according to research, the theory behind so-called “remissions” in TN is the nerve repairs its
myelin sheath within an amount of time and has a new layer of protection
against the blood vessel. however, the blood vessel is always beating
against the nerve, so it is a matter of time before the myelin is worn
away again, and the attacks resume.
remissions vary in people due to different reasons; some people have
thick myelin, some people have thin. attacks worsen over time because
myelin usually does not rebuild itself as strongly with each successful
breakdown of matter.
i have often wondered why TN patients are not given certain meds MS
patients take, which work to repair the myelin on nerves. seems to me it
would help to stretch remissions out over time, maybe even long term for some patients.
doctors don’t even agree that compressions are the real cause of TN. but that’s a discussion for another time.
remember, i am not a doctor. always speak to your own about what i’ve said here.
vesper
Does anyone know what the meds are for MS and if they have been tried for TN. I am willing to try anything had a bad attack this morning, and I only went outside and the wind caught me. I have a dull ache in my cheekbone all the time, then for some reason it suddenly flares up and I get a searing burning sensation down to my jaw bone. It just stops me in my tracks. Before I had my op MVD it used to go up through my eyes. Then I had 2 years free from pain. I can,t understand what happens, don’t think I know enough about this condition, but my doctor does not either. Any advice would be welcome.
I was wondering , you said you you were pain free for 2 years and your TN pain came back in another area of your face. I had MVD surgery last Aug. I have not had any pain, but I am still weaning off of the medication. I still have “twinges” on the side of my face where the Tn was. Did you have this after your surgery and if so did they ever go completely away.
Linda Kindle said:
I was wondering , you said you you were pain free for 2 years and your TN pain came back in another area of your face. I had MVD surgery last Aug. I have not had any pain, but I am still weaning off of the medication. I still have “twinges” on the side of my face where the Tn was. Did you have this after your surgery and if so did they ever go completely away.
That is what happened to me I did still feel the twinges, but they were nothing, I came completely off medication, and for 2 lovely years apart from the twinges I was free, out of the blue this pain just started up again. Not as bad as my previous before the operation, but I am afraid it is heading that way. I am due to go to see a new consultant just awaiting appointment. Don’t really want any more surgery as I lost my hearing on one side last time. It took me a long time to recover. You might never have pain again I hope that is the case, think I am just unlucky.
Vesper,
That is an interesting thought. Why aren’t we offered MS drugs? Maybe some of us should ask our neuros. I have read that there is a discussion about compressions not being a cause. But if MVDs help so many, it must be one of the causes. You mentioned that the myelin is damaged over time. My surgeon said it is possible that my nerve had irreparable damage. That is why I got some relief from the MVD but not total relief. That is why I personally think that most patients should at least consult a surgeon. I think that I would not have continued to have pain if I had had surgery much earlier. But then some surgeons recommend other treatments. That is why it is so difficult to make a decision.
Liz
Margaret,
Have you asked your surgeon or neuro if you should continue to wean off meds if you are having twinges?
Liz
Margaret Gladys Mills said:
That is what happened to me I did still feel the twinges, but they were nothing, I came completely off medication, and for 2 lovely years apart from the twinges I was free, out of the blue this pain just started up again. Not as bad as my previous before the operation, but I am afraid it is heading that way. I am due to go to see a new consultant just awaiting appointment. Don’t really want any more surgery as I lost my hearing on one side last time. It took me a long time to recover. You might never have pain again I hope that is the case, think I am just unlucky.
Hi Liz, I am back on full medication now. After my operation I was quite poorly things did not go well for me during the surgery, I was just very unlucky. ( Mr Bryon said he had had to remove a blood vessel never really asked what else they did, but I will if given a chance )The twinges I felt were what I thought was just the numbness wearing off. Waking up and finding myself deaf in one ear and in pain and discomfort and I still cannot walk without a cane as my balance has not returned. So a few twinges were the least of my concern. The fact that the pain in my face had gone compensated for everything else. I was only too happy to wean off my medication. Then when it returned in 2009 I was devastated, I still can’t get my head around it. Though surgery works for so many people, I just would not dare to go through it all again. I am due to see another specialist when my doctor has sent all the relevant documentation and I manage to get a appointment. This is a condition that I never hear people talk about, until I found this site I began to think I was the only person with it, and my doctor has had to read up about it. Never mind lets hope they find something new for us all that will get rid of this nightmare, we must remain positive.