Dr John Tew in Cincinnati. The vestibular system is your sense of bslance. I took lyrica for several years but it eventually stopped working. I take carbamazepine 200 mg nowand feel little pain. It made me terribly ill for the first month but no side effects now.
wow, you are a trooper for giving the tegretol a full month of crap until your body adapted to it.. Cassie and so many others on here are an inspiration to me. I think we are all heroins and heros of our own crazy journeys with this and my journey with this has only just begun. I hope I can be as strong as all of you who have dealt with this stuff for years. That is a shame that happened to you Cassie, because I heard Dr. Tew was an excellent dr. What is lyrica?
Lyrica was marketed for diabetic nerve pain. It was new when I first tried it. In hindsight I guess it didn't work very well because I had the mvd while on it because the pain was so great. Dr Tew works at a teaching hospital so it might not actually be him doing the surgery. He has residents that study under him.
I am amazed that you stuck the tegretol for a month. I was done after 5 days. Now I’m on the lyrica and more functional despite breakthrough pain. Just makes me a bit nervous when I read that it stopped.working after a while. In fact this whole thing makes me scared. Wolf
After the mvd I was on Lyrica for almost 7 years and really liked it. When I experienced breakthrough pain I chose to change drugs instead of increase the dosage of the Lyrica because, in part, Lyrica is so expensive. Before the mvd my dr. kept increasing the dosage but the pain didn't get any better. I have read of people that have had great success with Lyrica so keep the faith, Wolf! Maybe there is an additional drug you can take for breakthrough pain.
Don, 3 months no pain after gk is awesome! I'm so happy for you. I sometimes wish I had TN rather than GN because there are so many treatments now that are working for TN patients. I don't get so many options as my condition is a bit rarer. I hope for continued pain relief for you! PeacenLove Always~Laurel
Don said:
I was all set for the MVD surgery until the radiologist,not the surgeon found i had a AVM that was likely causing my problem.The surgeon sent me to a cancer center where i had a Cyber knife treatment for the AVM hoping to kill two birds with one stone so to speak.Well,i thought it worked,but about 7 or 8 months later i was slammed hard again with TN pain and severe attacks!The cancer doctor suggested another Cyber knife on the nerve this time.I was all set to go and the doc himself called and said that the state had shut down the procedure!!He said someone goofed and didn't install a filter..?I never really found out the truth,but that is when i found Dr.Desoloms at Presbyterian in Dallas.His team took great care of me and he also agreed i wasn't a good candidate for the MVD.He is also a neurologist/neurosurgeon.They say it can take 3 years for the radiation to shrink my AVM so im hoping that is happening and i never have the TN return.Right now i'm pain free thank god with only occasionally a weird feeling around my eye and eyelid area like slight tingling,maybe hair laying there(wish i had that much hair)Haha! Peace to all.Have a great less/no pain day!
shinglesdidit said:
Don...I had the GK surgery and 6 months out it didn't work...now I am doing the implants...each time the affects seem to be different but I have had a small reduction of pain so I'm sticking with it....otherwise it's MVD for my geniculate neuralgia. I always back off on my meds too, just testing to see if the meds are reducing the pain or if the pain is actually changing in some way ie getting less. So far I only get it proven to me that the pain is still there but I've gotta keep on testing the waters...know what I mean
Don said:I always backed off the meds as soon as the pain allowed it.My Tn would totally disappear between episodes,but came back worse each time.I don't think it was going to leave this last time though.It would ease up and then slam me terribly.I decided to have Gamma Knife done and am pain free now the past 3 months or so.If it returns i will try the stimulator implant.Yea,the meds suck! Hang in there.
I have not had MVD although am a candidate for it.....Oh! Hello Jo! I am currently doing what's called a P-Stim. Am on my 3rd implant of that. If you want to know more, let me know. I have hope for this as I have geniculate neuralgia, not TN and nothing has worked so far...this has reduced my pain a little, during treatment so something is something...I'll not knock a thing. What I wanted you to know though is that although only approved for treatment in the last year in the US, the P-Stim is working very well for TN patients as well as many other pain sufferers. Ask your Neuro for info as well.
Feel better my friend!
PeacenLove Always~Laurel
Hi WendyJo,
There are so many different combinations of meds that could be tried. Neurontin and gabapentin are almost exactly the same drug. Taking one of those with pain meds or a muscle relaxant or the newest version of anti-epileptics called Trileptal might be an answer for you. People say the side effects of Trileptal are less too. So many people say they are either incapacitated by the pain or the meds. There is a document on this site somewhere that tells all the different types of meds that people here use, and usually more than one. I think there are about 60 different meds for TN. There are also discussions about other little tricks you can do at home to ease the pain, along with your meds. And discussions about natural treatments. Here's one I started where the replies had more answers than my post did. http://www.livingwithtn.org/forum/topics/share-your-little-helps-with
I hope you can continue to have flares of 2 weeks or less. Few are that lucky.
Best wishes,
Sheila
Dancer,
Which surgery did you have? Just checking all options.
Thanks,
Maris
It’s ok pain may be different in nature each time also duration of attack & remission will vary with time …
Bless you
Hi Karen,
The cream doesn't have a name per se. It's a combination of 5 drugs: Ketamine 100, Gabapentin 60, Clonidine 2, Ketomine (maybe Ketophen) 100, Atriptaline 20. I'm using abbreviations from my dispenser, so sorry for this lack of clarity. The cream is dispensed by "clicks" - one dose is one click. Sometimes I used two clicks, but not often because I'd start to feel zombied-out. Sometimes I'd try to use half a click, and it was enough. It would depend on the day.
I need to let you know that my TN was related to very high stress. I went through a six month investigation for breast cancer (only have ADH!). My TN started a day or so after I heard I could have cancer, it disappeared the day I found out I did not have cancer. The cream helped while I had the TN but the TN completely disappeared magically when the stress I was reacting to, ended.
For the cream, you can contact Belmar Pharmacy in Lakewood, CO. 1-800-525-9473. Ask to speak with Marty Jones, the pharmacist who made my cream. They mail things everywhere.
Hope this helps!
Martha
kcall83 said:
Hi Martha, what is the name of the cream?
Karen
Mu said:Hi WendyJo,
Sorry to hear you're so miserable! I've had two bouts with TN. One lasted a short time, the second one, for six months. I used a topical cream made at a compounding pharmacy, and it really made a difference. I did still need acetomenaphen, but at a reduced amount and not all the time. You might be able to tolerate a cream or gel that's pre-made for this, and from a regular pharmacy, so talk with your doctor about it. I used the compounding pharmacy because I'm allergic to a lot of "base creams and gels" and I'm highly sensitive to oral drugs. The drugs in the topical cream did not zone me out. I placed in on the base of my neck where the nerves go into the brain, and along my ear on the effected side where the nerve comes into the face. On the worse days, I rubbed it on my face along the nerve track. It was very easy, and made it possible for me to eat properly, talk, and sleep better. I hope this helps!
- Martha
I have just come home from a very emotional appointment with my Neurologist. I have continual pain and it has now decided to concentrate itself in the roof of my mouth and up into my nose. I had my first attack in 1996 and then I had No Pain whatsoever for 6 years and then it just came back and we haven't been able to get in under control as yet. My Neurologist is really supportive and we are trying to get on top of this as a team. You need to be very honest about everything with your medical support people, even if it does sometimes become very emotional, as my appointment today did. I have tried so many different medications and today we are trying 30mg of Escitalopram once a day. It is definitely not a 'one suits all' condition and you just have to try to find something that will work for you. I too have tried many alternative therapies and have had a little relief for a short period, but I do think that medication is needed to try to 'stop the nerves firing all over the place', as my Neurologist describes my pain. Good Luck with this bugger and try to look after yourself and find something to make you smile at least once a day.
Lynn