Hello

[Simplysusieb]

It’s been seven years with TN. Mine is atypical I have the episodes of shocks but the ache and pain never goes away. I feel everyday that I want to pull my teeth out. The zinging pain that shoots from my teeth straight up to my eye. It started out only on my right side of face. The swelling tingling and numbness grew to left eye. It has changed my facial features and most of the time my face seems frozen as if I’ve just been to the dentist. It has effected my hearing and I have vertigo 75% of the time. I was given Carbamazepine (the fog it puts you in like a zombie making it almost impossible to get out of bed) but had a bad reaction making my face swell and extreme pain in legs. They then tried me on Gabapentin but I had similar reaction. I have been on Lyrica and pain killers and it has made it possible to function but still pain on a daily bases. I have had a headache with variations from tension to migraine to hot poker for 7 years. I also have Lupus and Fibromyalgia and suffer from extreme fatigue so the Lyrica doesn’t help much with that. I went to see about Gamma knife and was told it would only maybe have a 30% success and it would only last a short period of time if it took. Also that the chance I could have spinal fluid drip from my nose permanently as a side effect. With such a low success rate I decided not to mess with it. I’m unable to work because I’m left feeling like I have the flu everyday. Head Achy fatigue vertigo

The numbness has effected my tongue and inside of mouth. I slur my words and have to be careful when eating as not to bite my tongue. My mouth often feels like it is burnt.

I just wanted to introduce myself and give some background on my Atypical Trigeminal Neuralgia experiences l

[Teeravis]

Wow, that's really hard, I'm sorry to hear all that you're going through. Do you have any plan of action now?

I just have a constant pain in my face but no shocks and I was told that it's atypical TN. Sometimes I think doctors can't figure out exactly what atypical TN is.

[Simplysusieb in reply to Teeravis]

I agree about that many doctors are clueless. If they can’t fix you they aren’t interested in at least making you functional. Every time in the past I have seen a new doctor they want to mess with medications and at first to “fix” me. I do not do that anymore. I have tried all the medications that are available and that I’m not allergic to and the Lyrica and baclofin was the only thing left.

You are not alone with the Atypical. I’m not sure how old you are but you will unfortunately notice it gets worst as you age.

[jimeka]

Firstly hi and welcome to the forum. Having ms is bad enough but with all the other complaints you have as well, I am sorry. That pain you describe is what I get on my right side, I too would like to have my teeth pulled out. I have been to the dentist and was told my teeth are fine, it’s my ms. The pain shoots to my eye, and I too bite the inside of my mouth. Like you I am on lyrica, I don’t have any solutions for you, sorry. I use microwave heat pads on my cheeks. 🤗

[Simplysusieb in reply to jimeka]

It is the new normal. I’m glad I can at least get up and try to do what I can around my household. The meds can make you very tired as you know. It is nice to know other people have the same experiences and we aren’t crazy. Doctors tend to discount what they don’t understand. I have seen several Neurologists and they seem clueless. The Hospital in Toronto that specializes in the gamma knife was the only place that seemed slightly knowledgeable But because few people have Atypical they want to use me as a test subject. I was not interested in risking my sight or having worst pain and dripping nose. We really have to be our own advocates and do what we can to maintain a “normal” existence.

[erash]

Gamma knife 10+ yrs ago helped my TN

[erash in reply to erash]

Mine was typical TN, intermittent shocks. GK left me with facial numbness...but that’s preferable to pain