Hi Mary Beth,
Sorry to hear you are having similar problems I pray we both find a solution. Went to see Dr Acquadro today and he was confident he could get this under control. He deals w/lots of AN patients. He said my case was very manageable. He seemed very confident that he could treat this with Botox, Lyrica and a Lidoderm patch.
He sent me to Cambridge to see a Dr. Gary Borodic from Harvard Med School and MEE. He gave me three shots of Botox right under my incision which is where my spasms give me the most problem. He said he would start with the right side and see how that goes. I get spasms on both sides but he wanted to wait and see how this goes. I have a follow up in three weeks. He said it won't even start to have any effect for three weeks anyway. Cost me $600 and Harvard Pilgrim probably won't cover it.....ouch. I also feel like crap. They told me I might not feel so good.
He also put a plug in my eye to keep it from draining. My eye dries out especially on windy days. I use the Refresh w/Celluvisc. I see double out of my right eye.
They probably won't cover the Lyrica either. He said it was like Neurotin only much cleaner w/less side effects but it was a new drug and expensive. They'll pay for Neurotin but not Lyrica. One of those catch 22's I guess. I'm calling and I'm going to give it a go and see if they'll pay for both. We shall see.
Both seemed to think they just have to get the spasms under control. They said it was a combination of things. The cutting of nerve, muscle etc as well as being in a halo for 12 hours getting a hole drilled in my head. They said it is a vicious cycle and they just have to break the cycle which will eventually help me return to normal. I hope they're right otherwise I'm going to start exploring a surgical fix like Janet opted for. I'm about done with this drug thing. I'll give this a few months and see what happens. The only way I’ll know is coming off meds completely which is my goal. I'm tired of being groggy, dizzy and harming vital organs......I'm going to need them for a whole lot longer hopefully.
If you have any questions at all feel free. Keep me apprised of your situation and we'll compare notes. I don't have classic migraine symptoms. My biggest problem is spasms that lead to muscle tension headaches. I think I'm having some rebound headaches that feel like hangovers but they're mild enough I can deal with those for now and ramp down on the OTC's. He did say there was nothing alarming about the amounts I'm taking. I take the minimum to keep me going.
Anyway I'm going to ramp up the Lyrica over a few weeks and try and wean myself off of the Tylenol, Naproxen, Aspirin, Ibuprofen, Cyclobenzaprine and Diazepam .....I'm now taking, yikes. I'll keep you posted.
Best of luck and God Bless, Joe
