Anxiety Man
05-17-2004, 07:30 PM
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.
Thanks for taking time to read this post today.
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.
Thanks for taking time to read this post today.
Sponsor
sillygirl29
05-19-2004, 12:21 AM
Hi Anxiety Man.
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. :)
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. :)
Anxiety Man
05-19-2004, 10:53 AM
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,
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,
Anxiety Man
05-20-2004, 11:56 AM
[ comment removed ]
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!
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!
Anxiety Man
05-20-2004, 12:02 PM
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.
sillygirl29
05-20-2004, 09:40 PM
Hi anxiety man. I only take a relatively low dosage of the neurontin and only at bed time. That may be an option for you to try, but no the neurontin does not stop the muscle spasm, but does help to take away some of the discomfort. I haven't really noticed a lot of the side affects that so many people talk about, but I really wonder if those people aren't taking very large doses every day. If I am having the side affects, they are happening while I'm sleeping so they don't bother me. It may be worth a shot to see if it helps. You can always stop taking it if you don't like the side affects.
One other suggestion I would make is to find out if you could go see a good oral/maxillofacial surgeon rather than an ENT or a regular dentist. I went that route many a time before I found one of the top surgeons in the country to finally help me. He actually believed me and didn't just tell me it was all in my head and that I could open my mouth if I wanted to. I couldn't remember if you said you any changes on your MRI or not. My joints had significant damage evident on both an MRI and CT. If nothing else, maybe the omfs would have a few other suggestions to try.
I know exactly what you mean about the stress. It can really set mine off too. When I feel it starting in, I just take a few minutes away from desk at work to just try to collect myself and force my muscles to relax. I know it's easier said than done, but keep at it, it will become easier once you learn how to make yourself.
One other suggestion I would make is to find out if you could go see a good oral/maxillofacial surgeon rather than an ENT or a regular dentist. I went that route many a time before I found one of the top surgeons in the country to finally help me. He actually believed me and didn't just tell me it was all in my head and that I could open my mouth if I wanted to. I couldn't remember if you said you any changes on your MRI or not. My joints had significant damage evident on both an MRI and CT. If nothing else, maybe the omfs would have a few other suggestions to try.
I know exactly what you mean about the stress. It can really set mine off too. When I feel it starting in, I just take a few minutes away from desk at work to just try to collect myself and force my muscles to relax. I know it's easier said than done, but keep at it, it will become easier once you learn how to make yourself.
Anxiety Man
05-20-2004, 09:55 PM
Hello, SG29! (I hate to call you "Silly":D)
Maybe the Neurontin isn't the booger bear some have said it is, after reading your reply.:) I did a new post about seeing a different neuro, if you didn't catch it yet.
It could be, the ones who are putting out the scare on Neurontin, may be taking megadoses. Already being on lorazepam, also low dosage, I guess I'm kind of nervous about mixing the drugs. It's a shame it doesn't relieve the spasm. I may have not described my spasm very accurately, but mine isn't pain, but a "jumping" of nerves or fluttering like an eyelid will sometimes do.
I'm on Medicaid, SG, and as ridiculous as this is, they won't cover dental or I assume, maxillofacial surgeons, unless the latter comes under "doctors", then it will. It won't cover an optometrist, but will cover my opthalmologist! I can't afford a dentist, and that is my biggest drawback. I did see a TMJ specialist (found I had been in first grade with him!) back in '99 or '00, and at that time, the scanning X-ray didn't show anything bad, but he did find my left TMJ muscle in the back of my mouth had significant tension in it. By now, they both may for all I know. Due to lack of dental work in so long, I know my bite is "east by west" wayy off!
I've not had a MRI. I also have sensitive hearing and am very claustrophobic. I just hope it will go into remission. I've had a better day today. An ent once said this doesn't worsen with age, so I've got to hold on to that hope I guess.
Thanks for writing, and I will try to post the outcome of the neuro visit.
Maybe the Neurontin isn't the booger bear some have said it is, after reading your reply.:) I did a new post about seeing a different neuro, if you didn't catch it yet.
It could be, the ones who are putting out the scare on Neurontin, may be taking megadoses. Already being on lorazepam, also low dosage, I guess I'm kind of nervous about mixing the drugs. It's a shame it doesn't relieve the spasm. I may have not described my spasm very accurately, but mine isn't pain, but a "jumping" of nerves or fluttering like an eyelid will sometimes do.
I'm on Medicaid, SG, and as ridiculous as this is, they won't cover dental or I assume, maxillofacial surgeons, unless the latter comes under "doctors", then it will. It won't cover an optometrist, but will cover my opthalmologist! I can't afford a dentist, and that is my biggest drawback. I did see a TMJ specialist (found I had been in first grade with him!) back in '99 or '00, and at that time, the scanning X-ray didn't show anything bad, but he did find my left TMJ muscle in the back of my mouth had significant tension in it. By now, they both may for all I know. Due to lack of dental work in so long, I know my bite is "east by west" wayy off!
I've not had a MRI. I also have sensitive hearing and am very claustrophobic. I just hope it will go into remission. I've had a better day today. An ent once said this doesn't worsen with age, so I've got to hold on to that hope I guess.
Thanks for writing, and I will try to post the outcome of the neuro visit.
sillygirl29
05-20-2004, 10:45 PM
Will they take a referal from another doctor to the oral surgeon. By the way some oral surgeons are actually md's. Mine was, so maybe check on that. My muscles jump too, but sometimes it actually hurts when it does it and I feel like I have a constant ear ache all the time. Just a question, but find out about open mri, but I don't know how loud those are. I'm guessing you had a panorama? Mine looked normal too, but they knew something else was wrong and the only way to tell was to do an mri and/or ct. Since my mouth was clenched shut for so long, I also had to have the muscles cut on both sides of my face. I have scars on the inside of my mouth (back of the jaw up to canine teeth on both sides). Please start to relax your muscles, so you don't have to have the muscles cut. OUCHIE!!!!!!!!
Anxiety Man
05-21-2004, 10:46 AM
I don't know about the referral. I'm sure sorry to know there is pain associated with your spasms. I don't have the pain, but I'm a nervous type, and those things drive me to the edge! I'm hoping I'm in for some remission for a while. It can be quiet for weeks before a flare-up. The thing is I don't grit my teeth or clinch, the spasms just come or they don't. Therein lies the mystery. That sounnds like a horrible thing to have to have muscles cut! The TMJ Dr. found tension in the back left muscle, and my mouth was wide open for him to be able to do this, so I couldn't have been clinching my mouth shut. Where the tension comes from there, I don't know.
Murphy
05-26-2004, 10:22 PM
Anxiety, Gd. name choice. U obviously know the problem & admit you have it. That's
great. Most of spasms, twitches, etc. are can come from stress. Xanax is almost like
Loraz. Both have a hidden benefit as a muscle-relaxant for spasms. Xanax wks. faster
but Loraz. is easier to function with. I can handle almost anything. Doc wouldn't give
me rx refill for Xanax w/o trying Neurontin 1st! 100mg @ bed & by 3rd night I couldn't
think straight. Dr. said keep taking & I got worse. I stopped & he stopped my re-fill!
Friend is up to 3500mg & `starting ' to feel better. What's that abt? Once she stopped
2 days & had a seizure. It may help Neuro problems but can cause them if that's not
the problem. U may just need upgrade dose on what U respond to. Also, gd-sleep will
give U less stress. Try Ambien rx & keep records. Protein in foods balances insulin.
I eat peanut-btr if jittery & I'm less stressed 20 min. later. They will give U Xanax for
an MRI. I just ask for lots of air to be blown in & close eyes & dream up a vacation.
Neurontin `is' handed out often. It is to be monitored though & samples are a big NO. It does zip for twitches. It really does sound like U have chemical-anxiety & on the
right track. Focus on that & calming stress. Try a hot-tub too. I'm very serious.
great. Most of spasms, twitches, etc. are can come from stress. Xanax is almost like
Loraz. Both have a hidden benefit as a muscle-relaxant for spasms. Xanax wks. faster
but Loraz. is easier to function with. I can handle almost anything. Doc wouldn't give
me rx refill for Xanax w/o trying Neurontin 1st! 100mg @ bed & by 3rd night I couldn't
think straight. Dr. said keep taking & I got worse. I stopped & he stopped my re-fill!
Friend is up to 3500mg & `starting ' to feel better. What's that abt? Once she stopped
2 days & had a seizure. It may help Neuro problems but can cause them if that's not
the problem. U may just need upgrade dose on what U respond to. Also, gd-sleep will
give U less stress. Try Ambien rx & keep records. Protein in foods balances insulin.
I eat peanut-btr if jittery & I'm less stressed 20 min. later. They will give U Xanax for
an MRI. I just ask for lots of air to be blown in & close eyes & dream up a vacation.
Neurontin `is' handed out often. It is to be monitored though & samples are a big NO. It does zip for twitches. It really does sound like U have chemical-anxiety & on the
right track. Focus on that & calming stress. Try a hot-tub too. I'm very serious.
papergoods
05-27-2004, 12:43 AM
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.
RE: Neurontin, yes I think this is the "in fashion" drug to hand out right now. there was a whole dateline special on it.
RE: Neurontin, yes I think this is the "in fashion" drug to hand out right now. there was a whole dateline special on it.