Trigeminal Nuralgia

[Victoria70222]

I have just been diagnosed with this, have never heard of it. Any helpfull advice would be much appreciated. Thank you

[Singinglouder]

Hi Victoria. Very few of us have heard of TN before diagnosis - welcome to a select group no one wants to be in!

For information, it’s worth looking at tna.org.uk - that’s a support group. You can use the website and helpline without joining. It’s also worth checking out the NICE guidelines on trigeminal neuralgia - for some reason the link won’t paste, but it shows up straight away on google.

Don’t want to overload you with information, but a few things to start with:

1 Don’t know if you’ve been given medication yet. The first one is usually carbamazepine. It’s important to start slowly - 100-200mg a day, increasing after a few days or a week - to minimise side effects. It might take a week or two to kick in, but it does mostly work and the side effects improve.

2 Try to work out your triggers. I’m set off by cold, breezes/air conditioning, my old glasses which touched my cheek etc. If your pain has started in your jaw, it might be eating or brushing your teeth.

3 Find ways to help, even a little - several little things can add up. So, I always wear a scarf that I can put over my face, I’ve got specs that don’t touch my cheek, I use the strongest pain relief toothpaste with a child’s soft toothbrush. Sometimes heat will help, sometimes cool - cheapest way to check is a hot or cold flannel, then you can invest in heat pads/cooling gel packs or whatever (some people even use frozen, but I’ve never been brave enough to try!). If you’re struggling to eat or drink, silicone straws are useful - you can get wide ones for smoothies - and baby weaning spoons are small and soft.

Hope that gets you started - good luck

[Victoria70222 in reply to Singinglouder]

Thank you so much, I have found that even talking too much triggers it off. I am trying to keep of Carbamazapine as long as possible, also trying to find more time to relax. This morning I asked my daughteer if she would make a batch of dinners made with minced meat, chewing makes it worse. Thank you for your help.

[Singinglouder in reply to Victoria70222]

Yes, when I’m in a flare up speaking or smiling is excruciating. However, my TN is largely controlled by the carbamazepine, so the flares are much less common - last bad one was when I had to have a tooth out last year, and I had to type notes for the surgery and pharmacy to ask for help. Can I ask why you’re putting off carbamazepine? It really does help most people, and there are other meds available if you can’t take it.

Yes, soft food does help. In a flare I’d stick with soup, weetabix or similar, mashed potato, all lukewarm. As things improve a bit, I add in scrambled egg, the protein bit of the cottage pie, very soft macaroni cheese (no al dente!) and so on. And using a small spoon is generally better than shoving in great forkfuls in an attempt to get it over quickly! Some people also find rubbing some pro relief toothpaste into their gums 5 minutes before eating helps.

Hope your current flare calms down soon

[Victoria70222 in reply to Singinglouder]

Thank you for your message. I am learning slowly what I can eat. I went to old peoples lunch today and it was sweet and sour pork, I was able to eat a little of it and enjoyed the rice pudding afterwards. I take so many tablets for cancer also polymyalgia and blood clots so want to keep of the tablets while I am able. What is the name of Pro relief toothpaste ?Many thanks.

[Singinglouder]

I sympathise - I currently take about 35 tablets a day long term, plus inhalers and injections - but the carbamazepine is one I wouldn’t want to give up!

There are different brands of the toothpaste - I use Colgate, which now actually calls itself instant relief, pro relief is the old name, and Sensodyne is probably the best known. ‘Sensitive’ toothpaste, basically - one which says you can rub it into the gums for fast relief, as well as cleaning your teeth with it.

Glad you enjoyed the rice pudding - forgot that one, tho I do eat it during a flare - and banana custard when things are improving 😊