I actually take trileptal, which is just a reformulation of tegretol, along with gabapentin and zanaflex to help relax the muscles. I have had major relief from this combination. If I have minor breakthrough pain, I take an extra gabapentin as narcotics do not help me at all.
TN is such a beast! I am also TN 1 with a “clear” MRI. I highly recommend getting the book- “Striking Back, the TN handbook”. It was written by a couple of Doctors who are dedicated to facial nerve pain and spasms. It put a lot of things into perspective for me. As my local Neuro told me at the beginning, 4 years ago, you can take pills, and adjust the dosage and complimentary meds, (Baclofen helped as a complimentary med.) but when you can’t take it anymore, your best option is surgery. It took me 3 years to come to that point. I have insurance, and sought out the most experienced Surgeon that I could find. I flew to Dr Ken Casey in Trenton, MI (happens to be the book author) looking at the same MRI, he quickly identified the offending blood vessels that were impacting my nerve. (Since Radiologists are looking for tumors or things that don’t belong, that happens a lot. ) I woke up from my MVD with no pain. Each day is a gift, if this lasts years or months, I would do it again. So far, am 7 months pain and pill free. Each of us is a unique case, and outcomes vary, we need to speak up for a better quality of life, and find the best knowledgeable Doctors.
I wish you the best, feel free to ask me any questions, I still follow this forum because it changed my life, and we are all here to help each other.
Ben I have had TNG for nearly 10 years, I have periods of remission, but have been very bad the last 6 months. I was taking Carbamazepine and was feeling that I could take less and went right down to 1 tablet, however then I went into a spin of the most awful pain. I went to a consultant and he said that Car… was a bit out dated and prescribed Neurontin, and i had the worst reaction I ever experienced.
so back on Car… but get lightning strikes of horrendous pain, I also got an injection so I am not too bad, but don’t have the money for the big MVD op everyone is talking about.
as with everything I know stress doesn’t help (catch 22, as when the pain hits guess stress levels off the wall)
all this not much help to u, but I have learnt that changing ur dose by one tab completely upsets ur pattern of controlling the pain.
Kindest regards
Try more Neurontin...I take 800 mgs 4 times a day plus the Tegretol or amitriptyline plus Oxycontin plus Norco and Cymbalta. If I keep on a strict time schedule I have little or no breakthrough. If I goof up It takes a really long time to get back on track. I also use Cannabis and Medibles that work wonders on body pain and the Cannabis takes my mind off things and calms me when I have more pain than my mind can handle.
I hope you find something that works for you. Oh, I also use Soma 350mgs when I get to the zombie point. It lets me sleep but always gives me a migraine upon waking in the morning. I use Imitrex injections for my migraines but don't like to...it's a doozy of a shot!
PeacenLove! Always~Laurel aka Shinglesdidit
try both I've been taking 100 mg of the chewable carbamazepine and 300mg od gaba it's been great for 2 1/2 years
Lamitcal gave me relief for 3 yrs. Unfortunately the Lamitcal no longer helos. 4 days ago my Pain Mngmnt Dr added Baclofen. I am not seeing much relief. I wish you well.
I too have a negative mri with left sided pain. I started off on neurontin, then trileptil, then lyrica. Finally as a (nearly) last resort my neurologist tried keppra. I have been on the same dose for about a year and a half (500 mg twice daily) and have remained pain free. I know its working because if I'm late on a dose I can feel twinges of pain that remind me to take my med. Everyone is different, but for me this med has been a godsend! Good luck, and may you have pain free days ahead!
Hi Ellis, I had bad breakthrough pain last summer. I was on Tegretol ER and increased dose to 600mg twice daily, added 900 mg Gabapentin,300mg three times daily and finally two 25mg Amitriptyline at bedtime. This worked for me. I cut back in reverse order when I was pain free. Now I take 1000mg Tegretol, and 600mg Gabapentin and this works for now. I read about finding the right "cocktail" and this was mine. I thank my neuro for this as he prescribed it. Good luck to you
Chuck W
I was on Carbamazepine and continually had to up my dose due to breakthrough pain. After almost 2 years, I decided to have MVD surgery - Dr. Michael Lim at Johns Hopkins. The radiologist did not see anything in my MRI, and it was tough for my surgeon to see anything either. He trusted his instincts and my symptoms and I trusted him. There was a "very large" blood vessel hitting my nerve that could not be seen on the MRIs. It's been 10 1/2 months since my surgery and i am pain free and totally off medication. It has given me my life back. I wish you the best of luck and I highly recommend my surgeon no matter where you live. People come from all over the country to see him.
I have been on and off tegretol and gabapentin for the past 3 years. I’ve been in remission for about a year now because my gp prescribed cymbalta. Now I take 60mg of cymbalta and 900mg of gabapentin. I live in Baltimore and have considered going to the TN clinic at Johns Hopkins but I really want surgery to be a last resort.
I have been on Carbamazepine and it eventually stopped working and I had horrible attacks that went on for months.
My dr. kept upping the dose but he added on topamax and baclofen and then it finally calmed down. Eventually, that medicine will stop working and then the drs. will have to do the same thing. It's a never endind battle. I also take clonazepam that helps with anxiety but it also has some component that works for TN.
To all of you who've responded I want to say I'm very thankful!
If it wasn't for you all I would feel very alone with my TN1-demon and my questions.
This week I have an appointment with my neurologist and I'll bring a list with all your proposed meds with me.
Thanks again for sharing your med-(hi)stories with me,
Ellis.
Thank you Larry - sorry i thought this posted last week. Really appreciate the info, I"m looking into it now.
Behudson said:
Can I aak what MVD stands for? I'm curious since procedures are probably the next step for me.
Larry said:When the meds quit working and I was in pain 24X7, I had an MVD. Been pain free for 5 1/2 years.
Why don't you try trileptal (oxcarbazepine)? I switched from neurotin & then lyrica. The side effects are less and it has worked for about 2 yrs. I hope this helps.Jim
I been using tripletail 300 mg in beginning than 1800mg a day it works but not without side effects. Like zombieness for me and hard to focus but the pain went away. My sodium dropped really low so make sure you get regular blood check ups. Trying Keppra now but not working.
Behudson said:
Hi Baba,
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.
Hope all works out for you ---get another opion
Can I ask, is the loss of short-term memory typically from the TN or the Carbamezapine? I too have serious loss of short-term memory and word recall and I also have TN on the right side which I am taking Carbamezapine for. I also have MS. Does the Carb. lose efficiency after awhile? I am having breakthrough pain and am going to talk to my neurologist about increasing my dosage. Can I expect this to keep happening?
That's a good question. For me I also have Chronic Fatigue Syndrome, Epstein Barr and a few other viruses. The word recall, brain fog and loss of memory are also signs of the CFS/EB as well as the TN so my doctors are having a hard time pinpointing which is the culprit. I think the Carbamazipine made my memory loss worse. I really do. It was bad. My TN was diagnosed first and the memory loss happened before I was diagnosed with the CFS/EB but it was obviously worse once I started taking the Carb. I found this for you on the John Hopkins site. You may want to talk to your neurologist ASAP. I highlighted certain areas for you. Good luck and try to keep me posted. Losing your memory is the worst.
See the link and I copy pasted for you:
The usual form of medicine is the same as used for seizures. Think of trigeminal neuralgia as an electrical current through your face, just like seizures are electrical currents through the brain. The same kind of medicine works for both. There are several medications which are known to work well:
- Carbemazepine is the gold standard. It treats the condition very well, but can have undesirable side-effects such as drowsiness, unsteadiness, difficulty with coordination and memory, slurred speech, and some difficulty with cognitive functioning. You will also need to get regular blood tests because your white blood cell count, platelets and liver functions must be checked. However, it works better on the pain than most other drugs and is used safely by millions of people for seizures. Most patients start out on low doses, gradually increasing the dose under clinical supervision until they achieve the best pain relief with the least number of side-effects.
- Gabapentin is also used. It does not require regular blood work.
- A carbemazepine type drug that is a newer addition to the list of options and may have fewer side-effects, but can affect your blood sodium and must be monitored.
Thanks again for your replys everyone!
I have seen my neurologist last week and I thought to let you know how it went:
Gabapentine will be raised slowly to it's maximum level. So if that doesn't work either we've shurely tried it.
Next apointment over 6 weeks.
I am very gratefull for your help, have a painless day,
Ellis.
Hi Ellis
I saw Dr. Casey recently, he is a co author of the book, Striking Back, and is in Trenton, Michigan. He basically told me for type 1 TN, these are the 3 main drugs that work the best in order: 1) Tegretol, works the best for this 2)Trileptal, works 2nd best and 3)Topamine and then he joked and stated, that people on it however called it dopamine because it makes you feel like a dope, but then again, I think all of them do.... I could be wrong, but I think the Gapapentin is more for type 2 symptoms, the continuous, boring, buring pain... I have also read on here that folks with type 1 that were in a similar boat than you, as far as using tegretol, it worked wonders than it stopped, found that just stopping tegretol for a couple months and then restarting it again worked for them....its like the body just needs a break and then other jumper start or something. Best of wishes..