Undiagnosed / tmj? - TMJ Disorder -TemporoMandibular Joint Message Board

berriepie · 04-12-2008, 08:11 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

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

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

ive heard of "referred" pain etc but im still really scared!! thanks for the help.

MissHeadache · 04-13-2008, 08:17 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.

berriepie · 04-13-2008, 10:58 AM

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

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

(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, 09:13 AM

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.

berriepie · 04-15-2008, 11:07 AM

Thanks for the reply again

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

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

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