I’ve had really severe face/teeth pain that comes in shoots, darts and whooshes!!! and in between my face is just sore like as if I’ve just come back from the dentist. It became too bad for me to manage yesterday and I knew I needed help. In fact, I kind of ‘hoped’ it was to do with my teeth so I went to the dentist. He told me that everything was fine - so I rang my MS nurse. When I described what was wrong she immediately got in touch with the Consultant etc etc…and then I was diagnosed with trigeminal neuralgia. My MS Nurse explained that this sometimes happens to us MSers and she didn’t seem a bit surprised to be honest. I’ve been given Tegretol tablets to take to help me through but to be honest, it still feels a bit dodgy and I never know when it will hit again. Anyone out there know about this condition and could give me a bit of advise? If so, I’d very much appreciate it!
It’s really good to be able to put it up here even just in the hope that others will understand. Thanks for reading this little post. x r
Here’s a link to the section on MS-related pain from the main part of this MSS site.
It refers to TN and says a little bit about it. It refers to the drug carbamazepine as one of the standard treatments - this is the active ingredient in Tegretol.
I haven’t had TN, but have had stabbing pains elsewhere and was prescribed Tegretol to help. From what I can recall, it took a little while to start working, but then it was very effective for me. Definitely a last-thing-at-night drug - I slept as if I had been sand-bagged! But that’s OK, because it helps you sleep through the pain as well as helping to ease it.
While you are very unlucky ot have TN, you are fortunate in having it recognised early. It is not unknown for people to spend a fortune on dental work that they didn’t need because the doctors and dentists failed ot spot that it was actually TN causing the pain, not tooth trouble!
Can I ask I think I’ve one tooth that seems affected by tn. When I eat I get this stabbing pain it happened with my first attack and has remained maybe happens once a week. Does anyone know, does nerve treatment from the dentist help? The tooth is getting xrayed in a few weeks x
It sounds a lot like the symptoms I have but mine isn’t from my mouth but from behind my left eye and it’s like a cross between an electric shock and a hot tingly sensation down to my mouth (left side of lips). I’ve had no vision problems but my right arm/hand goes funny and my right leg goes weak. The only last a second or two but it’s throughout the day so it is really annoying. This started last February after a bout of flu and my neurologist said he thought it was a brain virus and could take a year or more to clear but he’d send me for an MRI. I had that and then he said he wants one done with dye, I had that in June and after months of phoning I eventually got a neurologist appointment in December where I was told my dx. The way I was told is another matter! I struggled on and I was down to about 3 per week then I started Rebif at the end of January. My symptoms the same as last time gradually grew again to over 60 per day and it had pain with it this time. I lived on ibuprofen and paracetamol until my MS nurse got in touch which took ages and told my GP what to prescribe - I started pregabalin on Monday and it seems to be easing a bit. I hope you get yours sorted x
Moning. Yes TN is a symptom that we have to deal with. I have just come through an extremely long phase of TM. I was taking Amitryptiline which usually worked and helped the pain (you’re supposed to take it all the time, but I only took it when the TN kicked in) but because the last episode was so long my Dr changed me to Carbamazapine which got it under control. The pain is all consuming and debilitating and you really need to get it sorted - speak to your GP quickly. Hope this helps because this is a horrible thing to deal with. Linda x
Hi Ro, yes this is one of the things we have to bare unfortunatly this was my first symtom back in 1981 over the years other things happened i have been told 3 times i have ms then told its not,at the moment i am in limbo but TN and optic neuroitis are the things that are worse for me.
I am on pregabalin for the tn and like you i never know when its going to hit its sometimes just pins and needles down my face but then a red hot needle will shoot into a tooth and i will swear very loudly and frighten everybody round me.
The tn is quite well controled by the pregablin at the moment but when its cold and windy it breaks through.
Its just a matter of getting the correct dose of medication to control this and not leaving you with too many side efects from the medicine.
I hope you get releaf soon a know just how bad this is ,all the best.
Thanks everyone for your comments. Sorry to hear that you all have experience of this awful thing but in a way its good to know we’re not alone or going crazy.
Thanks a mill for the link Alison, it’s very informative. It’s great to hear that the pregabalin is working for you at last Chewitt, it looks as though you’ve really gone through it waiting for something to help you. I love the way you react to a ‘stab’ (a red hot needle) Barbara, I sooooooooooo get that!! Good luck with the x ray Emfraserburgh I hope all will be well for you. and Linda, I’ve been a bit careless with the amitriptyline too. I think I’m doing great in the discipline department when I manage to take the old copaxone every day!!