Liz, i thought I was reading my own story. I started having migraines in middle school. I see the top neuro's in my area, seen the specialist etc, and they all say I've tried every medication known to treat migraines, then some. The only preventative that helped me was Topamax, but it caused me to have kidney stones, and major cognitive effects. I too have been told 'its all in your head', had many a doctor litterally give up on me and not see me anymore, one dx'ed me with Bi-Polar, which I DO NOT have and most agree.
I've had doctors yell at me, compare me to Nicole Smith, call me a drug seeker, and on and on.
I've finally realized doctors aren't going to do me any good, so I took things into my own hands(see energy med and psych-k below)
I too have imsomnia really bad, and i wonder if that plays a BIG role is our headaces. But, when I was on Ambien, it really made my h/a's worse.
I also noticed that when I got off my depression med, Prozac, after a few weeks they decreased in freqency. I AM NOT SAYING TO STOP MEDS. Getting off my meds took years and I suggest doing it with the help of a doctor, even though my doctors think i'm crazy for getting off meds.
Have you ever tried anything like Stadol NS or Fentanyl suckers? They do wonders and limit the ER visits. You may see if a Pain mang. doctor will help you. a neuro isn't going to prescibe anything for pain. I don't understand why they would rather you go to the ER every two weeks instead of giving you something for pain to take at home.
I do something called Energy Medicine (there is a facilitator in my town). There is a book by Donna Eden that has really helped me.
Since doing energy medicine and something called Psych-k, I'm down to about 1 'i need a shot' migraine a month aposse to the 1 a week before. I am off my anti-depressant and anxiety medications, and I'm slowly getting my tolerance level to meds back down. I'm like you, I can get 4 of Diladid in my port and walk out in a straight line. I can drive after a stadol shot(well the first 30 minutes). For example when they put in my port, they just give you meds to make you go to sleep, not anastheia. I had benadryl, fentanyl, phenergan, diladid, ativan, and something else like a muscle relaxer and didn't fall asleep untill it was all over (not fun may I mention). I can take an ambien and be up all night. So I understand the frustration.
I really do suggest looking into the energy medicine. Its facinating and has done wonders for me. Some people think i'm crazy, but it works.
I know this post has been random and not of much help, but know your not alone and we are all here to support you.
Best to you,
PCOS(should have seen this list before!!)
imitrex inj, stadol ns PRN severe h/a
ProzAC 40mg, Klonopin 1mg BID , Ambien 10mg
PRN, Pherergan, Actiq 600mcg(fentanyl suckers) for migraine breakthrough pain
Doing engergy medicine!!!! Psych-K (look it up)
OFF ALL MEDS! AND DOING GREAT. still have h/a's but they aren't ruining my life anymore!
May God give you a reason to smile today, an extra reason to laugh, and bring joy to your soul.