Trigeminal Neuralgia

Caring for someone with MS
1

Hi

This is my first time posting here, looking for any advice and/or support. My husband has MS and we have dealt with the various things it has thrown at us over the years, we adapt, it becomes the new normal and we continue. This new symptom of Trigeminal Neuralgia is awful and we are not sure how to cope at the moment. The Tegretol he has been prescribed does help the pain but it makes all his other symptoms so much worse that he can barely move from his wheelchair. Pre-Tegretol he could move around the home on crutches. We are only 10 days in, he is on the minimal dose and I am feeling lost in how to help him. I also feel lost in where to turn from a medical perspective, we got the prescription from our GP, his neurologist is 1.5 hours away and he speaks with him every 6 months.

Anything thoughts, advice or similar experiences would be very much appreciated.

2

Hi, I was prescribed Gabapentin for trigeminal neuralgia, which I find does the trick, I’ve not had the pain since I started on it 16 months ago. I feel for your husband as the pain is horrendous. I have RRMS. I found the Gabapentin also helped a lot with the sore heads I was getting. Guess I’ve been lucky that I’ve not had any side effects from it. Good luck to you both.

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3

Hi

i tried everything Carbamazepine Oxy carbamazepine morphine patches then went on Lamotrigine and it was a miracle. No side effects whereas the others made me so weak I couldn’t do anything. It was also fast.

hope that helps.

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Thank you so much for the response, he has now moved to Gabapentin and he is building up slowly and so far no side effects but he is still on a very low dose so the pain is still there. Fingers crossed it does start working but your post gave me hope which is what I was looking for. I know I am not experiencing the pain but I feel like I am!!

5

Thank you so much for the response, he is trying Gabapentin currently but good to know there are other options if that does not work. It has been a rough few weeks and as everyone with MS knows we know how to deal with a lot of rubbish that gets thrown our way!!