Hello to all that are suffering (either today or previously or maybe tomorrow),
I am new to this board and to the tremendous, unbelievable pain. I was diagnosed 6 months ago with TN1 and was handling it with my prescribed dose of 200 mg carbamazepine. My zaps have slowly increased from 1 or 2 a day to quite a few an hour. Until this past week when i had a full blown Linda Blair moment (yes I try to joke about it) it has become all-consuming now. I refuse to allow it to take over my life. I have been prescribed both an increase to 200 mg twice a day and 300 mg of gabapentin three times a day (which I hate). I have not had more than one or two zaps a day since. Oh but the fear and apprehension of the pain…My question for you all is what my next move should be. I am currently being seen by my general practioner and have an appt. Tuesday with him. At what point do I seek a Neuro? I desperately want to be free of this sickness. I am 56 years old with a full-time job, a family and an active life. Is DVD my best solution for a return to normalcy. I appreciate any and all opinions. Thanks and peaceful days and nights to all.
Hi,
I’m so sorry to hear that you are suffering with this horrible disease. You have a really strong attitude which really helps as TN can really get you down.
I was diagnosed six years ago and have tried multiple medications and had a nerve block. I am on Tegretol, Baclofen, Clonidine Patch, and anti-nauseas medication. Until last week I was on 300 mg of Lamictal which was helping, but I was having nightmares and couldn’t take it anymore, so I had to quit. I know the side effects of medications are different for each people, so at some point Lamictal could be worth looking into. Also, the clonidine patch really helps which is worth considering. Do you feel the medications you are on are helping?
I would highly recommend you find a good neurologist whom I know can be hard to find, but they are more knowledge in TN. Where I live in CA, the neurologist/neurosurgeons at the teaching hospital seem to be more knowledge in TN as teaching hospitals seem to treat more people with rare diseases.
I cannot have general anesthesia and had a never block which was disastrous, so I haven’t tried any surgical procedures, but I knew other with TN that had MVD with great results.
If you every need anyone to talk, feel free to message me.
ask primary if you have to see neurologist before neurosurgeon.......and ask for lidocaine face patches or lidocaine cream for extra help when the meds break thru.
see if on our doctors list below, any TN neurosurgeon is within an hour or two of you.....and/or neurologist
this is rare and progressive
MVD with theeee right surgeon, can give you relief or remission. 90%+ odds if done in first three years.
quick, grab a book called STRIKING BACK BY DR KEN CASEY....our go-to reference.
Eventually meds stop working, the nerve gets worn down. Other procedures are not as high success. Its usually only two days in hospital....
I flew to Michigan to get the best! I am two years+ Post Op.... no pain, no meds, got my life back - age 51 now.
Find YOUR best! Email if you want.
Kimberly
YOUR STATE: RECOMMENDED FROM PATIENTS HERE:
Pennsylvania
Erie:
University of Pittsburgh Medical Center ,
Dr Raymond Sekula Jr, Neurosurgery
Harrisburg
Lancaster General Hospital
Dr. Garrido
Johnstown
Memorial Med. Center
Dr. Bowles, neurosurgeon
Meadeville:
Dr. Anthony Colantonio, MD
Philadelphia:
Columbia Presbyterian
Johns Hopkins Hospital
Jefferson Hospital for Neuroscience
Dr. Yaron Moshell, Neurosurgeon
Dr. Alan Stiles, Maxillofacial surgeon
Pennsylvania Hospital,
Dr. John Y.K. Lee
Pittsburgh:
Presbyterian Hospital
Dr. Richard Weisman
Allegheny General Hospital
UPMC Presbyterian Hospital
Dr. Paul Gardener
University of Pennsylvania
Dr. Burkey
Dr. Raymond Price