Hi, I’m Grace. My TN appeared a few years ago, and I was told by my neurologist that it was due to my MS (diagnosed in 1997). The TN has worsened over the years. I’ve had two radiofrequency procedures and a needle rhizotomy. Nothing lasts for longer than about 6 months. I’m currently taking Lyrica, Gabapentin, Cymbalta, and Trilyptal, just for the TN pain, and I’m still experiencing it. Is there anyone out there who has TN as a result of MS?
I also have MS (diagnosed in 1975) and bilateral TN (first symptoms 1996).I take oxcarbazepine 150mg 4x daily.and lamotrigine 25mg 2x daily for the TN. My MS affects my walking and any higher dose of oxcarbazpine makes walking impossible. The lamotrigine is a recent addition. I have had the gamma knife procedure on left side with no change and the radiofrequency rhizotomy (left side almost 2yrs right side almost 1yr). I have had recurrences of the TN on both sides but no where near the pain levels I had before those procedures.
Tom T.
Have you heard of the use of misoprostol for TN in MS patients? there was a small study that showed a very significant reduction in pain severity:
This was also mentioned on the fpa website:
Nobody in the forum seems to be talking about this but the results in the paper are very consequential for TN patients with MS. I tried it but the stomach pain it was giving me was worse than TN. You may have a different response.
If you like to see the full paper please PM me.
H
Hi, Tom,
I was diagnosed with MS in 1997 and used Copaxone for years; I was
practically symptom free and assumed I’d always be so lucky. Well, about
four years ago, I started experiencing TN pain on my right side, little
tingles at first. I knew something was up and after researching, I was
convinced I had TN, and I was right. Since then, the pain has grown, of
course. I’m currently on Gilenya for the MS and Lyrica (600mg daily),
gabapentin (900-1200 mg daily), Cymbalta (don’t know the dosage off the top
of my head), and oxcarabamazapine twice daily (doctor just doubled my
dosage last week, so I’m not even sure how much I take). Additionally, I
take 225 mg of Effexor daily. At certain times of the day, I’m so doped up,
I can hardly walk. I had gamma knife surgery early last year (didn’t work),
then needle rhizotomy (worked for about 6 months), then gamma knife again
(worked for about 6 months). Luckily, I officially retired from classroom
teaching last year and now teach online from home. I can’t even imagine
having bilateral TN, but it’s a huge fear for me. Does it ever occur
simultaneously?
bilateral TN seems to come often with MS . ( I also have MS ) . But as far as I understand it doesn’t come at the same time at two sides .
That is also for me a huge fear .
I recently had my second episode of TN , after 2 years . It is now O K .
I’ m taking 500 mg of tegetrol/day .
It makes me very nervous to think this awful TN is progressive . I keep thinking : can this really get worse than this was ??? I couldn’t eat, swallow, talk , sleep …
The pain-free periods seem to get shorter and the pain heavier ???
How is that with TN and MS ? Can we really do without medication for a certain period or will this medication be for the rest of our days ???
Hi Grace,
I was on Betaseron when it first came out. I stopped after about 10 years. My MS went from RR to SP. Never had that knock you off your feet shock like TN on both sides at the same time. That to is something I dread. I have never been a worry-wart but the anticipation of that 10+ pain is always there. That fear is something I find hard to shake. Good luck with your battle.
Tom T.
Thanks for the info on Misoprostol. First I heard of it. Not sure how to PM you for full paper. Something I’ll be taking up with new neurologist.
Tom T
I had the misfortune of having two nasal endoscopic surgeries for what I was told was chronic sinusitis, before finally discovering I had Trigeminal Neuralgia in 2004, three years after I was diagnosed with Multiple Sclerosis (2001). These studies may or may not apply to my condition, but thank god someone somewhere is finally paying attention to us!