Friday, October 5, 2007

Major ChAnges * Cluster FucK


The internet is an amazing thing, truly it is. And last night it changed my life in a way I really hadn't anticipated.

You know, I've heard more than one doctor complain that they really hate the internet - they keep having patients who read about diseases online, self-diagnose themselves, and come into the office thinking they know more than their doctor. "::cough cough:: I think I got the black lung". Now I'm sure that sucks from the doctor's end. But personally, I'm a patient, and last night, as I surfed the internet in hoped of finding another person, any person, who suffers from the same peculiar migraine symptoms that I do, I discovered something kind of mind-blowing: I really don't think I suffer from migraines at all.

Well ok, I DO suffer from migraines. Occasionally. But that's not my issue, not the great foe in my life, and last night I discovered that I thought I'd been fighting the wrong one all along. The Grand Pu-Bah I've been battling is actually known as the "Cluster Headache". Now, he doesn't sound quite as cool or dramatic as "migraine" I know. However he does commonly go by the nickname "suicide headache", but don't worry -- this is only because people have been known to kill themselves to escape the pain. Now, probably if you don't actually suffer from them, the subtle differences between a cluster headache and a migraine will probably escape you, but to me the differences are not small. It opens up a whole new world.

Physiologically speaking, migraines and cluster headaches are very similar -- in fact the treatment I've been receiving for migraines is perfectly suitable for cluster headaches as well. However, while that treatment has been ok, and it seems to be reducing the number of cluster headaches (dubbed "cluster fucks" from hear onwards, so pardon my Canadian) I get in a given month, the medication I have doesn't reliably do much for the pain once I DO have a cluster fuck.

However, recognizing that I suffer from cluster headaches opens up a whole host of new treatment options that hadn't previously been considered. Of course, it's entirely possible that they will be just as frustratingly ineffective as past treatment options have been - pain treatments aren't really known for their effectiveness among pain sufferers. But it's something. And there's a particular treatment used for cluster headaches - oxygen treatment (the equivalent of having a home oxygen bar!) that could be worth exploring.

Most importantly though, it explains things in a way that pretty much discounts medical abnormality. Cluster Headaches would explain so much that I've been trying to understand since my migraines first struck - symptoms I've heard of no one else having, and that no doctor can explain to me or recall any other patient having. Symptoms that kept me up at night, worrying what the hell could be wrong with me. Because when I saw that list of symptoms for cluster headaches, my world just sort of snapped into place. It all just made sense.

For the sake of these migraines, I have seen 3 Neurologists, 3 ENTs, had 3 CAT scans, an MRI, and an EEG. I've had surgery - primarily because my ENT thought that my migraines were caused by Sinusitus. This turned out to be false (although I probably suffer from chronic mild-moderate sinusitus, and who the hell knows how that's contributing to all of this, but I'm starting to think that the matter has been exaggerated to me in the past).

Have past Doctors known about this or had their suspicions, and simply never told me? I'm not sure. If so, I'd prefer not to know that. I really don't want to harbor that sort of hatred against someone - because there are lifestyle changes that I could have made that might have helped me as a cluster headache sufferer, that I knew nothing about. If they had known they ought to have told me. If they didn't know, then they ought to have known.

I do know that it seems like my 2 hours of online research may have done more for my personal health than any doctor or specialist I've seen (or surgery I've had), even though that research was practically free while my neurologist costs me $70 / visit. Last time I saw him, I handed him a piece of paper vividly describing my symptoms, and although he is supposed to be one of the best neurologists in the dc area, he didn't mention a thing to me about "cluster headaches".

Personally, I suspect he didn't really read it. But that's alright, what's a few more "suicide headaches" to put up with, right? Inattentive jackass.

The sad thing is, I think it's a dysfunction the health care system, not with my doctor(s). If I ever have children, their doctor may be downgraded to the role of "prescription writer". Because really, what the fuck else are they good for? All the information they tried to learn from their fancy texts books, but actually forgot somewhere along the line (just like I did 3 days after every test I took in college) is available somewhere on the internet, and probably discussed in greater detail among people dealing with the issues.

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Phew
Well that was a rant, wasn't it? But by God this could be a very good thing

2 comments:

John Henry Adams said...

I don't know, Allan. "Cluster headache" sounds a fair bit cooler than "migraine" to me. I mean, it sounds like some sort of sci fi death ray, while the word "migraine" has always made me think about harvesting farmers. Congratulations on finding out what you actually have, though!

John

Allan in Europe said...

haha, I'm just picturing two farmers fighting over wheat. "Migraine!" ::shove:: "No, is MIgraine!!!" ::shove back::