Headacheslayer still fighting after 7 years
When I was a teen, I began having infrequent migraines. My two triggers: artificial sweeteners and TMJ (Tempomandibular Joint Syndrome). I got on migraine medication, Imitrex, as an adult. I would have a year with nothing, and then a year with more frequent, but not life-changing migraines. Eventually, imitrex began to make me feel odd. I'd always felt drugged, never that happy person in the sun they show in the ads. But when my jaw and chest began getting tighter with each use, my doctor discontinued it.
Little did I know that these "migraines" - while very real, very painful and very debilitating while short - would look like a joke.
In 2004, I rode a roller coaster, twice. There was nothing wrong with the ride, and I didn't even know anything had happened until an hour later when I had my very first ocular migraine - losing vision in half of both eyes. I would have been terrified had it not been for a similar episode a relative had, going completely blind during a migraine. An hour later, my vision returned. I was relieved, yet shaken. A trip to my eye doctor assured me my eyes looked fine, no flare up of my iritis (an autoimmune eye condition that causes blindness if not treated) and that it was probably an ocular migraine as I had guessed.
One week later I woke up with a headache that did not go away for 2 solid months. I was diagnosed with Chronic Daily Headache. Soon, the intractable migraines would begin and eventually I was diagnosed with Complex Migraine Disease.
As of now, June 2011, I have had CDH and CMD for nearly 7 years. I began a blog, headacheslayer.blogspot.com to try to cope with the pain that has crippled my life, just as much as my chronic fatigue syndrome, fibromyalgia, psoriatic arthritis and ankylosing spondylitis has. It has become the one area of my life where I feel helpless and hopeless, desperate. I understand now why migraineurs commit suicide.
I'm with my 3rd neurologist. I've been through every class of preventive, both on and off-label. My last hope, depakote, was a failure after 3 years of trying. Abortive have been a failure as well - I can't tolerate triptans. Even rescue meds have been a flop - I would up being allergic to some (I have multiple drug allergies). The only thing I have in my migraine arsenal is oral dilaudid to keep me out of the emergency room. IV dilaudid works wonders; oral, not so much.
My migraines range from a 7-10, I have about 15-20 migraines a month at least. My longest migraine has been around 16 days. It took 2 courses of steroids to stop it. I get minor auras (surprisingly have stopped having the ocular migraines), slurred speech, droopy face (eyelid, cheek, mouth...gads I even drool). Today I couldn't open my right eye for about 20 minutes. My brain stops working and so does half my body. After, I'll feel like someone has taken a bat to my head, there will be bruised spots all over. I get nauseous and will dry heave, but have never thrown up. My heart will race before I get a migraine, sometimes the only warning. Other times I will feel drugged, hungover before, during and after a migraine. I'm lucky if I get that little jolt of euphoria.
I've had way too many MRIs that I've lost track. Suffice to say I am now claustrophobic because of them.
I face my neurologist next week with fear. I like him. But he is not on the cutting edge of migraine treatment, literally. 7 years ago I balked at the idea of Botox, but no longer. After reading about neurostimulators, nerve decompression and "migraine surgery" in the form of a modified forehead/brow lift, I'm game. I am that desperate. I feel I have nothing left to lose. I've spent countless hours lately trying to find a doctor in FL who knows about the migraine surgery so that I don't have to travel out of state. I will, if need be.
But just as migraine has tapped my hope, my illnesses (and that of my son's) have tapped our resources. I used to work from home as a piano teacher, but had to sadly give that up. My days are, more often than not, spent in a darkened room, with my head on ice packs, tired of sleeping but unable to stand any sort of light or sound.
I know I'm not alone. I know that others understand the hell I'm living in. I'm still slaying the migraines as they come, or rather, trying to. But even headacheslayers get tired of fighting their demons and give up. Have I mentioned that I'm desperate? Without the love and care of my husband and 2 kids, I simply would cease to be.
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