Sometimes it's hard to find Positive Discussions, Success Stories or groups that are uplifting on the site. We want to make it easier for you to find them....
So if you leave a link to a positive Discussion or a Success Story Blog post on the site in the comments below, we’ll move it into the main body of this post for easy access for everyone!
While I was only diagnosed three months ago, I have had great success with a low dose of epitol(tegretol). I have not had an attack since a week after I started taking 200 mg. per day. While I do not know what the future holds, I am living pain free and hope for many years of successful treatment with this medicine. Fortunately, there are a lot of different medicines that treat TN pretty effectively for a lot of patients. ;-)
Great idea! We need to balance all the festering pain on this site.
My success story today is that after almost four years, I have navigated the stormy waters of misdiagnosis, etc. and got my MVD date today. So far the best and simplest advice was given to me by an oral surgeon: go into your surgery confident that it will work.
I deeply appreciate this site and all the friends I’ve made and the mountain of information that has been passed on.
Deep Bows
Bellalarke
CONGRATULATIONS!
Great idea! We need to balance all the festering pain on this site.
My success story today is that after almost four years, I have navigated the stormy waters of misdiagnosis, etc. and got my MVD date today. So far the best and simplest advice was given to me by an oral surgeon: go into your surgery confident that it will work.
I deeply appreciate this site and all the friends I've made and the mountain of information that has been passed on.
Deep Bows
Bellalarke
It’s great to have all these positive stories but the goal of this page is to have links to discussions. So if you can take the stories below and create a discussion, and then paste the discussions URL in the comments, we will link to it.
Bellalarke said:
Great idea! We need to balance all the festering pain on this site.
My success story today is that after almost four years, I have navigated the stormy waters of misdiagnosis, etc. and got my MVD date today. So far the best and simplest advice was given to me by an oral surgeon: go into your surgery confident that it will work.
I deeply appreciate this site and all the friends I've made and the mountain of information that has been passed on.
Deep Bows
Bellalarke
Congrats!! To you. I have an appointment on the 9/26. myself Please keep us posted how your journey goes. I wish you luck and success. Kudos to you for getting out of ths misery.
well i first got the pain in september of 2012, and im pain free now and as of about last week or sept 15, 2013...by pain free i mean from the surgery and everything, not just the tn. the tn was gone when i woke up in the icu. i did have complications from csf leaks, but even with all that the surgery is the way to go. the meds barely worked for me, so this was the best course of action. i hope you find what your looking for here. this site helped me a lot!
Just a note to say that gamma knife was my savior. Had surgery in December 2012, but it took until March 2013 for me to be near pain free. Am off all pain meds after weaning schedules (looong!) and only have a twinge or two on the side of my nose every so often, not enough to be medicated for. Don't necessarily rule out this bloodless surgery, and find someone who's done hundreds, my neurosurgeon was Dr. Neal at Marshfield Clinic in Marshfield, Wi. My local neurosurgeon had done 6 and I was not about to gamble and be #7.
Have a pain free day,
Mollycule
Being yesterday was the 1st TN awareness day. I just want to say I am so proud of my grandson, Austin who is 15 and in high school, normally he is pretty shy about sharing our lives with anyone other then his girlfriend and a couple close friends.He really surprised his grama he and his girlfriend made teal ribbons, put pins on the back and they made teal beaded bracelets, and Austin wore teal to school. I am so proud of him, he actually passed them out at school and explained TN to them and he told them he was doing it for his grama and for everyone else with TN. He truly is my Awesome Austin.He did it all on his own. I have goose bumps just thinking about it.Wishing all the best day possible!!!
Hi Mollycule, Do you have TN1 or TN2? After over a year of burning pain in my tooth I have been told many times I do not have TN because I don't get electric shocks. I told each doctor that you do not need electric shocks to have TN, but they ignored what I said. A few months ago I went to an oral/facial dentist who told me he did not think it was nueropathic pain, which I had been told I had by a different oral/facal dentist, and that I had TMD. He made a splint for me
and put me on baclofen. After havng no relief I was put on 25mg of nortriptyline, which also did not help. I just saw the dentist again and he said I have myofacial pain and ATN. He added trileptal which I am working up to 6oomg a day and he said it takes 2 weeks to work. If it doesn't he said I should try botox injected in the inside of the mouth,and if that doesn't work I should have gammaknife. I know this would be the last resort and I am glad to hear you had good results, but I don't know how successful it is for ATN and I am not even sure if that is what I have.
How did you find your doctor? I live in South Florida and was wondering if anyone reading this can recommend a good nuero that can give me a definite diagnosis So glad to be able to read postive things that will help me continue to search for the correct diagnosis and find an experienced doctor..mollycule said:
Just a note to say that gamma knife was my savior. Had surgery in December 2012, but it took until March 2013 for me to be near pain free. Am off all pain meds after weaning schedules (looong!) and only have a twinge or two on the side of my nose every so often, not enough to be medicated for. Don't necessarily rule out this bloodless surgery, and find someone who's done hundreds, my neurosurgeon was Dr. Neal at Marshfield Clinic in Marshfield, Wi. My local neurosurgeon had done 6 and I was not about to gamble and be #7.
Have a pain free day,
Mollycule
Here's a link to a thread generated by people who have had rapid relief with certain medications.
See http://www.livingwithtn.org/forum/topics/did-anybody-medication-give-instant-relief
Regards, Red
Got my diagnoses over 2 years ago....after years of Dr.s getting it wrong. Tegretol made me a walking zombie and when I switched to Gabapentin I realized I literally could not remember the entire month of August!! Tegretol is not fun.
I am on an average dose of Gaba and it works fairly well...if I behave myself, for me this means avoiding all my triggers which include the following....caffeine,citric acid, too little sleep and cool breezes on my face..that includes air conditioners so I sit in the far corner in the summer and shop very quickly in most stores.
My biggest struggle remains trying to find a job that doesn't involve AC as the cold breeze thing is the biggie for me. Right now I have a head cold so my face is not happy but this will pass.
I really wish that TN could get a more public profile as people who don't have this..including some family members seem to have the antiquated idea that if a disability cannot be seen it must be psychological. When I am sporting a scarf around my face in the windy spring I just tell any brave strangers who inquire that I have a sinus condition...that seem to satisfy them. To tell them the the pain receptors in my face are always on in full thrust and I need an anti-epiclectic to function I am pretty sure they would walk away mumbling"Nut job!"
Yes, you can live with TN it is about finding the balance that works for you,whether it is meds or surgery. Will my life ever be the same as it was pre TN...no....but I am o.k. with that-now. It took me a year or so to get there.
I have lived with TN for approximately 4 years. I could not function in my in my job due to inability to speak because of pain even though I was on 400-800 mg of Tegetrol and pain medication when TN would flare-up. Last fall was a terrible time and I started to try Myofascial Release massage. After approximately 8 weeks, I was consistently better and I gradually decreased my tegetrol dose until I was no longer taking it. I now do myofasical release approximately 1-2 times a month and I am taking 100 mg Tegetrol because I started to have twinges. Hopefully myofascial release therapy can help others too. It has saved my career and life.
Hi and Happy Thanksgiving to everyone. I had MVD surgery last Friday and so far, so good! Nothing has triggered the pain since and we're reducing the trileptal gradually. I'm home from the hospital after 3 days and 2 nights, with 19 stitches behind my right ear. Minor fevers in the hospital, some low serum sodium which has been a chronic problem from the trileptal. My husband insisted on staying in the room with me and we got lucky with private rooms, and chairs that pulled out into a bed, and they gave him pillows and linens. I even got vegan food requests adjusted. Not doing too bad at home-- sometimes shooting head pains, and it's a little hard to find comfortable head-raised sleeping positions. I'm not too tired, and taking it slow. The excellent neurosurgeon (Dr. Efron, of Redwood City Kaiser-- really great guy and excellent neuro team there) found vessels above and below the nerve and he had to cauterize it a bit. There's a tiny bit of numbness around my right lips corner, and along chin line, which may stay or go over time. I don't care-- I'd take this any day over the past pains I've had for 3+ years. This is a success story!
265-_MG_0023.jpeg (72.2 KB) 266-fr251of1.jpeg (221 KB) 267-fr171of1.jpeg (181 KB)Scott, I don’t understand your directions and don’t see why it matters. This seems to serve a purpose for people, they find it.
It's great to have all these positive stories but the goal of this page is to have links to discussions. So if you can take the stories below and create a discussion, and then paste the discussions URL in the comments, we will link to it.
Chiming in... my neurologist prescribed carbamazepine (Tegretol) 200 mg 3 times daily... got relief for a few weeks (I have MS and already have an intrathecal baclofen pump and gabapentin -- but no relief for TN). Then a pain management M.D. did a nerve block with Marcaine (bupivacaine) on V2 and V3 with no relief. And the best part was getting a percutaneous radiofrequency rhizotomy on both of these trigeminal nerve branches -- finally relief! Only lasted 2 years -- another lesion must have developed on V3. Had it done again with same neurosurgeon -- with less collateral nerve damage to that area than the 1st time.
I have been a TN suffer for a few years now, I take my medication every day which is 300 mg of Tegretol, I have been overseas twice since finding out what the indescribable pain with electric shocks were I took my medication everyday when I first found out it was TN and while overseas too. I have had no pain but still get ant like spasms in my face, that don't worry me but I know if I didn't take my Tegretol everyday religiously I would still be suffering pain. I also have a half denture plate on the top of my mouth which has never interfered with the TN. I am very happy that I have been pain free for so long and haven't had any re occurrence since starting on the Tegretol. I have never taken any other medication for my TN as it all is under control. (-:
