I am not sure where to start. I think this bout started in 2008. Dec 2009 I had a full hysterectomy/rso. I was already having MAJOR menopause symptoms including headaches. I passed out 4 or five times after surgery and eventually had a MRI and MRA of my brain, cervical, lumbar and thorasic spine. MRA was clean. MRI should no MS lesions (2010). The MRI on my brain was done during a horrific migraine. My Cervical spine is trashed. I need a tri-level fusion. I have tricompartmental stenosis and other issues. My lumbar spine is less trashed and not fixable with surgery but the pain travels down the front of my legs to my feet. I have been diagnosed with Migraine w/ and w/out aura. Migraines without pain which freaked out the first neuro so bad he referred my case to a specialist's specialist. The second or third neuro finally got a cocktail together to help but it does nothing for the CH and she has not dxed me with CH. I have them there is no mistake. They are totally different from migraines but they do feed each other. I am also mentally ill. I have Panic Dx, Mood Disorder, and now Major Depression as well was RLS, movement disorders, fidgeting nervous disorder (I forget the name), GERD and not sure what else. Yes I am Vit D def. I tested at 15. I am taking 10,000 units a day just upped from 5 a week or so ago. I have extreme allergies including gluten, rice, corn, carrots, etc.
I am currently on neurontin, xanax, tramadol, (toradol or ibu 800 or ketoprofen), (skelaxin or zanaflex), reglan, hydroxyzine liquid.
I have tried and failed with topamax (taper off caused initial MAJOR depression), depakote, elavil (gained a ton of weight), cymbalta (useless), lexapro, ergot, midrin (useless AND allerigc to tylenol), norvasc (swelled up), seorquil, risperdol, paxil, keppra, beta blockers, predisone (allergic), lidocaine patches, gel and cream (allergic reaction BAD) and more.
I take one of the anti-inflamatories and one of the muscle relaxers. Not all of them at once.
I have been disabled since Oct. 2009. LTD ran out in March. Court for SSDI is in July. I ONLY have PAC which is medical assistance light so at this point all I have is my shrink can't even get a PCP until after I see the shrink because there is a 10 day lag in coverage for a change and I see her next thurs. Next drug I am going to try is Wellbutrin. I am going to try and see my neuro out of pocket if I can afford it.
My CH's are usually on the left side. Face swells and goes numb. Eye droops. Sometimes my nose runs or is stuffed up. Not sure about the pupils. My pain diary pretty much looks like the textbook. I wake up in horrid pain around 2am ALOT. I just went through three ha's since 2pm today. On off...on off...ARGH. I am an ice person heat makes everything worse. I have a TENS unit but it seems to do nothing for CH's. My CH's are light and sound sensitive so are my migraines. My gangloin lump is like a radar detector for my pain.
My case is complicated and has gotten me fired from more doctors before they even cracked my file than most people see ever in their life.
I am trying to up the water. I already intuitively figured this out and I drink alot during heavy pain periods.
Until I get back to my neuro I do not know what else to do to end this cycle of torment. It hasn't been this bad since Sept. of last year which was the last time I passed out. I know this got long I just am in so much pain I am mentally banging my head against the wall right now.
-- Darkfire