Hi all, just like to share that my husband had horrendous GPN. The neurologist had him on an infusion that required him being in ICU. That was to reduce the pain until the tegretol and gabapentin could kick in. Once they did, he still had zapping, but it was bearable for a while, then became so bad he was back to not eating and barely drinking. So the neurologist doubled the tegretol and the zapping stopped. Unfortunately the increased dose gave increased side effects.
I saw a study on acupuncture and TN. I asked around and found an acupuncturist who is also a doctor and has a PhD in neuroscience! So he started treatment with her.
In 4 weeks he had reduced the tegretol, and two weeks ago reduced the gabapentin. No zapping!!!
It may not work for everyone, but if you can find the right acupuncturist, you may be lucky like we have been. He will be stopping the morning meds soon, so fingers crossed!
I am curious about what was in the infusion. My husband was hospitalized for his pain and they slammed him with so many medications (in all good faith to control the pain) he went from a functioning (somewhat professional to a shuffling old man barely able to walk even with assistance in 3 days. This was four years ago, and I’m not criticizing anyone; they did what they could to control the 10++ pain. I hope this is a new protocol that would help others.
Hi Shiba. Acupuncture worked for me too combined with St John Wort tablets. So happy to be pain free now. Definitely not cured as it comes and goes occasionally if I don’t take the tablets but I have a completely different life now than before the acupuncture! Good luck
I am currently doing acupuncture every other day to try to get a handle on my TN. I’m just going to a community acupuncture place (inexpensive) but wondering if anyone has any specific suggestions for someone in the Seattle area who might have a more specialized knowledge of this ailment. They have also suggested moxabustion. I’m so far getting maybe a mild improvement of my symptoms (possibly just because it is so relaxing). I am getting lots of zaps (eating and talking are tough) and a zombie from meds though so would love to find some alternative approaches that actually work. Glad this has worked for you. Desperate times over here…
I have been going to accupuncture since Dec. 2015. First going twice a week for 1 month, once a week and so forth. I am now going 1 time a month. I am on no meds and feel that it has helped my pain. I do have pain in lip, jaw and tongue but not constantly and can help ease the pain when pressing on pressure points.
Hi Katherine, I started taking 3 tablets a day but now I find I can take one or two a day but if I stop taking them the zapping starts to come back. I take Medi Herb brand but I’m in Australia so not sure if this is just an Aussie brand? Each tablet contains Hypericum perforatum herb top fl. 1.8g stand. to flavonoid glycosides 18mg stand. to hypericin 1.05mg. Hope this helps because it has completely transformed my life. I was at the point of having surgery. Good luck!!
Hi Katherine,
I have used acupuncture and it helped my type 2 but not the type 1. I asked my acupuncturist who also is my brother in law if he knew of anyone in your area (he lives in Cashmere) and he suggested talking to Brenda Loew at 4110 Stone Way N. Seattle. 206-■■■■■■■■. I do not know of her and am not personally recommending or not recommending her but it might be worth your time to check her out. Good luck and I hope you can find some good help
Scott
Thank you! I agree. I wasn’t having much luck with treating my taser-like pain with acupuncture but it was relaxing and I’ve been told stress makes this worse so thought it was worth a try. I’ve actually heard Brenda’s name before. Might be worth reaching out to her. Thankfully I just got on tegretol this week and it is helping a lot as well. Thanks again for responding!
Hi,
Sorry for the delay in replying, but for some reason I couldn’t access this page.
My husband was on an infusion of Lignocaine to bring the pain down to where the other meds could work. I am happy to report that he is still pain free and stopped all tegretol 10 days ago and is on only 300mg of gabapentin.
Tonight he is stopping the gabapentin! Fingers and toes crossed he stays zap free.
Also, the acupuncturist said one of the most important aspects of her treatment was that he went to her within 3 months of the GPN hitting. If he’d had it for longer it would be much harder to heal.
We live in Sydney, Australia, and I will ask her if she can suggest any practitioners in the US. Our acupuncturist is Dr Im Quah Smith
We also did a lot of research on various supplements to help the nerve heal, and he’s been on quite a few. Dr Im checked them and approved of them. He takes:
ALA
Zinc
Methylated B,
Co Q10
Folic acid
Biotin
Rosehip vital
Magnesium
Multi B
B12
If sharing our experience helps just one sufferer I will be so glad. I wish the medical establishment was more open to complementary medicines and acupuncture.
professional to a shuffling old man barely able to walk even with assistance in 3 days. This was four years ago, and I’m not criticizing anyone; they did what they could to control the 10++ pain. I hope this is a new protocol that would help others.