Forum

Trigeminal neuralgia

Hi all Well it’s 1:15am on a Monday morning and I have just had the worst TN experience ever. I don’t know what triggered it all day though I’ve been running about with what I tend to call fake toothache, as my TN tends to present itself as if I have a toothache, but it’s generally manageable. I came to bed about 12:30am (I’ve just finished my eighth working day so effectively it’s now my weekend) and I lay down and a moment later I was having the most excruciating pain in my teeth my tongue up my face to my ear I couldn’t lay still I had to get up and try painkillers. I took ibuprofen but as we know this doesn’t work, the pain lasted about half an hour, I did give in to stronger painkillers and also took tramadol too, I know it’s ok to take these together. The pain has eased of I can lie on that side of my face now but afraid it’s going to start again. I am also on amitriptyline for this and generally it does keep things at bay. I guess it’s a phonecall to my ms nurse in the morning. Its times like these I hate MS the nerve pain is the worst. I really sympathise with everyone else who has TN it’s a killer. Sorry it’s a bit moany but I had to share Clare

Hi Clare,

For a long time lying down triggered my TN too. It got so that I dreaded going to bed. I started to sleep propped up on pillows and that seemed to help.

I found Tegretol prolonged release tablets (carbamazpine) was the most helpful drug for me but I know that others like gabapentin. I took amytriptyline too but that was not effective on its own, I needed the the Tegretol as well.

I’ve had a surgical procedure on the nerve and only get irritation now not the mind blowing pain but you have my sympathies because I know all toow ell what it’s like in the early hours of the morning.

Jane

Hello Clare,

I have T.N and I’ve had the pains I would not like any body to have it. When I first had this I thought I had a pain in my tooth so I went to the dentist. After the fourth visit with the same tooth I asked them to take it out, thinking now the paint will go away. Wrong, it was still there and I found out about T.N and took Carbamazepine the full dose 10 100mg tablets a day. After a few months I had surgery, what a releif it last approx 18 months and have it done again, it’s better than the pain. When I first had it I prayed that I would not wake up in the morning. Just a tip, when you lay down to sleep do not lay your head on the bad side.

Good luck,
Derek

l have had spms for 30yrs - many of those years l was plagued with TN. My GP and Neuro would not agree that it was anything to do with MS - then what do they know!!! l had lots of tests -dental hospital - ENT specialists - all ghastly- l would go to see my osteopath - whose treatment of my spine and neck did give me relief for a while - but then it would come back. l am not exaggerating when l say ’ l could of shot my self through the ear’ the pain was so bad.

l started taking LDN about 4yrs ago - and l have never had TN since - why l do not know - co-incidence - maybe.

ln fact it was only recently when l was reading on this forum about someone with TN - that l realised that mine had - [cross fingers - touch wood] disappeared. Also l take a high dose vitd3 - started that at the same time as LDN.

lts a thought!

F.

I would join in and comment about my TN but, it would it involve using a word not liked on here.

David

Hi,

TN is the absolute pits. I use a combination of tegretol and neurontin but the pain can still blast through that lot.

I found a good remedy that really worked in combination with the tablets called Zostrix. It is a capsaicin based cream and is usually used for shingles but works really well for TN as well. You apply it to the area 3-4 times a day. It does tingle and burn slightly for the first few applications but then it just works . It gives really good relief within minutes and I found it lasted until the next dose was due.

Do wash your hands thoroughly immediately after applying it and don’t rub your cheek up towards your eye while using the cream because if you get it in your eye you will really know about it! Likewise keep it out of your mouth. Don’t even let someone kiss that side of your face… It is a chilli based cream after all

But it was a real saviour for me.

This site gives helpful info on it but it is an Australian site (I am in Australia) but I am sure if you google it you’ll find it in the UK too.

http://www.zostrix.com.au/

You buy it over the counter so no prescription needed.

Hope this helps,

Belinda

Hi

Would someone please explain what TN means, sorry just not heard of it before.

I have suffered pain in my mouth & ear like your explaining, but had no idea it could be ms related.

Many Thanks

Andrea

Acronyms - Andrea - TN - is Trigeminal Neuralgia. And lf you read my post - it drove me to dispair - and l am no wimp!!

l am a big fan of LDN [and vitd3] - as they are the only meds that have given me any help with my ms - which is now 30yrs old - AND l have to get them privately - still its a small price for something that makes me feel better then l have for years.

O N is optic neutritis -

dmd’s disease modifying drugs.

There are more that l do not always no of - especially some of the terms for benefits.

F.