My MSAA Community
3,217 members5,893 posts

Trigeminal neuralgia v. facial spasm?

More recently I've had mild intermittent left face numbness and a few episodes of left face spasms (severe enuf that they contort my face). Had to take Valium to resolve X 1 episode.

I have a history of trigeminal neuralgia (TN) on the right side. Have had for 20 yrs.

Neuro thinks this is now TN on the left side. Bilateral TN is rare, there is no pain only the above symptoms on the left, and I don't want to believe him. Wondered if anyone else had insights about this?

23 Replies
oldestnewest

Wow, I have a friend with TN and it is very painful for her.

Sorry! You have a double whammy!☹️

1 like
Reply

~Hugs~ erash I don't know anything about it, but am sorry your going through this 😞 My thoughts are with you.💕🌠

3 likes
Reply

Jesmcd2 thank you but I'm really doing well just weird MS symptoms that pop up and I'm often unsure whether they need attn. or just blow them off and go on living a beautiful life 😊

3 likes
Reply

A beautiful life always sounds good to me☺ erash Just make sure you keep it in a journal, if you decide not to go see anyone about it. You have to decide that.☺ 🌠

2 likes
Reply

I've had TN on the left side of my face since 2012. Last year, one of my relapses was accompanied by spasms and numbness on the right😳. Not nearly as severe as the left side, but still concerning. Visited a neuro who specializes in migraines and face pain. She said that bilateral TN is rare but she has seen in it MS patients a lot😤. Lucky us.... Good luck erash. I hope this passes quickly!

3 likes
Reply

Thanks! Juleigh21

Sorry for your experiences but they do help me sort out my disbeliefs.

2 likes
Reply

erash I was experiencing hemi facial spasms on the left side of my face. My face would become contorted and my speech a little slurred at times, not always. It doesn't hurt at all. The neurologist didn't think it was part of my MS, but more psychological.

4 likes
Reply

Hmmm...I have noticed more when I'm stressed

Thanks! Judi4

I think for all of our varied MS symptoms there are often varied expert (doc) responses 🤔

5 likes
Reply

Thanks! Morllyn

Currently my TN is controlled with Tegretol and I ? Neuro's conclusion. I do think related to MS but think it's the 7th not 5th cranial nerve that's involved.

3 likes
Reply

erash So sorry that this has developed from the intermittent numbness to the spasms, which I have never had. Glad you called the neuro and that the valium worked.

3 likes
Reply

Neuro NURSE PRACTITIONER was my former student so I'm fortunate that I have easy and direct access when I have questions 😊

Thanks! Iona60 (I keep forgetting to put this at the start of my replies ugh)

4 likes
Reply

Erash, I used to suffer from TN but I had the disc taken out of my neck. But 3 years ago I went numb on the opposite side, the left and when I went to the docs he said it was a Bells Palsy, it has left me slightly lop sided, everyone thought I had had a stroke. Don't know if they are related or not, just thought I would share, blessings Jimeka

4 likes
Reply

jimeka bells palsy involves the facial nerve or seventh cranial nerve. I think that my seventh nerve is what's involved here and not the fifth which is what is related to trigeminal. But who am I to argue with my neurologist (shrug).

Bells palsy does have motor involvement (facial droop). This is just numbness that Isnt associated with the facial spasms. Everything I'm reading says seventh nerve and that this is fairly common with MS 🙁

Oh well...😊😊😊

Blessings to you too!

P.s. I'm reading that both the 5th and 7th r often affected simultaneously because of a blood vessel compression, or perhaps because of an MS lesion? Although I'd suspect that would be on 1 side.

Sorry, I have a tendency to medicalize everything 🤓

4 likes
Reply

No problem, you teach me something new all the time. I can impress my sister when I talk with her. Lol 😂

5 likes
Reply

I medicalize (love that word) too. It helps me to keep things from becoming to emotional if I research and have the scientific answers, if that makes sense.

2 likes
Reply

Hello erase lately I've been having TN on the right side of my face horrible pain for about 10 seconds. It happens about 4 times a week. It's horrible pain!

2 likes
Reply

Jbahnan so sorry for your pain, truly! have you sought treatment?

Tegretol does help me. Not sure gamma knife made much difference.

I attended a TN support group last nite (1st time they had one in my area). Personal stories and the neuro surgeons discussion @ available treatments (few with efficacy for MS) risks, benefits, was unfortunately depressing 🙁

2 likes
Reply

So sorry you are experiencing this awful feeling on both sides of your face. I am experiencing some of it on right side. I'm not sure where you live but if you are not comfortable with your doc's conclusion, talk to another doctor. In the meantime hang in there and keep the faith!!

1 like
Reply

This happens to my husband when (this is going to sound crazy) his blood pressure is very high. I see the spasms and check his bp and it's high. Now he does have hBP all the time but when it gets really high he has facial spasms. His chin spasms

Reply

mcheri my BP is usually Good but thanks! I will def. check it next time this happens.

Reply

erase, g'day this fine whatever day it is for u. Bilateral TN, hmm I wonder about that. Ask your neuro about bells palsy or something similar. Bilateral TN is no fun but, hey it'ss ms expect the unexpected :-) My thinking is no pain, likely not TN, as a lucky bilateral TN person let me assure u PAIN IS involved, & lots of it. Ask neur about other possibilities if spasms persist. keep me informed, I am sure it will be interesting. Royce 3 laser surgeries and counting :-)

1 like
Reply

Hi RoyceNewton Nah...I don't think it's TN either. No facial droop so unlikely Bell's too. Just one of those MS things. I'm not pursuing it further or they will just want to throw me on more drugs--no thank you

3 likes
Reply

When my neurosurgeon did my Rhizotomy he said Bells Palsy was a possible side effect. (I excaped, NO PALSY)

1 like
Reply

You may also like...