Hi peeps… anyone out there suffered with this trigeminal neuralgia?? It started last week, numbness in my tongue, now FULLY escalated to left hand side of my face, tongue, lips, cheek, chin and ear NUMB!!! Cleaning my teeth has been murder… eating and drinking - nightmare, roof of my mouth is freezing cold and tonight, I’ve got severe pain in the corner of my mouth. Also this evening my left cheek looks rather swollen…
Just wondered if any of you have suffered this and if so, for how long, whats the treatment??? Went to see my NS nurse last Friday, when it wasnt so severe and she mentioned could be a relapse… never had this before, so will I have the steriods???, this has got to me today, its worse than the numbness in the legs… Sorry for the winge - have to ring the nurse tomorrow to let her know how I am… WORSE!!!
Hi pink69, I am new to the forum and read your comments about trigeminal neuralgia. I started being unwell Nov 2011 with 6 weeks of nausea and vomiting and lost a stone and a half in weight. I was admitted to hospital with dehydration had some IV fluid replacement and was sent home. Three weeks later I had numbness and pins and neeedles in my lower legs which my GP completely ignored!!!
Then six days later I had numbness on the right side of my face including my ear, tongue, palate, gums, teeth. Right eye ball numb, but had electric shock like pain through eye. Another hospital admission sent home again without a diagnosis ?? TIA. A week later back to GP who insisted I go back into hospital and this time I had to have an MRI scan.
At first they thought it was a stroke but a CT scan ruled that out. MRI scan showed inflammation around both left and right trigeminal nerves. The left side of my face went numb 3 months later!!
I take gabapentin for the nerve pain the numbness is still there and my palate and tongue are still affected but not as bad as when I first got the symptoms. My gums are more or less back to normal, I get electric shocks through both eyes now especially when I put my contact lenses in every morning.
I have learned to live with the symptoms the gabapentin blocks out most of the pain and I only get mild pain in the rest of my face when the nerves fire off. At first my face was quite swollen and the numbness itself was painful but eventually my body adapted to it and now I don’t notice it unless I touch my face to wash it or put make up on.
Reading some of the comments on this site I think I am lucky to have found a neuro who diagnosed me 7 months after first symptoms of numbness started. I am due to see my neuro just before christmas and hope to get some dmd’s offered this time.
Good luck with the symptoms hope they settle down soon, sorry for being a bit long winded but it is the first time I have used this site.
the whole of right side of body has been like this since june. got a ‘quick’ mri-end of nov-only 5 months later!!! meanwhile i have lost 2 stone-eating used to be pleasureable-now i force it for fuel. no idea how long it will last,nor the speech problems. hey ho.
TN is one of the worst MS symptoms and you have my sympathy.
I don’t really want to answer your question about how long I’ve had t because it will p*ss you off (think years not months) but all is not doom and gloom. There is drug treatment that is very effective: carbamazepine and amytripetene are the most common.
If what you are experiencing is TN, steroids will do no good. However your description does not sound like classic TN which is probably why your MS Nurse was thinking relapse.
Thanx for all ur posts … spoke to MS nurse who has made an appointment with my consultant for this coming Frid…been docs again… flaming water infection… when does it ever end!!! Am hoping and praying to my guardian angel that whatever it is they offer me, I’ll take it and it’ll bloody work… Never used to be one for taking tabs, but now, just give it to me… gone past caring…
Oh yeah and if someone tells me again, “Oh you’re looking well”… I’ll bloody scream… … That’s horrible init, but today thats how I feel…