plkelly
06-03-2004, 07:20 PM
Does anyone here have both trigeminal neuralgia and TMJ? I have had this for 9+ years, and right now it is the worst ever--can't talk, swallow, sip coffee without lighting striking my jaw/face. I'd be interested to hear of any treatment that has worked for anyone else with this. I went into a splint for the TMJ and was pain-free for almost 10 months--the longest ever--but it didn't last as I'd hoped. I see the orthodontist (he thinks the teeth are just moving and temporarily throwing my bite off again), an acupuncturist, a chiropractor, and my regular doctor. She is switching me from Tegretol to Neurotin. I also take Lexapro for the generalized anxiety caused by this never knowing when the pain will strike.
I still have plans for every evening this weekend--I hope they have some soup, cuz I haven't eaten anything solid in over a week. But I refuse to cave in to this and become a recluse. Usually my pain is a little better in the evenings, so we'll see how it goes. Let me hear from you.
Patsy
I still have plans for every evening this weekend--I hope they have some soup, cuz I haven't eaten anything solid in over a week. But I refuse to cave in to this and become a recluse. Usually my pain is a little better in the evenings, so we'll see how it goes. Let me hear from you.
Patsy
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Ann123
06-04-2004, 01:31 AM
well , I am told I have both. Ouch!
I wear a splint and take Neurontin and Lexapro.
I have only had this for about a year and a half though.
still very confused with the diagnosis. interesting - my pain is worse in the evenings.
what kind of splint did you wear that helped? did you ever get tooth pain with this?
take care, Ann
I wear a splint and take Neurontin and Lexapro.
I have only had this for about a year and a half though.
still very confused with the diagnosis. interesting - my pain is worse in the evenings.
what kind of splint did you wear that helped? did you ever get tooth pain with this?
take care, Ann
plkelly
06-04-2004, 11:07 AM
I forgot to add that after the splint I moved into braces. Got the uppers in September and lower ones in January. I hope the orthodontist is correct that this is just caused by the teeth moving and it will go away again.
I think mine is worse in the mornings because I clench so much at night. And sometimes in the afternoons or evenings, I can almost feel something change in the joint--like it's slipped into place--and I can talk and am pain free.
I have a lot of confusion about my diagnosis, too. At first they told me just TN, then it was just TMJ--now they're saying both.
My husband has a theory that my body sort of 'hung on' until I was through all the stress I've had since last August. First my mother got to the point where she couldn't live by herself anymore, and I had to go and get her moved out of her house. My sister passed away in October. That was really a hard time. My best friend was in intensive care and almost died from West Nile Virus. I've made several trips (400 miles) to see my mother, who has been in the hospital a couples times since I got her moved. This last time I went to take care of the sale of her stuff and getting the house emptied for the buyers. I was planning on just relaxing this summer--my favorite time of year.
Do you do any alternative or additional stuff like yoga or meditating? I ice mine down a few times a day--seems to help for a short time.
How much neurontin do you take?
Sorry to be so wordy! My troubles all began after dental work--a crown that I don't even believe I needed was placed wrong and threw my bite off. The pain started a day later. My bite had never been good, but it just couldn't adjust to anymore.
Let me hear your story.
I think mine is worse in the mornings because I clench so much at night. And sometimes in the afternoons or evenings, I can almost feel something change in the joint--like it's slipped into place--and I can talk and am pain free.
I have a lot of confusion about my diagnosis, too. At first they told me just TN, then it was just TMJ--now they're saying both.
My husband has a theory that my body sort of 'hung on' until I was through all the stress I've had since last August. First my mother got to the point where she couldn't live by herself anymore, and I had to go and get her moved out of her house. My sister passed away in October. That was really a hard time. My best friend was in intensive care and almost died from West Nile Virus. I've made several trips (400 miles) to see my mother, who has been in the hospital a couples times since I got her moved. This last time I went to take care of the sale of her stuff and getting the house emptied for the buyers. I was planning on just relaxing this summer--my favorite time of year.
Do you do any alternative or additional stuff like yoga or meditating? I ice mine down a few times a day--seems to help for a short time.
How much neurontin do you take?
Sorry to be so wordy! My troubles all began after dental work--a crown that I don't even believe I needed was placed wrong and threw my bite off. The pain started a day later. My bite had never been good, but it just couldn't adjust to anymore.
Let me hear your story.
Ann123
06-04-2004, 03:09 PM
HI,
So the braces were like Phase II of your TMJ treatment,then? I hope your ortho is right about the teeth just moving and your pain will lessen up soon.
I do clench at night as well, the splints just don't seem to stop that! My pain gets worse at night perhaps after talking, chewing, etc. It hurts in the morning but then as I use my mouth it continues to get worse. Like the days I work.
I think my diagnosis depends on what doctor I see that month, lol.
I think your husband's theory is probably at least partly true. Stress has its role; and when we can't relieve it that is worse. Plus you were probably not sleeping well. Sorry to hear about all your bad times. Hopefully you can relax soon. I love summer too. Being from the Midwest, we cherish these few months of warm weather.
I actually do better with moist heat, not ice. I just did 9 treatments of PT with ultrasound therapy and manual shoulder/neck massage that was helpful.
I am just starting yoga. I think I will like it. Learning to relax is never something I thought about before but I am working on it.
Neurontin I take 2400 mgs. Why are you stopping the Tegretol? Is it losing effectiveness? I've heard that it really works well. My neuro wanted to try something with less side effects first. But I don't think it gets the pain that great. He is adding Topamax to the mix. All these meds. Scary stuff.
Went to the dentist for a cleaning today and the hygientist slipped me her jar of Lidocaine topical to try.
Interesting yours started with a crown, Mine did too. Was that crown 9 years ago? wow, I am really discouraged to hear that. My bite is not so good either. I wore braces years ago already. But gaps are forming so the teeth are moving.
Does talking and chewing aggravate your pain? My neuro thinks its odd when I say that yet I read that all the time on TN boards. I wonder about him sometimes.
take care, keep me posted,
Ann
So the braces were like Phase II of your TMJ treatment,then? I hope your ortho is right about the teeth just moving and your pain will lessen up soon.
I do clench at night as well, the splints just don't seem to stop that! My pain gets worse at night perhaps after talking, chewing, etc. It hurts in the morning but then as I use my mouth it continues to get worse. Like the days I work.
I think my diagnosis depends on what doctor I see that month, lol.
I think your husband's theory is probably at least partly true. Stress has its role; and when we can't relieve it that is worse. Plus you were probably not sleeping well. Sorry to hear about all your bad times. Hopefully you can relax soon. I love summer too. Being from the Midwest, we cherish these few months of warm weather.
I actually do better with moist heat, not ice. I just did 9 treatments of PT with ultrasound therapy and manual shoulder/neck massage that was helpful.
I am just starting yoga. I think I will like it. Learning to relax is never something I thought about before but I am working on it.
Neurontin I take 2400 mgs. Why are you stopping the Tegretol? Is it losing effectiveness? I've heard that it really works well. My neuro wanted to try something with less side effects first. But I don't think it gets the pain that great. He is adding Topamax to the mix. All these meds. Scary stuff.
Went to the dentist for a cleaning today and the hygientist slipped me her jar of Lidocaine topical to try.
Interesting yours started with a crown, Mine did too. Was that crown 9 years ago? wow, I am really discouraged to hear that. My bite is not so good either. I wore braces years ago already. But gaps are forming so the teeth are moving.
Does talking and chewing aggravate your pain? My neuro thinks its odd when I say that yet I read that all the time on TN boards. I wonder about him sometimes.
take care, keep me posted,
Ann
plkelly
06-05-2004, 12:01 PM
Yeah, the crown was 9 years ago. I went to his new associate instead of waiting for my regular dentist because my son was getting married and we were having the reception here. I didn't want to put it off and risk pain on the special day. How often I regret that. I early on quit that dentist after 17 years--when I kept going back to see what was wrong, he told me one day that he could fix everything below my ears but couldn't fix things in my head above my ears--implying it was all in my head! After knowing me for 17 years. I was furious and never went back there again.
And yes, the braces are Phase II--I debated all the pros and cons before taking this step, I was pain free for so long when I started I expected it to go on. I really like this guy--Moshiri out of St. Louis. He comes here to Springfield one week and month and had some marvelous results. By the way, where are you in the Midwest?
What is Topamax? A muscle relaxant? I think I need one, but when I went to my doctor Wednesday (took my husband along since I've been unable to say more than a couple words without that searing pain kicking in), he asked about one and she said since I was starting two new meds, that was enough for the time being. I read on the TMJ boards about a "aromotherapy relief" muscle relaxing cream at Bath and Body Works that works pretty well, and am going to pick up some today.
I'm switching meds because I had been off the Tegretol for 8 or 9 months, and when I started back on it this time it really upset my stomach. And it seemed like I had to take so much. Early on it worked quite well for me--I actually tolerated it well and had no side effects besides a little dizziness when I first started. The blood tests you have to have are not that frequent and didn't bother me. I was still working then, and it was a God-send. If the Neurontin doesn't work I'll try switching back. Right now I'm taking both because you can't stop the Tegretol immediately--you have to wean off it. Have a lot of pain--can only eat liquids, can't say more than a few words at a time--really worse than I've ever had. So I'd guess you'd for sure say that talking and chewing aggravate it! I went to a neurologist once and he asked me to describe my pain, and I did, and he said "you have TN, that'll be $60" and sent me away. lol Really, about that fast. We even sat in his office and talked--didn't even make it to an exam room. I went to the Shealy Institute here--pretty famous in alternative circles--and was most dissatisfied.
Since I can't talk and I really like to, I guess I substituting keyboarding.
Patsy
And yes, the braces are Phase II--I debated all the pros and cons before taking this step, I was pain free for so long when I started I expected it to go on. I really like this guy--Moshiri out of St. Louis. He comes here to Springfield one week and month and had some marvelous results. By the way, where are you in the Midwest?
What is Topamax? A muscle relaxant? I think I need one, but when I went to my doctor Wednesday (took my husband along since I've been unable to say more than a couple words without that searing pain kicking in), he asked about one and she said since I was starting two new meds, that was enough for the time being. I read on the TMJ boards about a "aromotherapy relief" muscle relaxing cream at Bath and Body Works that works pretty well, and am going to pick up some today.
I'm switching meds because I had been off the Tegretol for 8 or 9 months, and when I started back on it this time it really upset my stomach. And it seemed like I had to take so much. Early on it worked quite well for me--I actually tolerated it well and had no side effects besides a little dizziness when I first started. The blood tests you have to have are not that frequent and didn't bother me. I was still working then, and it was a God-send. If the Neurontin doesn't work I'll try switching back. Right now I'm taking both because you can't stop the Tegretol immediately--you have to wean off it. Have a lot of pain--can only eat liquids, can't say more than a few words at a time--really worse than I've ever had. So I'd guess you'd for sure say that talking and chewing aggravate it! I went to a neurologist once and he asked me to describe my pain, and I did, and he said "you have TN, that'll be $60" and sent me away. lol Really, about that fast. We even sat in his office and talked--didn't even make it to an exam room. I went to the Shealy Institute here--pretty famous in alternative circles--and was most dissatisfied.
Since I can't talk and I really like to, I guess I substituting keyboarding.
Patsy
Ann123
06-06-2004, 01:11 AM
[QUOTE=plkelly
Hi Patsy,
I am in the southwest suburb of Chicago.
Topamax is not a muscle relaxant. It is another drug used for nerve pain.
It has been very successful in treating migraines. It is recently being used for TN. I don't know if it will work or not -I am still on a low dosage; it has to be ramped up like Neurontin. I have read on some boards people having success with it though. As the Topamax is increased he plans to lower the Neurontin which has not been doing the job too well for me lately. I do not take any muscle relaxant either. Did you get the cream and try that? I plan to do that as well. I did learn in PT to relax my muscles and am also finding yoga helps me as well. Are your neck and shoulders tense or just your face muscles?
I'm sorry you are in so much pain now. Not being able to talk and laugh is tough I know. I was that way about six months ago. It is so miserable. So you don't see a neurologist, just a GP for your TN? I do see a neurologist. My oral surgeon referred me so he has dealt with patients with facial neuralgias a lot. I like him. But it does sound like your doctor is doing the same things a neuro would so I guess no diff. Have you ever considered any of the surgeries for your TN? It sounds like if it continues to worsen like this and the meds aren't working as well that might be something to look in to. I know - very scary stuff.
Best get to bed, hope you feel better real soon,
Ann
Hi Patsy,
I am in the southwest suburb of Chicago.
Topamax is not a muscle relaxant. It is another drug used for nerve pain.
It has been very successful in treating migraines. It is recently being used for TN. I don't know if it will work or not -I am still on a low dosage; it has to be ramped up like Neurontin. I have read on some boards people having success with it though. As the Topamax is increased he plans to lower the Neurontin which has not been doing the job too well for me lately. I do not take any muscle relaxant either. Did you get the cream and try that? I plan to do that as well. I did learn in PT to relax my muscles and am also finding yoga helps me as well. Are your neck and shoulders tense or just your face muscles?
I'm sorry you are in so much pain now. Not being able to talk and laugh is tough I know. I was that way about six months ago. It is so miserable. So you don't see a neurologist, just a GP for your TN? I do see a neurologist. My oral surgeon referred me so he has dealt with patients with facial neuralgias a lot. I like him. But it does sound like your doctor is doing the same things a neuro would so I guess no diff. Have you ever considered any of the surgeries for your TN? It sounds like if it continues to worsen like this and the meds aren't working as well that might be something to look in to. I know - very scary stuff.
Best get to bed, hope you feel better real soon,
Ann
plkelly
06-06-2004, 04:06 PM
Hi, Ann--
Hope the Topamax works for you. I go to an Internist and she's very conservative about dosage--I always have to get up in the night and take one that makes me go over the limit on the prescription. But I really don't think doctors should underprescribe.
I went out to eat last night and did great! The evening before I had soup, but this was a little hard to find place down a dirt road, and they only are open once a month (the rest of the time they only do catering) and have a rotation of 5/6 different menus. We got the picnic night. I was able to eat fried chicken if I cut it in very small pieces, and handled the rest OK--potato salad, deviled eggs, etc.--I stayed away from the green salad and cole slaw. I had a glass of wine first and had timed my meds to be at peak efficiency. And I have been much better today. I think I get so tense and anxious and it starts a cycle that just escalates, once I break that cycle I start getting better. Hope that's the case here.
I went to get the muscle cream and they were out but should have some in next week. And I'm going to see about a PT or get a muscle relaxant RX from my doctor--I work out 2/3 times a week, and that helps, too.
I haven't considered any of the surgeries. I had two MRI's to see if it was a problem with the nerve getting pinched by the blood vessels. I think that if they find that they can do surgery, but from what I've read, it's only successful part of the time. I didn't have that problem anyway. I also have had my sinuses x-rayed, and a scan of the area where the spine meets the head. Apparently there are tumors there that can cause the same sort of pain. It's really sad (and scary, or pathetic or something) and you can be in so much pain you're cheering on a positive tumor report! At least then they would have something concrete to do. What about you? Any surgeries or tests? I really sort of have a gut feeling that most of mine is attribuable to the TMJ, rather than TN--but the doctors all argue with me. Imagine! lol
My baby brother lives in Hinsdale--
Hope you're doing well--relax today and I wish you a good week.
Patsy
Hope the Topamax works for you. I go to an Internist and she's very conservative about dosage--I always have to get up in the night and take one that makes me go over the limit on the prescription. But I really don't think doctors should underprescribe.
I went out to eat last night and did great! The evening before I had soup, but this was a little hard to find place down a dirt road, and they only are open once a month (the rest of the time they only do catering) and have a rotation of 5/6 different menus. We got the picnic night. I was able to eat fried chicken if I cut it in very small pieces, and handled the rest OK--potato salad, deviled eggs, etc.--I stayed away from the green salad and cole slaw. I had a glass of wine first and had timed my meds to be at peak efficiency. And I have been much better today. I think I get so tense and anxious and it starts a cycle that just escalates, once I break that cycle I start getting better. Hope that's the case here.
I went to get the muscle cream and they were out but should have some in next week. And I'm going to see about a PT or get a muscle relaxant RX from my doctor--I work out 2/3 times a week, and that helps, too.
I haven't considered any of the surgeries. I had two MRI's to see if it was a problem with the nerve getting pinched by the blood vessels. I think that if they find that they can do surgery, but from what I've read, it's only successful part of the time. I didn't have that problem anyway. I also have had my sinuses x-rayed, and a scan of the area where the spine meets the head. Apparently there are tumors there that can cause the same sort of pain. It's really sad (and scary, or pathetic or something) and you can be in so much pain you're cheering on a positive tumor report! At least then they would have something concrete to do. What about you? Any surgeries or tests? I really sort of have a gut feeling that most of mine is attribuable to the TMJ, rather than TN--but the doctors all argue with me. Imagine! lol
My baby brother lives in Hinsdale--
Hope you're doing well--relax today and I wish you a good week.
Patsy
Ann123
06-08-2004, 12:00 AM
[QUOTE=plkelly]Hi Patsy.
Been seeing you over there on the tmj board - but thought I'd visit you here too. lol. Yes my doctor is conservative with the meds too. He ramps up very very slowly. I am like come on already, I have no side effects, let's go and see if this is going to work or not.
I'm glad you got to eat. I remember a meal at Wendy's - a baked potato with chili and cheese and a frosty and a few fries. It was after a horrible cycle and it tasted so good. Yeah, I cycle too and I am learning better now not to panic and to control the tension as that makes things that much worse. You described it perfectly, it escalates, til the cycle breaks, then you get better til it starts up again. Does yours ever seem hormonal at all? I am peri-menopausal, so don't always get periods; but the months I do, before them the pain kicks in I think - I am starting to track that.
So why do you doubt your tn diagnosis anyway? when you described tn on the other board it sounded pretty classic with the triggers and all - were you just describing what you've read or are those your symptoms? cuz if they are I think you have it, what else would cause that? the relief in pain from the splint could of just been a remission couldn't it have been?
I am worried about your pain and braces. I hope it gets better. I just don't like the sounds of that or your doctors explanation. But what do I know- not much really.
I loved PT - try it if you can. ultrasound and massage therapy on the neck and shoulders - great stuff. my max ran out for insurance this year though.
Your brother lives in Hinsdale - thats funny, my neurologist is in Hinsdale.
your brother's not a neurologist is he? that would be way too small of a world.
Hope this finds you still doing better.
Ann
Been seeing you over there on the tmj board - but thought I'd visit you here too. lol. Yes my doctor is conservative with the meds too. He ramps up very very slowly. I am like come on already, I have no side effects, let's go and see if this is going to work or not.
I'm glad you got to eat. I remember a meal at Wendy's - a baked potato with chili and cheese and a frosty and a few fries. It was after a horrible cycle and it tasted so good. Yeah, I cycle too and I am learning better now not to panic and to control the tension as that makes things that much worse. You described it perfectly, it escalates, til the cycle breaks, then you get better til it starts up again. Does yours ever seem hormonal at all? I am peri-menopausal, so don't always get periods; but the months I do, before them the pain kicks in I think - I am starting to track that.
So why do you doubt your tn diagnosis anyway? when you described tn on the other board it sounded pretty classic with the triggers and all - were you just describing what you've read or are those your symptoms? cuz if they are I think you have it, what else would cause that? the relief in pain from the splint could of just been a remission couldn't it have been?
I am worried about your pain and braces. I hope it gets better. I just don't like the sounds of that or your doctors explanation. But what do I know- not much really.
I loved PT - try it if you can. ultrasound and massage therapy on the neck and shoulders - great stuff. my max ran out for insurance this year though.
Your brother lives in Hinsdale - thats funny, my neurologist is in Hinsdale.
your brother's not a neurologist is he? that would be way too small of a world.
Hope this finds you still doing better.
Ann
plkelly
06-08-2004, 11:47 AM
Ann--
Wouldn't that just be too weird! He's not, but if he were I would call him and tell him to take care of you right now! I went through menopause about 6 or 7 years ago (god, I'm really getting old!), but all through my life I noticed hormonal things. Maybe just normal stuff, except during both pregnancies, I got panic attacks the first trimester. And I was really happy about the pregnancies and other than that, never felt better. They weren't frequent, but still . . .It's worth tracking.
The stuff going on now I know isn't TN--it's pretty much constant, and really bad in the mornings. I can't talk without this burning pain. Other times I have had the other kind of pain--when I was working, I remember just dreading cleaning my face in the morning, because I had to touch my nose. And brushing my teeth was torture. And once it was over it would be OK. Maybe I just don't want to believe the TN diagnosis because it sounds so bad--I did ask my doctor if TMJ could have trigger points and she said yes.
I see the ortho tomorrow and hope I get some better answers. I scheduled the appointment for later in the date when I can talk without that pain. Gosh, I wish this would end. I'm really close to my non-neurologist brother (he's an investment guy--handles rich people's money) and we're supposed to go see them this month. For some reason, this condition is embarrassing to me. Like I know that when I'm there and we all get up in the morning, I'll feel like I have to talk a little, too, even though it's awful in the mornings. I rarely let people (except my family) know that I'm suffering. German stoicism.
Let me know about the physiatrist--I picked up a folder on that at my hospital-owned health club and I think I'll have my doctor refer me. I see her in a short time. Seems like I spend all my time going to doctors, and I've always thought of myself as so healthy.
Have a good day!
Patsy
Wouldn't that just be too weird! He's not, but if he were I would call him and tell him to take care of you right now! I went through menopause about 6 or 7 years ago (god, I'm really getting old!), but all through my life I noticed hormonal things. Maybe just normal stuff, except during both pregnancies, I got panic attacks the first trimester. And I was really happy about the pregnancies and other than that, never felt better. They weren't frequent, but still . . .It's worth tracking.
The stuff going on now I know isn't TN--it's pretty much constant, and really bad in the mornings. I can't talk without this burning pain. Other times I have had the other kind of pain--when I was working, I remember just dreading cleaning my face in the morning, because I had to touch my nose. And brushing my teeth was torture. And once it was over it would be OK. Maybe I just don't want to believe the TN diagnosis because it sounds so bad--I did ask my doctor if TMJ could have trigger points and she said yes.
I see the ortho tomorrow and hope I get some better answers. I scheduled the appointment for later in the date when I can talk without that pain. Gosh, I wish this would end. I'm really close to my non-neurologist brother (he's an investment guy--handles rich people's money) and we're supposed to go see them this month. For some reason, this condition is embarrassing to me. Like I know that when I'm there and we all get up in the morning, I'll feel like I have to talk a little, too, even though it's awful in the mornings. I rarely let people (except my family) know that I'm suffering. German stoicism.
Let me know about the physiatrist--I picked up a folder on that at my hospital-owned health club and I think I'll have my doctor refer me. I see her in a short time. Seems like I spend all my time going to doctors, and I've always thought of myself as so healthy.
Have a good day!
Patsy
NHone
06-09-2004, 03:48 AM
pKelley, Hi....Mother had a little of the TMJ problem, but mostly tight muscles, and got to the point where her feet wouldn't move. Like they were stuck. When she did get moving she could walk ok. Then she went to a walker, and then to a wheelchair. She went to 3 neurologist at Barnes/Wash U.. They thought she had spino-cerrebellar ataxia. She didn't turns out to be low magnesium by being given high doses of calcium. The low magnesium caused angina and elevated blood pressure...so they gave her calcium channel blockersand diuretics. THe diuretics depleted her magnesium even more. This in turn raised her cholesterol. Not a lot but the doctor put her on Lipitor, This depleted her CoQ10 (as the diuretics will do also)....finally got to the point where she couldn't walk. Any way she had low magnesium causing neurological problems, and perpheral neuropathy caused by statin drugs and ataxia (walking problems) secondary. She is now off the statins , on CoQ10 and on magnesium suplements. She is getting much better. Now back to her walker and some times without that. Magnesium is vital and low magnesium can cause TMJ. By the way Barnes didn't find the low magnesium, you have to have an intracellular nutrient test to discover that. Low magnesium can cause your problems
plkelly
06-09-2004, 10:33 AM
Thanks for the info--the guy in the health food store told me the same thing yesterday. I take Neurontin and I noticed you can't take magnesium with that unless you wait at least 2 hours between. But I did get a couple things that I started taking yesterday--and one has magnesium in it. Plus the multi-vitamin I take has quite a bit. We'll see if this extra helps. Wouldn't that be wonderful?
Patsy
Patsy
texashowdee
06-09-2004, 09:42 PM
:wave: Hi, well I am going through a simular possible diagnosis. The doctor thinks I have Trigiminal Neuralgia and TMJ but we are not sure. I am currently on Neurontin 600mg four times a day for the Neuralgia and also take Elavil 25mg twice a day or can be taken only at night as I need it. We are also looking at Atipical facial Pain if the TMJ does not pan out. I am in the mist of going to all kinds of doctors and treatments to try to help the pain. Hang in there for me soft food or almost blended foods are what I eat to give the Jaw a rest. He also put me on Celebrex for the possible TMj. The celebrex has helped the most with the pain as it have helped as an anti-inflammatory. I am not sure if you said you were taking this or not. It helped some immediatly and is helping long term while we search for the cause of the pain. There may never be a cause we know of for sure but we keep searching or we accept and go on. Right now I am searching for a cause and for the best treatment. We will see as time goes by what it turns out to be. I am also using warm moist soaks to face and jaw. Good luck Dee
texashowdee
06-09-2004, 09:45 PM
:wave: Hi, well I am going through a simular possible diagnosis. The doctor thinks I have Trigiminal Neuralgia and TMJ but we are not sure. I am currently on Neurontin 600mg four times a day for the Neuralgia and also take Elavil 25mg twice a day or can be taken only at night as I need it. We are also looking at Atipical facial Pain if the TMJ does not pan out. I am in the mist of going to all kinds of doctors and treatments to try to help the pain. Hang in there for me soft food or almost blended foods are what I eat to give the Jaw a rest. He also put me on Celebrex for the possible TMj. The celebrex has helped the most with the pain as it have helped as an anti-inflammatory. I am not sure if you said you were taking this or not. It helped some immediatly and is helping long term while we search for the cause of the pain. There may never be a cause we know of for sure but we keep searching or we accept and go on. Right now I am searching for a cause and for the best treatment. We will see as time goes by what it turns out to be. I am also using warm moist soaks to face and jaw. Good luck Dee
plkelly
06-10-2004, 05:59 PM
Howdy, Dee! (I couldn't resist that)
I'm having a bummer day today. Yesterday was like that, too. Saw the ortho and he is so nice, and was very concerned. He's a kind man, but didn't get me any quick answers. He was at least able to find that the pain is not from my joint--at least that's OK. Suggested moist warmth compresses and a muscle relaxer, and as you said, soft food, etc. I started the muscle relaxer last night--Flexeril, I think it's called. Today I took it and I have no energy and am so sleepy.
My problem right now is that this has hit me so hard this time that I can't bear to sip anything, let alone eat. Wearing my rose colored glasses, I made myself an omelette last night--it was a no-go and I had to divide it between the dogs. My doc is switching me off Tegretol and on to Neurontin, and I think maybe the Neurontin is not going to work for me. But the thing that really gets to me is that I've never had the pain like this--and it's constant, unless I sit very still and hold my mouth in a relaxed position. Once I try to talk, or anything, that electric stab goes off in my face. I've always had pain free periods after a bad pain. An was always able to talk and drink.
Hope tomorrow's better. And hope you're doing OK, too! I may ask about the Celebrex--right now I'm just taking ibuprofen for the inflammation. I hate to take all these meds! But if I have to take them, I wish they would at least prescribe enough to be effective.
Patsy
I'm having a bummer day today. Yesterday was like that, too. Saw the ortho and he is so nice, and was very concerned. He's a kind man, but didn't get me any quick answers. He was at least able to find that the pain is not from my joint--at least that's OK. Suggested moist warmth compresses and a muscle relaxer, and as you said, soft food, etc. I started the muscle relaxer last night--Flexeril, I think it's called. Today I took it and I have no energy and am so sleepy.
My problem right now is that this has hit me so hard this time that I can't bear to sip anything, let alone eat. Wearing my rose colored glasses, I made myself an omelette last night--it was a no-go and I had to divide it between the dogs. My doc is switching me off Tegretol and on to Neurontin, and I think maybe the Neurontin is not going to work for me. But the thing that really gets to me is that I've never had the pain like this--and it's constant, unless I sit very still and hold my mouth in a relaxed position. Once I try to talk, or anything, that electric stab goes off in my face. I've always had pain free periods after a bad pain. An was always able to talk and drink.
Hope tomorrow's better. And hope you're doing OK, too! I may ask about the Celebrex--right now I'm just taking ibuprofen for the inflammation. I hate to take all these meds! But if I have to take them, I wish they would at least prescribe enough to be effective.
Patsy
Ann123
06-10-2004, 08:12 PM
Hi Patsy,
Hmm so your pain is worse in the morning. Mine is best in the morning gets worse as the days goes on and I chew, talk ,etc. Sleeping with my splint at night usually calms everything down. Could morning pain mean that you are clenching? Can you wear a splint of any sort with braces on? You know a lot of people with TN have constant pain at times during really bad flare ups.
Can you ask your doctor to try Trileptal? This is supposed to be very effective. If Tegretol worked for you, Trileptal probably will. It is what is usually prescribed when Tegretol has lost effectiveness, not Neurontin. I just don't think Neurontin is going to be enough for you. I visit a lot of TN boards that's where I hear all of this stuff.
Get your blender out - stat! you need to start getting some nutritious food in you that you can drink. I remember when my flare up was really bad I used to drink Weider protein shakes. They are good. Do you have a Panera Bread by you? Get some of that yummy soup and blend it even more. Ice cream, pudding. Forget about chewing til your feel better. Chewing is obviously your triggering pain for whatever reason, muscular or TN.
I am German too - is that what causes the stoicism about the pain. I don't talk about it either. (except on the internet to strangers, lol). It is an embarassing kind of pain, isn't it, cuz people don't understand it and I always think they think it's in my head.
How much longer do you have to wear the braces?
I don't know about the physiatrist- I am going to research that a bit. I don't want it to be just a pain clinic type thing. Have you considered a neurologist? - they don't underprescribe and they do know about the newer treatments like Trileptal and Topamax.
I read your post to Dee, I'm sorry you can't even eat an omelette, I could usually do that. Geez. I hope you feel better soon.
Take care,
Ann
Hmm so your pain is worse in the morning. Mine is best in the morning gets worse as the days goes on and I chew, talk ,etc. Sleeping with my splint at night usually calms everything down. Could morning pain mean that you are clenching? Can you wear a splint of any sort with braces on? You know a lot of people with TN have constant pain at times during really bad flare ups.
Can you ask your doctor to try Trileptal? This is supposed to be very effective. If Tegretol worked for you, Trileptal probably will. It is what is usually prescribed when Tegretol has lost effectiveness, not Neurontin. I just don't think Neurontin is going to be enough for you. I visit a lot of TN boards that's where I hear all of this stuff.
Get your blender out - stat! you need to start getting some nutritious food in you that you can drink. I remember when my flare up was really bad I used to drink Weider protein shakes. They are good. Do you have a Panera Bread by you? Get some of that yummy soup and blend it even more. Ice cream, pudding. Forget about chewing til your feel better. Chewing is obviously your triggering pain for whatever reason, muscular or TN.
I am German too - is that what causes the stoicism about the pain. I don't talk about it either. (except on the internet to strangers, lol). It is an embarassing kind of pain, isn't it, cuz people don't understand it and I always think they think it's in my head.
How much longer do you have to wear the braces?
I don't know about the physiatrist- I am going to research that a bit. I don't want it to be just a pain clinic type thing. Have you considered a neurologist? - they don't underprescribe and they do know about the newer treatments like Trileptal and Topamax.
I read your post to Dee, I'm sorry you can't even eat an omelette, I could usually do that. Geez. I hope you feel better soon.
Take care,
Ann
texashowdee
06-10-2004, 08:20 PM
:wave: Hang in there. I just found out today that my MRI was good of the jaw even though my doctor says it has to be TMJ.Next week I am going to see a Maxio-facial surgeon and a eye ear and nose doc. I also am having a croatid doppler done and then back to my family doc. I am in the same boat as you except the celebrex has the pain almost gone now so we know there was inflamation in that area or it would not have worked so well. I hurt for two weeks before I went to the doctor thinking it would go away. I am an RN so knew the ropes and did not want to over react to the new pain on the right side. My dentest has said I probably had TMJ two years ago so I just felt it was that. I put myself on soft or blended food due to pain. I went to the doc on the third week and that is when the celebrex was started. It took a week to get rid of the pain but now I am much improved. My family doc wants to know what it was for sure so he is sending me to all the doctors and dentists and doing tests. He will not stop till he knows what happened so I guess that is good.
The neurontin is very hard to get used to but is wonderul if you can last out the side affects. It helps my Tn and ATn on my left side and help back pain and SI pain as well. It has been a miracle drug for me. My doctor warned me I would be dopey and tired and I was all of that. it took me three to four days to be clean headed and then he would increase the dosage and I would start over with the symptoms but we final leveled off on doasge and I am fine. I am not tired or dopey and feel much better. I know it is hard to withstand the medication but it will pay of it you can tolerate it now. Only you know what you are willing to endure for pain relief. I did better since my doc let me know in advance it was a rough one to get use too.
Since you have TN, is this pain on the same side as the TN and could it be some form of this that is worse right now, or is it on a differnt side such as mine is. HOw long have you had TN? How long have you had this kind of pain? I am going on the fourth week and now have to re-think what is the matter since the TMJ MRI turrned out ok.
Have you had an MRI on this? I cant remember it you told us this or not. We are here to talk if you need us. Be sure to let us know how things are going. I am as curious of your diagnosis as you are for mine. Our pain sure sounds the same. I do know that a muscle relaxant is the drug of choice. My doc ordered celebrex instead due to so much tenderness in my face, neck jaw, and upper and lower teeth. If you do some reading on TMJ they will tell you your doc did the right thing and the warms soaks are also correct. Let me know how things are going if you are able to write some more. Dee
The neurontin is very hard to get used to but is wonderul if you can last out the side affects. It helps my Tn and ATn on my left side and help back pain and SI pain as well. It has been a miracle drug for me. My doctor warned me I would be dopey and tired and I was all of that. it took me three to four days to be clean headed and then he would increase the dosage and I would start over with the symptoms but we final leveled off on doasge and I am fine. I am not tired or dopey and feel much better. I know it is hard to withstand the medication but it will pay of it you can tolerate it now. Only you know what you are willing to endure for pain relief. I did better since my doc let me know in advance it was a rough one to get use too.
Since you have TN, is this pain on the same side as the TN and could it be some form of this that is worse right now, or is it on a differnt side such as mine is. HOw long have you had TN? How long have you had this kind of pain? I am going on the fourth week and now have to re-think what is the matter since the TMJ MRI turrned out ok.
Have you had an MRI on this? I cant remember it you told us this or not. We are here to talk if you need us. Be sure to let us know how things are going. I am as curious of your diagnosis as you are for mine. Our pain sure sounds the same. I do know that a muscle relaxant is the drug of choice. My doc ordered celebrex instead due to so much tenderness in my face, neck jaw, and upper and lower teeth. If you do some reading on TMJ they will tell you your doc did the right thing and the warms soaks are also correct. Let me know how things are going if you are able to write some more. Dee
Ann123
06-10-2004, 09:40 PM
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Hi Dee, sorry for you that you find yourself here but welcome. I have been visiting these boards for over a year and never found anyone whose doctors thought both TMJ and TN and now suddenly here you's are. Well I don't feel like such a freak of nature now anyway. You have given some good advice for dealing with the pain. I have never been on Celebrex either but I was prescribed Aleve to stop inflammation. It helped but I had to stop due to stomach bleeding. Does Celebrex have that same effect as Aleve does?
I take Neurontin as well and would like to ask my doctor about the Celebrex as it seems to have worked so well for you. I know I have inflammation going on. Ultrasound PT helped a lot with the neck and shoulders but the jaw still feels inflamed. Isn't it possible to have TMJ and still have it not show up on an MRI? Like the muscular kind? I read that on the TMJ board; but I don't know if it is true or not. Do you clench or grind your teeth? I do and I know that is a big factor here. It sounds like you have a doctor who is going to really search for you, that is wonderful. I hope he finds the cause and do please come back and share whatever you find out. Take care, Ann
Hi Dee, sorry for you that you find yourself here but welcome. I have been visiting these boards for over a year and never found anyone whose doctors thought both TMJ and TN and now suddenly here you's are. Well I don't feel like such a freak of nature now anyway. You have given some good advice for dealing with the pain. I have never been on Celebrex either but I was prescribed Aleve to stop inflammation. It helped but I had to stop due to stomach bleeding. Does Celebrex have that same effect as Aleve does?
I take Neurontin as well and would like to ask my doctor about the Celebrex as it seems to have worked so well for you. I know I have inflammation going on. Ultrasound PT helped a lot with the neck and shoulders but the jaw still feels inflamed. Isn't it possible to have TMJ and still have it not show up on an MRI? Like the muscular kind? I read that on the TMJ board; but I don't know if it is true or not. Do you clench or grind your teeth? I do and I know that is a big factor here. It sounds like you have a doctor who is going to really search for you, that is wonderful. I hope he finds the cause and do please come back and share whatever you find out. Take care, Ann
texashowdee
06-10-2004, 10:49 PM
:wave: Yes, you can have both and also can have TMJ not show up on an MRI. My doc reminded me of that fact but I already knew that one too. I guess what my family doc is trying to do is rule out all other things next and also my insurance with not pay for tretment of TMJ as they feel this is only a symptom and not the root cause of the problem so it is better if they call it Atipical Facial Pain. I do not mind if they call the pain this as it helps me via the insurance.
My doc still feels it is TMJ as I have the classic symptoms for it and all the symptoms of it. The reason they are doing the croatid doppler tests is because of the area of pain down my neck is on top of the croaitd artery. He just wants to make sure we don't have two things going on here.
The celebrex is supposed to help for those who are sinsitive to asprin but it can cause stomach problems too. I find I can take this for a few weeks or a month and then have to get off it. What I do is take it till it starts to causing indigestion and bruning in the stomach. At the first signs of this occuring, I stop the medication and let my stomach rest. I have been taking celebrex for my back for several years off and on as needed. I had been off the drug when the Jaw pain started.
I went to the family doc first as I thought I had a ear infection. In fact I went twice to see if that was what was wrong. I finally confessed to the my doctor what was going on. I guess I just did not want a TMJ diagnosis or any other type of facial pain on the Trigiminal nerve.
I have had ATN and TN since I was in my 20's due to a fall while roller skating.I tucked and landing on my face right where this jaw is that is now hruting. I did this to avoid hitting my child who had scooted in front of me on purpose to make me fall. He did this because he had kept falling and I kept saying get back up and all will be fine. I had not fallen and he wanted to see how mommy looked when she feel. He did not think it would hurt me since his falls had not hurt him. He also did not know the danger he was in when he did this. I did what I had to do to keep from hurting him. I went up in the air and then landed right on the eye and jaw are of the right side. Since the nerves in the brain are crossed.... that is why my tn is on the left side.... and continous ATN too!
Hang in there....and keep eating the soft foods....and also check into the celebrex.. even if you can take if for a short time it may be enough time to cure you....the muscle relaxant should also help to relax that jaw or muscles around the jaw so you will start to feel better too. Dee
My doc still feels it is TMJ as I have the classic symptoms for it and all the symptoms of it. The reason they are doing the croatid doppler tests is because of the area of pain down my neck is on top of the croaitd artery. He just wants to make sure we don't have two things going on here.
The celebrex is supposed to help for those who are sinsitive to asprin but it can cause stomach problems too. I find I can take this for a few weeks or a month and then have to get off it. What I do is take it till it starts to causing indigestion and bruning in the stomach. At the first signs of this occuring, I stop the medication and let my stomach rest. I have been taking celebrex for my back for several years off and on as needed. I had been off the drug when the Jaw pain started.
I went to the family doc first as I thought I had a ear infection. In fact I went twice to see if that was what was wrong. I finally confessed to the my doctor what was going on. I guess I just did not want a TMJ diagnosis or any other type of facial pain on the Trigiminal nerve.
I have had ATN and TN since I was in my 20's due to a fall while roller skating.I tucked and landing on my face right where this jaw is that is now hruting. I did this to avoid hitting my child who had scooted in front of me on purpose to make me fall. He did this because he had kept falling and I kept saying get back up and all will be fine. I had not fallen and he wanted to see how mommy looked when she feel. He did not think it would hurt me since his falls had not hurt him. He also did not know the danger he was in when he did this. I did what I had to do to keep from hurting him. I went up in the air and then landed right on the eye and jaw are of the right side. Since the nerves in the brain are crossed.... that is why my tn is on the left side.... and continous ATN too!
Hang in there....and keep eating the soft foods....and also check into the celebrex.. even if you can take if for a short time it may be enough time to cure you....the muscle relaxant should also help to relax that jaw or muscles around the jaw so you will start to feel better too. Dee
plkelly
06-11-2004, 03:37 PM
Dee and Ann--
Hi there, fellow survivors. Had a really bad couple of days, but today is a little better. Here's what I did differently.
1. Moist compresses
2. Ibuprofen every four hours for inflammation
3. Ignored the doctors little schedule she had given me for going down on the Tegretol while I ramped up on the Neurontin. I was supposed to be only taking one Tegretol a day this week, and I realized yesterday (duh!) that the only time I had been able to even move was after I took the Tegretol. I don't think the Neurontin works so me, even though I had no symptoms besides a little dizziness as I increased. So I went back to Tegretol exclusively. I hate to take it, but it seems to be the only thing that works for me, so far.
4. Switched my orthopedic pillow over so the small curve is under my neck rather than the big one. Woke up this morning and laid very still and had no pain, turned my head one way and then the other, no pain. Yesterday I laid there on my back and felt the pain travel along the nerve by degrees.
5. Took a muscle relaxant before bed.
Dee, my pain is always on one side--the left--and is in varying degrees. Or will be set off by something different. But it is always the same sort of pain--that feeling like someone pokes a lighted 4th of July sparkler right in the joint. Or an electric needle. Some docs say TMJ, some say TN, some say both. But considering that I was totally pain free for 9 months after starting with this ortho to correct my bite, I think he's on the right trail. I pray he is.I went to him because I heard he was so great treating facial pain--he has a 90-95% success rate!
Still have pain today, but I was able to eat (I was so hungry!) Cream of Wheat for breakfast, and just had a cheese omelette for lunch. Still touchy when I chew, but I can at least get it done, and also drink without that spasm going off.
How are both of you doing? My hope is that one day we'll be doing so well we won't have to visit the health boards, or at least only to try and help others get through this.
Patsy
Hi there, fellow survivors. Had a really bad couple of days, but today is a little better. Here's what I did differently.
1. Moist compresses
2. Ibuprofen every four hours for inflammation
3. Ignored the doctors little schedule she had given me for going down on the Tegretol while I ramped up on the Neurontin. I was supposed to be only taking one Tegretol a day this week, and I realized yesterday (duh!) that the only time I had been able to even move was after I took the Tegretol. I don't think the Neurontin works so me, even though I had no symptoms besides a little dizziness as I increased. So I went back to Tegretol exclusively. I hate to take it, but it seems to be the only thing that works for me, so far.
4. Switched my orthopedic pillow over so the small curve is under my neck rather than the big one. Woke up this morning and laid very still and had no pain, turned my head one way and then the other, no pain. Yesterday I laid there on my back and felt the pain travel along the nerve by degrees.
5. Took a muscle relaxant before bed.
Dee, my pain is always on one side--the left--and is in varying degrees. Or will be set off by something different. But it is always the same sort of pain--that feeling like someone pokes a lighted 4th of July sparkler right in the joint. Or an electric needle. Some docs say TMJ, some say TN, some say both. But considering that I was totally pain free for 9 months after starting with this ortho to correct my bite, I think he's on the right trail. I pray he is.I went to him because I heard he was so great treating facial pain--he has a 90-95% success rate!
Still have pain today, but I was able to eat (I was so hungry!) Cream of Wheat for breakfast, and just had a cheese omelette for lunch. Still touchy when I chew, but I can at least get it done, and also drink without that spasm going off.
How are both of you doing? My hope is that one day we'll be doing so well we won't have to visit the health boards, or at least only to try and help others get through this.
Patsy
plkelly
06-11-2004, 07:16 PM
Forgot this! Dee, since your 20's? How old are you now, if I can ask. I've had it going on 10 years--since a badly placed crown, that I don't even believe I needed in hindsight. (Ann, didn't you say yours also started after dental work?)
My doctor then was also a close personal friend--makes a huge difference in care, too. He has since retired, even though I told him he couldn't. I had two MRI's, sinus's x-rayed, and an ENT did a test to rule out a tumor at the base of my skull. My ortho wants to do another MRI if this isn't better soon--but it is so improved today. I was worried about the braces being a wrong move for me, but he feels that I would have had trouble long before now with them if they are the cause. He's sure that most of my problem is from my bad bite--within two months of wearing the splint 24/7, I was totally pain free. And we waited another month or two after that before beginning the braces.
What dosage of Neurontin do you take? I feel my regular doc is so conservative on the meds, I know we're going to have a little back and forth on this when I see her next.
Patsy
My doctor then was also a close personal friend--makes a huge difference in care, too. He has since retired, even though I told him he couldn't. I had two MRI's, sinus's x-rayed, and an ENT did a test to rule out a tumor at the base of my skull. My ortho wants to do another MRI if this isn't better soon--but it is so improved today. I was worried about the braces being a wrong move for me, but he feels that I would have had trouble long before now with them if they are the cause. He's sure that most of my problem is from my bad bite--within two months of wearing the splint 24/7, I was totally pain free. And we waited another month or two after that before beginning the braces.
What dosage of Neurontin do you take? I feel my regular doc is so conservative on the meds, I know we're going to have a little back and forth on this when I see her next.
Patsy
texashowdee
06-11-2004, 09:02 PM
:wave: Hi this is Dee. I am 56. the tn started when I was 23 so I have had this mess on the left side for 33 years now. I took only elavil for the TN and ATN on the left side caused by the fall to the right side of my face. I have never had pain on the right side fo the face or jaw until a month ago. I just assumed it was TMJ or Atipical Facial Pain. I was leaning more for TmJ but nos sure what is going of for sure since the MRI was fine. I have been on Neurontin for 18mos. It was stareted for the back and SI joint pain and was wonderful. I still have pain but it is much improved. It also helped the TN and ATN on the left side.
I have a friend here who also have TN and Atn and has just been diagnosed with TMJ so it can happen. She goes on and off Neurontin due to low tolerace of the drug and it not now working long term for her. What is the good thing is that we are all very aware of our condition and we seek treatment and advice and are active in what works for us. Having a doctor that works with us and is also willing to adjust as things change, is a wonderful thing. It sound like you are in the phase of getting better and I am so happy for you. The right side of my face and jaw are so much better and like you am just now able to start eating food again. I am doing this slowly so as not to start things up again.
I do not know if we will know what is actually wrong or not but I am seeking the answers as we speak. I just am gald you are better and taking control of what works and what does not for you. It feels so much better when we are coming out from under the pain cycle. Good luck with your journey and I will give you and udate as I have one and I hope you will do the same also. Dee :)
I have a friend here who also have TN and Atn and has just been diagnosed with TMJ so it can happen. She goes on and off Neurontin due to low tolerace of the drug and it not now working long term for her. What is the good thing is that we are all very aware of our condition and we seek treatment and advice and are active in what works for us. Having a doctor that works with us and is also willing to adjust as things change, is a wonderful thing. It sound like you are in the phase of getting better and I am so happy for you. The right side of my face and jaw are so much better and like you am just now able to start eating food again. I am doing this slowly so as not to start things up again.
I do not know if we will know what is actually wrong or not but I am seeking the answers as we speak. I just am gald you are better and taking control of what works and what does not for you. It feels so much better when we are coming out from under the pain cycle. Good luck with your journey and I will give you and udate as I have one and I hope you will do the same also. Dee :)
Ann123
06-12-2004, 10:52 AM
Hi Dee, Patsy,
So Dee, you are 56, that is a long time; Patsy how old are you? you say your pain kind of came and went though? Yes Patsy mine pain came after a crown. A few months after the crown I got a root canal on the same tooth. I don't know if it is a badly placed crown or an injectional injury cuz I had the electric shock pain when getting the shots for the root canal. The thing is when they do a root canal after a crown is already placed they grind the crown even more. I bet that threw my bite off. How to fix it though? A prosthedontist, maybe. I proscrastinate on that cuz I read horror stories on the net, but then I need to realize the net is where people write their bad experiences. It sure doesn't sound like either one of your problems corrected themselves which is what I have been hoping for. I feel more determined now to get to the root of this. Which I still think is the crown creating my bite to be bad. Man , I hate to think I have to go and get a splint and braces though. And to find a reputable doctor to do that -yikes. And of course, insurance probably doesn't cover a dime of it. Patsy, what type of splint did you wear? Dee, you are not wearing any splint at all for your tmj, correct? is your friend? you really have me thinking, you know. thanks for sharing your stories. Dee, that is a very sad one about your fall.
Hope today is another better day for you both. Patsy, I think I ran into your brother at the grocery store today - he looks just like you!
Ann
So Dee, you are 56, that is a long time; Patsy how old are you? you say your pain kind of came and went though? Yes Patsy mine pain came after a crown. A few months after the crown I got a root canal on the same tooth. I don't know if it is a badly placed crown or an injectional injury cuz I had the electric shock pain when getting the shots for the root canal. The thing is when they do a root canal after a crown is already placed they grind the crown even more. I bet that threw my bite off. How to fix it though? A prosthedontist, maybe. I proscrastinate on that cuz I read horror stories on the net, but then I need to realize the net is where people write their bad experiences. It sure doesn't sound like either one of your problems corrected themselves which is what I have been hoping for. I feel more determined now to get to the root of this. Which I still think is the crown creating my bite to be bad. Man , I hate to think I have to go and get a splint and braces though. And to find a reputable doctor to do that -yikes. And of course, insurance probably doesn't cover a dime of it. Patsy, what type of splint did you wear? Dee, you are not wearing any splint at all for your tmj, correct? is your friend? you really have me thinking, you know. thanks for sharing your stories. Dee, that is a very sad one about your fall.
Hope today is another better day for you both. Patsy, I think I ran into your brother at the grocery store today - he looks just like you!
Ann
plkelly
06-12-2004, 12:03 PM
LOL--That was funny, Ann!
Thanks to both of you for writing. I am 57--an odd age to be in braces, but what the heck! I am not sure what the splint I got is called, but I can tell you what it does. It only allowed my teeth to meet at one point on back each side, not at all in front,and I wore it 24/7, even to eat, for over 6 months. What is does is allow all those tight muscles to relax and let your jaw get in the position it is comfortable in. Of course, he did all sorts of x-rays, etc., before starting. It was difficult to eat at first--you have to take very small bites and can't eat nuts, etc. (basically those things we can't eat anyway.). I didn't want to give it up when it came time, but when I was totally pain free I got my top braces in September, then they placed the bottom ones in January. When the braces come off I'll wear retainers full time for awhile, then go into wearing them only at night--and for someone who clenches he can build a bite guard into the retainer. He told me clenchers will always clench--there's really not a way to turn it off.
If you can find someone as good as he is, I would recommend it--I really do think the pain I've been having lately is temporary, as he says. Or because of that new pillow I got thinking it would be good for me! Or all the tension in my life during the past year--I tend to internalize. Or my neck, which goes out. Anyway, a fluke. But he has been involved in lots of facial pain organizations, etc., and if you'd like me to ask for the name of someone in the Chicago area, I'd be glad to.
And of course, you're right--insurance won't cover a nickel of the expense. His office offers a good finance company that specializes in medical stuff, and I went that route. I'm sure costs vary, but he charged around $5000.
Hope you're both having good days. And Dee, I should explain our little joke. I found out Ann was in the Chicago area and said my brother was in Hinsdale, and she said her neurologist was in Hinsdale and wouldn't it be weird if that was him. Of course, he's not her doctor, but we keep making jokes about it. Gotta laugh!
Patsy
Thanks to both of you for writing. I am 57--an odd age to be in braces, but what the heck! I am not sure what the splint I got is called, but I can tell you what it does. It only allowed my teeth to meet at one point on back each side, not at all in front,and I wore it 24/7, even to eat, for over 6 months. What is does is allow all those tight muscles to relax and let your jaw get in the position it is comfortable in. Of course, he did all sorts of x-rays, etc., before starting. It was difficult to eat at first--you have to take very small bites and can't eat nuts, etc. (basically those things we can't eat anyway.). I didn't want to give it up when it came time, but when I was totally pain free I got my top braces in September, then they placed the bottom ones in January. When the braces come off I'll wear retainers full time for awhile, then go into wearing them only at night--and for someone who clenches he can build a bite guard into the retainer. He told me clenchers will always clench--there's really not a way to turn it off.
If you can find someone as good as he is, I would recommend it--I really do think the pain I've been having lately is temporary, as he says. Or because of that new pillow I got thinking it would be good for me! Or all the tension in my life during the past year--I tend to internalize. Or my neck, which goes out. Anyway, a fluke. But he has been involved in lots of facial pain organizations, etc., and if you'd like me to ask for the name of someone in the Chicago area, I'd be glad to.
And of course, you're right--insurance won't cover a nickel of the expense. His office offers a good finance company that specializes in medical stuff, and I went that route. I'm sure costs vary, but he charged around $5000.
Hope you're both having good days. And Dee, I should explain our little joke. I found out Ann was in the Chicago area and said my brother was in Hinsdale, and she said her neurologist was in Hinsdale and wouldn't it be weird if that was him. Of course, he's not her doctor, but we keep making jokes about it. Gotta laugh!
Patsy
Ann123
06-12-2004, 05:26 PM
Hi Patsy,
Thanks for the detailed reply.
One more ? - did you ever get that crown removed?
btw, I hated the orthopedic pillow I bought too. Think it made my neck pain worse. It wasn't the $100 version though. I went back to a real flat pillow.
If your doctor happens to know someone in the southwest suburbs, that'd be great - Naperville, Hinsdale, OakBrook. Not too keen on trekking thru Chicago traffic, though I've heard there are some good docs there.
Thanks for all your help, hope you are still feeling better. I have a md appt. Mon, neurologist Wed. and dentist Thurs. so we'll see if anyone has anything new to say. Probably not. I do wear an upper splint now when I sleep, it was designed by my oral surgeon and my dentist adjusts it. This is my fourth splint actually. It is helping better than the others. They put these things on it so that when I grind I don't hit my molars. Trouble is I still clench on it. But I wake up with much less pain. But the pain comes back during the day so I don't know if I should be wearing something all the time. I did try one like that but it was not the right one for me I don't think. Made things worse.
I wore braces when I was younger but I have gaps developing on one side between my teeth so my bite is shifting. Didn't keep up with the retainer thing. Young and stupid. btw, I am 46.
talk to you later, Ann
Thanks for the detailed reply.
One more ? - did you ever get that crown removed?
btw, I hated the orthopedic pillow I bought too. Think it made my neck pain worse. It wasn't the $100 version though. I went back to a real flat pillow.
If your doctor happens to know someone in the southwest suburbs, that'd be great - Naperville, Hinsdale, OakBrook. Not too keen on trekking thru Chicago traffic, though I've heard there are some good docs there.
Thanks for all your help, hope you are still feeling better. I have a md appt. Mon, neurologist Wed. and dentist Thurs. so we'll see if anyone has anything new to say. Probably not. I do wear an upper splint now when I sleep, it was designed by my oral surgeon and my dentist adjusts it. This is my fourth splint actually. It is helping better than the others. They put these things on it so that when I grind I don't hit my molars. Trouble is I still clench on it. But I wake up with much less pain. But the pain comes back during the day so I don't know if I should be wearing something all the time. I did try one like that but it was not the right one for me I don't think. Made things worse.
I wore braces when I was younger but I have gaps developing on one side between my teeth so my bite is shifting. Didn't keep up with the retainer thing. Young and stupid. btw, I am 46.
talk to you later, Ann
plkelly
06-12-2004, 07:44 PM
That tooth was finally removed a few years ago. It became loose from all the pressure I was putting on it and started causing me other problems. My regular dentist--who knows something about TMJ, but doesn't specialize in it--finally removed it when it got infected and we couldn't get it cleared up. After I get my braces off I'm supposed to have an implant there, and have a crown on a front tooth replaced. I've never had a good bite since I was a kid, and all the dental work has not helped. My ortho said that I had compensated over the years, but the last crown I had was just too much--
I just searched through my papers to find his credentials and can't find them. I'll come across him soon. But I know he has to have contacts from all the organizations listed. The person who recommended him to me only told me that he had helped a lot of people with facial pain--I didn't even realize he did orthodontia work until I went to him. The neat thing is that everyone who works in the Springfield office was previously a patient. One woman there came to him after getting braces for cosmetic reasons from a different ortho. Within a few days her jaw locked shut and was that way for 10 days. She could only eat by threading a straw through her front teeth. He had to remove the braces she had just gotten and start her on a different therapy. They all have stories like that.
I'm good again today, a little pain this morning but the Tegretol is taking care of it. I wonder sometimes if I don't just have a severe muscle spasm that bothers that nerve. It's all a mystery to me, and I can't believe I messed myself up so badly with that dumb pillow. Mine isn't the expensive one either, I may switch to a flat one, but now I've spooked myself about switching again.
I just saw Dr. Moshiri last week and won't see him again until July. He's only here one week out of the month; his main practice is in St. Louis. He does have someone who answers the phone full time, so I can call her about an ortho in your area.
How are you doing? Are you able to eat?
I just searched through my papers to find his credentials and can't find them. I'll come across him soon. But I know he has to have contacts from all the organizations listed. The person who recommended him to me only told me that he had helped a lot of people with facial pain--I didn't even realize he did orthodontia work until I went to him. The neat thing is that everyone who works in the Springfield office was previously a patient. One woman there came to him after getting braces for cosmetic reasons from a different ortho. Within a few days her jaw locked shut and was that way for 10 days. She could only eat by threading a straw through her front teeth. He had to remove the braces she had just gotten and start her on a different therapy. They all have stories like that.
I'm good again today, a little pain this morning but the Tegretol is taking care of it. I wonder sometimes if I don't just have a severe muscle spasm that bothers that nerve. It's all a mystery to me, and I can't believe I messed myself up so badly with that dumb pillow. Mine isn't the expensive one either, I may switch to a flat one, but now I've spooked myself about switching again.
I just saw Dr. Moshiri last week and won't see him again until July. He's only here one week out of the month; his main practice is in St. Louis. He does have someone who answers the phone full time, so I can call her about an ortho in your area.
How are you doing? Are you able to eat?
Ann123
06-13-2004, 10:36 AM
Hi Patsy,
Thanks so much, but no big hurry. I can wait until July. I am not in horrible pain right now; the meds work fairly well, I just don't want to be on them forever. I don't plan to do anything big until the summer is over though unless my condition changes a I am first trying to enjoy summer as much as possible - I have three children at home, two home just for the summer from college. Right now yes, I can eat most soft food and I don't just mean pudding. Just not steak or chips, stuff like that. The pain is there but not excruciating and I have learned to live with it. Some days are better than others. The main thing is that I think the meds are just a temp solution and eventually I need to think about the long term fix to my bite and I am looking for the best doctor to give my oodles of money to.
You know what, if the pillow you have is working I wouldn't change a thing.
If you have a lot of neck and shoulder pain, have you tried PT? 9 sessions of that really helped me and it was not painful - it was ultrasound deep tissue massage, followed by manual massage. Then they taught me stretching exercises for at home. Insurance did cover that. (with the diagnosis of cervical strain). I lucked out and had a therapist who had TMJ herself before and she was very helpful.
Hope you are still feeling better today. This week I see the md on Monday,
the neuro on Wed, and the dentist on Thur. We'll see if they have any pearls of wisdom for me. Probably not, I'm sure. here's your med refill, here's your splint adjustment, oh your 15 minutes are up- see you next time.
Such is how it is in busy Chicagoland.
Take care,
Ann
Thanks so much, but no big hurry. I can wait until July. I am not in horrible pain right now; the meds work fairly well, I just don't want to be on them forever. I don't plan to do anything big until the summer is over though unless my condition changes a I am first trying to enjoy summer as much as possible - I have three children at home, two home just for the summer from college. Right now yes, I can eat most soft food and I don't just mean pudding. Just not steak or chips, stuff like that. The pain is there but not excruciating and I have learned to live with it. Some days are better than others. The main thing is that I think the meds are just a temp solution and eventually I need to think about the long term fix to my bite and I am looking for the best doctor to give my oodles of money to.
You know what, if the pillow you have is working I wouldn't change a thing.
If you have a lot of neck and shoulder pain, have you tried PT? 9 sessions of that really helped me and it was not painful - it was ultrasound deep tissue massage, followed by manual massage. Then they taught me stretching exercises for at home. Insurance did cover that. (with the diagnosis of cervical strain). I lucked out and had a therapist who had TMJ herself before and she was very helpful.
Hope you are still feeling better today. This week I see the md on Monday,
the neuro on Wed, and the dentist on Thur. We'll see if they have any pearls of wisdom for me. Probably not, I'm sure. here's your med refill, here's your splint adjustment, oh your 15 minutes are up- see you next time.
Such is how it is in busy Chicagoland.
Take care,
Ann
plkelly
06-13-2004, 04:49 PM
Hi Ann! I don't blaming you for just enjoying this summer with your kids. Summer is my favorite time of year. I grow lots of flowers and usually have my two grandsons come to visit a couple times. They stay a few days and are so funny and sweet. And of course, my son is here for awhile when we brings them and picks them up. They don't live far--Kansas City area--but now that the older one has started school we don't get to see them as much. They lived here when I quit work and I kept the boys a couple days a week so I really miss them. My daughter was here for a weekend before she went off to work in NY at a summer camp for abused kids. Then she'll be back in OK--don't see her often enough, either. So take advantage of the time with them, even with all the additional mess, etc., because soon they'll be out of on their own.
Did you like the physiatrist you saw? Do they include PT as part of their practice? I don't have lots of neck or shoulder pain; it's all in my face. Get it just now and then. I thought I'd ask my doctor to refer me when I see her next time. She'd also has had TMJ and sleeps with a night guard. She told me they wanted her to go into braces, but she was in residency at the time and just didn't think she could handle it. She always heard that if you have the right doctor it helps, but sometimes it gets worse before it gets better. My ortho indicated the same thing, but I think he was concerned at the level of pain I was having last time I saw him.
What kind of splint do you have? Do you wear it 24/7?
Have fun at all your doc's appts. next week, and let me know what they say. I really would like to be off all these meds, too--and was for the 9 months after I started treatment, so I hope this is just a temporary 'adjustment' period. It's better now. I had macaroni and cheese for lunch with some tomatoes. Beats all those smoothies--I had gotten sick of them.
Have a good week with your kids!
Patsy
Did you like the physiatrist you saw? Do they include PT as part of their practice? I don't have lots of neck or shoulder pain; it's all in my face. Get it just now and then. I thought I'd ask my doctor to refer me when I see her next time. She'd also has had TMJ and sleeps with a night guard. She told me they wanted her to go into braces, but she was in residency at the time and just didn't think she could handle it. She always heard that if you have the right doctor it helps, but sometimes it gets worse before it gets better. My ortho indicated the same thing, but I think he was concerned at the level of pain I was having last time I saw him.
What kind of splint do you have? Do you wear it 24/7?
Have fun at all your doc's appts. next week, and let me know what they say. I really would like to be off all these meds, too--and was for the 9 months after I started treatment, so I hope this is just a temporary 'adjustment' period. It's better now. I had macaroni and cheese for lunch with some tomatoes. Beats all those smoothies--I had gotten sick of them.
Have a good week with your kids!
Patsy
Ann123
06-20-2004, 10:24 PM
Hi Patsy,
Yes you are right, there is additional mess around here - but people tell me all the time and I am well aware these years are becoming numbered so oh wel. Everyone helps pick up the messes so it all works out.
No I haven't seen the physiatrist, I just read over his pamphlet and it looked interesting. But I have not acted on it. They evaluate you and if they thought you needed PT they would refer you. But if your pain is all in your face I don't know. They never touched my face when I was in PT.
My splint is nighttime only. Sometimes I wear it during the day at home.
It is an upper which is designed so that when I grind I do not touch the back molars as the "TN" pain is in the 3rd division of the nerve and the molars act as a trigger. I get a lot of pain in my molars on one side. Had one extracted but that did not help so am reluctant to do anything about the other though the dentist has suggested replacing the filling. I've tried a 24/7 lower neuromuscular splint with no luck. Also a basic nightguard with no luck there either. This splint helps some. (I think?)
My doctors appts were boring. Nothing interesting. The one was just to get results of a complete physical and blood work for my work. Everything came back fine. The dentist just adjusted the splint in two seconds said all looked good and suggested that filling replacement and I said I'd think on it. The neuro appt. was rescheduled by them due to something or other for a couple weeks.
Are you still feeling better? I hope so.
Take care,
Ann
Yes you are right, there is additional mess around here - but people tell me all the time and I am well aware these years are becoming numbered so oh wel. Everyone helps pick up the messes so it all works out.
No I haven't seen the physiatrist, I just read over his pamphlet and it looked interesting. But I have not acted on it. They evaluate you and if they thought you needed PT they would refer you. But if your pain is all in your face I don't know. They never touched my face when I was in PT.
My splint is nighttime only. Sometimes I wear it during the day at home.
It is an upper which is designed so that when I grind I do not touch the back molars as the "TN" pain is in the 3rd division of the nerve and the molars act as a trigger. I get a lot of pain in my molars on one side. Had one extracted but that did not help so am reluctant to do anything about the other though the dentist has suggested replacing the filling. I've tried a 24/7 lower neuromuscular splint with no luck. Also a basic nightguard with no luck there either. This splint helps some. (I think?)
My doctors appts were boring. Nothing interesting. The one was just to get results of a complete physical and blood work for my work. Everything came back fine. The dentist just adjusted the splint in two seconds said all looked good and suggested that filling replacement and I said I'd think on it. The neuro appt. was rescheduled by them due to something or other for a couple weeks.
Are you still feeling better? I hope so.
Take care,
Ann
plkelly
06-29-2004, 06:30 PM
Hi Ann--
Hope you're still doing better. I just got back from spending several relaxing days visiting my brother--not in Chicago, but at his vacation spot in WI. Beautiful--and I didn't have any problems and in fact, was doing OK a couple days before we left.
I got home Sunday and am still doing fine--a little pain in the mornings and sometimes when I brush my teeth. But compared to a few weeks ago, doing great.
Keep your fingers crossed for me and I'll do the same for you!
Patsy
Hope you're still doing better. I just got back from spending several relaxing days visiting my brother--not in Chicago, but at his vacation spot in WI. Beautiful--and I didn't have any problems and in fact, was doing OK a couple days before we left.
I got home Sunday and am still doing fine--a little pain in the mornings and sometimes when I brush my teeth. But compared to a few weeks ago, doing great.
Keep your fingers crossed for me and I'll do the same for you!
Patsy
Ann123
07-05-2004, 11:31 AM
Hi Ann--
Hope you're still doing better. I just got back from spending several relaxing days visiting my brother--not in Chicago, but at his vacation spot in WI. Beautiful--and I didn't have any problems and in fact, was doing OK a couple days before we left.
I got home Sunday and am still doing fine--a little pain in the mornings and sometimes when I brush my teeth. But compared to a few weeks ago, doing great.
Keep your fingers crossed for me and I'll do the same for you!
Patsy
Hi Patsy,
I am so glad you are feeling better. And had such a wonderful vacation.
Your treatment continues to intrigue me although I have not yet convinced a doctor that tmj treatment would help my tn. I will give it sometime but am going to remember this for a long time. Thank you for sharing this story.
Keep me posted. I am doing okay, the latest experiment per neuro's orders has actually been to remove the splint so we can see the impact that has on my pain. This is because the splint is showing no signs of new grinding marks.
No new pain, no worse pain, so we shall see. It has only been about a week.\
Hope you had a good 4th and enjoyed some of the good food!
Take care,
Ann
Hope you're still doing better. I just got back from spending several relaxing days visiting my brother--not in Chicago, but at his vacation spot in WI. Beautiful--and I didn't have any problems and in fact, was doing OK a couple days before we left.
I got home Sunday and am still doing fine--a little pain in the mornings and sometimes when I brush my teeth. But compared to a few weeks ago, doing great.
Keep your fingers crossed for me and I'll do the same for you!
Patsy
Hi Patsy,
I am so glad you are feeling better. And had such a wonderful vacation.
Your treatment continues to intrigue me although I have not yet convinced a doctor that tmj treatment would help my tn. I will give it sometime but am going to remember this for a long time. Thank you for sharing this story.
Keep me posted. I am doing okay, the latest experiment per neuro's orders has actually been to remove the splint so we can see the impact that has on my pain. This is because the splint is showing no signs of new grinding marks.
No new pain, no worse pain, so we shall see. It has only been about a week.\
Hope you had a good 4th and enjoyed some of the good food!
Take care,
Ann
Ann123
07-05-2004, 11:36 AM
Hi Ann--
Hope you're still doing better. I just got back from spending several relaxing days visiting my brother--not in Chicago, but at his vacation spot in WI. Beautiful--and I didn't have any problems and in fact, was doing OK a couple days before we left.
I got home Sunday and am still doing fine--a little pain in the mornings and sometimes when I brush my teeth. But compared to a few weeks ago, doing great.
Keep your fingers crossed for me and I'll do the same for you!
Patsy
Hi Patsy,
I am glad you are feeling better and had such a nice vacation. I am planning a week at a cabin with my sister's family in a couple weeks, can't wait to relax as well.
Your treatment continues to intrigue me though I've yet to get a doctor to agree that aggressive tmj treatment is the answer to my tn pain. I will give it some time but I will definitely remember this story if my pain continues as yours did. I appreciate you sharing it on the internet, keep us posted.
My neuro's latest orders were to remove my splint altogether and see what impact that will have. This is because there have been no new grinding/clenching marks on it and he believes that night-time habit may have stopped. it has been a week. I do not feel any worse for having removed it yet though I was quite scared to do so and you begin to feel dependent on the splint. My flare-up has ended also and am going through an okay spell-the brushing teeth is still hard, like you said.
I hope you had a good 4th and were able to enjoy some of the good food!
Take care,
Ann
Hope you're still doing better. I just got back from spending several relaxing days visiting my brother--not in Chicago, but at his vacation spot in WI. Beautiful--and I didn't have any problems and in fact, was doing OK a couple days before we left.
I got home Sunday and am still doing fine--a little pain in the mornings and sometimes when I brush my teeth. But compared to a few weeks ago, doing great.
Keep your fingers crossed for me and I'll do the same for you!
Patsy
Hi Patsy,
I am glad you are feeling better and had such a nice vacation. I am planning a week at a cabin with my sister's family in a couple weeks, can't wait to relax as well.
Your treatment continues to intrigue me though I've yet to get a doctor to agree that aggressive tmj treatment is the answer to my tn pain. I will give it some time but I will definitely remember this story if my pain continues as yours did. I appreciate you sharing it on the internet, keep us posted.
My neuro's latest orders were to remove my splint altogether and see what impact that will have. This is because there have been no new grinding/clenching marks on it and he believes that night-time habit may have stopped. it has been a week. I do not feel any worse for having removed it yet though I was quite scared to do so and you begin to feel dependent on the splint. My flare-up has ended also and am going through an okay spell-the brushing teeth is still hard, like you said.
I hope you had a good 4th and were able to enjoy some of the good food!
Take care,
Ann
trucky
01-03-2005, 08:54 PM
This has got to be one of the most bothersome, irritating conditions! so many parts to it. Here's the deal with me:
My bite is mainly around the front teeth, upper and lower. Which means jaw strain and no chewing solid food.
My tongue pushes thru these teeth cause ther's no where else for it to go.
my tongue doesn't center back where it's supposed to, back where i swallow.
My front upper teeth are moving forward and down, and my tongue just seems to grow forward.
My left side of my face is more developed than the right, and i have facial parasthesia on the left. the left jaw pushes into my ear, and aches constantly.
i constantly have left sinus blockage and my nose is drifting left.
My left ear gets red and swells to twice the size of my right ear.
The worst is my eyelids and eyebrows have severe painful pins&needles and I hate it!
When i get over this latest horrible, debilitating sinus infection, I'm going to my new dentist and request a major overhaul. I'm going to set up a team of dentist, neurologist and ENT doctor. i'm going to demand answers and solutions.
In the past I had braces in high school and they commented on my left jaw asymmetry. since then, dentists just ignore it. Well, not any more.
2 years ago, I had nasal-turbinade surgery, and even though I can breathe and smell, so what? The only fear is that i have acromegaly--a subtle condition that can start in your 40s where a benign tumor in the pituitary gland causes bones to grow more in the face, hands, and feet. I don't care if the docs laugh (its rare disease)! I'm going to demand a test!
Anyone else have any or all of these symptoms? It's affecting my balance, chewing, swallowing, and vision! Grrrr!
My bite is mainly around the front teeth, upper and lower. Which means jaw strain and no chewing solid food.
My tongue pushes thru these teeth cause ther's no where else for it to go.
my tongue doesn't center back where it's supposed to, back where i swallow.
My front upper teeth are moving forward and down, and my tongue just seems to grow forward.
My left side of my face is more developed than the right, and i have facial parasthesia on the left. the left jaw pushes into my ear, and aches constantly.
i constantly have left sinus blockage and my nose is drifting left.
My left ear gets red and swells to twice the size of my right ear.
The worst is my eyelids and eyebrows have severe painful pins&needles and I hate it!
When i get over this latest horrible, debilitating sinus infection, I'm going to my new dentist and request a major overhaul. I'm going to set up a team of dentist, neurologist and ENT doctor. i'm going to demand answers and solutions.
In the past I had braces in high school and they commented on my left jaw asymmetry. since then, dentists just ignore it. Well, not any more.
2 years ago, I had nasal-turbinade surgery, and even though I can breathe and smell, so what? The only fear is that i have acromegaly--a subtle condition that can start in your 40s where a benign tumor in the pituitary gland causes bones to grow more in the face, hands, and feet. I don't care if the docs laugh (its rare disease)! I'm going to demand a test!
Anyone else have any or all of these symptoms? It's affecting my balance, chewing, swallowing, and vision! Grrrr!