Stressed ,in pain and frustrated

Hello Seema

  last week I got my diagnoses. Phantom teeth pain. Not TN. Well, after nine months of this unrelenting pain it really doesn't matter what they call it!!!  On Gabapentine 400 mg., a day. And Nortripytiline, 25 mg. can't walk, can't think, tired. Iam so discouraged. I certainly know how you feel. The only real thing I know to do is to keep tweeking the meds., and get the pain under control. Iam 68 years old therefore, Iam told there is no other treatment available. The Drs., put it to anxiety and depression. Well, they'd be depressed too if they had this kind of pain!!!!!  I truly wish I knew what to tell you. We are to easily dismissed as being Nuts. Be bold, insist on answered from your Drs., no matter how much they pus back.

   Best wishes to you. Hugs Janice.

It's such a disappointment for you to start getting the pain back after your hopes were so high. Many of us have also experienced this at one point or another when the hoped for remission or cure has evaded us. Are you seeing a neurologist rather than a general practitioner? There are other alternatives to be offered including less invasive surgery. I'm in a 3 month remission following a 3rd thermocoagulation( -  the longest remission I've had for years.. I still take 800 mg a day of tegretol , the only medication that seems to hold T.N at bay for me, although  this is not effective at all times.

I'm a bit puzzled by your mention of massage. When I get attacks it would be unthinkable to touch any area of the face or head as this would escalate the pain beyond endurance. I have to freeze on the spot as even a footstep would have the same effect. I wonder if anyone else has your symptoms.

 I do wish you the very best for the future and sincerely hope that you find the answer to your particular problem.

 Gill

Hi Again,

I fully understand your distress at the pain.I know it can be truly awful.Unfortunately, it's a vicious circle. The pain causes stress which in turn can cause more pain. Is there no way you can reduce the stress. Try putting your head back a little and try to relax into the pain. The more you tense, the worse the pain can be so even though it's difficult do try this. Remember that you will get periods of remission and go back to your neurologist to find out if your medication can be increased or supplemented by another.or if he's willing to try another method of surgey  which is not as invasive as MVD

 Try to hang on to wait for remission which can come unexpectedly. Remember that all on this site are in the same boat and perhaps here will you find people who suffer from T.N and will support you. and understand what you're going through.

 So sorry I can't help more except to tell you that I'll remember you in prayer,

  Gill

My husband has suffered from TN for about 10 years.  He was put on prescription after prescription...the only help he ever got was from prednisone ( which is a steroid) but as soon as he stopped it (as that can not be taken very long) his pain came right back.  His pain was atrocious and it interfered with his entire life as sometimes he would have four flare ups a day- other times he would have one.  Some were hours long- others 20 minutes. Sometimes that pack that you heat in the microwave would help lessen the pain!! He did also have the Gamma Knife radiation, too. That helped for about one year and the pain was back.   Out of desperation, as nothing was working, I started looking up natural substitutes for the medications.  I found DONG QUAI ( sold at a health food store) was a natural substitute for prednisone and CURAMIN helps to control pain and inflammation.  After some trial and tribulations with experimenting with a salve called comfrey cream ( a great muscle rub- but did not help the pain of the TN- but still not a wasted purchase so that is good), then we tried spraying on magnesium flakes ( mixed with distilled water)and letting that set on his legs, arms, and stomach one hour every morning to absorb into his system, then we tried a mixture of Organic cayenne pepper and coconut oil mix to rub on the painful area, then DMSO and silver, then Hemp, ( you can tell we were desperate) he tried these two pills three times a day....Dong Quai and Curimin (extra strength).  Well lets see, he took them three times a day and I would say within 5 to 7 days he stopped experiencing flare ups.  We proceeded cautiously as, really, who would believe this would help...so not to tell anyone he was getting relief- they would think we are crazy.  But one week went by, two weeks, three weeks...I know I started to relax a little bit.  It has probably been since February or March........no flare ups.  He has cut the pills back to two a day.  He has had blood work two times since he started these pills as he told his doctor what he was taking.  His blood work is coming back fine...actually great.  I hope this will help you and others.  I know one thing can help one person and not another but I know he was suffering and myself right along with him.  Our entire life was controlled by this disease.  If you or five or ten or one hundred people, or more tried this and it helped them as it has my husband, it would be wonderful.  It is a horrible debilitating disease.  No One should suffer and go through what I watched my husband experience.  Good Luck!