Gransnet forums

Health

Trigeminal neuralgia and medication

(8 Posts)
keepingquiet Fri 03-May-24 12:25:01

I only had this once, and whist I was driving. How I managed to get home I don't know, one of the worse pains ever and when I looked it up I was terrified so every sympathy coming your way.

Luckily, I haven't had it again but I did need a lot of dental work shortly afterwards so don't know if the two things were related at all, although the painwas much worse that the worst toothache I've ever had.

I hope you get the relief you need soon.

glammagran Fri 03-May-24 12:17:20

I have had 2 attacks in my life. The last was in February 2020 which was excruciating - I was crying with the pain. I filled a sock up with rice and tied a knot in it and heated it up in the microwave which provided a little relief. I was prescribed Carbamazapine but luckily for me I only needed it for about a fortnight and then the attack abated.

nightowl Sun 28-Apr-24 18:03:34

My son has this, and was on amitriptyline for a while. However, he found it knocked him out so weaned himself off (without discussing with his GP - definitely the wrong thing to do). He still uses it as necessary for the occasional flare up but the intensity of the condition has thankfully waned over the years. He is also aware of his triggers and early warning signs.

Good luck LinAnn, it’s a horrible condition. I will never forget my son’s first episode, I have never seen anyone in such pain or felt so helpless.

LinAnn52 Sun 28-Apr-24 17:04:36

Thank you for your responses. The previous times I’ve had it, it hasn’t gone on for so long. I’m beginning to think I just need to get on with life, eating a bit more and bearing the pain as I have been losing weight. I’ll see what the doctor says this week. I don’t think I would go down the surgery route, as I have read that it doesn’t come without serious risks.

Georgesgran Sat 27-Apr-24 18:21:36

Sorry, should’ve added he’s on the maximum dose of Pregabalin.

Georgesgran Sat 27-Apr-24 18:20:46

My friend’s DH has this. It’s been so extreme, he’s had several surgeries in Sheffield, although he lives in Durham.
3/5 of the ops have been successful, but over time, the nerves have sought out each other and ‘re-joined’ taking him back to square one. He says the ops have given him considerable relief and he’ll have more if deemed appropriate.

NanKate Sat 27-Apr-24 17:35:24

Poor you Lin. I’ve had this and it is excruciating. I have found happily that it doesn’t last forever. I have never been on prescribed tablets.

Only advice I can give is try not to chew, have liquid drinks/food for a day or two. Just rest your jaw.

I took ibuprofen and codeine, however codeine mustn’t be used too much as you can get hooked. Sorry can’t remember the proper medical expression.

The moment I get a twinge in my jaw I stop all movement of my jaw.

I’ve used acupuncture successfully for a number of illnesses, you might like to investigate this.

Good luck.

LinAnn52 Sat 27-Apr-24 12:14:52

Does anyone here suffer from this horrendous condition? I would be interested to know what medication works for you. I have tried Carbamazapine but had to stop as it was affecting my kidneys. I’m now on Pregabalin, 600mg a day, which is the maximum the GP recommends for me. Still no relief. I’ll be back at the doctor next week, but what else will he try??