Anxiety Man
09-17-2005, 09:32 PM
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.
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.
Sponsor
feelbad
09-27-2005, 11:08 AM
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
feelbad
09-27-2005, 11:13 AM
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
Anxiety Man
09-27-2005, 11:21 AM
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.
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.
Anxiety Man
09-27-2005, 11:26 AM
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.
Anxiety Man
09-28-2005, 12:26 PM
Hello, feelbad. I've not heard anymore from you lately, and just wondering if you're here.
I'm no better. What used to be every now and then and "spells", is now an everyday torture for me now, with these temple jumps in front of my left ear. This all will go to the other side of my face for a while, get vibes in my cheek or right forehead, then it all shifts back over to the left side. An e.n.t. once called it hemifacial spasms, but I think with that, your face contorts morbidly and draws! I see my g.p. Friday and am going to ask him if I can see a neurosurgeon. I found a great Dr. down at San Antonio on a web site that specializes in facial and ear problems. I'm over 200 miles northwest of there, but I'll ask the dr. if there is anyone closer who can do this. I also would like to see a neurosurgeon, as you suggested.
I was diagnosed about 4 years ago with ankylosing spondilitis (sp?) in my neck. I had several quick stabbing pinprick type pains in the left back side of my neck last Sunday, and I don't know WHAT that was! It hasn't done it since. I know I have neck tension and it goes into my left shoulder, but then I'm having more problems with my left shoulder if I try to bend my arm the wrong way. Pain deluxe! A lot of things coming into play here, and I'm unsure what's causing what or affecting what, feelbad.
I'm no better. What used to be every now and then and "spells", is now an everyday torture for me now, with these temple jumps in front of my left ear. This all will go to the other side of my face for a while, get vibes in my cheek or right forehead, then it all shifts back over to the left side. An e.n.t. once called it hemifacial spasms, but I think with that, your face contorts morbidly and draws! I see my g.p. Friday and am going to ask him if I can see a neurosurgeon. I found a great Dr. down at San Antonio on a web site that specializes in facial and ear problems. I'm over 200 miles northwest of there, but I'll ask the dr. if there is anyone closer who can do this. I also would like to see a neurosurgeon, as you suggested.
I was diagnosed about 4 years ago with ankylosing spondilitis (sp?) in my neck. I had several quick stabbing pinprick type pains in the left back side of my neck last Sunday, and I don't know WHAT that was! It hasn't done it since. I know I have neck tension and it goes into my left shoulder, but then I'm having more problems with my left shoulder if I try to bend my arm the wrong way. Pain deluxe! A lot of things coming into play here, and I'm unsure what's causing what or affecting what, feelbad.
Anxiety Man
09-28-2005, 12:29 PM
I get the urge to beg a dr. who does this to shoot that lousy jumping nerve with botox! I have seriously considered seeking out a Dr. who uses it to see if it would settle this mess for about 3 months or so.
luvtocamp
09-28-2005, 05:57 PM
Anxiety Man
I pretty much have the same thing as you. ear humming and spasming on face and temporal lobes. Goes from 1 ear to the other and jumps all over. I am being treated for tmj, so far not much relief. I too wonder what the heck it is. The ent says nothing is wrong with my ears. I am not really convinced its tmj either. I do take valium for it when it gets to the point I can't stand it which is often. Good Luck.
I pretty much have the same thing as you. ear humming and spasming on face and temporal lobes. Goes from 1 ear to the other and jumps all over. I am being treated for tmj, so far not much relief. I too wonder what the heck it is. The ent says nothing is wrong with my ears. I am not really convinced its tmj either. I do take valium for it when it gets to the point I can't stand it which is often. Good Luck.
Anxiety Man
09-28-2005, 06:07 PM
Hello, luvtocamp- Bless your heart, it's a bummer isn't it! We have a weird ailment. It looks like the right dr. could figure it out. Medicine has come so far over the years, looks like they could pin this down. I've had it off and on today. It's been off for the past 3 hours or so--wonderful relief! It can even go into remission for months, and I hope it all will again. Sometimes I can say "Yep, it's sitting at the computer that did it." or "I chewed my food wrong, and that did it", but honestly, I doubt sometimes any of that did it! I even think opening my mouth to brush my teeth can do it! Also, I think sometimes how I've slept may affect it. If I wake up with a stiff neck and feeling bad, I blame that. Well, go to take the wife to a fruit stand. She's my little gourmet cook, and I try to help the cause all I can!
Thanks for talking with me today- Hope you find relief soon, also.
Tony
Thanks for talking with me today- Hope you find relief soon, also.
Tony
Anxiety Man
10-07-2005, 06:34 PM
Hi folks-
Well, I'm waiting on the neurologist's scheduler to call to see when (if?) I get to see him again. The temple woke me up at 5:30 this a.m. vibrating and jumping against my pillow! That started my day wrong, and it's still at me!
Gotta be some answers to this thing!
Well, I'm waiting on the neurologist's scheduler to call to see when (if?) I get to see him again. The temple woke me up at 5:30 this a.m. vibrating and jumping against my pillow! That started my day wrong, and it's still at me!
Gotta be some answers to this thing!
feelbad
10-19-2005, 10:41 AM
Howdy,sorry I haven't been here in a while I have just been given another nasty dx of something rather big and I am really just trying to spend most of my time doing research.i was just wondering,I didn't have time to go back through the other parts of this thread but wanted to ask you,just EXACTLY where IS the problem located in your'neck"?would it happen to be down at the c 8 nerve level or the upper T spine area at all?i am glad you are seeing a new doc.Make sure to have an actual "list" of questions for him/her when you see him.and make sure to bring it with you to the appt and not leave it on the kitchen counter like i did once.kinda blew my whole appt as i could not remember the like three full pages of questions I had had for my new NS.luckily I had to see him the following week.my husband said if I forgot my questions again,he was going to pin them to my shirt,lol.i hope you can get some good answers from this new doc.An NS would still be a great option here if this does not pan out.Marcia