Double Whammy, trigeminal neuralgia and rrms

Hi all, I'm new to this site, but not new to both these "friends". I was diagnosed with ms 15 years ago and trigeminal neuralgia 11 years ago. I just experienced the worst flair up of trigeminal neuralgia ever in August and September and ended up on short term disability. I ended up in the ER on a boatload of pain drugs that didn't work. I had to go way up on oxtellar and lamictal which made my brain so fuzzy. I know it will come back and I'm terrified of the pain, and what it means for my job and life. Does anyone have any experience with this?

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13 Replies

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  • Hi littleshelley, it's a very very painful thing to have. Trigeminal neuralgia that is. I had it for 3 years, mine was being caused by a trapped nerve in my neck, and once they had took the disc out, and freed off the nerve, it took about a year for it to settle down after the op. I had teeth re filled and I had acupuncture, before they realised what was causing it. Hope you find what's causing yours. Mine responded best to heat, and it was the only temporary relief I could get.

  • I have both, I take Lyrica. For the most part it keeps the TN down. But sometimes I have to take extra. I am on copaxone. It is new not sure if it helps or not.

  • I have both TN and MS. The TN preceded my diagnosis MS by 15 yrs. very high doses Tegretol helps. As time went on my TN flares became longer durations, more intense, and less responsive to medication. It also put me in hospital once. Was down to 78 lbs. in June I decided to have Gamma knife surgery. It seemed to have helped. Let me know if u want more info on this.

  • U to huh, but of bad;eck mate. I think I am a couple years more experienced than u but what can u say. I highly recommend Cyberknife surgery, really sounds worse than it is No side effects no pain nixing, look it up online, I know its online I only know here in Phoenix AZ not sure wart else. Now drugs, oxo ( crap) Gabapentin, Aotiom levetetiracetan Steroids (infused and tablets) Cannabis (Heavt CBD low THC) and a bunch others I forget, All I can say is welcome to the PAIN, but the surgeryDOES work, any questions ask away

  • I also have MS and TN for the last two years. This pask week has been very miserable. MS causes back spasm, waitng to take trial for spinal cord stimular for the spasms. Had needle ablation one month ago for the TN. It has helped some but still must use soft foods and there is considerable pain

  • Yes, I deal with it. Have been on disability for a long time. Tegretol has helped me somewhat. I take it at night.

  • I've read that attacks get more frequent and intense the older you get. Have you experienced that? And are you on a drug all the time or just during an attack?

  • It is worse at the moment. I am on meds all the time. My dr said there was an operation if meds stopped helping.

  • I have had TN for 4 years and MS for 14 years. I have been on Oxtellar, starting at 150 mg and was slowly raised to 2400 mg within that 4 years. I have tried all the other medicines with the Oxtellar and nothing could stop the pain from recurring. I had the Gamma Knife procedure done in April and had the worse pain in my life in August that sent me to the ER twice. I finally went to a TN specialist and had the Microvascular Decompression procedure done in September. What a MIRACLE! Not only did they cauterize a blood vessel that was touching my nerve, they actually found an artery that was touching the nerve that didn't show up on the MRI. After having shocks for so long, I'm scared to say I'm cured by hey... I have not had a shock since!

  • Thank you so much for responding. Where do you live and where was the specialist? How did you find a TNT specialist?

  • I live in SC and the specialist is in Charleston. My mother-in-law looked up TN specialists on line and found one in California. She called and asked for specialists on the East coast and they gave her a list of a few.

  • Was it through facial pain association? Thanks for answering all of my questions. I've had the MRI looking for a trigeminal loop, and they didn't see one. But I was still referred to a neurosurgeon. I just want to make sure he is a tn specialist too

  • Yes. I had all the symptoms without having an MRI for the diagnosis. I was just taking all the medicine I could take and the pain still wouldn't go away. Then after 4 years I had an MRI for the gamma knife. I chose the gamma knife first so they could just radiate the nerve. But when that didn't work I wanted the surgery. The specialist saw the vein on my nerve. Idk if the other neurosurgeon saw it or not but he did give me the option of the surgery too. I just didn't want "brain surgery" if I didn't have to have it. Well after everything I went through and the results from the surgery, I wish I had chosen the surgery. first! Feel free to ask me as many questions as you need to.