zapping in eyeballs & face twitching . . . so not pretty :(

[burdzmom]

ok. . . . so this feeling of being zapped in the eyeballs is really getting old. its to the point where i am loosing my patience with my kids much faster, i am super irritable and its just simply uncomfortable. i typically wait to take pain medication since i have a super fear of becoming dependant. the pain meds (dilaudid 2mg) is not super high and usually just takes the edge off. (i cant take any other pain meds really. stupid allergies.....) the feeling comes and goes. its completely unpredictable. sometimes when i glance a certain direction, it happens, so i know not to do that again. but then, it will happen when im just sitting around.  if i close my eyes and gently touch my eye lids, i can feel my eyeballs twitching.....almost like moving rapidly or bouncing side to side.
as a result, i have alot of tension in my head and neck. it really screws me up for the rest of the day....often a few days.
then there is the completely attractive facial twitching. really?!?. . . . . as if dealing with this discomfort and pain werent enough, i have this lovely twitch under my left eye. it also varies in intensity. (its like that annoying twitch you get in your eyelid that you think everyone can see - but they cant)
however, my facial spasm is visible to people. sometimes i look like something out of a horror film......(its ok - you all can laugh.....i do.....between sobs.....kidding)
so what's up with this now??? i get the whole nerve thing. but what can i take to stop it or give some relief???
i take Lyrica,cymbalta and wellbutrin daily and some vitamins.....thats it!!
for pain i have dilaudid, muscle spasms and such i have valium and baclofen
again let me emphasize that i have pain everyday BUT choose not to medicate with narcotics and such.  ( ill take meds if my husband is home or if i dont have to drive anywhere)
I am seeing a rheumatologist Jan 24 at UPENN. this unknown autoimmune disease needs a diagnosis. (thinking Lupus after my self diagnosis via GOOGLE - but thats just a hunch. . . )

input from all peanuts of the gallery are welcome.......please :)

thanks all -

Jilian

[travisgreen]

U don't take, or have recetly stpped the drug paxil?

[ceckols]

I have the exact same problem and have had decompression surg, and cranial/cervical fusion at TCI and they are worse now.  I also have been diagnosed with Sjogren's Syndrome, which is an autoimmune disease,similar to Lupus.  It effects the moisture producing glands within our body -- which my neurologist informs me also can "rarely" include the neurological piece, mainly the face and the outer limbs -- such as hands and feet.  Have your rhemy test your blood for Sjogren's antigens, etc.  I have a rhemy, too.  My Sjogren's is very active and very aggressive.  I was diagnosed only a year and a half ago, and have already have had salivary gland masses removed from my mouth.  My salivary glands are all pretty much "toast" and my eye glands are going fast.  The joint pain, exhaustion, brain fog is worse and worse. My neuro believes the Sjogren's is causing me more neuro damage (including lesions on my brain) which is causing the pain and facial twitching then the Chiari is.  Sorry I don't have lots of happy news.  I wish you the best of luck in your search for an answer.

Cindy
In Texas

[Roy902]

I have the same thing happening it has been for a while now;  I went to an Eye Specalist this summer.  To check the pressure in my optical nerves;  he told me that it is from the chiari - the pressure on my othier nerves were fine.  

He said the way to fix this was to have "BOTOX" injections and sometimes that will stop it.
Just below the eyes as mine are below the eyes as well as in the eyes.  I definately know
about the pressure on the neck and in the back.  IT is like putting your neck in a vise and having someone slowly turning the handle squeezing it bit by bit.  The pressures are very intense and the cold weather here in Nebraska do not help.  I have a lot of muscle sapams in my back as a result and it really feels good when this happens.  My whole upper body
moves during the spasms and people ask me if I am okay..

I wish you the best of luck....

[selmaS]

Nystagmus means involuntary eye movement. It is a symptom of chiari.....if this is something new, be sure to let ur chiari dr know asap.....as with ne change in ur condition.

I can be way off base here, but this is what it sounds like to me......

"selma"

[keepswimming]

I HAD some twitching of my right eyeball last year. Others could see it. It happens occasionally now. It was bothersome but not nearly as bad as yours. Hope you feel better soon. :(