The 1st time I remember getting these symptoms was when I was perhaps 23 years old (I am now 57). The 1st few episodes were mild & didn't last long, maybe a few hours at the most. Over the years, the severity & duration have increased, although I've gone for as long as 5 years w/o an episode. The symptoms & progression are long & involved (& invariably the same), so please bear w/ me.
The 1st symptom I notice is scalp sensitivity, eventually feeling as if I'm tearing my hair out by the roots when I brush it. A sensitivity underneath & behind the armpits follows (lymphatic?), then across the lower back, then extending across the abdomen. Then I get a knotted, tightened feeling in the back of my neck, as if there were a cord in there that someone was twisting constantly. Then, my head starts to pound, especially when I move it from side to side or bend over (when I move my head from one side to the other, there's a sort of slow-motion stop-frame movement that catches up to me when I stop), & every square inch of my skin (or cubic inch of my whole body) feels as if someone were scraping it crosswise w/ a razor blade. At this point, all these symptoms remain in full, painful force until the main part of the episode is over, which takes anywhere from 3 days to 3 weeks. I have to wear close-fitting clothes, b/c the movement of fabric against my skin exacerbates the razor-blade feeling. Once I can get up & about again, the headache stays in a muted form & I'm absolutely exhausted & have no energy for another week or two. When I was younger & better able to cope (& the problem lasted for less than a week or so), I could work through it. Now, however, I find that it is just too debilitating - movement is an agony, non-movement is an agony, & the cumulative effect just knocks me out. I typically lose about 20 lbs. when I have one of these episodes - I don't have the energy to bring food to my mouth, & even if I did, I don't have the energy to swallow - but I wouldn't recommend it as an avenue to weight loss!!
I've seen many Dr.'s about this & been given many possible explanations, & the use of SSRI's has seemed to have a preventive effect, as I have not had an episode for almost 2 years (altho, as I mentioned earlier, I've gone 5 years w/o having one); but it would greatly ease my mind to know for a fact what causes these symptoms.
The most credible diagnoses have been: a reaction to aspartame, which I used a lot when it 1st came out, by a GP; migraines (I found the pages on this site about non-headache migraines interesting -I've been told I do get ocular migraines, which exhibit as shimmery, kaleidoscopic images that increase in size until they obscure all but peripheral vision, then gradually dissipate), by a neurologist, but I don't get any of the other effects; & an auto-immune disease, specifically fybromalgia, by a GP (hence the SSRI's).
Pain meds (I've tried Tylenol w/ codeine, hydrocodone, migraine-specific drugs, Neurontin - which I was taking for a pinched nerve, & at the time, I was leaning toward a neurological diagnosis - combinations of the those & others, but nothing even touches the pain (almost more like an ultra-heightened sensitivity), except...a combo of 2 extra-strength acetominophen & 2 ibuprofen, which just barely moves it to the back burner for about an hour.
Has anyone else out there experienced anything similar? &, if it is akin to fybromyalgia, would tricyclic antidepressants be a better (definitely cheaper!) choice than SSRI's for prevention of future attacks?
Looking fwd to hearing from someone!
P.S. I have also always had very poor balance & a very mild vertigo. Could this also be a factor?