I just had an ambulance come by at 5AM, after yet another severe cluster attack. The pain was hellishly unbearable for a few hours, so I panicked, called the doctors and an ambulance arrived, this time with some guys with a cannister of Oxygen. First time I tried that, strangely enough. Seemed to do the trick. The transition between being in Hell and pure tranquillity is…. there are no words.
The trigger seems to be smoky environments this time – bars. So I (may have) brought this on myself, essentially.
So essentially this is where my friend Amanda looks at me with these accusing toldyouso eyes. I’d go as far as state publicly that consumption of alcohol, and exposure to excessive smoke is of-limits to me completely. For life (or until I have permanently conquered the Cluster Headaches).
Let me add a few words on this topic. In the past I have tried many treatments for recurrent clusters. I suppose in the 90s I didn’t know what was happening – the severity of these attacks never dawned on me, and over the years they got worse. I was first medicated in 1994, using Ercycof. That lasted till 1998, when I switched to Maxalt. I tried a few things before that, including the Imigran injectables and a whole other bunch. But Maxalt worked for many years. Then suddenly, a few months before the patent on Maxalt ended, it stopped working for me. Which is strange, but precisely what one would expect from the pharmaceutical industries. So I wandered a bit and ended up with Relpax. Do google the price of the damn stuff. Fortunately Relpax is less toxic than all previous means to treat the attacks.
I also tried, for one and a half decade, these daily medications to deal with this – a whole family of beta blockers, bisoprolol, propanolol, etc. Then around 2002 I tried Depakine, and that was a true and total nightmare. On that stuff I went a little nuts.
So again 2010, when I tried Topamax. And I thought that worked. But after a few months, by the middle of the summer I was sleeping 3 hours a night, losing weight and acting crazy manic. People noticed extreme behavioral changes and expressed worry. My own physician looked at me as if I was developing early stage Alzheimer during this period. I was so unbearable to be around I lost several friends, permanently. Even worse, I got it in my head to subject myself to someone young and vulnerable by the end of 2010, without myself fully appreciating how crazy I was becoming, and I must have treated the poor thing quite horribly. I must have left an indelible impression in late 2010 when attending Milan for Transvision 2010. Same when I was in DC – my behaviour was influenced by several overlapping medications, including ritalin, modafinil, topamax and a near daily intake of relpax. I was acting like a half feral animal. Guess what, a month later back in the Netherlands my liver gave out and I needed surgery.
So most of 2011 I lost myself due to depression. I was faint, like a hollow ghost, and pale and terrified of my own shadow. By the end of 2011 I hooked up with an amazing women and her daughter and they really helped me get back to a saner version of myself. This did include some other existential (and long overdue) changes to my outward identity. So that was at least for the better.
What I’d say – cluster headaches are a hell on earth. The pain is indescribable and absolutely bestial. There is no way I can handle this extreme and incapacitating level of pain without an immediate solution. To experience it, I can do not short of entering up in hysteria.
But the solutions medical science offers may not be much better. Sure, Topamax helps – it stops 75% or more of the attacks. But in doing so taking it made me progressively more insane. Last Saterday I took one – within an hour I started talking to myself, spasming and seeing shadows come out of the walls – hallucinations and forms of psychotic behaviour. Even worse, I could literallu feel my liver burn metabolizing the junk. That was after just one pill. So I suppose 2 years of Topamax (on and off) has left me extremely vulnerable to this type of exposure.
I now have to prove to a lot of people out there that this idiocy wasn’t “me” – it was some toxic external pharmaceutical influence. A poison. Something that should be prescribed with considerable caution. It was bad for me and I suggest everyone to stay the hell away from this kind of stuff.
As for the pharmaceutical industry at large – go to hell. You have effectively turned me in to a Dutch taxpayer-funded medicinal junky. I will be taking Relpax, or whatever even more expensive imminent substitute for decades, as long as it is paid for by insurance. And yes I am afraid for my very life the insurances one day will be unable to cover this stuff. Because without a means to treat this nightmare pain, I’d end up really in a very dark place.
So, that’s me.