For allmost 2.5 years Carbamazepine(Tegretol) was helpfull to me. Kept me in remission most of the time (overtime increased the dosage). Then, a few months ago, I had terrible breakthrough pain which couldn't be fixed by Carbamazepine. Remission was seriously over and it still is...
The neurologist had put me on Gabapentine (Neurontin), slowly worked up to 2700mg daily, and I'm still in pain. It doesn't work as well as the Carmazepine did.
MRI showed no anomalities.
Does anyone have any suggestions on other meds for me?
I know there is a list to find here, but this list is for TN1 and TN2 at the same time.
My MRI was 'negative' too - until it was re-read by the surgeon. There is a definite vessel constricting the nerve. I agree the breakthrough pain is unbearable. More than that some days, is the total lack of short term memory and word recall - it has a negative effect on every aspect of my life.
I was on the same medicine and similar dosage. I’ve had
tn2&3 for 10 years. This past month I had MVD surgery because the Meds weren’t working…even in combination (Lamital & Neurotin). Post surgery still having some Tn pain so doc put me on Lyrica. It’s been 3 weeks and I’m pain free. But be patient - Lyrica takes about 7-10 days to help. Or at least for me.
What is your recovery from MVD like? Tentatively scheduled for March - scared to death. How long was hospital stay? Return to normal activity? Hair regrowth on scar? Thanks
Hi, I can only say that I am on analgesics plus amitriptyline. These mostly keep the pain level tolerable. The amitriptyline apparently reduces the brains response to pain, so, if it helps, I would imagine that it should help for TN1 and 2. I'm sure you'll get many more answers but never be quiet about pestering your doctor. If you're quiet, they naturally assume your pain is. Very best wishes, Dove
I had the cyberknife surgery and have been pretty much pain free for 2 years. but i now have to live with the side effect a year later of the surgery which is numbness on the tn side. neurologist says it may go away, it may not. no tastebuds on the tongue on the tn side and numbness from the bottom lip up to the cheek area and the outside of the eye on that side. it is a daily battle, but still nothing like the pain.
It's different with everyone. I laid around for 3 weeks. Was at work after 3 weeks but was on light duty. Didn't feel 100% for 6 months. The one thing I can't stress enough is do nothing for a few weeks after surgery. I have seen too many problems with especially women who when they get home, start cleaning, taking care of children, or just decide they have to get out and shop and end up back in the hospital with their wound leaking or worse. I was only in the hospital over night. I have little hair and the scar is barely visible.
I'm so sorry you're having these issues. I can't believe how many of us are out there with TN.
I've had TN for about 2.5 years as well and tried the Carbamazepine as well but it made me lose my short term memory and started affecting my long term memory as well. My neurologist took me off of it and put me on Gabapebtine since I had taken it in the past for something else with no side effects. Sadly for me neither of these drugs help with the pain. I'm on about 1200mg of Gabapentine right now so maybe I should try more. I should add that I have CFS/EB as well and they both make you lose your short term memory as well.
My MRI found that there is an abnormal blood vessel that is the culprit for this. I'm scared to just have the Gamma Knife Radiology as anyone of us would be.
I wish I had more suggestions for you but I wanted to let you know that you're not alone. Please post if you find something that works as I would love to try it as well!
I have the same issue with the blood vessel contacting the nerve. You comments on losing your short term memory & word recall hit home, my short term memory is gone thanks to the TN and also because I have Chronic Fatigue Syndrome and Epstein Barr - all three of these things are killing me. It's so hard to work, I was actually out of work for 3 1/2 months but had to come back since I was losing so much money. Sigh....It's so tough some days to stay positive but that's all I know how to do at this point. All the best and please let me know if you find anything that works as I would love to find a solution!
Best
Brandi
Baba said:
My MRI was 'negative' too - until it was re-read by the surgeon. There is a definite vessel constricting the nerve. I agree the breakthrough pain is unbearable. More than that some days, is the total lack of short term memory and word recall - it has a negative effect on every aspect of my life.
micro vascular decompression. http://en.wikipedia.org/wiki/Microvascular_decompression There are plenty of testimonials and videos of the surgery on you tube. If you go through with it find the surgeon with the best record for this surgery that you can find. I believe that most of the time it's not successful is due to surgeon error.
I had MVD surgery 09/17/13, Had TN for 2 years and debated on which procedure to do, Gamma or MVD, I found that the MVD surgery was easier than I thought. I did have a chemical reaction to the pads they put in which caused fevers for me for 8 weeks. I have significant improvement in pain levels, but not pain free. Everyone is different and I guess the success of the surgery depends on how much damage has been done to the nerve by the compression. Research the options and fine a surgery with experience and you are comfortable with. Good Luck.
Thanks for this Larry, I really appreciate it!!! I'm going to look into it and see where my neurologist ranks. All the best - Brandi
Larry said:
micro vascular decompression. http://en.wikipedia.org/wiki/Microvascular_decompression There are plenty of testimonials and videos of the surgery on you tube. If you go through with it find the surgeon with the best record for this surgery that you can find. I believe that most of the time it's not successful is due to surgeon error.
I am on Gabapentine since October taking 300mg every 6 hours during the day and 600mg at night I was still in pain for the first month and my Doctor added Amitriptiline and was very helpful . It is working for me
I have been on remission for almost two months now .
I had relief from Tegretol for 3 years; then after I moved from Oregon to South Carolina, Tegretol stated to fail me at a rapid rate. I ended up in bed for 18 months curled up in a ball in pain, while trying every known medication, some helped, but side-effects were too severe others did nothing. I tried 14 different medications or combinations there of until we hit the magic combination along with botox injection (7 weeks ago). My best guess reason for the change in pain was moving into a different climate the extreme daily fluctuations in barometric pressure knocked me to my knees! I've had neurostimulator (failed); steroid injections (failed). Here's hoping my magic combination continues to work, botox lasts forever (not likely) and To you finding your "Magic Combination"!
I am on Oxtellar ER (Tegretol ER) 900 mgs at bedtime and Gabapentin 600 mgs three times a day. On October 18th 2013, when blood levels were therapeutic, I became pain free. The two meds work well when given together.
I was on tegretol for 4 years… It worked AMAZINGLY… then I moved to Cape Cod from Alabama and it stopped working. I was on bed rest for 15 months. We tried EVERYTHING else that we could possible do and nothing worked. Now 20 months later they started me on tegretol again and it’s working ok! My body got use to it and we had to give it some time (20 months of me wishing I was dead). I am now scheduled for my MVD in 12 days (in a panic state now)! My neurologist (actually two of them) didn’t see a compression either! Then I went to see a neurosurgeon and he did immediately! Good luck with everything !
That's horrible, I feel so bad for you. I think tegretol works the best for what you have. Next best thing is trileptal. Next after that is Topamax. But really, if even tegretol isn't working anylonger, your very best bet is find the best surgeon and get the surgery. My heart goes out to you. Best of wishes...