Anyone else ever experience this? I was laying on the couch relaxing watching tv and all of a sudden my nerves went crazy random severe sharp burning nerve pain in multiple random parts of my body. For instance it started in my right calf, right elbow and just below my left knee simultaneously. Then it stopped but as soon as it did it moved to my R middle toe, left deltoid, and right back rib midway simultaneously. One set would stop and another random set would begin. It wound up attacking over 30 spots all over my body randomly with two or three locations simultaneously. It set off my tn and then my occipital with about 4- 20 second attacks concurrently with the different random attacks. A few times during 2 hours this was happening I also had a severe squeezing-cap-like headache on top of my head with burning sensation. I don’t take my gabapentin unless I’m in a tn or occipital attack so I had to find my pills took one and it seems like it is helping it’s just mild short shocks now. I have been in remission for a couple months from tn and occipital neuralgia but have had a lot of migraines with scintillating sarcomas (those are scary as heck) lately. I can’t afford to go be seen right now but idk what this is and have never experienced nor heard of anything like this either. Anyone ever experience this kind of random nerve misfiring? I had no deficits just the pain. Felt unsteady once when I was looking for my pills and the occipital neuralgia hit. Thanks in advance.
Dear Kyrawest,
Ooh poor baby, I’m sorry! I have felt sudden, sharp pains in unexpected places, but nothing like what you described!
Since these are new symptoms, for sure, you should go to your doctor and report all of this. It sounds like possibly some sort of a seizure, maybe.
Anyway, try to go and get to the bottom of this. Maybe your doctor can help.
We will pray for you tonight.
Thanks Kudasai I really appreciate the prayers. Will pray for you also. Interesting thought- seizure. I was quite alert but idk. Perhaps. It was very strange. I’m looking for a new doctor in the Phoenix area that actually has a clue. Been through a lot of crap with doctors who know nothing about nerve issues over the years & the last one was ridiculous.
When I have a remission, I stay on my Gabapentin. I learned the hard way how awful and unpredictable the return can be. I have had similar (but not as bad) experience as you had. I feel so sorry you had to go through that. I hope you are getting relief now.
Wow ! how terrible that must have been! Have you have any subsequent episodes? All I can say is even when all my TN related attacks disappear I still stay with my pills.
So sorry for you, keep us all informed. Good luck.
The Mayo Clinic in Phoenix is supposedly one of the best in the nation for Trigeminal Neuralgia. I would like to go, but unfortunately, I still have to pay 15% out of pocket even with my supplement insurance and Medicare. That could amount to quite a bit after testing, consultation, paying for hotel, etc.