Years ago I had them intermittently and didn’t know what they were. It never dawned on me it was another form of migraine. I just felt ill–had tinnitus, muffled hearing, felt nauseated, shaky, was pale, and very tired for several days. I would sleep a lot. Then it would go away and I would be fine until the next time.
This has gradually evolved into a chronic condition. My neck aches behind my ears. I have constant disequilibrium (like walking on sofa cushions everywhere), short vertigo episodes, constant nausea, constant roaring tinnitus with additional banshees and furnace motors in the right ear, inflamed inner ears (MRI shows inflammation in the cochlea), hearing loss in lower registers, muffled hearing, and a loss of life as we know it. I am starting to miss a lot of work, family events, meetings, deadlines, and can’t keep up with things—too tired, spend weekends sleeping. I was diagnosed in August after six years of being diagnosed with one thing after another, but never migraine.
After a second opinion and a lot of self education I think this is the first diagnosis that makes perfect sense. I am a confirmed migraineur anyway, with visual aura and no headache, and occasional classic virulent migraine headaches. I thought I had my migraines licked, because I avoided triggers and only have them about once every three years. That’s not bad. It never occured to me that these “episodes” I have had for decades were another form of migraine, but if you take the headache out of the equation they are just like a migraine.
I am trying the Topamax, just at half the dose they recommend. I’m being cautious.
I really want my life back, but I want my brain with it.
I find that trying to keep up with regular exercise, like daily walking, is helpful with dizzyness and nausea. But sometimes I do it and it’s too much of an effort, and afterward I have to sleep for hours.
I hope something works. Soon. Unfortunately it seems everything takes months before you know if it works or not.