Facial problems - kinda scared

[jumpinjiminy]

I have noticed this peculiar pattern that starts with paresthesias, then twitching, then spasms, numbness or weakness. It seems to follow this pattern in most of the areas that have been affected and it's been spreading quickly all over my body during the last couple of months. I'm still in limboland, so have no diagnosis, but can trace some of my symptoms back over 20 years.

This last month, I've been having constant tingling and numbness on my lips, around my mouth, on the chin and on the tongue. It started easing up for a couple of days, then another episode hit this weekend and it has progressed to lip twitching. When this happened to my eye, then it started feeling dead and now it looks sort of dead. I'm really afraid my whole face is going to be affected ending up with spasms and contortions, or worse, paralyzed, like my legs and one arm has had (not paralyzed, but other problems noted). I do hope they find out what's causing this soon and can slow it down. :-(

Is there anyone that has had spasms and twitches in these areas, and do they progress as they do in the rest of the body?

[drsdonthelp]

Thanks Bob, I will give it a try..

[COBOB]

There is an online facial pain test that is pretty accurate.  Try the diagnostic questionnaire at:  https://neurosurgery.ohsu.edu/tgn.php

Bob

[drsdonthelp]

So then, how do you know which one it could be?

[COBOB]

http://facial-neuralgia.org

There is TN, Atypical Facial Pain and even a Facial Migraine variant.

Bob

[drsdonthelp]

I can relate when you talk about how the world will see you when it comes to your illness and how it can change your look,, It is not vain, as I have and still am there. I have had so many surgeries to correct my eye disease and each time it changes my look. It is definately frustrating and it makes you avoid being in public places.  

I have had this pain on the side of my face, it is very brief but shocking.. it hasn't stopped me dead in my tracks but it was definately noticed. Could anything else cause face pain that is shock like ?
Hoping to hear back, thanks

[jumpinjiminy]

I think it's definitely taken the edge off. I do get the stabbing pains, but they aren't severe. There is also a constant aching in my jaw the days that I get them. But again, not severe. I think it keeps it from becoming excruciating, but doesn't get rid of it altogether. May be a good thing I was taking it already when this showed up. I first noticed it while driving in the car. And now I'm reading where vibration is one of the triggers. I also have had earaches in that same ear for decades, when a cold wind blows on my face.

[COBOB]

Interesting.  Baclofen is a second line drug in the treatment of TN.  \  The two have been used in combination to treat TN, but it looks like the the big side effect is that it can cause major drowsiness when combined. You can alway talk to you Neuro about it.

Take a look at the Facial Neuralgia Resource Pages or:
http://facial-neuralgia.org/treatments/drugs/baclofen.html

Bob

[jumpinjiminy]

Thank you for the responses, and Bob for the explanation. I've had pain in my eye like it was burning, but it only lasted a short time one day and hasn't been back. Then I had a similar pain in my eyelid for a short time one day. That hasn't been back. I've been having stabbing pains in my right ear off and on for several weeks now. It seems to be fading. It sure does sound like TGN. My neuro hasn't suggested prescribing anything for it, and is finally now considering doing a spinal tap. He wants the infectious disease doctor to figure out what to look for though.

I'm on baclofen for the spasticity. It got rid of nearly everything, including most of the paresthesias. But when something new shows up, it often breaks through the baclofen, as it is now.

This is really hard. I've had one episode of Bell's Palsy years ago when I had a wisdom tooth extraction done. It was pretty awful. I must be a vain person, because the thought of having my face paralyzed and contorted is almost too much to think about right now. And with the dead eye problem that happened after the two week episode of twitching, I'm really worried it's going to progress in that direction.

I think I could deal with just about everything else. But when it comes to my face, for some reason, that seems harder than anything else that could come along from this. It's too easy for people to read you the wrong way when things don't move like they should. And we don't live in a very understanding world, if you know what I mean. It scares the bejeebers out of me.

[COBOB]

The trigeminal nerve is the main sensory nerve in the face.  The 3rd branch hits the lower jaw, lower lip and a portion of the tongue.  The second branch hits the upper jaw and lower part of the surface of the nose.  The first branch goes up the side of the face to the forehead and the provides sensation for the surface of the eye.  Demyelination of the Trigeminal Nerve is called Trigeminal Neuralgia (TN.)  Several folks of the forum have hit by this. The effects range from tingling paresthesias to "electrical shock type pain" that can stop you dead in your tracks.  There are also several "atypical facial pain syndromes" that can be related.  

Some folks with TN get twitching, and it is more a reflexive response to pain and altered sensation.  There is a pretty effective treatment available using Carbamazeprine (Tegretol.)
I have the electric shock, burning lips, twitching, and a feeling like someone hit my right eye with pepper spray,  and the medication has got it about 95% under control.  It still aches from time to tie, but that would make me drive off the road like the original pain would.  

My neuro was surprised and said if goes along with the rest of my demyelinating disease process. (Yes, that is what they are calling it.)  For the most part, this is one of those things where they prescribe Tegretol and if it controls it they confirm their suspicion and diagnosis TN because the treatment worked.

Bob

[RedFlame]

I had some similarities.  Numb chin and lips were two of my first symptoms.  Mine didn't come and go though.  My numbness remained for 8 months when it changed to hyperesthesia.  It iches like crazy.

I haven't had the twitches though.  Do you have muscle relaxants to take?  Can you call your PCP or neurologist for help?

I hope you get some relief soon!

Red