Every morning I look at my hand full of pills — Tegretol, Topamax, Lyrica, Citalopram, Indomenthacin, Baclofen, Omeprozole (for the indomethacin) ... I've got my afternoon and evening doses too.
It's been 4+ years of this. I MVD, I have no compression. But for whatever reason, after my surgery I was able to live 13mo pain free and it was awesome, but it all came back. I'm a very positive person. I'm surrounded with such incredible support from friends and family — my husband is awesome. But I feel so terrible for him. His wife sucks. I feel bad for my boss, who deals with this constant moving target — ME. Everyone who surrounds me is absolutely incredible.
But all I do it sit in bed all day, get waited on. Try and get some work done. Feel like crap.
I am over it — I'm over the regular appointments with my neuro, when we add in more med, higher doses. At some point I am suppose to go in to remission. But my pain has really gotten so much worse in the last 3-4 months, its changing. I use to have pain in my jaw. Now I have all of this pain around my eye (I'm going to see a neuro-opthamologist the end of April) and I get shooting pain and aching up my skull behind my ear. what is that about?? My pain has changed and evolved so much in the last year since it came back.
I did research into going down to UCLA and spent the last 3+ weeks getting my records down to them — and they've been awesome. It has been sounded awesome. Waiting to have a consult call with them. It was suppose to happen last night and then nobody called and finally 2 hrs later a nurse called and just said that the head of the neurosurgery dept, who my call was suppose to be with looked over everything and said I need to find a facial pain expert in my area. WHAT DOES THAT EVEN MEAN?! What do they think I've been doing for the last 4 years?! And that since I already had MVD, even thought I had no compression, a neurosurgeon wouldn't do another surgery on me. OK, that's fine. That's not what I was asking for.
This is where I'm at ...
- my current Dr. is super nice, supposedly the highest here where I'm at ... he swears that I should go into remission at some point, but what the current strategy is to add in more drugs on top of what I'm taking + higher dosages (ie: I'm SUPER MISERABLE)
- I do not have a compression, I already went in for MVD
- my pain is evolving and changing and now I get a lot of pain around my eye, my left eye tears, twitches, aches as well as my facial pain
- I haven't had an MRI since 2011, nobody seems to think that is an prob?!
I was thinking about looking in to the Mayo Clinic or Johns Hopkins — however it would be easier to go to Stanford, anywhere in LA or in Seattle as I have family there and have places to stay. I live in Salt Lake City.