Arjuna would like some input from you. Yes, YOU!

Hello everyone

It’s not often that I get to introduce a very special member of the Ben’s Friends team with a unique and interesting project . Arjuna is one of our interns, a university student volunteer who is hoping to have a career in one of the medical professions. He has been doing an exceptional job on several of our communities greeting new members.

Imagine everyone’s excitement when we heard that Arjuna was planning a Ben’s Friends Rare Diseases conference at his university in Toronto! As part of the conference program, Arjuna would like to present some insights from our members.

Could you help Arjuna by answering a few questions? Your answers will provide interesting discussion material at the Rare Diseases Conference later this month.

Your participation will help aspiring medical professionals understand the unique challenges and problems facing people like us, whose lives have been touched by a rare disease or condition.

Thanks for whatever help you can give

Seenie from Moderator Support

Over to you, Arjuna!

Hi Arjuna
I am in Toronto.
I have the atypical type of TN or the" I don’t know what the heck she has".
If you are interested in connecting with me-here I am.
I could also possibly hook you up with thee leader of the TN group for the Toronto area if you are interested.

Arjuna, would you like input from the parent of a young person who died from the prescriptions used to treat trigeminal neuralgia? What questions do you wish responders to address?

I’m happy to help in any way I can. I have classical type 1 TN. I had it for about a year and a half and it was put into remission by B12 injections, which I still get 4 weekly. It has never returned as badly as it was the first time, but it is with me constantly now as I choose not to take medications. I believe it was caused by a B12 deficiency which the injections helped but were probably too late to cure (they say that B12 deficiencies can lead to permanent nerve damage - I think I may be a case in point). Let me know if you would like to know anything further.

It might be helpful to have a questionnaire so that we provide the kind of information you need.
I have ATN; my mother had TN. My left side is affected.
I have tried just about everything out there in the way of meds. I currently take clonazepan when I have a flare up, along with a natural herb. I am not a candidate for any type of surgery. My pain usually starts in my ear and moves into my eye. It usually lasts for days.

I would be happy to answer questions that you have. I have both type 1 and 2 TN.

Happy to answer questions. I am 71 have had TN - both sides for over 14 years now… Am treating it with B12 and magnesium currently in remission for 6 months.
Cold triggers my TN more than anything - I am hoping this year that is will not come with Winter, when I suffer most. I am hoping the B12 tablets will have built up the nerve sheaves and help protect the nerves from the blood vessels. I also have had other nerve damage. I am trying to not take Tegretol - only when I really need to - to function. I am a very busy person and my neurologist says I can block the pain because I am very busy with volunteer work.
By not taking Tegretol all the time I have not had to progress to other medications - have tried some others but hate the effects on my brain. Keeping tegretol to a lower dose & having a high pain threshhold means it still works for me; when I really need it.
So food & vitamins are my best help… Regards GP

My name is Donna,
I have TN for over 15 years (root canal)…2 x Gamma Knife (2010-2014) & MVD 2013, got some relief for short periods, MVD didn’t work for me.
Current meds-carbamazepine 200mg 4 times a day, Amitriptyline 10mg 1 time a day, and Sertraline 50mg 1 time a day, I usually decrease meds in warmer months.
Cold is bad/winter…and low barometric pressure.
I would love to get off the medication if anyone has success with anything I would love to hear from you.
I hope this helps Arjuna, please find a cure for this awful nerve disease .
thank you