Forum

Trigeminal Neuralgia

Can anyone that suffers with this offer me any advice.

What drugs have you found to be the best, the ones that enable you to cope with the pain but yet don’t zombify you to the point that you can’t live a normal life.

Has anybody had surgery to relieve their pain. Did it work, was it painful.

I am suffering with it myself at the moment and all the different pain killers i am taking are not touching the sides of the pain.

Thanks to anyone that helps

I’ve been fortunate enough for it to be controlled with low doses of amitryptilline, only occasionally breaks through to excruciating level but only for a few minutes. Have no idea what triggers mine or whether any other meds would work for me. Sorry can’t be more helpful, hope it subsides for you soon x

Hi, I had TN last year. Eurgh! Can see why they call it the suicide condition. Felt like someone was twisting my teeth in the gum! I initially got prescribed carbamazepine, allergic reaction. Then Gabapentin, made me want to top myself. Then pregablin, well, that made me eat every thing in site! Now I don’t take anything. It’s difficult, because you’re torn between the decision to be in pain or feel, as you say, like a zombie. I chose to be in pain. It settles after a while. Suz xx

Like wanda I’m on low dose amityptiline, recently I was put on pregablin for another nerve thing going on in my leg, my gp advised me to start weaning of amitryptiline as the pregablin will sort both. However as I weaned myself of I am finding I am back to excrutitating ear pain teeth pain jaw pain yep it hurts so have to start amitryptiline again, as suggested by gp if pain returned, I also found my leg nerve thing has started again. I’m guessing the combination of the two was working for both so when I see my gp next week she might suggest a higher dose of pregablin so I can come of the other, hate the pregablin though as whilst I get used to it, it makes me feel so sick.

I have already been on pregablin for 7 years for nerve pain in my leg, I tolerate it very well and it works for my leg pain, although i do have to periodically up the dose.

I find the pregabilin doesn’t work at all for the TN though, and even adding Tegretol to it is having little effect, apart from getting a slightly better nights sleep.

Its the worst pain I have ever known, ears,gums, teeth, head, jaw, its bothering them all. Anyway I am going back to the docs today, going to ask to be sent to the pain clinic, but it all takes time doesn’t it.

Hi,

I am in a relpase at the moment and the trigeminal neuralgia is doing my head in (literally and metaphorically)

I am on carbamazepine 300mg in the morning and 300 at night. It made me fairly groggy the first week but now I am tolerating it OK. It hasn’t got rid of the pain but has brought it down to a slightly more manageable level. My MS nurse said that if I can’t stand it I should have IV steroids to see if that will settle it.

It is a horrible symptom and the pain is like nothing else I have ever felt. You have my full sympathy

Cheers,

Belinda

I asked about steroids and my MS nurse said that they don’t give them for TN, very odd.

It hasn’t been quite as bad this morning, its still there but not quite throbbing and stabbing as badly, I am just sat here waiting for it.

.I don’t like the way carbamazepineI makes me feel though, very unlike myself, spaced out really and I have a head ache.

Will have soup again for dinner as chewing anything seems to bring it on. Skips crisps are good as well as they just melt in your mouth with no need for chewing.

Hi,

I have suffered with TN for many years.

It was almost completely controlled by drugs (a combination of amytripteline, tegretol and gabapentin) but I was very sleepy all the time and my brain was numb. About 18 months ago I had surgery. The one where they put a needle in your cheek and burn the nerve.

It wasn’t painful but the side effects are unpredictable, permanent numbness. Apparently I have the worst case scenario with numb lips and mouth, just like being at the dentist but the pain has gone from excruciating to annoying so I’m happy with the trade off.

I think it depends where you are geographically which surgical solution you are offered. I’m in Leeds where they do thermocoagulation but other areas do different things like gamma knife.

I still take tegretol but after years of use I don’t really feel the side effects.

You really have my sympathy as this is a miserable condition. You need to make your GP your ally in finding the right dosage and drug combination. I used to keep a detailed pain diary so that at each visit I had quantifiable results to the drugs.

I wouldn’t worry too much about Steroids. I think that is a bit of a red herring. I never heard of anyone being prescribed steroids for TN. I used to spend a lot of time on the forums at the TN association – they were very helpful. http://www.tna.org.uk/

Jane

l suffered with TN for years. Nothing seemed to relieve it - had lots of tests done to see why l had it - but it was put down to ms. l know a osteopath whose treatment relieved the pain for a while. lt got so bad sometimes l felt l could shoot myself - the excrutiating pain in the ear/jaw. Reading the answers to your post made me realise that l have not - touch wood-suffered with it for quite a while - and that is since taking amitriptyline -which must be the answer. l take between 25 - 50mg at night - it was for painful restless legs.

F.