Trigeminal Neuralgia

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Just been diagnosed with TN.

Feeling lucky as it’s my second attack and I’ve been diagnosed quickly and put on carbamazepine without any dentists wanting to drill my face!

Any tips for relief? Comfort? Anything really to make this easier.

I immediately feel better for knowing it’s not my teeth and I’m working to find my triggers. I hear something warm on the area can be helpful so I’ll try that.

Thank you in advance 😊

Hi. Long time TN sufferer here.

Have they given you titration advice for raising the carbamazepine dose?

Identifying your triggers is a good idea, but ideally you'll get to a point where the meds give you ennough pain relief to not have to worry about them any more.

Briefly, yes. He’s said one morning and one evening until Wednesday and then 2 in the evening from then. He’s calling me back on Thursday to discuss further.

How long before they start to work in your experience? Do they keep you comfortable? Last night and today were not to bad but it’s awful this evening 😖

I started to get a little relief at that sort of dose, but when I had to raise it again as it wasn't helping, I unfortunately couldn't tolerate the carbamazapine. I had a host of side effects which meant the gp took me straight off it and swapped me to gabapentin instead. Then I spent several weeks raising that dose up to the dose that works for me. Hopefully you'll get on well with it and get good advice re a working dose for you.

The pattern I noticed as my dose raised was that first I stopped getting constant attacks, then stopped having the completely random attacks, then I stopped getting triggered ones.

Thank you so much. They have definitely eased in frequency already which is a massive relief!

NHS NICE advice is that
Initially 100 mg 1–2 times a day, some patients may require higher initial dose, increase gradually according to response; usual dose 200 mg 3–4 times a day, increased if necessary up to 1.6 g daily.

A lot of gps don't know much about TN so it's good that yours recognised it.

Sadly, I took myself to the gp AFTER having a tooth needlessly removed, and told them myself what it is I thought I had and they agreed.

One gp confidently told me that I wouldn't have it for long. It can relapse and remit and go into long periods of remission. I unfortunately have had it for ten years now and am lucky that (until just recently) I've had good pain relief on the gabapentin with few side effects.

Feel free to PM me if you want.

Thank you. I think it was a comment from you actually on another post that made me Google and speak to the GP, so thank you for that 😊

2 dentists couldn’t find a problem and thankfully neither were willing to touch my teeth with no evidence of issues.

I guess it’s just a waiting game to see if the medication works 🤞🏻