My TN flare-ups used to be every few months, maybe once a year. Then about a year or two ago, they become much more savage and lasted much longer–sometimes all day with just a few mini-breaks. And the type of pain was a mixture of the old one I had decided was ATN and the new one that seems much more like TN. It was all so severe and different, it pushed me to go to the doctor again. I hadn’t done anything medical in years because the episodes were so minor.
This time I’ve been to 4 neurologists. The end result is that I’ve been diagnosed with MS, with TN being one of the pieces of suffering from MS. It has been so painful I have been in tears in the neuro’s office. I hate to cry, and rarely do, even in front of my husband, and meanwhile, there I was, crying from pain and frustration in the doctor’s office. I finally had an infusion of something that starts with a ‘D’ I think and magnesium and some other drug. All I remember is that one was a pain-related drug, one was an anticonvulsant, one was an anti-nausea drug, and one was magnesium. I got relief from that the very next day, but it only lasted 1.5 days.
Once I reported that to the MS neuro, he referred me to a neurosurgeon who reviewed my file and referred me to the oncology/radiology office to discuss Gamma Knife. I haven’t had that consult yet. It’s another month away.
So meanwhile, I’m in near-constant pain, but enough off and on that I start to feel good that I’m better, then it attacks and makes me feel foolish for ever thinking it was gone.
I had a whole day free of pain yesterday–enough that I almost forgot to take my daytime dose of trileptal–then this morning it snuck up on my and now I’ve had near-constant pain for over 2 hours.
I know it’s not a new worry in this group–I don’t know what my life will be like if I can’t find a way to deal with this level of pain. I was stunned to learn that some people grow to be resistant to the meds. I am worried that this is my case, considering I am in so much pain while taking meds that had been helping. And I didn’t respond well to the infusion.
When the pain is at its worst, I hunch over and just stare and feel like I can’t move–not because moving hurts, but because my body can’t function to do anything more than keep me upright, I guess.
I hate the emotional roller coaster of feeling optimistic that things are starting to improve, then getting socked with intense pain one more time. I don’t like to share with people that I feel better because when the pain comes back I feel like the woman who cried wolf and think it is hard for people to believe I’m in so much pain when I was just fine.
Sorry if this rambles–I have been in a lot of pain and am now starting to feel a little “less bad.”
Thanks for letting me share.