Three years ago I was diagnoses with TN but it is an atypical type as I also concurrently developed migraine symptoms that seemed to connect to my TN symptoms. Touch on the back of my head, the side of my scalp, loud or high noises also instigate facial pain or electric shocks. I also have the classical TN symptoms too (lucky me). Over the three years life has nearly gotten back to normal due to medications (Trileptal, Topamax and Botox for migraines and Gabapentin for break through TN pain). I’ve still had constant pain in my teeth and face and facial sensitivity, but I’ve learned how to handle it. I don’t do things like take a yoga class, go to a music concert, listen to music, touch my face for more than a minute or eat ice cream or ice. I’m not a candidate for surgery as my symptoms are “atypical.” I’ve had no real shocks since May and really this whole year haven’t had many.
Now I’m scared as something weird happened on Friday, I ate a sandwich, stabbed a piece of bacon into a piece of my gum, and wham! I am having these awful symptoms again. Two days now, my lower face is burning, my gums feel swollen (though I know they are not), I feel I’ve had a root canal surgery just this morning (all the f@#$ing time). So far no shocks but I have that awful familiar feeling that I get that one is coming. I can’t sleep tonight due to the pain and don’t even have pain meds around anymore since things were going OK.
I just wanted to reach out and say—I am scared, I hate this, I wish i was normal, I’m scared I will be disabled again by this horrible condition.
The medications make me drowsy and not as quick on the job, which is a job where I use my mind. I hate that my memory and ability to find words sucks now and would get worse if I took more meds. There is just so much I can do when the pain gets bad and be able to work too.
I have had a relapse last year when my pain moved for the first time from only being on my left to my right, since then its periodically been on the right side (which it is now as well). I did get better after that one and resumed my normal chronic pain level.
I’m sure I’m not alone in this and I know some of you have it much worse. I am probably lucky I have been able to get back to work after only two mos. on disability after diagnosis. I just took some advil, which, is all I can do at this point until I can talk to my neurologist this week. Has anyone had a relapse that they then came back from and were OKish again? I wish all of you well in this brave fight to continue on despite this great challenge. Its a good thing to focus on what we CAN still do, I can still love, I can still watch fun TV shows and movies, I CAN still be there for family and friends, I CAN cook, I CAN be of service to clients I work with (for now at least).
Thanks for reading. Wish me luck!!
Update on 2/28/17
I having a small bit less pain but still in relapse, still disappointed, but it helped to reach out. I’m nowhere near where I was at diagnosis, only one shock in public that was out of my control. I just have to accept that I need to go back on the medication whose side effects I hate for now (Gabapentin). I’m happy I can still work, be out and about, and will just avoid fun stuff like kissing and having my hair or face touched. Thanks again for the ideas about B12 etc.