Hello all! I had to come here and post, I really need some answers and opinions on this.
I've suffered from migraines since my teens. After trying many different meds, including Imitrex, Maxalt, and Zomig, we finally hit on Frova, which seemed to really control my migraines. My NP thought they might be hormon-related, and it seemed she was right - so much so that when I had a hysterectomy, the migraines become almost nil.
Fast forward 9 months - the migraines started coming back with a vengence. I had a multitude of things going on, which still are now - severe neck and back pain, shoulder pain, leg pain (both on the right side mostly), twitching in my right eye and arm, neuropathy, and those lovely headaches, which are typically behind my right eye, like someone's stabbing me through my eyeball and into my occipital bone...though the feeling of shards of glass being stabbed into my eyeballs on each side goes into both eyes. The Frova has stopped working, Vicodin doesn't help, and when I do go to the ER, Dilaudid helps for a few hours, then I'm back to the same pain.
I started seeing a neurologist 2 months ago for all of this, and he just wanted to do test after test - first was an EMG, finding carpal tunnel in both hands, and nerve root damage in my cervical spine. An MRI was clear. I was admitted to the hospital for 5 days following 3 instances of passing out while having a severe migraine. The neuro there put me on a Duragesic patch, which finally broke the headache. I went back to my normal neuro the day after I was released, and he said the EEG was normal, and just continued Vicodin ES (which I've been on for 5 years for other issues, so it does NOTHING) and Neurontin. I had a follow up with him yesterday, on my third day of a migraine, and had my husband with me as my advocate. My MRI of my cervical spine was normal, and again, he did nothing but raise my Neurontin and give me more Vicodin....he didn't want to change my migraine med, he wouldn't help me with the headache I had going on, just did another EMG on my legs and back and found more nerve damage in my lumbar spine and wants another MRI, on my lumbar spine. My husband was very angry at his refusal to help me, so the neuro told him to take me to someone else. He ended up taking me to the ER last night, where I had a nurse who knew my background (I end up there a lot because of my Crohn's and pain), and she and another nurse took great care of me and suggested a great neuro, who I have an appointment with on September 15. They gave me Dilaudid and Phenergan, which took the edge off and allowed me to sleep for the first time in 4 days, but the headache was back with a vengence this morning. Then I got a phone call from the EEG tech at the idiot neuro's office, telling me that the doctor wants me in tomorrow morning at 9am for another EEG to compare. Did he decide this in his sleep????
So I don't know what to do....I cannot take the pain anymore, I can't care for my 4 kids, I can't get off my couch! Has anyone had any experiences like this???
Crohn's Disease/Colitis (diagnosed 12/02), Diverticulitis (diagnosed 6/07)
Positive blood test for wheat allergy, (11/07); Positive capsule endocopy showing Celiac disease (6/30/08), also allergic to egg white protien.
Taking Asacol, Prednisone, Humira, NuLev, HCTZ, Lisinopril, Cymbalta, Prevacid, Zantac, Ambien, Lomotil, Soma, Plaquinil, Frova, Premarin, Entocort, Xifaxan, Creon, Ultracet, Vicodin, Questran powder/Carafate suspension, and LOTS OF VITAMINS AND SUPPLEMENTS!