Trigeminal Neuralgia

Am coming out of remission with my TN. And Oh Boy, I forgot just how much it hurt. lol

That is all really. I don’t have anything constructive to say. I just thought i’d share. (although admit it - you are glad I didn’t share ants this time)


Angela xx

Oh great thanks now I’m itching again. Glad the tn is better though. Itchy Arwen Xx

Thanks for that, Angela!

Glad you’re coming out of remission.

I’m pretty sure I have TN, and sympathise wholeheartedly as it is extremely painful.

(…wanders away from computer muttering under her breath “I must not think of ants, I must not thing of ants, I must not…aaarrrrggghh…!!”)

I am coming out of remission which means it is really really really hurting again. :’(

I have been in remission for a few weeks (annoyingly, went into remission just before seeing the neuro lol) was hoping for a longer spell, but not to worry, at least I have drugs to try this time. I want to make sure I am fully out of remission before starting them as I want to be sure that it is the drugs stopping the pain and not just the transition period between remission and episode.

Sorry ladies. Didn’t mean to make you itch. xxx

Hi Angela, sorry to hear that you are relapsing again. Out of curiosity, what does TN feel like? I’m wondering as I am not diagnosed but have an odd sensation on my face, like a slightly numb, warm subtle tingle on my left cheek, often in my lips, sometimes on my chin and the tip of my tongue feels like its been scalded but hasn’t. This odd ‘pain’ made a foray across to my right cheek the other day then retreated. I’ve had stabbing pains there but not for a while. I see a neuro in November.

Hmmmmm What does TN feel like…

I guess the best way to describe it is being hit full blast in the face with a shovel, or a lightning bolt striking your face or having a sledge hammer hit you. 100’s of times a day. Every day. Everytime you touch your face, or frown, or smile, or wind brushes against you…

I got a bone fide electric shock from a light fitting recently. It hurt way less than the TN. Its not called the suicide disease for no reason!! It is classed as the most painful conditions known to man.

Now, I am very lucky indeed. Mine is in the Optical Branch of the trigeminal nerve which is why I have been able to cope for so long. Mainly it strikes the jaw or cheek. Its almost impossible to talk or eat when you are having episodes. There is no way I could survive not being able to eat chocolate.

I also get pins and needles and ‘cramping’ in my face too. Am not sure if this is related.

Here is a good link that describes TN well.

Bet you regret asking now. lol. I hope with everything I have that you are not affected by this.

Angela xx

Ah, I tried to reply, but I dont think it liked my link. I have been put in the queue for moderation. Hopefully it will show up soon. x

Hi Angela. My two worst relapses would include TN or Acute Labrynthitis (AL). I have only experienced AL and that was bad enough. What is the best treatment for TN-? Just so I am prepared. It is filling me with fear already!!! xx

Oh gosh Tracyann. I am so sorry. This is exactly why I shouldn’t post. I was just feeling a bit sorry for myself today cos in the short time I have been in remission, I had forgotten how bad the pain was.

In answer to your question, the 1st line of attack is a drug called Carbamezapine and this usually provides quick relief. If you don’t get on with that drug then there are others to try I believe. Statistically though, only up to 5% of MSers get TN which seems to me like good odds.

I have Menieres disease so can totally sympathise with the labrynthitis.

Angela xx

Angela, thanks for being straight with us! There is always the risk of fear when being informed of unpleasant things like this, but personally I’d rather know. I’m sure I’d be terrified if I ever encountered something like TN out of the blue with no clue. At the moment, I’m just trying to understand all the unusual sensations, pains and experiences I’m going through right now. Just the very fact that despite this intense pain you’ve managed to post (and with an ‘lol’) is actually very encouraging. Thankyou for sharing. Tracyann - {hugs}!

Hi Angela. Please don’t apologise. Like Reikiblossom, I need to know my enemies, so I can deal with them asap! I am definitely making sure Carbamezapine goes on my list. Thanks again. Hope you are feeling much better very soon. Tracyann xx Reikiblossom- Thanks for the hugs- just what I need xx

Not sure what happened there! The response I entered hrs ago for Reikiblossom and Angela appears never to have arrived. Hope you’re not thinking ‘Ignorant soanso!’-lol! Anyway, please don’t apologise, Angela! As Reikiblossom stated, once you know your enemies, you know what you are dealing with. I just hope I am one of the 85%-lol! Reikiblossom- Thanks for the hugs. Just what I needed. Keep happy!

Hey Angela

my dentist queries whether I had TN last year - ?ophthalmic branch. It started with stabbing pains in my eye which were like 20 in the space of a few hours really excrutiating. This then reduced but settled to a borring pain in and around my eye with pain round my ear up my forhead and bridge of nose on L. It hurt to wear my glasses and I just couldn’t tolerate contacts. This then progressed to ?spasms in jaw where everytime I tried to eat my jaw banged together on the left. I couldn’t chew anything and was on soups, it hurt to smile or have anything touch. I’d struggle through work and just come home and colapse on the sofa not wanting to talk to anyone. Normal painkillers didn’t touch it.

All in all it lasted a month and now occasionally I’ll get issues on the L side if I’ve flossed or touched the L side of my upper jaw too much with toothbrush or fiddled with my tongue there when I’ve eaten popcorn or sometimes wind too much in my eye. My situations complicated as I do have a deep filling on the upper L side but when dentist hit tooth, used cold, hot etc nothing triggered any issues. X-rays look fine no obvious decay. I’m dreading as this filling needs to be removed and replaced now as it was semi-temporary. I just hope I don’t have any issues.

So I don’t know if mine was definitely TN but I can certainly sympathise - mine was excrutiating.




I have just re-read my post on this thread and realise I said I was glad you are coming out of remission. I hope you realise that I did not mean to say this…I was obviously having a ‘foggy’ moment. I am so sorry if I caused you any offence or upset. What I meant to say, of course, was I am sorry you’re coming out of remission.

I will check and double-check my posts from now on, just to be sure.

Sorry xx

Reiki and Tracyann. Thank you for understanding. Like you, I like to know what I am up against. An Tracyann, I promise i did not think you ignorent. lol

Reemz. Sounds like it doesn’t it. Lets hope it stays away for you. A lot of people with TN get misdiagnosed in the early stages and end up with unneccessary dental work and extractions. At least your dentist sounded a bit more on the ball. If it does come back, go to your docs. Normal painkillers will not work. Keeping fingers crossed for you.

Purple. Lol. I promise no upset or offence was taken. Its all these silly words for everything. No wonder we are all so flipping confused all the time. Hee hee.

Keep well all

Angela xx

Hi Angela

thats exactly what my dentsit said so they’re all too wary to jump in head first with anything radical and are really keen on the neuro’s opinion on whether this sounds like it was TN or not.

Thanks for keeping your fingers crossed for me. Hope you feel better soon. It’s amazing how such a small area of your body can cause you so much distress but you have no idea what it’s like till you experience it. It’s excrutiating.