"Empty Cycles"

I want to clarify my last couple of posts a bit if I can.

For a while I have believed that something is happening in my brain and that the cluster attacks were just the worst and most final result of that problem. Of course this is all speculation, just a few notes based on a few things I have read and my personal experiences, I really don't want anyone to confuse it with science...

Leading up to the cluster attacks I always experienced feelings of "confusion, being less able to focus, feeling cloudy in my thinking, aching in my legs and hands, general fatigue, extreme and bizarre daytime sleepiness. I don't think everyone who has clusters experiences these same things... So I wonder if they are somewhat like the various "aura" that migraine sufferers sometimes (but not always) report.

So here is the thing, over the several years as the actual headaches have gradually become less and less frequent, I would say that I can still "feel" the cycles... its as if the "event" that caused them is still happening, but perhaps my body has learned not to overreact so dramatically.

So I still go through many weeks of feeling like a weakened, less intelligent, dazed, hollowed out version of myself even if I don't get the soul crushing pain stabbing me behind the eye 2-3 times a day. Before when I was feeling stupid, achy, grumpy and weak, it was easy to blame it on the pain (except for the fact that these symptoms proceeded the onset of pain by weeks). So I begin to wonder if this is something I will have to deal with for the rest of my life. When people say that the clusters go away eventually, are they free from ALL effects of them or are they just lucky not to have a distinct "aura" like I am describing? Not a altogether bad trade off mind you, anyone who has suffered cluster pain would take that deal in a heartbeat.

Oh then there is the other trade off... as the clusters get weaker, they increasingly last longer.

So, I still feel lucky even though I have a weak little cluster banging annoyingly at the back of my eye demanding my attention like a petulant child, angry because I am doing my level best to ignore it.

Creativity And Clusters

Just a note on this new cycle.

For the last few months I have been working very hard on a new song. It is not directly about Cluster headaches, but it is about being the owner of a body riddled with odd health problems and how that effects how the world sees you and how you eventually see yourself.

I have been very focused on getting this piece of music done, or at least polished to a point that I would feel comfortable letting others hear it. But a couple of weeks ago that drive just left me... it drained away and I could no longer find it. I tried, but it was gone and the song sits NEARLY finished  like so many others from my past. I have been cursing myself... hating myself over it. Thinking that I am a incredible idiot and weak minded for not being able to push past my fear of what people will think of the final song, and I am sure that is part of it.

But this morning I realized something else.

When I was working on the song a lot and making great progress... I felt good. I was not in a headache cycle. I was free of not just the pain but also the "Aura" symptoms that go along with my clusters. Around the time that I started loosing focus on completing the song is about the same time I started feeling the effects of a new "cycle aura". Now reading this, you may think that those two things seem obviously related, but looking out from this flawed brain... its not always so easy. I am always trying to trick myself into thinking that I feel better than I do... That I have just a little more energy so that I don't let people down. Sometimes I fool myself into ignoring a LOT of discomfort. So waking up to the fact that you have increasingly felt like crap for several weeks and eventually giving yourself a break is not that odd really.

Spooky to think about the effect it has had over the last 20 years... Looking back, I realized that I was most productive musically before my cluster headaches began and  although I made some of my best music after the clusters started... I slowed down dramatically. And, I also stopped performing live. It was so long ago. I can't recall if it was a conscious decision, or more like something that just naturally happened. I can remember being afraid of what I would do if I were to get an attack on stage... The idea that I would be exposed like that, that I might let down my bandmates in such a dramatic way, the fact that almost no one would understand or be forgiving. I am certain that it dampened if not halt my performing in front of people.

I can recall that even though my headaches have slowed down a great deal and the chances of it happening were slim, when I did a recent reunion show with one of my first bands... I was scared to death that I would have an attack and not be able to perform. I almost said no to doing the show.

So, just a reminder to myself... finish the damn song! (but its OK to wait till you feel better).

Visit from a nearly forgotten and unwelcome acquaintance

For a couple of weeks now I have been complaining that:
  • I feel "out of it"
  • I am "20% less sharp" than usual
  • I can't think
  • My legs ache
  • I constantly feel fatigued and sleepy during the day

All these things are what I would consider my classic cluster cycle precursors. All the things that would happen to me in the weeks leading up to a long stretch of cluster attacks. Since I have been taking Topamax, and as I have gotten older and the attacks have become less frequent and fierce. Because of that, things have been a bit more muddled and less defined and I think I started wondering if I had imagined that these "symptoms" were really related because I was still experiencing them now and then but often without the headaches themselves.

But here I sit, with clear cluster pain growing behind my right eye and I wanted to type this to myself and to others that may also feel these same "aura" type symptoms leading up to a cycle. It is so clear to me at this moment that it is all part of the same thing... and when I get the "aura" symptoms without the painful clusters, I am still having a "cycle", just one that doesn't spawn the end result of crushing pain. This of course could be unique to me, Clusters seem to be odd that way. I wonder if its a bit like auras of migraine sufferers, some see spots, some get dizzy, some have no aura at all.

I wonder if it is something going off the rails a tiny bit in my brain. I start feeling dumb, unable to concentrate, constantly tired, I have muscle aches, problems staying awake, tonight I even felt dizzy for a bit (I never get dizzy) and then, if I am unlucky, the old familiar pain creeps in. I don't expect it to get very bad tonight, I haven't had many really horrific attacks like I used to in quite a while now, but even if this doesn't crest into a full blown cluster cycle, I still expect to feel "weird, tired, and confused" for at least the next several weeks.

The pain in my head is getting to the point where it is a little hard to concentrate on typing so I will end this post by reminding anyone who finds this blog that for many people like me, Cluster headaches start to go away eventually! I know how painful and hard it can be while they are going on... I may never by 100% free of them, but I am so much better than I was just a few years ago. Don't lose hope.