I feel guilty even posting my symptoms because there are so many more here with more severe and strange symptoms too.
I've put up with facial vibrations, jumps, ticks for years. I've put up with tensor tympanic spasms "thumping and booming" noises in my ears. I've put up with vibrations in my foot, all of this for years, and it all just seems to get worse.
I've been to a neurologist or two in this medically-limited city and come away with no diagnoses or help. All one could do is poke the powerful and addictive drug, Neurontin in my face. Of course, I turned it down.
I was just hit with a return of inner ear thumps last week, for the first time in four years. I had it figured it was the flu shot doing that, and quit it. I improved and thought I had it all figured out. I guess I was wrong. I've not had that since last week's two episodes, but as I type, I'm getting a rapid, every few seconds "flutter" from somewhere within my rt. facial cheek bone.
It is maddening and upsetting.
I found a clinic in San Antonio, Tx. that I am interested in going to. I am asking my local dr. about it.
Whatever all this mess is, it isn't easy enough for the basic neurologist to figure out. All one would say is, my nerves are firing too fast. That's a symptom, not a diagnosis. Neurontin is doping it, not fixing or curing it. I'm convinced there is a facial nerve somewhere, and other things coming into play here to cause all of this. Thankfully, I'm in no pain, but this other torture and nerve-wracking torment makes up for that.
AS my title says, I am all fed up.
Last edited by Anxiety Man; 09-17-2005 at 06:33 PM.
Have you ever had an MRI done on your brain and c spine area?your symptoms 'could' be stemming from a problem that is actually located in your c spine or upper T spine,really.There are certain cranial nerves that run from the head and pass thru the neck/c spine then loop back up into the head right around the c 8 nerve or T 1 vertebrae.i really would recommend a good neurosurgeon over any neurologist any day.They do have much more experience in the actual Dx if some rather obscure conditions as they have actually been there inside the area,and a neuro has not.i have had much better experiences with all of my many neuro problems when dealing with NSs not neuros.i do highly recommend getting that MRI though.if nothing else, you can rule this area out or in by whatever shows on the films.You need answers that you do not seem to be getting from anyone who you have seen so far so it is time to go to plan B.please keep me posted,K? FB
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Just an FYI,neurontin is not an addictive type of med.there really is nothing in that med that would cause any sort of an addiction to develop.it is an anti siezure med that really does help to calm the 'misfires" of the nerves tht can cause some pretty bizarre and painful symptoms.i had been on it for almost two years til my new pain doc swittched me to gabitril which is pretty much the same thing as neurontin.It does work very well for some people,and if you are not getting any sort of relief from all of your symptoms in any other way,really, i do think it would be worth a try.but again, it is NOT an addictive med like narcotics would be.FB
Hello, feelbad. I hope you're feeling BETTER as we meet here!
Boy, I wish I could endure an MRI! I've tried to lie down twice for those things, and started smothering! Having a hiatal hernia, I have to sleep on an elevated bed. I also have acid reflux. If I lie flat, it feels like my guts are up at the bottom of my neck! I am claustrophobic also, plus, on top of that, have tinnitus in my hearing and hyperacusis, and abnormal sensitivity to sound. If I didn't smother or freak, my hearing would be adversely affected by the jack hammering of that thing, I'm afraid. Of course, I wear ear plugs most of the time to stay in life and live normally.
But, I'm very grateful for the advice of seeing a neurosurgeon. We do have those in our rather mediocre medical community here. For a city of over 100,000, you would think there would be specialists for any problem here, but they're all in the Metroplex of Dallas or Houston, San Antonio, places like that. I'm needing cataract surgery badly, and as soon as medicaid kicks back in, I need that. How I lie flat for that procedure, we'll have to deal with some way.
Yesterday, and the past several days, the left temple area, a favorite spot for these muscle jumps, ran me out of my mind! Having to wear earplugs, I not only feel it, I hear it! So far, it seems calm today. Maybe I'll have a better day. I can have muscle jumps anywhere, an arm, leg, but it's mostly concentrated from the neck up with me. I have some neck tension and even pain at night sometimes, in bed. I wonder sometimes if some muscle tension even in my TMJ, can be doing this. I see my g.p. Friday, and am going to let him know it's time to deal with this.
Well, this is windy for me, so I'll end this for now. You've had a lot of surgeries, and I hope they have helped.
Whoops! I didn't see your post about the Neurontin. I may be forced to try it, like that or not. I don't know what this young lady's problem was, but on another forum, she made the longest thread of her struggles to come off of Neurontin! That is where I got the idea it is addictive, I guess. I am extremely sensitive to med side effects and can't even tolerate a cholesterol med! I've been on lorazepam for years for anxiety, and sometimes I think that is what is doing this. They use benzos for muscle spasms, and I get afraid maybe it has started causing the very problem it is designed to help prevent. It could be a lot of things.
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