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

A disturbing tought...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Topamax-Depakote day 3

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

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

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

Topamax-Depakote day 2

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

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

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

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

I hope this calms down.

Depakote officially a bust for me

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

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

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

New Dosage Evaluation, Day 13

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

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

New Dosage Evaluation, Day 12

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

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

New Dosage Evaluation, Day 11

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

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

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

New Dosage Evaluation, Day 9 (I think)

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

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

New Dosage Evaluation, Day 3

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

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

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

still very spacey and out of it.

New Dosage Evaluation, Day 2

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

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

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

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

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

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

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

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

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

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

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

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

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

Well played sir, I salute you!

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

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

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

New Dosage Evaluation, Day 1

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

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