I don't know if this is the right place to post this, but it's as close as I could come.
For several years, I have had to contend with nerve jumps or "jerks" similiar to an eye twitch, around my ears and face. Sometimes, I even hear a grinding noise that comes from no telling where!
I also have inner ear muscle jumps at times.
I saw a neurologist last year but all he could say was the nerves were firing too fast. All he could recommend is some powerful drug like either Neurontin or Gabitril. I am very sensitive to side effects of everthing, and just couldn't get up nerve to try anything like this. To make things worse, I have hyperacusis, abnormal sensitivity to sound. I have to wear ear plugs when going out of the house, to keep sound down to a tolerable level. Having to wear plugs, I hear these jumps, even if I don't feel them. This adds to the problem.
I know a Dr. who may give Botox for severe cases of this, but even if this was more severe, I'm afraid of that stuff. I hear the side effects are really bad, even maybe flu-like. I also have heard your face droops like you have had a stroke, from the stuff.
I am wondering if anyone else here has any type of problem like mine? If so, what on earth do you do for it, if you are sensitive to meds? I already take lorazepam to control anxiety, and don't want to mix something else with it anyway. I go through these periods, then things seem to settle again, or at least I think they do. I'm wondering today if this has been going at me all the time, and I am just now noticing it! At any rate, it is getting me down and making me even more nervous.
I also post to the RSD board, but I also have the same nerve twitches. Mine however is associated with TMJD. I'm not saying that is what you have at all, but the twitches sound familiar. When it twitches inside your ear, does it sound butterflies flapping their wings. It's really a very strange feeling and sound. I also am taking Neurontin for my RSD and having taken diazepam several years ago for my TMJ, I can tell you that I wouldn't take them together. The neurontin can make you really sleepy and dizzy. Same as the Valium, so I wouldn't mix them unless your doctor says it's okay. I find tha if I just relax my jaw, neck, and shoulder muscles (i.e. just open your mouth slightly just enough so that your teeth don't touch) it seems to help take away some of the twitching. It takes a little practice, but it makes a difference. I hope this helps.
Hello, sillygirl29! Thanks so much for coming back to us. It's nice to meet someone who has the same weird stuff, but I'm sorry that you have to endure this stuff too. I'm almost sure my TMJ is causing a lot of this because I've been unable to see a dentist in a shamefully long time. The reason (and here are more of my health woes) is I have both tinnitus and hyperacusis, an abnormal sensitivity to sound. Having the 'cusis, I dread what the sound of bone-conducted drilling and picking would do to my ears! I'm sure my bite is way off, and may be causing a lot of this.
That's the reason I was afraid to take Neurontin, because I was also taking lorazepam. I'm taking only about 3/4mg. total daily dosage of it, but still I call myself "addicted" due to having taken benzos since 1993. I started with Xanax to help control the loudness of the tinnitus (ringing ears), then I was switched to loraz to help manage anxiety disorder.
Does the Neurontin help (stop?) your spasms? Is it worth those miserable side effects, I guess I'm also wondering? The Dr. seemed to think I would be safe taking that and lorazepam, but to myself, I strongly disagreed! A Nurse Practitioner gave me 100mg. samples of Neurontin and tried to assure me the only side effects in a very few people were swollen feet! She also knew I was taking lorazepam.
I wish I could give out my e-mail to you, so we could keep notes on this crazy stuff, but being on the web out here before a large audience, I am afraid to do that.
I have tried the relaxation, but it doesn't help much if I'm into a bad period, but there are times, it really does. I go through bad spells with this, then I'll be fine for several wonderful weeks. My wife has been in and out of the e.r. 5 times over the past 3 months, and this has geared all my nerves up, and I feel has contributed to the stuff keying up on me again. Stress can really act on a lot of weak points in the body.
Thanks so much, sillygirl29, for replying, and I truly hope you get rid of that menacing stuff very soon!
God Bless,
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Now-- Last night, I had the worst episode ever, since all this facial stuff began, and I don't know how much longer I can endure these. I've read the horror stories about Neurontin, so how about one like Gabitril? It's probably the same. I read up on the possible dangers of Botox injections, so I'm afraid to beg a doctor for that. If it is being caused by a TMJ problem, I don't know how I would endure the dental work. If I went through all of that, and still had this, I would probably have worsened tinnitus and hyperacusis, and maybe still have the problem. I wonder what anyone else would do? I'm thinking of seeing another neurologist, as there are more than one in my city. Surely there is something that can be done to stop the downward spiral of this mess. An ENT told me that this problem doesn't worsen with age, so now I wonder!
Last edited by moderator2; 05-22-2004 at 07:47 AM.
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One additional comment about doctors and meds. Regarding Neurontin, the Drs. I've seen seem all too eager to dole this stuff out, not really knowing (caring?) what problems the patient may encounter both in taking it, and withdrawals. I've never had a Dr. tell me it is addictive and you suffer from withdrawals if you opt to quit it. A nurse practitioner who wanted me to try it, practically made it sound like candy! She claimed there were numerous patients on it whose only problem with a very few of them, was swollen feet! So, we have to watch out for ourselves, it appears, regarding pill pushing physicians. I always read the side effects of meds on the internet about any med either me or my wife is taking. I'm very sensitive to all meds, so it's a necessary precaution, with me.
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