Doc's Cluster Headache Journal

Thursday, May 01, 2008

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...


  • Hi... this is Liz Tapia. I've made a couple of posts on here before. Glad things are getting somewhat better for you. You may want to talk to your doctor about getting Imitrex injections. My husband is on 125 mg Topamaz per day, and when a cluster attack begins, he injects the Imitrex. He tells me the attack subsides in just a few minutes. It can be quite pricey though, so insurance coverage is important. Take care, Liz

    By Anonymous Anonymous, at 5/02/2008 5:08 PM  

  • Hi Liz,

    Good to hear from you!

    I responded to your last post back in this thread

    But It was just a few days back so I am betting you didn't see it. Sorry, I am slow. : )

    I have shot up the old Imitrex before. I was doing that back in 2000 and it worked surpassingly well to abort attacks. I would even go as far as saying it is the BEST abortive I have ever tried. But it did something really strange in me.

    Back then I almost never got off schedule attacks. I would get attacks in the afternoon that sometimes would break 4-6 in level but for the most part I could work a 9-5 job as long as I had a fairly forgiving boss and a place to hide if things got bad.

    The problem with the Imitrex was that after aborting an attack, I would then get a very bad attack that was completely off schedule. The kind that usually only came at 1-3 in the morning. No matter how forgiving my boss was I didn't feel I could risk having that kind of "event" at work.

    Also the cost was unmanageable at the time. I found a note in the blog here from 2000 that suggests that we figured our expense for the shots would be $60 per injection. I don't recall what our insurance situation was like back then but I know that with the frequency I was having bad attacks, I would have bankrupted us pretty quickly at $60 a pop.

    We were also concerned that Imitrex may not have been safe for me. My family has some history of heart disease and we noticed the Imitrex seemed to make me feel like my heart was "skipping". Its supposed to be relatively safe but it has a bad rep depending on who you talk to.

    So, we havent concidered it since mainly because of those bad experiances but also because, and I know this may sound weird... after all these years I have learned to "take it" and abortives are a low priority. A potentially dangerous, expensive drug doesn't seem worth it to us anymore. I know that a cluster attack won't last for more than an 90 minutes generally and I know that it is not really hurting me. So as sad and as creepy as this sounds, I am just used to them and any psychological damage the pain might do has been done long ago.

    I wish I could talk more positively about all this stuff. I feel like I just have a negative response to everything...

    I am really sorry about that... Keep in mind that just because something didn't work for me or did not turn out well in the long run doesn't mean the same will happen. for you and your husband. I can say this. As brutal and horrific as this affliction can be... It can be dealt with one way or another, a strong willed person with determination does not have to surrender to it.

    It helps to have a thoughtful and caring wife : )

    In that regard I think I am very lucky and it would seem so is your husband as well.

    If you get a chance read that responce i posted in the other thread I talk about my triggers and such... I also had a question or two for you.

    Talk to you soon.

    By Blogger Murdock Scott, at 5/03/2008 2:35 AM  

  • Hi there. We just read your blog for the first time today. I, too, suffer from horrible headaches & we are desperately searching for answers & help. The doctors can't seem to determine exactly what kind they are or what they're caused by. I'm on Topamax, but so far not enjoying the side effects. Hoping it gets better. :) Something struck me in your blog mentioned waking up with your legs feeling very fatigued. I have suffered with that off & on for years also. Although mine affects my entire body. And yes, it is very disturbing & freightening at times. My husband massages my arms & legs in the mornings to get the circulation going. Sometimes that helps, but not always. A doctor diagnosed me with some rare sleep disorders, including sleep paralysis - which it sounds like you may have also? Perhaps this is something to visit with your doctor about, if you haven't already. Thanks again for your helpful blog. Best wishes to you & your spouse as you search for relief. I hope it comes soon for you! Take care. --Marie

    By Anonymous Anonymous, at 9/14/2008 11:17 PM  

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