Something else to think about…
Tegretol XR/CR ( extended release/ controlled release) works better for some than regular Tegretol .
Not many think to try that.
Happy to hear a success story from MVD. Congrats! Im planning on getting gamma knife surgery. Tired of using medication and im on lyrica right now seems to work a little.
Larry said:
When the meds quit working and I was in pain 24X7, I had an MVD. Been pain free for 5 1/2 years.
Thank you Scared and Angry gal, it's good to know that after some time I can allways try the Carbamazepine again. Recently I have been watching a video with dr. Ken Casey (lots of good info!) in which he says that after a while of using a med, you're body is tired of it and needs a break, after that you can trie it again. That's good news from him and from you.
Thank you Mimi, that's something to remember! (I've recently sent you a personal comment)
WellWishes,
Ellis.
Scared & Angry gal said in part:
. I could be wrong, but I think the Gapapentin is more for type 2 symptoms, the continuous, boring, buring pain... I have also read on here that folks with type 1 that were in a similar boat than you, as far as using tegretol, it worked wonders than it stopped, found that just stopping tegretol for a couple months and then restarting it again worked for them....its like the body just needs a break and then other jumper start or something. Best of wishes..
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S&A: Neurontin may be used with either Type 1 or Type 2 TN pain. However, it is the most often recommended med in combination with Valtrex, for treatment of post herpetic neuralgia from Shingles.
Regards, Red
Interesting, and after seeing some folks on here who have that neuralgia from Shingles, it makes me want to get that Shingles vaccine asap!!
I'm one of those who got Geniculate Neuralgia from Shingles. I will absolutely NOT get the vaccine. Scares me to death and I'm not so sure the virus has left my system.
Scared & Angry gal said:
Interesting, and after seeing some folks on here who have that neuralgia from Shingles, it makes me want to get that Shingles vaccine asap!!
Sorry to hear you got neuralgia from the shingles. I don't even know what the symptoms are from Geniculate Neuralgia but I am sure they are not fun. Heck, I don't really know what shingles is except you can get it after age 50 if you had chicken pox when you were younger. May I ask why you are against the vaccine? I just assumed it is a shot of the dead shingles virus, but I could be wrong. I am very interesting in hearing your opinions and story.
My doctors told me that it was live virus. Like I said in my other comment, I'm not so sure that the virus isn't still active in me. I still have pain (PHN) where the rash was from time to time and it gets angry red and raised up. I had never had shingles before and only knew of it by parents and grandparents and siblings who had them before. They are very painful, I couldn't have any type of clothing touching the rash area. Burning, rope burn, electric shock type pain that never stopped. I got the earache 3 days prior to breaking out in the rash. The earache never went away...my Neurosurgeon can see some type of inconsistency on the nerve and assumes (doesn't really know what they are) that it is scarring from the shingles since it all started with the ear. It's a very very rare neuralgia(only 15 cases like mine reported worldwide) because I had no shingles on my face or anywhere near the ear....my shingles rash was on my (l) thigh.
I'm very afraid of getting the Shingles again. The first time has nearly ruined my life,possible forever. I was so near suicide when I had them. The neuralgia that I was left with has given me a death wish more than once. So....I don't want to take the chance of the vaccine triggering another case of the shingles. I think the chance of that happening is greater than it not happening...just my thought. None of my doctors have indicated that it may be wise to get one and when I ask they wince and want me to wait. Too many variables I'm thinking.
Now if my GN had been caused by something other than shingles...I may have considered it just to keep myself safe from what seems to be a familiar tendency to getting the virus. I don't know if it's recommended for seniors that have had shingles before or not. Perhaps I'll ask my GP.
If you want to know more about my case I have written several discussions about it, please feel free to read them on my profile page. The most recent brings my case up to date...it is called.."My Geniculate Neuralgia story starting with shingles and a dx of TN"
I'd be happy to answer any other questions you might have...please feel free.
Thanks for writing, wondering and for being a friend.
Be sweet to yourself
Always~Laurel aka shinglesdidit
Scared & Angry gal said:
Sorry to hear you got neuralgia from the shingles. I don't even know what the symptoms are from Geniculate Neuralgia but I am sure they are not fun. Heck, I don't really know what shingles is except you can get it after age 50 if you had chicken pox when you were younger. May I ask why you are against the vaccine? I just assumed it is a shot of the dead shingles virus, but I could be wrong. I am very interesting in hearing your opinions and story.
oh, I am so sorry to hear your story. I cant even imagine having only 15 other souls on the entire planet who know exactly what I am going through. Forgive me for being confused, but so it is my understanding that you never had the shingles vaccine, but you had the shingles virus once, possibly still in you, and you only had one actual rash on your thigh, but this lead to getting the horrible GN in your ear. Yeah, I don't think you would be a candidate for a vaccine, because you had it or still have it and I am sure your body is now immune to getting yet another bout of it...you know, you wonder why these things happen.... especially if it is so rare..... and I don't really by the theory what ever doesn't kill you makes you stronger... I guess in some areas in makes you stronger, but lets be real, in other areas it weakens us...atleast that's my opinion. Thanks for sharing your story with me. I cant even imagine the pain you have gone through because if I even have an ear ache a bit, I hate it with a passion. Peace to you and a virtual hug sent your way :) Elvera
I'm not so sure that I'm immune to shingles...multiple family members have had them multiple times...I'm just not willing to "poke the bear" should it be sleeping peacefully... A vaccine would definitely poke )> Thank you for your kindness Elvera...I loved hearing from you. Keeping you in my thoughts as well. Be sweet to yourself Always~Laurel
Scared & Angry gal said:
oh, I am so sorry to hear your story. I cant even imagine having only 15 other souls on the entire planet who know exactly what I am going through. Forgive me for being confused, but so it is my understanding that you never had the shingles vaccine, but you had the shingles virus once, possibly still in you, and you only had one actual rash on your thigh, but this lead to getting the horrible GN in your ear. Yeah, I don't think you would be a candidate for a vaccine, because you had it or still have it and I am sure your body is now immune to getting yet another bout of it...you know, you wonder why these things happen.... especially if it is so rare..... and I don't really by the theory what ever doesn't kill you makes you stronger... I guess in some areas in makes you stronger, but lets be real, in other areas it weakens us...atleast that's my opinion. Thanks for sharing your story with me. I cant even imagine the pain you have gone through because if I even have an ear ache a bit, I hate it with a passion. Peace to you and a virtual hug sent your way :) Elvera
Hi again Laurel, wow, many of your relatives had it many times, wow, that is different, shows how much I know about shingles, lol....I can totally see why you wouldn't want to get the vaccine though.... I like how you say, be sweet to yourself... if anything I think , at least for me, this journey has taught me to be more compassionate with myself and others...Thank you for your kindness as well and I hope you have awesome days ahead!!!
The only problem is with the medication you’re taking if you take too much it can lower your sodium and you could die.
I talked to a doctor in India and he suggested that I take Vimpat generic is Lacosimide. It calls for just twice a day. But my doctor saw that just twice a day wasn’t helpful so she wrote the prescription for 150 twice a day. And I take 100 mg in the morning 2 50 mg in the afternoon and 100 mg at night. Then that’s every 8 hours the night time is 9 hours. So I hope this helps and explain to your doctor what I said and I have not had any problems for 6 years. Hope this helps