I have MS with the TN that sometimes comes with it. For the past 5 years or so 300mg Trileptal at bedtime has been all I have needed. Since Christmas time this year, I have had 4 attacks lasting longer than ever before, once nearly 2 hours, long enough to make me understand why it is called the suicide disease. Since the 26th of January I have been taking 300mg Trileptal (oxcarbazepine) every eight hours, and that is keeping the TN episodes away. I am groggy, I can’t walk without holding on to something or having something nearby to grab when I fall, and I can’t stay awake. But the pain is gone (for now) and I will take that. I have always tried to keep my blood level of “ox” as low as possible so that I could function without these disabling side effects. Screw that, 4 episodes in 3 weeks was too much, so I’m tanking up as much as I need to stop it. When twinges wake me up, I take 150 mg more for good measure. I am self-dosing right now because I am fresh out of neurologists, and I don’t have an appointment with a new one until the end of March. I’m in a rural area and they’ve all gone elsewhere, and I have to go to St, Louis for the new one. It is so horrible, the pain. But I am not in pain now and do not have any threatening shocks. I compare it to having a wire brush plugged into an electric outlet and then having it hammered into my face and then being set on fire.
Sorry for feeling sorry for myself right now, it’s just that the TN is trying to take over and if the medicine stops working I don’t know what I will do.
Have you considered having any procedures i.e. MVD? I am sorry that you are having such flare ups and the medication can be difficult to tolerate with side effects however it manages the pain. I had similar reactions to it as the dosage was increased. They also added another med ( something with a B- perhaps Baclofin?) as a “cocktail”.
I was diagnosed in 2008 after 4 years of 16 different doctors, unnecessary procedures, had 2 MVD’s with 2 different doctors 3 years apart and the last was in 2012 and have been pain free. The surgery was worth being pain free. Worst side effect was nausea right after but would do again in a heartbeat. Is the neurologist that you are seeing specializes in TN? I highly suggest you find someone through the facial pain org with the specialty. My dr is Abhay Sanan in Tucson and lucky he is where I live however was willing to go anywhere to find an experienced doctor. He was amazing and 11 +years later I am so thankful I found him. I wish you luck and there are other procedures that you might consider if not a candidate. Hope this was helpful and this is a wonderful community of support.
Dear S, I have been where you are and I’m so sorry. I’ve had TN for 18+ years and been on every drug available, my go to was carbamazepine, it worked but I was high most of the time. I’ve had many procedures even MVD, didn’t work for me, it’s a very serious surgery. Then I changed neurosurgeons and he suggested percutaneous rhizotomy. For the first time in 18 years I’m pain free and no drugs! This procedure is so simple, you’re in and out of the hospital in a few hours. Best thing I ever did and I will do it again. You need to see a neurosurgeon that specializes in this procedure. I live in Knoxville, Tn and my doctor is Dr. Carter Gerard, he’s at UT hospital. If you need anymore information don’t hesitate to call on me I’m here for you and want to help. TN is awful and not everyone can empathize, so keep looking for a doctor that understands and cares.
I had an MVD and was pain free for only 2 weeks!! I’ve had 2 Glycerol Rhizotomys and with the 2nd one I’ve been pain free for approximately 7 years which has been great. Its a “day stay” procedure. Also, consider medical marijuana products if legal in your state. Good luck!!
TN will chew you up and spit you out if you don’t keep fighting it. Some of the people who responded to your note are correct. I’ve been with this for 35 years and have done four different procedures. You have to find a good neurosurgeon that you trust That will take the least invasive path to try to help you; and be careful with self-medicating, although we all have to resort to that to survive. Know that there are thousands others like you who have been to the place where you are now, and you will come through eventually with the solution that can make your life livable . Hang tight and do your best to find a good surgeon, but it has to be one that makes the most sense to you. Prayers to you my friend.
Dear S, first of all, I want to tell you how very sorry I am that you are going through what you are. I have had TN for 30 years now, and have seen more specialists than I can count. I’m not a candidate for any surgery, I have to rely only on meds. One doctor I will never forget, told me at the Mayo Clinic, don’t you ever let anyone tell you that you have to learn to live with your pain. There are always new medications to try, and the possibility of new procedures, just don’t give up he told me.
I have now found a pain specialist, who is also a neurologist. When I get painful episodes, he tries working with me to find a temporary fix to get me through the rough patch.
I wish you the very best, and don’t ever give up.
Im so sorry. Been there. I wish I had something to say that would help, but I do not. Very thankful your rescue medicine is working. Hopefully you can get into the new neurologist sooner than March…call and explain, beg even.
I’m sorry you are struggling. I had been on Carbamazepine for 17 yrs before my body wanted more. I was at 1200mg a day . Then it stopped working. Even though it got me through that time it was a constant battle with balance problems and trying to get through the day with constant shocks to remind me it was always there. Then this year could not eat , talk, or drink for three months which i ended up in the hospital then i was put on Oxcarbazepine.
And i am at the 1200mg level. Trying to get through each day with the side effects and worries that i won’t have no other medication after this drug stops working. My neuro said to me to go see a neurosurgeon. Which i did. They suggested glycerin. But the surgeon said you have MS and it will come back. Also he pointed out all the other problems with this procedure. So i sit here constant worries about tomorrow.
I feel you.
I know how hard it is to find a doctor really knowledgeable about TN. At the time I was diagnosed and did some research, there were only three medical facilities who had experts. I went to Johns Hopkins because of their reputation and because I had family near there who could help me. My doctor was excellent and the MVD stopped my symptoms. We’re going on 6 or 7 years now. At the time, the prognosis for MVD was 3 to 15 years.
The only med that helped control my symptoms at the time was Lyrica. I’m now dealing with spontaneous shingles pain, which is very similar. I’m on a prevention dose of Valacyclovir along with a generic for Lyrica.
This doesn’t mean that this method will work for you, but I share it for what it’s worth. Most important, find yourself a good doctor even if you have to travel. Check the feedback for potential doctors before you waste your time going to many. I believe one of the other facilities was in California. The third was in the midwest somewhere.
All best wishes to you. Totally ok to feel sorry for yourself. It’s natural! I once went 31 days non-stop with constant pain, unable to even sip through a straw. I could do nothing that caused my face to move. Eventually the Lyrica kicked it. Problem is your body will eventually get used to it and it will lose effectiveness. Glad you reached out. That’s what this site is for. I hope you find the treatment you need and comfort from others who share your pain.
I have TN 2 and this is a very difficult disability that changes your life. This site is for guidance, love and support. I’m so sorry the gabapentin is not working. I too am back on it. For me i also ice my trigeminal nerve which helps calm down the nerve during flares.
There is hope, never give up. I have had served surgeries, procedures and gone through pain management when told there is no cure. I also put lidocaine cream on my face when it’s hyper Sensitive. Mind was done from drama to my lower nerve from dental procedure. It stops you in your tracks! i’m disabled , but find a way to manage my life. God is my guidance and family love and support keeps me grounded, but if you have TN I or TN2 it’s a life changing event. This painful facial condition affects so many! Keep moving forward, pray and move your feet and you too will find the right doctors for pain relief . i was in remission for 5 years and it came back. there are days like you that are so hard, but keep searching for pain relief! never give up and know you have love and support on this page. praying fir you