It seems the 10 commandments post has been pissing some people off on the interwebs – most notably it shows its face on, well, Facebook. There’s a few over there who think the post here is arrogant, that there is something not right with being told to accept your migraine dx when you have received it from a neurologist.
My personal opinion is that it is right on the mark. Why? We know how hard it is for people to accept that they are a migraineur in some instances, so much so that there is literature on it. It took me about 2-3 years to accept it while I wasted my time thinking I was “decompensated” post VN. I know many of you here have been down the same road. Then there are the ones who think they have had labyrinthitis for 65 years (impossible of course). There’s a website devoted to this! Others think they have Meniere’s. Not their fault but misdiagnosed. Now it’s all Lyme disease. Next year it might be chronic syphillis.
The thing is, of course it is possible to be misdiagnosed with VM. It’s possible to be misdiagnosed with ANY disease. But we know the migraine stats. The affected population, especially among females is VERY HIGH. If you are dizzy and have had other peripheral and central causes ruled out, you are almost certainly a migraineur and that is the root cause. We also know that some people have very nasty cases of migraine that does not respond well to either lifestyle intervention or meds and sometimes not at all. Indeed Baloh says that if a chronic migraineur sees a reduction in their symptoms of 50% with treatment that that is a very good outcome. Unacceptable to most but an unfortunate fact at this point in time.
So you can see how difficult it can be for people to accept the above, especially with an incurable disease like migraine. Unfortunately, it also makes for highly fertile ground for woo and pseudo science to grow like a weed. It opens the door to junk science and absurd thinking, even some inventing a new diagnosis! I wouldn’t want to accept being dizzy either and I never have. And sure, if things aren’t improving I think we have to keep looking even if it’s for the rests of our lives just in case we are not some intractable case.
If you are a confirmed migraineur I think the first priority is to be certain you’ve done everything you know and with the help of a specialist to remove triggers. This is so important. This includes ruling out other illnesses which could be winding up your migraine brain – like Lyme, Rocky Mountain spotted fever, chicken pox, flu, celiac disease. common cold, whatever. For example, had you asked me this time last year when I felt really crappy again if I had sorted out all of my triggers I would have said a definite YES. I was back onto med trials again. I was totally incorrect! It turns out I had a very bad painkiller rebound thing going on PLUS a nasty trigger point on the upper left side of my neck that I had missed for years triggering all sorts of nasty stuff. Unbelievable to me now. Now that I’ve eliminated painkillers (supported by Silver) and fixed that trigger point, I’m a different person hanging out in the 90% range most of the time if I don’t eat junk or do something stupid.
So, what do you guys think? I’d love to hear your points of view.