This Is MS Multiple Sclerosis Community: Knowledge & Support

[Andy]

Hi there, I've been having a painful facial twitch on the right hand side of my face and ear for a few months now and it's really starting to annoy me, I can even "hear" it, if you know what I mean.
I have PPMS.

My neuro said it was a hemi-facial spasm or myokymia.
He did not offer me any treatment for it.

Is anyone else having the same symptom please?

Regards
Andy

[Marrob]

Dear Andy,

As a result of my SPMS, I now have Trigeminal Neuralgia, commonly known as Tic Douloureux, which I believe is the same thing that you are experiencing. I just today found a site on Google Search for Trigeminal Neuralgia, which will give you more information. www.tna-support.org

I am taking Tergretol (Carbamazepine) with wonderful success. I saw a Neurologist who expereinced TN himself, and prescribed this medication.

Good Luck!

Marg

[Guest]

I also have Trigeminal Neuralgia. At times it gets really bad. I take Neurontin. I call it my miracle drug because it really helps. When I'm really having it bad, I add Topomax and that really helps, too.

[CCmom]

Hi, Andy. Is this Cazza's Andy??? My son had the facial twitch last fall, under his eye and in the corner of his mouth on one side. He said he could hear it, and I could see it at times when he was really tired or overheated. The doc prescribed Neurontin, in a very small dosage to be increased over time. He also told us that it would go away on it's own if we left it alone, but since it was painful for my son and it was bothering him, we elected to try the Neurontin. I am not sure what did it, but the twitch did go away within a couple of weeks after starting the medication. Is Neurontin available in the UK? That is one that has been around awhile, so it is possible that it is.

Anyway, if you are Cazza's Andy, tell her I said hello, and regardless, take care of yourself and let us know how you come out with this.

[jd]

Hello Andy,

Just to say that I had a bout of TN during a relapse in Feb - very painful - but I took nothing for it (start my Avonex tomorrow!) It eventually subsided and now for the time being has gone. Keep in there, I have another friend here in UK who also has had bouts of TN, but they have given way in time. Good luck,

Jady

[lottydotty]

I too have been DX with Trigeminal Neuralgia. At times it's worse than the MS itself.
Neurontin every day and Topamax when it's really bad. I too can hear it in my right ear. Like a clicking or popping noise. Usually when I'm laying down.

[Andy]

Hi all I just wanted to say thank you for all your replies to my post.

It does sound like I have that TN and I'll be mentioning it at my next doctor's appointment to see if he can give me some medication for it.

It's not bothering me too much at the moment, thankfully.
Regards
Andy
p.s.
CCMom (Kim) yes I'm Cazza's Andy, nice to meet you!