I've had TN for four years. Tried most of the meds, on a large of dose of tegretol became sodium depleted and fell on my head on the brick walk! No damage to brain, lucky me! Now I'm on 100 mg. tegretol and have a standing order for sodium level blood test. I now have same experience of 2 weeks more or less ok, then 2 weeks stabs. I would try surgery, except I'm afraid to drool afterwards! So I tell myself, "don't fret my pet, because you get what you get!" When it gets really bad I mutter, in a British accent, "What cahn't be cured, simply must be enduahed (endured)". I'd like to know success rate of surgery, because my sense of humour is getting low! Dorsey
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 had TN for 23 years. During that time in the initial stages my pain was so severe that I just rolled up and cried.
However, I have learnt to cope with it. Now I am using 200 mg slow release tegretol.
During the last year I have had a major change. I had a tooth removed on my side with the Tn and you would not believe what happened. There is no pain on my left side but I have a burning pain on my right side which does not want to go away.I manage the pain fairly well but I am amazed at some of the doses of Tegretol people are using. I would advise those taking the high doses to check frequently with your doctor because these high doses can give you problems with your liver.
I'm so sorry and truly empathize, I woke up last December with a weird headache and face pain and have it 24/7 since.
The meds gave me horrible gastritis and stomach problems so I cant take any of it. Since my nerve pain is in the upper trigeminal nerve across the eyebrow and also the top of my head I asked to try botox for migraines and it helps reduce the pain for about 2 out of 3 months. I'm not sure where your pain is but if they can use botox I would give it a try. My insurance even covers it as a treatment for migraines since the nerve pain does cause resulting migraines in my case. Hope this helps, hang in there.
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!
thanks for your story.. I am thinking about getting a tooth pulled opposite my tn site.... it either needs pulling or a root canal, because after a large cavity was filled recently it is hurting constantly and the tooth nerve is inflamed now, but I am afraid to do either procedure because of exactly what happened to you..... Can you describe further the constant burning pain you now have? Does the pain feel like it is coming from a tooth pain? jaw pain? I am very curious. I don't know which is more painful, living with a tooth that needs to be extracted or the unknown pain that can come from pulling it, which may trigger TN...... badjon49 said:
I have had TN for 23 years. During that time in the initial stages my pain was so severe that I just rolled up and cried.
However, I have learnt to cope with it. Now I am using 200 mg slow release tegretol.
During the last year I have had a major change. I had a tooth removed on my side with the Tn and you would not believe what happened. There is no pain on my left side but I have a burning pain on my right side which does not want to go away.I manage the pain fairly well but I am amazed at some of the doses of Tegretol people are using. I would advise those taking the high doses to check frequently with your doctor because these high doses can give you problems with your liver.
We all understand! I feel like a zombie right now on this 1600mg tegretol a day. I don't know what else I can do though because I don't want the pain either. :-(
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!
Those of you that have had the MVD surgery: I am curious where you went and how long it has been beneficial to you.
I have taken notes as I've read thru each comment on things I can try. I have been seeing a chiropractor most recently and he of course says no to a surgery. I guess that is common practice for that area of study.However, my pain needs a plan!
I have scheduled a neurology appt. on Dec. 14, as I feel the need to have one in my arsenal again after a few years of having none. (mine moved).
My sincerest sympathies go out to all dealing with this and I only hope you all have support systems and someone giving you hope.
For me the MVD helped for 8 weeks before the pain came back full force, but my symptoms are atypical rather than type 1 so it was low odds to begin with. The bill to my insurance was $74k
At the moment I take 100mg nortriptyline, 120mg cymbalta, 2x 15mg oxycontin, and 1x percocet per day, I'm 29 and have had this for a little over 2 years now....
I don't know what I am more astounded by: the bill or the meds you take: or the 8 weeks. I am fumbling for words as I'm sorry just doesn't cover it.
I'm 60 and have had it since '01. Of course it comes and goes and there have been times at it's worst I don't know how I came through it alive, because I certainly wanted someone to shoot me. I have developed a list (my arsenal) that I start on when it flares up. At present I can feel the calmness is taking over more so than the pain and hopefully I can enjoy the holidays with family. I have found darvacet to be of help if I start soon enough, but can no longer get it. I have a handful available for the future. I do 'up' my carbamezine(sp?) also, but never stop it.
Thanks for the info and I pray for miracles for all who suffer.
Those of you that have had the MVD surgery: I am curious where you went and how long it has been beneficial to you.
I have taken notes as I've read thru each comment on things I can try. I have been seeing a chiropractor most recently and he of course says no to a surgery. I guess that is common practice for that area of study.However, my pain needs a plan!
I have scheduled a neurology appt. on Dec. 14, as I feel the need to have one in my arsenal again after a few years of having none. (mine moved).
My sincerest sympathies go out to all dealing with this and I only hope you all have support systems and someone giving you hope.
Hi Jo, I've had TN type 1 for 5 years and had the MVD surgery August of this year and was immediately releived of all pain. I have been pain free ever since and hopefully it lasts forever. I would encourage you to speak to your neurologist about this option. It could the best thing for you but only you can make that decision as it is "surgery." In case you should opt for it, I would suggest you find the best neurosurgeon available to you who has sucessfully perfomred this surgery many times.
But it was a total breeze for me. Went to work full time 9 days afterward.
jo said:
I don't know what I am more astounded by: the bill or the meds you take: or the 8 weeks. I am fumbling for words as I'm sorry just doesn't cover it.
I'm 60 and have had it since '01. Of course it comes and goes and there have been times at it's worst I don't know how I came through it alive, because I certainly wanted someone to shoot me. I have developed a list (my arsenal) that I start on when it flares up. At present I can feel the calmness is taking over more so than the pain and hopefully I can enjoy the holidays with family. I have found darvacet to be of help if I start soon enough, but can no longer get it. I have a handful available for the future. I do 'up' my carbamezine(sp?) also, but never stop it.
Thanks for the info and I pray for miracles for all who suffer.
Hi Wendyjo - I'm probably echoing a few others here. Have you asked your doctor about MVD surgery? I had mine in April of this year. I was mightily disappointed to feel the pain whilst in ICU recovery! This continued on and off for about two months... and then since July (bar one solitary attack one morning after a particularly active day at work), I've had nothing. At all. It is like life has started over again and for that I am truly grateful. I only wish I'd insisted on it earlier or changed neurologists (the one I saw was not keen at all to have me undergo it). I just happened to "luck out" when a pain specialist was allocated to me on one of my last hospital stays due to the pain. Maybe one of the other surgical options might be the way for you to go. I guess it is my own experience talking.. but be as pro-active as you can.... insist if you feel you need to. It's your trigeminal nerve, your pain, and you're worth exploring every option you can. :)
WendyJo; Maybe you could try acupuncture. I had pain for 4 years, finally the surgery with silicone disc inserted, last about 9 years, then began again horrible. Wanted no more surgeries. Started the acupuncture last December, after thee weeks of treatment I was pain free. Have been getting it every 6 weeks and have had no reoccurence of the pain. Amen! Dr. Kelly @ the cleveland Clinic is my doctor , he is a M.D. check out his website. Jeanne
Hi wendyjo–
My heart goes our to you- remission is such a double whammy! Better, but when is it coming back! Aaaacckkk!!! I feel that no two cases are exactly the same, but what I have learned is that we all have to be our own advocate. Only you know how you feel. My Neuro told me up front, there were 2 treatment options, meds, then surgery. But he would have been happy having me visit every 2 months, and adjusting my scripts forever! It was 3 years, when I decided that I wanted to find out if I was a candidate for a procedure. I was told gama knife was not the best for TN. In the right hands, an MVD had the best chance. So began my quest for the best situation. And here I am, 5 months post op. No pills, no pain, taking each week as a gift. So - learn and read all you can, and do the best that you can for you!!
Hi I have had TN for 4years now. It took 6 months to finally find out I had TN.. I have been blessed with a wonderful neurologist. I have been on trileptal 1200 mg. for about a year and have occasional percocet 10's for pain. I have found out very cold weather and stress seen to make the pain worse. But for now I can live a pretty good life. I go for periods of time on just 600 mg. trileptal but sooner or later I need to up the dosage. I don't feel surgery is nessesary right now. The meds are my best friend right now, but if they start to fail me I shall look into MVD. I am so gratefull to have all you TN friends because no one else could imagine this hell we have. It is so important to have a good understanding Neurologist don't settle until you have found the best!! Everyone Hang In There !!
I feel badly telling this, since so many people look to the mvd for relief, but I had the surgery in 2006 and it stopped the pain for three years but...I am one of the 1% who lost my hearing and vestibuler system on the side of the surgery. I don't recommend mvd but I don't discourage anyone from considering it, either. Just carefully consider all of the possible side effects.
So sorry to hear you lost your hearing on one side. What is the vestibuler system? I think it is important for everyone to hear the success stories and the not so perfect stories as well, if that is what has happened to someone like yourself. Can I ask who did your surgery? What are you doing to relieve the pain now that 3 yrs has passed? ..... Elvera
