Hi! I can tell you that I do have an answer. Mine goes on and off now... BUT they are seizure/neurological in nature. I was absolutely shocked when the 4th, yes 4th, neurologist I went to actually listened and gave me an EEG. Turns out I am having deep seated parietal lobe seizures and they cause a myriad of weird symptoms, and they are rare.... like 5% of the population so no wonder everyone is at a loss. So now I am on seizure meds and this has helped so much!! Keep pressing until you find someone to listen and do the tests. Ask about
an EEG, not just a quick one, but one where you sleep fast and get the lights flashed and all that. A thorough EEG. I was not jerking or anything and I was having a full blown seizure during the test. All I felt was these weird sensations. Now I am on Keppra and Gabapentin. Although I am tired all the time from the meds, I can actually feel like I am not on being bathed in BenGay ointment!!
I hope this helps!! Keep me posted :)
Mandi Jayne said...
Lanie I am hoping your still seeing this. I have these EXACT symptoms. I woke up 3 weeks ago with my mouth (including tongue burning). The next day my eyes and skin burnt as well. There is no signs of anything wrong. I have had every test you can get everything is normal yet I burn. The tongue is pretty much 24/7 but the skin is off and on.
The doctors are at a loss. Did yours ever stop or did you find out what was causing it?
Any help would be appreciated.