MS Society UK | Forum

Trigeminal Neuralgia (TN) and MS

Is anyone out there suffering TN from demyelination of the Trigeminal nerve?
I’m just approaching my third yearend mostly have it under control with mind-numbing drugs - mostly carbamazepine. Non-MS TN sufferers have a bad time but for us, there is a difference.
Has anyone had attacks following COVID vaccinations? I’ve had new attacks six weeks after jab #2 and the booster. I don’t want to be unvaccinated, but this is too much of a coincidence. The vac was Pfizer.

Anyway, it’d be great to be in touch with MS/TN sufferers to share the pain and the treatments!

Hi Jon1, TN is just the worst pain imaginable and the only painkiller that’s eases it for me is Tegretol, recent bout took 1400mg a day to make life worth living. I have had all 3 Pfizer shots but I had TN before and after shots so I am not blaming the injection, it’s MS that gets the blame. The pain for me is right side of face, can’t eat, sleep, smile, brush hair or clean teeth without screaming. I hope you find some relief, it is very debilitating.

Hi Nice to know I’m not alone I’m suffering with this at the moment and have been prescribed gabapentin initially had carbamazepine but affected my sodium levels I find it a nightmare worst pain ever like the other person said mind numbing drugs or excruciating pain I haven’t been able to get my neurologist to give me an MRI said the symptoms are enough however I’m pushing for an MRI I haven’t had the vaccine as was too scared to have anything that might make this pain worse than it is already So sorry you’re suffering Jane

Thank you for the replies! It’s kinda comforting to hear from fellow sufferers. I had loads of MRIs for my initial MS diagnosis but my neurologist tells me there is no point in another for TN. We know exactly what it is and that MS is the cause.
I called the TNA helpline yesterday and had a good chat with someone who actually gets it! I’ve had two bouts of counselling before which were of questionable help but Jackie at the TNA was great.
How are you getting on with gabapentin? Does it work stopping attacks? I live in a state of terror and I’m afraid of switching! I’m on 1500mg at the moment but was ok on 1400mg for a few months before the booster. Before the jabs I was on 300mg plus 10mg Baclofen.
Good luck and keep in touch.

I take 400mg of gabapentin for my TN and thankfully, it has kept it at bay - it’s the worse pain ever and I felt I could rip my jaw out and my teeth - seems to work well for me…

Hi, I had x1 oxford, 2 pfizer jabs & had no probs. I’ve had a-typical tn for over 10yrs, can’t lie on it, cold weather agony etc, I take a combination of drugs 450mg pregabalin, 70mg Amitriptyline, 150mg Lamotrigine, Migraleve. Learnt to sleep sloping on back. I find tn is worse than ms. When it’s really bad I rub small amount of Capsaicin cream in (its on prescription & is made from chilli peppers) it does give pain until body gets used to it in but nowhere near as bad as tn, I find it confuses the pain signals but do wear a plastic glove when applying! It does wash off. I hope some of this helps with this horrible pain.

I have both: RR MS for 30 years and TN for the past 10. Have had 3 Covid vaccinations, 2 Astra Zeneca and a Pfizer booster. None have exacerbated any of my symptoms for either condition. Coincidences are extremely common, unfortunately but any correlation doesn’t mean causation. I take slow Release Carbamazepine as the normal one is ghastly to use; sickness and all day exhaustion. Good luck with it all though - TN is vile!