eskimolala
04-12-2008, 11:11 AM
Hi, im new to this site and need some answers/support.
Im 18 years old, female. Since June 2007 i have been suffering from daily headaches (top of head, forehead, temples, shooting pains) jaw ache, ear pain, eye pain, sore throat, slight numbness on side of face, chest pressure. I wake up with a forehead headache, my jaw is stiff and difficult to open, and my jaw deviates to the side when i open it wide. The headaches goes away but returns in the evening. I have been to see numerous doctors (around 10) a neurologist (who diagnosed chronic tension headaches), 2 dentists, 5 opticians, and been to the Emergency Room twice with no avail. I was given amitriptyline which i took throughout february, there wasnt much change but apparently they take 4-12 weeks to work. However i had to discontinue becuase of pregnancy which i had a termination a week ago.
However, I am back on amitriptyline (since 2 days ago) but yesterday i got a really bad headache (pressure in forehead, top of head and temples) i had a pressure feeling in both my ears which i havent had before, a really sore jaw (like a deep ache). Paracetamol doesnt seem to help. I opened my jaw earlier today and there was a really loud crack on the right side, louder than usual :dizzy: I also developed a burning sensation on my tongue a week ago. So me being me i got really paranoid and went to the Emergency Room, they did some checks (pulse, listening to my lungs and heart, made me walk and checked my eyes) and said basically stop worrying and gave me Ibuprofen for the pain. The pain seems to be worse when im lying down.
Ok so i know my post is long but im really scared :( i didnt get an mri or ct scan becaue the neurologist + doctors have said there is nothing that warrants the need for that. I do grind my teeth at night, and i have an uneven bite ( when i put my front teeth together, the back teeth dont touch and vice versa) and also if i close my right top and bottom teeth together , the left side doesnt close together. I have "buck teeth" which i have braces to correct. So throughout the day i position my jaw forwards so my teeth dont stick out which my ortho said would strain the jaw but i feel as though right now i have never felt this bad. I havent had the ear pressure in both ears before and i was awake all night worrying about going to sleep incase i died. I live in the UK and there is not much talk about TMJ disorders, no doctor has ever connected it to my jaw ache etc. I came across it because i tend to search every syptom on the internet. Im just wondering if anyone has had these problems with diagnosis, and if your pain differs from day to day. Right now i havent felt this ill in a while. I really just want to lay in bed all day and wait till i get better but im scared i dont :confused:
Please help :(
P.S. has anyone experienced on/off chest pressure with tmj? ive been reading about it and some say yes and some say no? ive had my pulse checked and ive had those sticky pads on my chest that monitor heart rate and oxygen levels in the blood and also my blood pressure checked and everything is fine. my doctor says its anxiety but i get it when im not anxious :confused: ive heard of "referred" pain etc but im still really scared!! thanks for the help.
Im 18 years old, female. Since June 2007 i have been suffering from daily headaches (top of head, forehead, temples, shooting pains) jaw ache, ear pain, eye pain, sore throat, slight numbness on side of face, chest pressure. I wake up with a forehead headache, my jaw is stiff and difficult to open, and my jaw deviates to the side when i open it wide. The headaches goes away but returns in the evening. I have been to see numerous doctors (around 10) a neurologist (who diagnosed chronic tension headaches), 2 dentists, 5 opticians, and been to the Emergency Room twice with no avail. I was given amitriptyline which i took throughout february, there wasnt much change but apparently they take 4-12 weeks to work. However i had to discontinue becuase of pregnancy which i had a termination a week ago.
However, I am back on amitriptyline (since 2 days ago) but yesterday i got a really bad headache (pressure in forehead, top of head and temples) i had a pressure feeling in both my ears which i havent had before, a really sore jaw (like a deep ache). Paracetamol doesnt seem to help. I opened my jaw earlier today and there was a really loud crack on the right side, louder than usual :dizzy: I also developed a burning sensation on my tongue a week ago. So me being me i got really paranoid and went to the Emergency Room, they did some checks (pulse, listening to my lungs and heart, made me walk and checked my eyes) and said basically stop worrying and gave me Ibuprofen for the pain. The pain seems to be worse when im lying down.
Ok so i know my post is long but im really scared :( i didnt get an mri or ct scan becaue the neurologist + doctors have said there is nothing that warrants the need for that. I do grind my teeth at night, and i have an uneven bite ( when i put my front teeth together, the back teeth dont touch and vice versa) and also if i close my right top and bottom teeth together , the left side doesnt close together. I have "buck teeth" which i have braces to correct. So throughout the day i position my jaw forwards so my teeth dont stick out which my ortho said would strain the jaw but i feel as though right now i have never felt this bad. I havent had the ear pressure in both ears before and i was awake all night worrying about going to sleep incase i died. I live in the UK and there is not much talk about TMJ disorders, no doctor has ever connected it to my jaw ache etc. I came across it because i tend to search every syptom on the internet. Im just wondering if anyone has had these problems with diagnosis, and if your pain differs from day to day. Right now i havent felt this ill in a while. I really just want to lay in bed all day and wait till i get better but im scared i dont :confused:
Please help :(
P.S. has anyone experienced on/off chest pressure with tmj? ive been reading about it and some say yes and some say no? ive had my pulse checked and ive had those sticky pads on my chest that monitor heart rate and oxygen levels in the blood and also my blood pressure checked and everything is fine. my doctor says its anxiety but i get it when im not anxious :confused: ive heard of "referred" pain etc but im still really scared!! thanks for the help.
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MissHeadache
04-13-2008, 11:17 AM
I had the same problem trying to get someone in the UK to treat me. Went through the same ridiculous farce that you are going through with neurologists when I knew the problem was related to my jaw. Some days I couldn't get out of bed as my headaches were so bad. In the end I went to a private specialist in London to get diagnosed and treated. It's costing me a lot of money but within 3 months of treatment I now see some relief to my symptoms after over a year of dead ends and no improvement in my pain with the NHS.
eskimolala
04-13-2008, 01:58 PM
Thanks for the reply. Glad to hear you are finally feeling some relief. I read one of your earlier posts, and you said you got an mri, how did that come about? my GP and neurologist both said i show no symptoms that need to be checked by MRI or CT scan, which makes me anxious :confused:
I live in Glasgow, although I wouldnt mind travelling to London, I get free rail travel so i wouldnt have to pay for that, and my boyfriend has a house in camden so accomadation is no problem, but how much is the treatment? how did you get diagnosed?
I am just back from another trip to A&E because of the loud crack i felt in my jaw, and chest pressure. I called NHS24 who said i needed an x-ray of jaw and maybe chest, but the doctors at A&E basically said that its nothing to do with them and go to my dentist. I was so shocked to hear the words "tmj" come from a doctors mouth :eek: (sorry this is so long!) My next dentist appointment is 30th April but im going to phone tomorrow and get something sooner, plus i need to arrange a visit to an ENT (neurologist reccomended this) although the NHS waiting lists are a bit long.
How do you relieve your symptoms? I find ice helps better but paracetamol doesnt work at all, ibuprofen works a little and heat doesnt help at all.
Thanks, xx
I live in Glasgow, although I wouldnt mind travelling to London, I get free rail travel so i wouldnt have to pay for that, and my boyfriend has a house in camden so accomadation is no problem, but how much is the treatment? how did you get diagnosed?
I am just back from another trip to A&E because of the loud crack i felt in my jaw, and chest pressure. I called NHS24 who said i needed an x-ray of jaw and maybe chest, but the doctors at A&E basically said that its nothing to do with them and go to my dentist. I was so shocked to hear the words "tmj" come from a doctors mouth :eek: (sorry this is so long!) My next dentist appointment is 30th April but im going to phone tomorrow and get something sooner, plus i need to arrange a visit to an ENT (neurologist reccomended this) although the NHS waiting lists are a bit long.
How do you relieve your symptoms? I find ice helps better but paracetamol doesnt work at all, ibuprofen works a little and heat doesnt help at all.
Thanks, xx
MissHeadache
04-15-2008, 12:13 PM
I had a private MRI arranged by my private specialist as again the NHS said there was nothing wrong enough to warrant one. Even if I could have had a NHS MRI I would proabaly had to wait up to a year for it.
Initially I kind of self diagnosed myself. I read up about all my symptoms on the web and came up with TMJ. My own dentist had mentioned a "jaw joint problem" in the past but said it was just causing the clicking and not my headaches. He suggested ibuprofen and then heat or ice on the affected area, but to basically shut up and put up. This wasn't good enough for me so after reading up about TMJ on the web I picked a specialist whose website seemed the most informative, called them for a chat, then booked in for an assessment. They were very knowledgeable and confident they could help so I had the MRI the same day and when the results came in I booked my treatment course. Its costing me £950 every 3 months, but this includes as many visits as I want, and I have had 4 different appliances to try also included. The MRI was about £500 and my first consultation around £200. Totally worth it so far though as the last couple of weeks I have felt almost normal again.
To cope with the pain I have had physio on my neck and upper back. I also try to keep a good posture all the time. When I am in bad pain I take a painkiller called Syndol which I buy from Boots. So far it is the only thing that has worked for me (ibuprofen, paracetamol, amytriptyline, heat and ice do not work for me either), but it does make me a bit woozy as it contains codeine. A nice hot bath is also good to relax neck and back muscles which can make tmj headaches worse. Get your boyfriend to give you a shoulder massage in the evenings, mine does and it's really helpful.
I hope that helps you. Let me know how you get on.
Initially I kind of self diagnosed myself. I read up about all my symptoms on the web and came up with TMJ. My own dentist had mentioned a "jaw joint problem" in the past but said it was just causing the clicking and not my headaches. He suggested ibuprofen and then heat or ice on the affected area, but to basically shut up and put up. This wasn't good enough for me so after reading up about TMJ on the web I picked a specialist whose website seemed the most informative, called them for a chat, then booked in for an assessment. They were very knowledgeable and confident they could help so I had the MRI the same day and when the results came in I booked my treatment course. Its costing me £950 every 3 months, but this includes as many visits as I want, and I have had 4 different appliances to try also included. The MRI was about £500 and my first consultation around £200. Totally worth it so far though as the last couple of weeks I have felt almost normal again.
To cope with the pain I have had physio on my neck and upper back. I also try to keep a good posture all the time. When I am in bad pain I take a painkiller called Syndol which I buy from Boots. So far it is the only thing that has worked for me (ibuprofen, paracetamol, amytriptyline, heat and ice do not work for me either), but it does make me a bit woozy as it contains codeine. A nice hot bath is also good to relax neck and back muscles which can make tmj headaches worse. Get your boyfriend to give you a shoulder massage in the evenings, mine does and it's really helpful.
I hope that helps you. Let me know how you get on.
eskimolala
04-15-2008, 02:07 PM
Thanks for the reply again :angel:
I really want an MRI done, or even a CT scan. The excuse they used at the hospital was that , however much they'd like to give me one for piece of mind, they wouldnt want that much "radiation" given to me, although i recently found out that MRI scans dont give off radiation as X-Rays do!!
Im the same with the self-diagnosis. My dentist has also mentioned my jaw position and I was even offered an operation when I was about 14 to correct this, but I refused because I thought I would look horrible with a protudent jaw, little did i know it would lead to this much pain :eek: What is the name of the specialist? I am having trouble finding anyone :( although i have an appointment with a chiropracter on Thursday so im hoping for some kind of result or reassurance from that. That is really expensive but i guess when it comes to relief its worth it. I read one of your posts that mentioned Dr Grossman. Is this who you receive treatment from? I am a student so it might be a little difficult, plus the fact my parents think i am a hypochondriac so it may take more than a little persuading to get them to help. Although the NHS is so ridiculous that £500 is worth it for a piece of mind / a justified diagnosis.
The pain is so bad sometimes which really scares me. Ibuprofen works a tiny tiny bit but may as well do nothing at all. I am allergic to codeine so I cant take that! A nice hot bath does provide relief thankfully :D i have had one professional massage but i guess id need to go regularly to see some improvment. She did say i had really tense neck muscles and told me to do some exercises on my neck and shoulders. Some days the pain is so bad i really do think i wont get through it. This however makes me sound like i have mental health issues which the doctors use to pass ALL my symptoms off as stress. They dont understand the ill health causes the stress, not the other way about! What are your symptoms?
Hope to hear from you again x
I really want an MRI done, or even a CT scan. The excuse they used at the hospital was that , however much they'd like to give me one for piece of mind, they wouldnt want that much "radiation" given to me, although i recently found out that MRI scans dont give off radiation as X-Rays do!!
Im the same with the self-diagnosis. My dentist has also mentioned my jaw position and I was even offered an operation when I was about 14 to correct this, but I refused because I thought I would look horrible with a protudent jaw, little did i know it would lead to this much pain :eek: What is the name of the specialist? I am having trouble finding anyone :( although i have an appointment with a chiropracter on Thursday so im hoping for some kind of result or reassurance from that. That is really expensive but i guess when it comes to relief its worth it. I read one of your posts that mentioned Dr Grossman. Is this who you receive treatment from? I am a student so it might be a little difficult, plus the fact my parents think i am a hypochondriac so it may take more than a little persuading to get them to help. Although the NHS is so ridiculous that £500 is worth it for a piece of mind / a justified diagnosis.
The pain is so bad sometimes which really scares me. Ibuprofen works a tiny tiny bit but may as well do nothing at all. I am allergic to codeine so I cant take that! A nice hot bath does provide relief thankfully :D i have had one professional massage but i guess id need to go regularly to see some improvment. She did say i had really tense neck muscles and told me to do some exercises on my neck and shoulders. Some days the pain is so bad i really do think i wont get through it. This however makes me sound like i have mental health issues which the doctors use to pass ALL my symptoms off as stress. They dont understand the ill health causes the stress, not the other way about! What are your symptoms?
Hope to hear from you again x
MissHeadache
04-16-2008, 04:57 PM
Hi again, sorry for not replying sooner. Yes he is the specialist I'm seeing, so far he has been very helpful and I would recommend him if you can afford it. I read your newest post and like you headaches are my main problem. They occur in my temples, behind and around my eyes and in my temporalis muscles. It feels like a lot of pressure and like my head is in a vice. I also get stiff/sore neck upper back and shoulders and when my head is worse my neck is worse and vice versa. I know what you mean about rebound headaches, that's why I try to only take painkillers whn the pain is so bad I need to stop work and go home.
eskimolala
04-18-2008, 01:18 PM
Thanks for replying. I have made an appointment with him , may 8th. private appointments are always so much sooner! £250 for the consultation, not bad but im not sure if i can afford the £500 MRI :confused: trying to convince my father haha.
My headaches are worse this week, more stress i think, my neck is aching :( its even worse to eat. what treatment are you getting? do you wear a splint? so many questions haha, did you need a referral to go to Dr. Grossman? xx
My headaches are worse this week, more stress i think, my neck is aching :( its even worse to eat. what treatment are you getting? do you wear a splint? so many questions haha, did you need a referral to go to Dr. Grossman? xx
MissHeadache
04-19-2008, 12:41 PM
No I just booked in myself. I am wearing a lower gelb splint and an upper ALF 24/7 including to eat. I have just been given a garcia upper/lower splint to wear at night to try to reduce my clenching. He won't treat you unless you have had an mri to confirm exactly where your discs are - I suppose that is good really! Stress makes me worse too because it makes me tense and clench my jaw more, especially when I'm asleep. I hope he can help you feel better. Good luck for May 8th!
eskimolala
04-20-2008, 03:15 PM
i see i see, and they are helping? ill need to talk to my dad then to make sure. will i definately get an MRI? i hope so :( i really want this dealt with! xx
MissHeadache
04-22-2008, 06:00 PM
It took about 3 months of adjustments and trying different options but I am finally feeling some relief. I can't say I'm cured because I'm not, it takes a long time to fix TMJ, but in the last 3 weeks I have only taken painkillers on 2 occasions so that is something! I hope your dad lets you get the MRI and treatment, I know how it is to suffer for ages and I wouldn't want you to go through that like I did. Let me know how you get on :-)
Rawspice
04-24-2008, 05:17 PM
I'm also from the UK, Hertfordshire. Like you two, I kind of diagonosed myself at first by looking up my symptoms on the internet. I was then diagnosed with TMJ at the hospital after having an x-ray. I was being seen on the NHS for what must have been a few years up until a month ago, I'm not sure what I will do now. At my last appointment a month ago he told me he doesn't want to see me again. The NHS is useless, they don't even seem to know all the symptoms of TMJ.:eek: Like the specalist I was seeing doesn't think that tinnitus is a symptom of tmj. I also asked for an MRI one time but I got the same answer...they didn't think it was needed. I was also put on a low dosage of amytriptyline once ages ago, maybe it made me more relaxed but it didn't help the pain so I stopped taking it. The doctor wanted to put me on a higher dosage of it not long ago but I said no for the moment. I don't like taking drugs all the time and I don't even use basic painkillers now. And yes some doctors do try and pass off your symptoms as stress or anxiety, but like one of you said they don't seem to get that it works both ways...being ill casues anxiety as well.
He won't treat you unless you have had an mri to confirm exactly where your discs are - I suppose that is good really!
Well as long as he isn't just trying to get more money out of patients, then yeah that is good! He must think that an MRI is very important, the total opposite view the NHS have.
He won't treat you unless you have had an mri to confirm exactly where your discs are - I suppose that is good really!
Well as long as he isn't just trying to get more money out of patients, then yeah that is good! He must think that an MRI is very important, the total opposite view the NHS have.
eskimolala
04-27-2008, 03:35 PM
hi! were you diagnosed at an NHS hospital? they wouldnt even give me an x-ray when i was reffered by NHS24 after hearing a really loud crack which was followed by pain in the jaw!
I totally agree with the symptoms thing! my doctor said the jaw pain was from tension headaches, my dentist had a vague idea about TMJ but i dont think he classes it as an acual condition. thats why i was so shocked when an A&E doctor mentioned "TMJ". but they talk about it vaguely , not knowing ive spent hours researching the condition, i feel as though i know more than they do lol.
MRI is the best way to look at your jaw i guess. i went to my dentist and he finally agreed to make me a gum sheild but i wont get it for another 3/4 weeks. Did the amitriptyline help with the headaches? what symptoms were you experiencing with your TMJ?
Thanks. xx
I totally agree with the symptoms thing! my doctor said the jaw pain was from tension headaches, my dentist had a vague idea about TMJ but i dont think he classes it as an acual condition. thats why i was so shocked when an A&E doctor mentioned "TMJ". but they talk about it vaguely , not knowing ive spent hours researching the condition, i feel as though i know more than they do lol.
MRI is the best way to look at your jaw i guess. i went to my dentist and he finally agreed to make me a gum sheild but i wont get it for another 3/4 weeks. Did the amitriptyline help with the headaches? what symptoms were you experiencing with your TMJ?
Thanks. xx
KLPEACH
04-27-2008, 09:55 PM
;)I know you need an MRI how else can they tell what's going on in the jaw joint. I really don't feel that the jaw joint is too much different than the knee joint and the hip joint. Except you medical insurance pays for them and not the jaw joint unless you have surgery....No help with orthotic or splint theraphy. or maybe some insurance does....but haven't heard of it.
After years of Botox injections for pain I had my dislocated joint fixed by a prostodontist and my insurance would not pay for it. Even though I quit taken the botox injections which cost $3200 every three months for 8 shots just to control my facial pain. When the jaw dislocation was fixed because they could not do it surgically I still can't chew anything have to eat soft food or flare-up eight days of viccodin and motrin alternating.
I needed the orthonatic surgery to widen my upper palate while my braces were on and the HMO KAISER denied it. So I ended up like this.... We had to pay almost $11,000 out of our own pocket.
Kathy
California
After years of Botox injections for pain I had my dislocated joint fixed by a prostodontist and my insurance would not pay for it. Even though I quit taken the botox injections which cost $3200 every three months for 8 shots just to control my facial pain. When the jaw dislocation was fixed because they could not do it surgically I still can't chew anything have to eat soft food or flare-up eight days of viccodin and motrin alternating.
I needed the orthonatic surgery to widen my upper palate while my braces were on and the HMO KAISER denied it. So I ended up like this.... We had to pay almost $11,000 out of our own pocket.
Kathy
California
Rawspice
04-29-2008, 05:59 PM
hi! were you diagnosed at an NHS hospital? they wouldnt even give me an x-ray when i was reffered by NHS24 after hearing a really loud crack which was followed by pain in the jaw!
I totally agree with the symptoms thing! my doctor said the jaw pain was from tension headaches, my dentist had a vague idea about TMJ but i dont think he classes it as an acual condition. thats why i was so shocked when an A&E doctor mentioned "TMJ". but they talk about it vaguely , not knowing ive spent hours researching the condition, i feel as though i know more than they do lol.
MRI is the best way to look at your jaw i guess. i went to my dentist and he finally agreed to make me a gum sheild but i wont get it for another 3/4 weeks. Did the amitriptyline help with the headaches? what symptoms were you experiencing with your TMJ?
Thanks. xx
Hi! Yes I was diagnosed at an NHS hospital in Hertfordshire. I went to the doctors first and told him I think I have TMJ, he didn't think so but he reffered me to the hospital to find out...and I was right! I thought the help I was getting wasn't good, it seems you two girls got even less help. After I was diagnosed I would just have an appointment every few months, sometimes six months. You don't get much time at the appointments, but I had a few x-rays over the time they were seeing me. I have problems with nasal obstruction as well, the tmj specialist said he doesn't want to see me anymore unless my nasal problems are sorted. Not that it's much of a loss, he was useless anyway.lol I used to disagree with him a lot as well...I don't think he liked me much.:D Did you hear the crack in your jaw when opening and closing?
I was also told I had tension headaces at first! I used to go along with whatever they told me, I had to do my own investigating on the net. That is what I'm always saying! I always tell people I feel I know more about it than the doctors do, I go to an appointment and I end up teaching them.lol
Yeah, which is why I want one. Well fingers crossed the mouthguard will help you! I've had two mouthguards in the past, I thought the first one helped me a bit at first....I had less pain. I think it started to cause pain in my teeth after a while though. Then I had some wisdom teeth taken out so I had to get a new mouthguard. But I stopped using it because it felt to tight and I had some tooth pain again. Make sure you clean your mouthguard well, my first one got a bit gross.lol Well I couldn't have thought the amitriptyline was helping much otherwise I wouldn't have stopped taking it, but my sister thought I seemed a bit happier while on it.lol Maybe I should try a higher dose but I don't like taking drugs when it's just something to mask the pain, I want a proper cure. I get a lot of pain in my left side of my jaw but the right side is fine. I get pain in my head, shoulder, neck and I also get tinnitus, all my symptoms are down the left side. I even get pain in my lower back now but the symptoms change from day to day. Sometimes now I find it hard to say certain words. Are you still in a lot of pain now? You are not in pain all day right?
I totally agree with the symptoms thing! my doctor said the jaw pain was from tension headaches, my dentist had a vague idea about TMJ but i dont think he classes it as an acual condition. thats why i was so shocked when an A&E doctor mentioned "TMJ". but they talk about it vaguely , not knowing ive spent hours researching the condition, i feel as though i know more than they do lol.
MRI is the best way to look at your jaw i guess. i went to my dentist and he finally agreed to make me a gum sheild but i wont get it for another 3/4 weeks. Did the amitriptyline help with the headaches? what symptoms were you experiencing with your TMJ?
Thanks. xx
Hi! Yes I was diagnosed at an NHS hospital in Hertfordshire. I went to the doctors first and told him I think I have TMJ, he didn't think so but he reffered me to the hospital to find out...and I was right! I thought the help I was getting wasn't good, it seems you two girls got even less help. After I was diagnosed I would just have an appointment every few months, sometimes six months. You don't get much time at the appointments, but I had a few x-rays over the time they were seeing me. I have problems with nasal obstruction as well, the tmj specialist said he doesn't want to see me anymore unless my nasal problems are sorted. Not that it's much of a loss, he was useless anyway.lol I used to disagree with him a lot as well...I don't think he liked me much.:D Did you hear the crack in your jaw when opening and closing?
I was also told I had tension headaces at first! I used to go along with whatever they told me, I had to do my own investigating on the net. That is what I'm always saying! I always tell people I feel I know more about it than the doctors do, I go to an appointment and I end up teaching them.lol
Yeah, which is why I want one. Well fingers crossed the mouthguard will help you! I've had two mouthguards in the past, I thought the first one helped me a bit at first....I had less pain. I think it started to cause pain in my teeth after a while though. Then I had some wisdom teeth taken out so I had to get a new mouthguard. But I stopped using it because it felt to tight and I had some tooth pain again. Make sure you clean your mouthguard well, my first one got a bit gross.lol Well I couldn't have thought the amitriptyline was helping much otherwise I wouldn't have stopped taking it, but my sister thought I seemed a bit happier while on it.lol Maybe I should try a higher dose but I don't like taking drugs when it's just something to mask the pain, I want a proper cure. I get a lot of pain in my left side of my jaw but the right side is fine. I get pain in my head, shoulder, neck and I also get tinnitus, all my symptoms are down the left side. I even get pain in my lower back now but the symptoms change from day to day. Sometimes now I find it hard to say certain words. Are you still in a lot of pain now? You are not in pain all day right?
eskimolala
04-30-2008, 06:32 PM
wow you're lucky you got reffered so quickly! :angel: i went to about 5 doctors appointments from june - september before i got reffered to a neurologist. i was given nasal sprays for sinus headaches, anti-biotics for toothache ?? and told to change my diet, which all did nothing.
i was glad at first with the tension headache diagnosis from the neurologist, but he was clueless about the earache etc and suggested i see an ENT. i told my doctor this but she wanted to see how the amitriptyline helped before sending me to one. another example of the NHS wanting to save money!
i have to wait a couple of weeks to get the mouthguard. i dont think it will help that much because i feel i need proper treatment on my actual jaw rather than something to stop me just grinding my teeth. when i take the amitriptyline i always wake up feeling really happy haha! but i hate the fact it takes so long to work and i also do not like masking the pain! someone once said to me that doctors basically think if its not life threatening then you should learn to live with the pain, when really what you want is the source of the pain cured!
most of my pain is on the right side! well the earache and the jaw clicking, but my jaw clicks on both sides. it also deviates to the left when i open it. i get tension/migraine/sinus headaches. more recently ive been getting neck pain. i have sensitive teeth and mild toothache. im not in pain all day. the headaches are on/off throughout the day as is most of the pain. i get lower back pain too! im going to see a chiro on friday who apparently is really good, my dad heard about him from alot of people he knows which can only be a good thing. i decided not to go see the TMJ specialist as it would cost me £750 for the consultation and MRI. im only 18 so that is alot of money for me. i wouldnt mind paying so much if i had a definate diagnosis but i dont want to spend that much and be told i dont have TMJ! although i am fairly sure, im going to try out the mouthgaurd, amitriptyline, massage therapy and chiro manipulation to see if they help :)
i was glad at first with the tension headache diagnosis from the neurologist, but he was clueless about the earache etc and suggested i see an ENT. i told my doctor this but she wanted to see how the amitriptyline helped before sending me to one. another example of the NHS wanting to save money!
i have to wait a couple of weeks to get the mouthguard. i dont think it will help that much because i feel i need proper treatment on my actual jaw rather than something to stop me just grinding my teeth. when i take the amitriptyline i always wake up feeling really happy haha! but i hate the fact it takes so long to work and i also do not like masking the pain! someone once said to me that doctors basically think if its not life threatening then you should learn to live with the pain, when really what you want is the source of the pain cured!
most of my pain is on the right side! well the earache and the jaw clicking, but my jaw clicks on both sides. it also deviates to the left when i open it. i get tension/migraine/sinus headaches. more recently ive been getting neck pain. i have sensitive teeth and mild toothache. im not in pain all day. the headaches are on/off throughout the day as is most of the pain. i get lower back pain too! im going to see a chiro on friday who apparently is really good, my dad heard about him from alot of people he knows which can only be a good thing. i decided not to go see the TMJ specialist as it would cost me £750 for the consultation and MRI. im only 18 so that is alot of money for me. i wouldnt mind paying so much if i had a definate diagnosis but i dont want to spend that much and be told i dont have TMJ! although i am fairly sure, im going to try out the mouthgaurd, amitriptyline, massage therapy and chiro manipulation to see if they help :)
MissHeadache
04-30-2008, 07:03 PM
Rawspice: No the money for the MRI goes to a completely different company. I agree with you about needing a cure and not just taking drugs to cover up the symptoms.
Eskimo: It's a shame you've decided not to get the private cosultation, thought I totally understand - I really struggle to afford private treatment. I started with a mouthguard that I got from my NHS dentist, but as it was soft, I actually found myself clenching on it more in my sleep. It did not help my TMJ as it did not correct my jaw positioning, just protected my teeth from damage from grinding. I have also heard that Chiro really helps, especially if you get it on your cervical spine. There is another private specialist in London called Richard Casson, last time I looked at his website he was offering an initial consultation at £50 with no mention of an MRI. I don't know what he's like as a doctor but could be an option seeing as money is a bit tight for you.
Eskimo: It's a shame you've decided not to get the private cosultation, thought I totally understand - I really struggle to afford private treatment. I started with a mouthguard that I got from my NHS dentist, but as it was soft, I actually found myself clenching on it more in my sleep. It did not help my TMJ as it did not correct my jaw positioning, just protected my teeth from damage from grinding. I have also heard that Chiro really helps, especially if you get it on your cervical spine. There is another private specialist in London called Richard Casson, last time I looked at his website he was offering an initial consultation at £50 with no mention of an MRI. I don't know what he's like as a doctor but could be an option seeing as money is a bit tight for you.
eskimolala
05-01-2008, 09:37 AM
Im currently waiting for an NHS mouthgaurd. i dont think it will help at all :( i have a really bad bite so i dont think the grinding is the only thing causing my TMJ. Im looking forward to the chiro, i really hope he can at least eliminate the back pain so thats one less worry! he cured a disabled girl who banged her head off things 24/7. he realised that the bones in her skull/head were not in the right place, and she was banging her head because she was in so much pain, but she is severely disabled so couldnt talk to tell anyone!
Funny you should mention that! i googled "tmj specialist UK" and i found his site :) it wasnt as informative as dr.grossmans, but i emailed about an appointment anyway. i would have no problem paying for the MRI with dr.grossman but the consultation price is £250 which seems a bit steep! are you having your jaw repositioned with a splint or something? my ortho offered me an operation to bring my jaw forward but from what ive read they can do more harm than good. xx
Funny you should mention that! i googled "tmj specialist UK" and i found his site :) it wasnt as informative as dr.grossmans, but i emailed about an appointment anyway. i would have no problem paying for the MRI with dr.grossman but the consultation price is £250 which seems a bit steep! are you having your jaw repositioned with a splint or something? my ortho offered me an operation to bring my jaw forward but from what ive read they can do more harm than good. xx
MissHeadache
05-02-2008, 12:55 PM
Wow your chiro sounds pretty good! I hope he makes things a bit better for you. I am wearing a splint that will be used eventually to reposition my jaw, but at the moment it is just stretching out all my tensed overworked muscles. The difference this last month has been really noticable.
At least if your try the NHS mouthguard you can then justify that you've tried the "free" options, but you never know, it might be just what you need. Try to go into it feeling positive, I do believe that how you approach things affects how they work to a certain extent. One word of warning, when I first got my NHS mouthguard (and with my new private splints) my teeth hurt a lot for the first week of wearing it until they got used to it, so don't worry if it hurts a little at first.
I read in one of your earlier posts that you are wearing braces at the moment. If the problems have started since you started your braces, i'm sure your orthodontist would be able to adjust them a bit for you to relieve your pain, it might even make the TMJ go away.
At least if your try the NHS mouthguard you can then justify that you've tried the "free" options, but you never know, it might be just what you need. Try to go into it feeling positive, I do believe that how you approach things affects how they work to a certain extent. One word of warning, when I first got my NHS mouthguard (and with my new private splints) my teeth hurt a lot for the first week of wearing it until they got used to it, so don't worry if it hurts a little at first.
I read in one of your earlier posts that you are wearing braces at the moment. If the problems have started since you started your braces, i'm sure your orthodontist would be able to adjust them a bit for you to relieve your pain, it might even make the TMJ go away.
ladybugrules
05-02-2008, 01:59 PM
Hi everyone,I'm new to this forum,but have dealt with TMJ in the past..Have any of you tried diet changes?I know it sounds strange but thats how I cleared TMJ,plus several other health issues .All of which the doctors wanted to prescribe meds or surgery.I have been free of TMJ,tendenitus,and bursitus for over ten years.
MissHeadache
05-03-2008, 11:13 AM
Hi Ladybugrules. What sort of diet changes did you make?
eskimolala
05-04-2008, 12:20 PM
Yeahh he did sound pretty good, unfortunately i didnt feel so positive when i was there. i think my expectations were too high, i was expecting some sort of miracle! he did manipulate my spine, he didn't want to do my neck because he said my muscles were reeeaally tense . i was really nervous haha! so i am due back on friday for the neck adjustments.
thankfully he had a feel of my jaw when i opened and closed, he said "wow, your jaws really crack! i can feel it popping out on the left, which is making your right side really tight." i was quite surprised by that because to me, its my right side that pops and the left that's tight! he's the expert though. :)
Oooh, my teeth hurt already with my braces :( i dont mind though. ill give it a go. an NHS mouthguard is better than nothing i suppose! when did you get your NHS mouthguard? was this before you started seeing Dr. Grossman? I am due to see Dr. Casson on Thursday! so im travelling down to London on wednesday. im excited, i hope he can help me!
i got my braces (train tracks) on december 2007, about 6 months after my symptoms started. they were applied to try and correct my bite and also because i was complaining of jaw pain etc. i hold my lower jaw forward to align with my upper jaw, so my jaw is constantly tensed. but i do believe that all the years of this unnatural positioning has taken its toll on my jaw, and that the damage has been done. so simply stopping the tension wont eliminate all the problems.
thanks for the reply! xx
thankfully he had a feel of my jaw when i opened and closed, he said "wow, your jaws really crack! i can feel it popping out on the left, which is making your right side really tight." i was quite surprised by that because to me, its my right side that pops and the left that's tight! he's the expert though. :)
Oooh, my teeth hurt already with my braces :( i dont mind though. ill give it a go. an NHS mouthguard is better than nothing i suppose! when did you get your NHS mouthguard? was this before you started seeing Dr. Grossman? I am due to see Dr. Casson on Thursday! so im travelling down to London on wednesday. im excited, i hope he can help me!
i got my braces (train tracks) on december 2007, about 6 months after my symptoms started. they were applied to try and correct my bite and also because i was complaining of jaw pain etc. i hold my lower jaw forward to align with my upper jaw, so my jaw is constantly tensed. but i do believe that all the years of this unnatural positioning has taken its toll on my jaw, and that the damage has been done. so simply stopping the tension wont eliminate all the problems.
thanks for the reply! xx
Rawspice
05-05-2008, 06:58 AM
I have tried a soft diet, jaw exercises and I've had two 'soft' mouthguards. The tmj specialist also sent me to have physical therapy for a while on my jaw after all the above failed. They never look at my shoulder or neck even though I have so much pain there, they only ever look at my jaw. I have never been to a chiro, so I guess I will have to try that now! I can't afford to go private, maybe I could find the money if I knew I would get a definite cure by going that way. But without knowing that I can't really afford it, the money could easily add up just trying out different things to find out what works best.
MissHeadache: I'm sorry if you have already said but did you have an x-ray while being seen on the NHS, and what did it show? Also what did your MRI show? It's good to hear that the money goes to a different company and that you are now finally benefitting from treatment.:)
I checked out the websites of UK specialists Casson and Grossman, I noticed on both sites it had tinnitus down as a tmj symptom. I will never get my head round that the specalist I saw didn't think tinnitus was a symptom. I mean I can understand doctors getting things wrong from time to time because they have to take in a lot of info about every illness and medication etc. A tmj specialist though only has to deal with one condition, how can he be an expert when he doesn't even know the symptoms of the condition he's treating.:rolleyes:
wow you're lucky you got reffered so quickly! :angel: i went to about 5 doctors appointments from june - september before i got reffered to a neurologist. i was given nasal sprays for sinus headaches, anti-biotics for toothache ?? and told to change my diet, which all did nothing.
i was glad at first with the tension headache diagnosis from the neurologist, but he was clueless about the earache etc and suggested i see an ENT. i told my doctor this but she wanted to see how the amitriptyline helped before sending me to one. another example of the NHS wanting to save money!
i have to wait a couple of weeks to get the mouthguard. i dont think it will help that much because i feel i need proper treatment on my actual jaw rather than something to stop me just grinding my teeth.
I can't even remember now if I've seen a neurologist in the past, but recently an ENT specialist said maybe I should see one if my septal surgery didn't help.
Don't ever let them fob you off hun, I used to let them do that, being a bit more pushy helps sometimes. For example they wanted me to try out a nasal spray before putting me on a 6 month waiting list for septal surgery. I said they can put me on the list now and if the spray helps I will cancel the op. They had no answer to that so they did what I said.
I'm thinking the same as you about treatment on the jaw. I did ask the specialist once about having surgery on my jaw, he didn't think it was a great idea but he didn't totally dismiss it either. I have heard bad things about surgery on the jaw so it should be a last resort. They seem to do surgery in america but not often in the UK. Good luck for your appointment with Casson.:)
MissHeadache: I'm sorry if you have already said but did you have an x-ray while being seen on the NHS, and what did it show? Also what did your MRI show? It's good to hear that the money goes to a different company and that you are now finally benefitting from treatment.:)
I checked out the websites of UK specialists Casson and Grossman, I noticed on both sites it had tinnitus down as a tmj symptom. I will never get my head round that the specalist I saw didn't think tinnitus was a symptom. I mean I can understand doctors getting things wrong from time to time because they have to take in a lot of info about every illness and medication etc. A tmj specialist though only has to deal with one condition, how can he be an expert when he doesn't even know the symptoms of the condition he's treating.:rolleyes:
wow you're lucky you got reffered so quickly! :angel: i went to about 5 doctors appointments from june - september before i got reffered to a neurologist. i was given nasal sprays for sinus headaches, anti-biotics for toothache ?? and told to change my diet, which all did nothing.
i was glad at first with the tension headache diagnosis from the neurologist, but he was clueless about the earache etc and suggested i see an ENT. i told my doctor this but she wanted to see how the amitriptyline helped before sending me to one. another example of the NHS wanting to save money!
i have to wait a couple of weeks to get the mouthguard. i dont think it will help that much because i feel i need proper treatment on my actual jaw rather than something to stop me just grinding my teeth.
I can't even remember now if I've seen a neurologist in the past, but recently an ENT specialist said maybe I should see one if my septal surgery didn't help.
Don't ever let them fob you off hun, I used to let them do that, being a bit more pushy helps sometimes. For example they wanted me to try out a nasal spray before putting me on a 6 month waiting list for septal surgery. I said they can put me on the list now and if the spray helps I will cancel the op. They had no answer to that so they did what I said.
I'm thinking the same as you about treatment on the jaw. I did ask the specialist once about having surgery on my jaw, he didn't think it was a great idea but he didn't totally dismiss it either. I have heard bad things about surgery on the jaw so it should be a last resort. They seem to do surgery in america but not often in the UK. Good luck for your appointment with Casson.:)
MissHeadache
05-05-2008, 12:30 PM
Eskimo: I got my NHS one a year before my private treatment started. My own NHS dentist did it. Took a mould of my lower teeth and the guard came back the next week. Didn't help at all though.
Good luck at Casson's!
Rawspice: No I didn't get any scans at all on the NHS, not even an X-ray. Their attitude was that "jaw joint problems" (they wouldn't even call it TMJ) do not cause headaches. I also saw neurologists who said it was a tension headache that I would have to live with and get used to the pain. NEVER settle for that sort of answer! Just because nothing is bleeding or broken does not mean our symptoms are all in our heads!
Good luck at Casson's!
Rawspice: No I didn't get any scans at all on the NHS, not even an X-ray. Their attitude was that "jaw joint problems" (they wouldn't even call it TMJ) do not cause headaches. I also saw neurologists who said it was a tension headache that I would have to live with and get used to the pain. NEVER settle for that sort of answer! Just because nothing is bleeding or broken does not mean our symptoms are all in our heads!
eskimolala
05-05-2008, 02:03 PM
thanks missheadache and rawspice! :) i am hoping for good results. thats ridiculous that your TMJ specialist didnt think tinnitus was related to TMJ! my doctor doesnt think jaw problems can cause headaches! sometimes i feel like printing off info on TMJ and handing it to them lol!
gosh it seems so ridiculous that we get passed from GP's to neuro's to optometrist's to dentist's to chiro's and not to mention trips to A&E when the pain becomes too much! i can believe how similar my "story" is to others. it eventually gets the the point where we NEED to do our own diagnosis which is silly when we have a free "health service."
rawspice, was your TMJ specialist on the NHS? im from Glasgow and so far only 1 dentist and 1 doctor have mentioned the term TMJ :eek: the US is far more ahead of us! xxx
gosh it seems so ridiculous that we get passed from GP's to neuro's to optometrist's to dentist's to chiro's and not to mention trips to A&E when the pain becomes too much! i can believe how similar my "story" is to others. it eventually gets the the point where we NEED to do our own diagnosis which is silly when we have a free "health service."
rawspice, was your TMJ specialist on the NHS? im from Glasgow and so far only 1 dentist and 1 doctor have mentioned the term TMJ :eek: the US is far more ahead of us! xxx
myouch
05-05-2008, 05:31 PM
I've been suffering for years. Nothing helps. Why don't dentists get it, it's not the teeth. All this unnecessary dental work that makes things worse. Why isn't this covered by insurance?
MissHeadache
05-10-2008, 12:36 PM
Hi Eskimolala, how did you get on at the specialist? Was he able to offer you any help or advice? :-)
Rawspice
05-16-2008, 11:09 AM
Rawspice: No I didn't get any scans at all on the NHS, not even an X-ray. Their attitude was that "jaw joint problems" (they wouldn't even call it TMJ) do not cause headaches.
What did the MRI tell you, that your disc was out of place or something else? Was you given an x-ray when you went private, if so what did that show?
thanks missheadache and rawspice! :) i am hoping for good results. thats ridiculous that your TMJ specialist didnt think tinnitus was related to TMJ! my doctor doesnt think jaw problems can cause headaches! sometimes i feel like printing off info on TMJ and handing it to them lol!
rawspice, was your TMJ specialist on the NHS? im from Glasgow and so far only 1 dentist and 1 doctor have mentioned the term TMJ :eek: the US is far more ahead of us! xxx
That isn't quite as bad though because doctors don't seem to know much about TMJ, it's shocking though when TMJ specialists don't even know the facts.
Sorry for taking so long, yes that was on the NHS, I've never been private. Tell me about it!
What did the MRI tell you, that your disc was out of place or something else? Was you given an x-ray when you went private, if so what did that show?
thanks missheadache and rawspice! :) i am hoping for good results. thats ridiculous that your TMJ specialist didnt think tinnitus was related to TMJ! my doctor doesnt think jaw problems can cause headaches! sometimes i feel like printing off info on TMJ and handing it to them lol!
rawspice, was your TMJ specialist on the NHS? im from Glasgow and so far only 1 dentist and 1 doctor have mentioned the term TMJ :eek: the US is far more ahead of us! xxx
That isn't quite as bad though because doctors don't seem to know much about TMJ, it's shocking though when TMJ specialists don't even know the facts.
Sorry for taking so long, yes that was on the NHS, I've never been private. Tell me about it!
eskimolala
05-20-2008, 03:09 PM
hey everyone! so im back from the specialist. he says i definately do have tmj. i told him about my NHS mouthgaurd and my amitriptyline etc. he recommended continuing with this for about another month and then seeing if the mouthgaurd is helping. he said because of my age (18) and because i live in Glasgow (he is situated in London) and im a student etc, he thinks that rushing into alot of private treatment is not something he would recommend unless the mouthgaurd does nothing at all for me. which i understand. so ive made an appointment for a months time :) my NHS dentist says he may prescribe me valium and refer me to a dental hospital if the mouthgaurd gives me no relief, so i am finally being taken seriously!
how is everyone doing?
another thing, does anyone sometimes feel they may have a little fibro? soemtimes my body aches all over, like really bad muscle aches. anyone else?
xxx
how is everyone doing?
another thing, does anyone sometimes feel they may have a little fibro? soemtimes my body aches all over, like really bad muscle aches. anyone else?
xxx
MissHeadache
05-21-2008, 04:25 AM
Its great that the NHS are finally starting to take you seriously. I hope they manage to sort you out. You'll have to keep us updated with your progress. I mainly get the aches in my neck, back and shoulders. All seems to connected to my jaw.
eskimolala
05-23-2008, 08:56 AM
i get that too. did your night gaurd help? i remember you said it hurts for a while the first times you wear it, but i feel like my jaw ache is significantly worse throughout the day if ive worn it the night before :(
MissHeadache
05-23-2008, 04:06 PM
It didn't help me. It was quite soft so it actually made me bite down on it quite a bit in my sleep. I also found it moved my lower jaw a bit too which it wasn't meant to. I don't think it made my pain worse but it definitely did not make it better. From research I have done since I stopped wearing it I think all those NHS night guards do is reduce the damage that you would cause to your teeth by gringing and clenching, but they do not actually stop the griding and clenching. They are treating a symptom but not the cause. How long have you been wearing yours for now?
eskimolala
05-27-2008, 07:31 AM
thats what i think too. i mean, if damage has been done to my jaw JOINT then wearing a soft sheild to stop damage occurring to the surface of my teeth isnt going to fix the damage thats there :( thats what my dentist doesnt understand. grr. ive been wearing it on/off for about 2 weeks. although this week im going to try wear it every single night, although i keep taking it out in my sleep! if it doesnt help after a couple of weeks im going back . or maybe another trip to casson !
Rawspice
06-14-2008, 11:06 PM
another thing, does anyone sometimes feel they may have a little fibro? soemtimes my body aches all over, like really bad muscle aches. anyone else?
xxx
Yes I get fibro symptoms, and the kind of aches you get with flu or a bad cold. How is the mouthguard going because it's been a while now, any improvement or not?
xxx
Yes I get fibro symptoms, and the kind of aches you get with flu or a bad cold. How is the mouthguard going because it's been a while now, any improvement or not?
eskimolala
06-16-2008, 01:47 PM
Hi rawspice.
unfortunately, no improvement at all: it makes my jaw and cheek muscles ache really bad! ive made an appointment with my dentist which is in a week and he'll no doubt refer me to the Glasgow Dental Hospital, where i (hope) ill get some sort of x-ray or something! How are you doing?
unfortunately, no improvement at all: it makes my jaw and cheek muscles ache really bad! ive made an appointment with my dentist which is in a week and he'll no doubt refer me to the Glasgow Dental Hospital, where i (hope) ill get some sort of x-ray or something! How are you doing?