Trigeminal neuralgia v. facial spasm? - My MSAA Community

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Trigeminal neuralgia v. facial spasm?

erash profile image
31 Replies

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?

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erash profile image
erash
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31 Replies
Morllyn profile image
Morllyn

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

Sorry! You have a double whammy!☹️

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

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

erash profile image
erash in reply to Jesmcd2

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 😊

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to erash

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.☺ 🌠

Juleigh21 profile image
Juleigh21

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!

erash profile image
erash in reply to Juleigh21

Thanks! Juleigh21

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

Judi4 profile image
Judi4

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.

erash profile image
erash in reply to Judi4

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 🤔

erash profile image
erash

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.

Iona60 profile image
Iona60

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.

erash profile image
erash in reply to Iona60

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)

jimeka profile image
jimeka

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

erash profile image
erash in reply to jimeka

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 🤓

jimeka profile image
jimeka in reply to erash

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

Morllyn profile image
Morllyn in reply to erash

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.

Jbahnan profile image
Jbahnan

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!

erash profile image
erash in reply to Jbahnan

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 🙁

KATC1972 profile image
KATC1972

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!!

mcheri profile image
mcheri

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

erash profile image
erash in reply to mcheri

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

RoyceNewton profile image
RoyceNewton

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 :-)

erash profile image
erash in reply to RoyceNewton

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

Iggyvair profile image
Iggyvair

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

Teeravis profile image
Teeravis

Hello Erash,

I know this was 3 years ago, but I have almost the exact same thing. Did this ever develop into TN?

erash profile image
erash in reply to Teeravis

??? I have TN.

Teeravis profile image
Teeravis

Thank you for the response. What I meant was, did the spasms on the left side of your face develop into TN?

erash profile image
erash in reply to Teeravis

Oh, no thankfully.

Teeravis profile image
Teeravis in reply to erash

Thank God for that. I hope mine doesn't either. Hang in there!

RoyceNewton profile image
RoyceNewton

BilateralTN rare, damn I am rare.

erash profile image
erash in reply to RoyceNewton

So sorry 😢

RoyceNewton profile image
RoyceNewton in reply to erash

hey no biggie life happens, bet I do not say that next time my face explodes

:-)

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