I’ve had TN on 1 side for about 3 years. I have types I and II pain, also some patches of numbness. I take gabapentin which definitely helps, doesn’t go away completely of course. Trileptal did help, but sadly I developed an allergic reaction with a crazy rash.
My first MRI 3 years ago was normal.
I had a repeat MRI this year because I was thinking about Gamma Knife. So sick of this, right? My new MRI showed a vein touching the nerve and ]my neurologist, the Gamma Knife radiation doc, and a neurosurgeon all recommended MVD. So I’m freaked out about the whole intracranial drilling and all that, but I feel like I have an answer and a solution and I’m like “Ok, let’s do this.” And surgery is tentatively scheduled in 2 months.
And then… like something out of a nightmare… I start getting some zaps on the other side. And I think I must literally be one of those hypochondriacs who has a deeper psychiatric issue imagining this crap up to avoid surgery, but no, it continues to get worse and I was having the deeper stabbing pains that just couldn’t be denied. Also the original side was worse.
My neurologist recommended 2 weeks of prednisone, and while the pain is not gone, it has lessened on the 2nd side. There is a new annoying patch on my original side as well that refuses to be calmed.
I’m going to put off the surgery for now. But it’s so frustrating. The timing is ridiculous and I have to wonder if the stress of reading and researching and thinking about the MVD set off the other side (“set off” how?). I just feel so helpless to some disease that I can’t understand. And my doctors don’t really understand either.
I have a couple of autoimmune things that might be related (Sjogren’s, Raynaud’s, chronic hives), but still no one can say exactly what it is. Not MS so far, and bless those of you who have that!
It can be so easy to get down and depressed and lonely. Such a lonely disease! You don’t want to complain to your family because it makes them sad. I’m a bit of a silent reader on the website, but thank you for being fighters, you really inspire me.
I wish we able to help more actively with research. Does anyone want to study me?!! I’m here.
I’m just gonna keep doing what I’m doing. Love my kiddos and hubby, keep working and enjoying intellectual challenge, travel, exercise… do the best I can.