Kortney
01-11-2003, 02:45 PM
I'm looking to hear from all of you on this...I don't know where to start, where to go from here. I am in pain 24/7. It never stops. What used to wax/wane in intensity is now constantly with me. Most days it feels like my head is going thru a meat grinder and I just puke for days. Sorry to be so graphic on that.
It's all right sided pain. Never really on the left.
Somedays it's a dull crushing pain, others it's lancing and sharp, sometimes it's throbbing but it's always with me. Some days it's just a vague feeling of a pulling/spasm/numbness. But it's always there. Just wears a different face every single day.
I feel it in front of my right ear, behind the ear, back of my head and in my face.
My last set of xrays weren't great. My left TMJ sits in place like it's supposed to, nothing grossly abnormal. The right, that sucker is not even close to being in place. There is some good interspace but it's not in there at all. It is my right side that is so painful and where my symptoms are the worst.
Without the upper right molars, everything is off.
When I close my mouth or try and find my bite here is what happens:
my bottom teeth go behind the front ones in some places and the rest is all open bite with some cross bite tossed in. Basically, my bite is non existant. Period.
My last splint was much more than a mouthfull. It covered my top teeth and was painful to wear. It made me clench and grind my teeth even worse.
I do ice packs, heat, massage, I don't eat hard or crunchy food. I chop everything up and can only chew on my left side. I sleep propped up or on my back.
I'm doing everything I know to do and yet, nothing seems to work.
I have to get relief somehow. The pressure is just intense.
What's best? What helps the most?
Where is a good place to start and is there anything I should be doing that I'm not?
I can't function like this.
My internist said I have bad depression. I said well duh..doc, I'm in pain all the time and they can't *fix* it.
Any words of wisdom for me on this?
It's all right sided pain. Never really on the left.
Somedays it's a dull crushing pain, others it's lancing and sharp, sometimes it's throbbing but it's always with me. Some days it's just a vague feeling of a pulling/spasm/numbness. But it's always there. Just wears a different face every single day.
I feel it in front of my right ear, behind the ear, back of my head and in my face.
My last set of xrays weren't great. My left TMJ sits in place like it's supposed to, nothing grossly abnormal. The right, that sucker is not even close to being in place. There is some good interspace but it's not in there at all. It is my right side that is so painful and where my symptoms are the worst.
Without the upper right molars, everything is off.
When I close my mouth or try and find my bite here is what happens:
my bottom teeth go behind the front ones in some places and the rest is all open bite with some cross bite tossed in. Basically, my bite is non existant. Period.
My last splint was much more than a mouthfull. It covered my top teeth and was painful to wear. It made me clench and grind my teeth even worse.
I do ice packs, heat, massage, I don't eat hard or crunchy food. I chop everything up and can only chew on my left side. I sleep propped up or on my back.
I'm doing everything I know to do and yet, nothing seems to work.
I have to get relief somehow. The pressure is just intense.
What's best? What helps the most?
Where is a good place to start and is there anything I should be doing that I'm not?
I can't function like this.
My internist said I have bad depression. I said well duh..doc, I'm in pain all the time and they can't *fix* it.
Any words of wisdom for me on this?
Sponsor
mirn
01-11-2003, 03:32 PM
Kortney,
Sorry to hear about your pain, but I can really relate because I think I might be experiencing the same thing just on my left side. I have a few questions for you. Is your right ear also more sensitive? For me, my bad ear is much more sensitive to pretty much everything. Cold air, warm air, wind, touch etc. The pain seems to also increase after exercising. Also, do you think your condition resulted from an injury. I was a high school wrestler for 4 years and also received a hard blow to that ear. I had some infection on the outside (pina) of it , but treating it with a dermatologist doesn't decrease the pain. A plastic surgeon told me that steroid injections into the ear can decrease the pain, but he thought it was just a skin condition which I don't know if it is anymore. The skin used to be and still is a little flaky. I just started reading this forum today so I better read more and find out more, but your condition sounds so similar that I wanted to reply and hear of any other symptoms you might be experiencing. I also hear occasional popping that seems to be external. Anyways, the pain is also with me 24/7 and it's really hard to fall asleep; I have to sleep on the back of my head or on my better ear and it has made be depressed as well. I had this condition for over a year but the pain seems to be just going up.
Sorry to hear about your pain, but I can really relate because I think I might be experiencing the same thing just on my left side. I have a few questions for you. Is your right ear also more sensitive? For me, my bad ear is much more sensitive to pretty much everything. Cold air, warm air, wind, touch etc. The pain seems to also increase after exercising. Also, do you think your condition resulted from an injury. I was a high school wrestler for 4 years and also received a hard blow to that ear. I had some infection on the outside (pina) of it , but treating it with a dermatologist doesn't decrease the pain. A plastic surgeon told me that steroid injections into the ear can decrease the pain, but he thought it was just a skin condition which I don't know if it is anymore. The skin used to be and still is a little flaky. I just started reading this forum today so I better read more and find out more, but your condition sounds so similar that I wanted to reply and hear of any other symptoms you might be experiencing. I also hear occasional popping that seems to be external. Anyways, the pain is also with me 24/7 and it's really hard to fall asleep; I have to sleep on the back of my head or on my better ear and it has made be depressed as well. I had this condition for over a year but the pain seems to be just going up.
J-man
01-11-2003, 03:54 PM
Hi Kortney,
I am very sorry to hear about the pain you're going through. I was wondering, have you tried much in the way of medication to try to control the pain ? You mentioned your bite being off by a lot, do you find that chewing food, even fairly soft foods makes things worse ? If so, does this seem to relate at all to some of your teeth contacting hard with one another ? Lastly, have you ever tried a tens machine at all to try to help with the pain ?
I'll prayer for you about this. Take care and God bless,
John
I am very sorry to hear about the pain you're going through. I was wondering, have you tried much in the way of medication to try to control the pain ? You mentioned your bite being off by a lot, do you find that chewing food, even fairly soft foods makes things worse ? If so, does this seem to relate at all to some of your teeth contacting hard with one another ? Lastly, have you ever tried a tens machine at all to try to help with the pain ?
I'll prayer for you about this. Take care and God bless,
John
Kortney
01-11-2003, 04:01 PM
mirn,
Yes, my right ear symptoms are pretty bad but I'm always sensitive to loud noises. Cold wind on that ear is bad for me. Heat isn't too bad. Just the cold. My pain rarely ever crosses to the left side.
I do have some bilateral spasms in front of the joints but the right side is by far the worst of it all. The only time the left side really hurts is when I manage to hit on 2 upper left molars and make them ache. That's when it gets bad on that side.
Yes, mine is a direct result of an injury. A bad car accident many years ago. I was hit basically head on at 50 mph but the right side of my body took the full impact and my seatbelt snapped, air bag failed to come out and my face/head went into my steering wheel. I remember being thrown forwards, then snapped back.
Not long after that did my pain set in fast and furious. My upper right teeth began to just ache non stop, I had severe headaches that wouldn't respond to anything. Not demerol. Not even Talwin and that's a potent narcotic for pain. I would just lay on the couch and cry because it would hurt so bad.
I went from dds to dds and finally one of them sent me to an endodontist. He discovered those teeth were all fractured. We tried RCT but they abcessed one by one and then I had them all pulled one by one.
I hated to do that because I had beautiful teeth. I never wore braces, they were straight, etc. Had a beautiful smile. I hated the pain even more though than I did to lose the teeth.
So, we pulled them. The pain eased up having them out.
I never had them replaced. I was out of money, didn't have insurance and was too ignorant to realize I could have forced insurance to cover the cost.
Over the years my bite went from a little off from extractions to what it is now. Non existant.
I had occasional pain from it and began grinding my teeth at night. Then my ear pain began. For awhile it would all sort of wax and wane but would ease up after a couple of days of NSAID's, soft, soft diet, and ice packs.
Right before thanksgiving of this year it came back. It was a searing pain in my right lower jaw that radiated everywhere. It hasn't stopped since that day. Before that began I was getting some muscle spasms in my jaw, bad ones. Jaw jerk type spasms and severe pressure type headache.
I went to bed on a Saturday night and on a sunday morning it all blew up on me. It hasn't changed since or stopped.
I've lost 15 pounds I didn't need to lose. I can't eat very much. I don't sleep well if at all. The little bit of sleep I do get is a deep medicated sleep. I am on Neurontin for pain. It does help with the migraines and nerve related type pain but when it kicks in at night it knocks me out hard. It has some unpleasant side effects for me personally when I go above a certain doseage. Right now I can tolerate the side effects at 900 mg's. Higher than that and I'm dumber than a box of rocks. And I get ataxia meaning I walk like a drunk. So I'm better off at this dose.
3 oral surgeons wanted to operate. I said no way. Finally got to another OS who said he would never operate on TMJ's unless he's called to the ER to see someone with a badly broken jaw, etc. We know my right joint is displaced. It's obvious on all the xrays, etc. But he said surgery will only make me worse in the long run and he doesn't want to do that to me.
I appreciated his honesty. How to fix this is anyone's guess at this point.
Splints just haven't helped me at all unless I'm in the wrong type of splint.
Years ago we tried soft splints over my bottom teeth, didn't work. Tried soft ones over the top, I shredded that in a week from grinding.
The last one was hard acrylic but was painful and made me worse.
I can tell you this though, stick around here long enough and you will learn more than you can imagine.
Yes, my right ear symptoms are pretty bad but I'm always sensitive to loud noises. Cold wind on that ear is bad for me. Heat isn't too bad. Just the cold. My pain rarely ever crosses to the left side.
I do have some bilateral spasms in front of the joints but the right side is by far the worst of it all. The only time the left side really hurts is when I manage to hit on 2 upper left molars and make them ache. That's when it gets bad on that side.
Yes, mine is a direct result of an injury. A bad car accident many years ago. I was hit basically head on at 50 mph but the right side of my body took the full impact and my seatbelt snapped, air bag failed to come out and my face/head went into my steering wheel. I remember being thrown forwards, then snapped back.
Not long after that did my pain set in fast and furious. My upper right teeth began to just ache non stop, I had severe headaches that wouldn't respond to anything. Not demerol. Not even Talwin and that's a potent narcotic for pain. I would just lay on the couch and cry because it would hurt so bad.
I went from dds to dds and finally one of them sent me to an endodontist. He discovered those teeth were all fractured. We tried RCT but they abcessed one by one and then I had them all pulled one by one.
I hated to do that because I had beautiful teeth. I never wore braces, they were straight, etc. Had a beautiful smile. I hated the pain even more though than I did to lose the teeth.
So, we pulled them. The pain eased up having them out.
I never had them replaced. I was out of money, didn't have insurance and was too ignorant to realize I could have forced insurance to cover the cost.
Over the years my bite went from a little off from extractions to what it is now. Non existant.
I had occasional pain from it and began grinding my teeth at night. Then my ear pain began. For awhile it would all sort of wax and wane but would ease up after a couple of days of NSAID's, soft, soft diet, and ice packs.
Right before thanksgiving of this year it came back. It was a searing pain in my right lower jaw that radiated everywhere. It hasn't stopped since that day. Before that began I was getting some muscle spasms in my jaw, bad ones. Jaw jerk type spasms and severe pressure type headache.
I went to bed on a Saturday night and on a sunday morning it all blew up on me. It hasn't changed since or stopped.
I've lost 15 pounds I didn't need to lose. I can't eat very much. I don't sleep well if at all. The little bit of sleep I do get is a deep medicated sleep. I am on Neurontin for pain. It does help with the migraines and nerve related type pain but when it kicks in at night it knocks me out hard. It has some unpleasant side effects for me personally when I go above a certain doseage. Right now I can tolerate the side effects at 900 mg's. Higher than that and I'm dumber than a box of rocks. And I get ataxia meaning I walk like a drunk. So I'm better off at this dose.
3 oral surgeons wanted to operate. I said no way. Finally got to another OS who said he would never operate on TMJ's unless he's called to the ER to see someone with a badly broken jaw, etc. We know my right joint is displaced. It's obvious on all the xrays, etc. But he said surgery will only make me worse in the long run and he doesn't want to do that to me.
I appreciated his honesty. How to fix this is anyone's guess at this point.
Splints just haven't helped me at all unless I'm in the wrong type of splint.
Years ago we tried soft splints over my bottom teeth, didn't work. Tried soft ones over the top, I shredded that in a week from grinding.
The last one was hard acrylic but was painful and made me worse.
I can tell you this though, stick around here long enough and you will learn more than you can imagine.
Jill J
01-11-2003, 07:52 PM
Kortney,
All of mine is loctaed on the right side also, my spasms happen in my temple area. I have a medium splint....not hard, not soft......but I can only wear it every other night because when I do wear it I chew it. My orthodontist gave me 5 mgs of valium for bedtime so that doesn't happen. The problem is it knocks me on my butt and I can't do that with being a single mom of an 8 yr old boy. I only take the valium when it gets really bad. I also spend at least 20 mins a night on a heating pad and see a chiropractor 3 times a week. This may help you. They open up the nerve supply to all of the nerves that feed into the TMJ. Just make sure you see one that knows about TMJ. I am in the process of making an appointment with accupuncture.....will let you know how it turns out. My ortho also suggested Aleve instead of motrin or tylenol as Aleve has naproxin in it and it lasts longer......wish I could help you more.....Jill
All of mine is loctaed on the right side also, my spasms happen in my temple area. I have a medium splint....not hard, not soft......but I can only wear it every other night because when I do wear it I chew it. My orthodontist gave me 5 mgs of valium for bedtime so that doesn't happen. The problem is it knocks me on my butt and I can't do that with being a single mom of an 8 yr old boy. I only take the valium when it gets really bad. I also spend at least 20 mins a night on a heating pad and see a chiropractor 3 times a week. This may help you. They open up the nerve supply to all of the nerves that feed into the TMJ. Just make sure you see one that knows about TMJ. I am in the process of making an appointment with accupuncture.....will let you know how it turns out. My ortho also suggested Aleve instead of motrin or tylenol as Aleve has naproxin in it and it lasts longer......wish I could help you more.....Jill
thisstarr
01-12-2003, 02:35 AM
Hi,
I am so sorry your in so much pain, I am right there with you, I suffer 24-7 with my tmj symptoms also.
I how you feel, you feel so alone, and wondering why the hell is this happing to you. How it is not fair to be in this much freaken pain and you feel like your going to go crazy.
I wish people would understand how it is to have chronic pain all the time! I relieze how many things I took for granted before, like, eating, talking, laughing, singing, kissing. I know it is hard, I get so sick almost everyday throwing up and being nasusaed so bad I curl up in a ball. It is hard to deal with all of this, so if you break down and cry it is ok...All I can say is I am here for you and stay strong and just take one day at a time.
I have pain on both sides but my left side is worse, my jaw pops to the left when I open my mouth. My ear pain is on my left side.
Take care,
Starr
[This message has been edited by thisstarr (edited 01-12-2003).]
I am so sorry your in so much pain, I am right there with you, I suffer 24-7 with my tmj symptoms also.
I how you feel, you feel so alone, and wondering why the hell is this happing to you. How it is not fair to be in this much freaken pain and you feel like your going to go crazy.
I wish people would understand how it is to have chronic pain all the time! I relieze how many things I took for granted before, like, eating, talking, laughing, singing, kissing. I know it is hard, I get so sick almost everyday throwing up and being nasusaed so bad I curl up in a ball. It is hard to deal with all of this, so if you break down and cry it is ok...All I can say is I am here for you and stay strong and just take one day at a time.
I have pain on both sides but my left side is worse, my jaw pops to the left when I open my mouth. My ear pain is on my left side.
Take care,
Starr
[This message has been edited by thisstarr (edited 01-12-2003).]