I see alot of people with TN1 that have mvd's and are painfree is there any type 2 patients or nueropathic patients that have found a way to get on with your life and who has had relief from meds or surgery??
Great question and one I wish to ask as well. I have spoken to a Type Two Person who had successful MVD (one person). I see or have heard about others where it wasn’t so successful. I have been in contact with two people with Type 2 who have done the neuro stimulators with fairly good success. Yes, I too wish to hear more about successful procedures etc. for those with Type 2 TN.
Yes this is a great question. I have Type 3 ! I say Type 3 since I read Reds explanation of Type 2. I believe i have neuropathy after a cosmetic procedure. I have taken B12 and have had magnetic therapy both which seemed to have helped. Mine is not 24/7 and is mild compared to most peoples which I read on here. Amtriptlyine was also a great help at bedtime, which is when mine is at its worse.
I feel that I've been lucky - I had a long period of pain trying to get a diagnosis and trying to get my doctor to treat me. But now I'm taking a combination of tegretol, gabapentin and amitriptyline and a lot of the time I'm pain free. I have the option of increasing the gabapentin to try to get even more pain relief but as it caused a lot of side effects when I first started taking it, I'm giving it a few weeks to see how everything settles down. It has only been 3 or4 weeks but I really feel like I'm starting to get back to "normal".
I know that stress/tension makes the pain worse so I'm doing all I can to manage stress and stop it building up, which helps a lot. I was terrified when the weather got bad this week, and I have had a lot of work related stress since Christmas, but the pain is still under control, and I know that if it does get worse again I still have further medication options. I've been told I'm not likely to be a candidate for some of the other treatment options so it's good to know there are still things there to try if I need them.
Subject to a bit of form filling I should be starting a new job soon, and after months/years of hardly ever doing anything social I'm getting out and about again and enjoying myself!
I understand Frank Sherwood spoke about his very low fat diet at a Facial Pain Assoc. Meeting several years back and currently there is a doctor picking up his findings and going further with this scientifically. It is 10 grams of fat daily and I’m not sure if there is much more to it than that. I’m already reducing my fat intake greatly and will probably officially start it tomorrow. However, I’m going to also reduce the other things we know are bad for us in general like sugar, bread and red meat. But I understand that the fat gram thing has to be accurate…no more than ten grams. Also heard it works better on TN 1 than TN2. Should be a little tricky, since 10 grams is not much, but very well worth it if it helps! (This was suppose to go someplace else. Oops)
Hi, What is magnetic therapy? Who would administer it? How much B12 are you taking? Thanks.
elstep said:
Yes this is a great question. I have Type 3 ! I say Type 3 since I read Reds explanation of Type 2. I believe i have neuropathy after a cosmetic procedure. I have taken B12 and have had magnetic therapy both which seemed to have helped. Mine is not 24/7 and is mild compared to most peoples which I read on here. Amtriptlyine was also a great help at bedtime, which is when mine is at its worse.
That it wonderful! Congrats! I have just lowered my trileptal -- and I actually have a memory again -- YAY!! -- but the pain is coming back and so I'm going to increase the gabapentin. Have you had any memory problems, etc on tegrotel? I have wondered if I should try that.
I have been told that surgery is not an option for me.
ruth13 said:
I feel that I've been lucky - I had a long period of pain trying to get a diagnosis and trying to get my doctor to treat me. But now I'm taking a combination of tegretol, gabapentin and amitriptyline and a lot of the time I'm pain free. I have the option of increasing the gabapentin to try to get even more pain relief but as it caused a lot of side effects when I first started taking it, I'm giving it a few weeks to see how everything settles down. It has only been 3 or4 weeks but I really feel like I'm starting to get back to "normal".
I know that stress/tension makes the pain worse so I'm doing all I can to manage stress and stop it building up, which helps a lot. I was terrified when the weather got bad this week, and I have had a lot of work related stress since Christmas, but the pain is still under control, and I know that if it does get worse again I still have further medication options. I've been told I'm not likely to be a candidate for some of the other treatment options so it's good to know there are still things there to try if I need them.
Subject to a bit of form filling I should be starting a new job soon, and after months/years of hardly ever doing anything social I'm getting out and about again and enjoying myself!
I have found I have problems with word retrieval, and memory, but I am the sort of person who makes lists all the time and I rely on that. I haven't missed anything vital yet. I'm on quite a low dose of tegretol because if I took any more my brain got really foggy and I struggled to function. The gabapentin was slightly different - I got very dizzy and spaced out. But it settled down in less than 2 weeks. The tegretol and the amitriptyline both helped but for me the one that made the real difference was the gabapentin. Once everything settled down it also seemed to have fewer side effects than the tegretol. If possible at some point I would like to reduce the tegretol and only take the gabapentin, but at the moment I don't want to change the combination that's working! Although side effects vary from person to person, a number of people have mentioned having brain fog with tegretol.
I hate the problems with memory and words because I write. I find it extremely upsetting. It also makes me wonder what else it is doing to my brain, which I like a lot. :) I find the gabapentin to be the best on side effects too. I have yet to find a combo that I like in terms of pain and side effects. I still find the whole experience to be a living nightmare.
ruth13 said:
I have found I have problems with word retrieval, and memory, but I am the sort of person who makes lists all the time and I rely on that. I haven't missed anything vital yet. I'm on quite a low dose of tegretol because if I took any more my brain got really foggy and I struggled to function. The gabapentin was slightly different - I got very dizzy and spaced out. But it settled down in less than 2 weeks. The tegretol and the amitriptyline both helped but for me the one that made the real difference was the gabapentin. Once everything settled down it also seemed to have fewer side effects than the tegretol. If possible at some point I would like to reduce the tegretol and only take the gabapentin, but at the moment I don't want to change the combination that's working! Although side effects vary from person to person, a number of people have mentioned having brain fog with tegretol.
Janet I took the required amount on the bottle of b12 (cant remember now because i was taking so much medication at the same time) as I am also on steroids and other meds for an auto immune problem. My specialist sent me to see a physiotherapist and after hearing my history she suggested this treatment as she explained it helped healing. I did explain this to Red and he dismissed it ( I do value Reds opinion) yet it helped me. I had three sessions. She held a magnetic gadget above my face on each occasion. It sounds crazy I agree and yet......
Hi,
I have type II TN caused, I believe, by badly treated or rather misdiagnosed infection in my teeth which then spread further into the jaw bone (surgeries to get rid of the infection made the pain worse).
My story is not of a success as I still get pain and there's always tension in my jaw and funny sensation in half of my lips and surrounding skin, but I have been off drugs (Lyrica and antidepressants) for about a month now and have been doing ok.
What helps me best is a combination of approaches - acupuncture, massage - I can stand facial massage and I benefit from it, but I realize that for some people on here it may trigger more pain, upper cervical adjustment, physiotherapy and mineral and vitamin supplements (I noticed improvement with B12 sublingual pills and magnesium chloride liquid or tablets).
I have also spoken with a doctor of "alternative" medicine who looked at my typical diet and said I need to cut back on red meats, take as little sugar as possible, eliminate bread or buy gluten free, and stop drinking white wine and beer. He said there's not much he can do to help with my ATN, but I happen to have also high blood pressure, which may be causing more pressure on the facial nerves and you can combat high blood pressure by adjusting your eating and drinking habits.
Hope this helps,
oli
Hi I’m only new and this is my first reply but I’ve been suffering for a few years and tried all of the medications mentioned above plus some more. My best pain relief came from a combination of Lyrica and carbamazepine, however I’ve now been drug free since August following my consultant giving me a pulsed radiofrequency stellate ganglion block injection. I don’t understand the science behind why he injected there and not into the trigenimal nerves but I can’t say I care either as I had a few months of blissful pain relief before it returned earlier this month. I decided not to go back on the meds as I found it hard to work full time with the side effects but had my second procedure today…I’m just hoping the results will be as effective or better…fingers crossed! 
I’m in a state of shock as knock on wood, but today and today alone I’ve had about 75% pain improvement. Don’t know what tomorrow will bring. But I take Desipramine and use a compounded cream with Gapapentin, just started acupuncture and a very low fat diet. First decent day I have had in many many months. I’m praying for many more. I know this is hel l.
nomad, that is great news! every day like that is a reason to celebrate!
So what kind of specialist did the magnetic gadget? I would be open to trying it since it is non-invasive. So glad it worked for you!
elstep said:
Janet I took the required amount on the bottle of b12 (cant remember now because i was taking so much medication at the same time) as I am also on steroids and other meds for an auto immune problem. My specialist sent me to see a physiotherapist and after hearing my history she suggested this treatment as she explained it helped healing. I did explain this to Red and he dismissed it ( I do value Reds opinion) yet it helped me. I had three sessions. She held a magnetic gadget above my face on each occasion. It sounds crazy I agree and yet......
She was a physiotherapist. This helped Type 2.
How long did the results last for you? Are you able to be off the meds?
I was only on Amtriptyline and yes i am no longer on them. It took 5 sessions. My ache used to come and go. My collegue with Type 2 on a 24/7 bases caused by dental work was on a cocktail of meds also went for treatment on my recommendation but she had to go back on the meds. I have not caught up with her recently to hear the latest but I will keep you informed when I have.
I have atypical vs. neuropathic pain (my pain dr thinks its neuropathic). I’m not pain-free but have had enough relief with meds & acupuncture to make living possible. I’m still restricted on what I eat as my worst pain is in the teeth.
At least for now, I’m getting perhaps 75% relief from meds and acupuncture plus have Percocet for breakthrough pain. I’m never 100% ok, but I do have some good days now.
I hope to still be able to get the Perc as needed for the BT pain, as I feel a little more in control.
It’s been hard. I’m sure there have been a few people who don’t believe me, but I’m not sure I care. This has been hel…