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.

It's five o'clock, my mask is cracking...

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

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

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

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

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...