Seems like i found out whats causing my T

Hi every 1 hope your all well.

Had a horrendous weekend been dizzy and falling all over

My daughter frog marched me to A&E this morning

Realy wasnt intrested seeing i have had so many tests done for tinnitius

ended up getting a Dr from the maxillofacial unit to come and see me

As i am under them with tmjd

My daughter explained what was going on with tinnitus, dizzyness falling and loss of hearing

He then started to explain well yes i would get all these symptons and more seeing i have

anterior misalignment or displacement of the articular disk above the condyle

crepitus in both temporomandibular joints

masseteric hypertrophy

I sat there with my mouth open no 1 has ever told me this all i was told was we will wash yr jaw out

as you have arthritius.

He then went on to say we will put you on betahistines I said been on them since october

Oh we will put you on amityptiline been on them 5 years for nerve end pain

Oh well we will make an appointment for re education for your tinnitus been there done that

But he said you have to go there before audiology appointment i said i got 1 them 19th

Well he then replied there isnt anything else i can do for you good day

He did say that doing arthrocentesis (washing jaw out) could make my tinnitus worse

and all the other symptons if it did he would botox the masseter muscles i asked if this would stop

the tinnitus he said No.

So looks like i have finally found out what has caused the tinnitus and the hearing loss lets just hope

Audiology can help me.

18 Replies

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  • Hi Gail.

    I whave the same problem and was offered jaw surgery as my jaw crunches and had prpblems since a teenager.

    They were going do a clean out and reposition my jaw in place.

    Love glynis

  • Hi Glynis, Thanks for reply all i thought i had was tmjd not all the other stuff that came with to days visit to the hospital but it answers a lot of my questions. Did you have the op done i have limited teeth opening ie quarter of an inch been on liquid diet for over a year but whats annoyed me the most is they didn't even mention it can cause T at my last appointment.

  • Hi Gail, hope you're feeling better. There is much information and advice on this forum which should help you to understand and come to terms with T. As far as my T is concerned, audiology at my local NHS hospital had the answer by providing a hearing aid and maskers. I now have more good days than bad. Keep on this forum, the regulars provide the answers! We're all in this together. Love and best wishes, Angela xx

  • Counting my days down to my audiology appointment there on the 19th never wanted an appointment to come some quick. x whats a masker

  • This group has learnt me a lot x Am drumming it into my head i am going to have a good day and always remember there is some 1 who has T worse then me on wards and upwards is the only way to go let this T get me down to much x Not any more watch out T x Hope yr having a good day enjoy yr evening and thanks x

  • Will send you a pm...

    Love Glynis

  • replied to you thanks x

  • Yay Gail, I'm glad that you found out what caused your T but I relate to your frustration that none of the medics bothered to explain the full diagnosis to you in the past! It hardly inspires confidence, been there done that and got a shed load of t-shirts lol.

    I hope the audiologist will be able to help you, roll on the 19th and you can pick up a wealth of information, advice and tips from the understanding and caring people on this forum.

    Best Wishes

    Xene

  • Hi Xene, How are you today. Thanks for reply I just sat there with my mouth open well as far as it opens lol couldn't believe what i was hearing i had a few choice words for him lol not to be repeated on here. Been down far to long only way is up gonna kick this t where it needs kicking i am going to have a good day x

  • Yay Gail, yeah I'm plodding along thank you. I'm glad you gave him a few choice words, mind you it's like water off a ducks back to some of them. I sometimes feel the left hand doesn't know what the right hand is doing and it is the patient who's stuck in the middle needing answers and explanations of their illness!

    A couple of months ago I found the people on the oesophageal forum more helpful than the dietician about possibly having a feeding tube fitted!

    Hang tough with your positive attitude to T especially when you've got other symptoms to deal with too.

    Best Wishes

    Xene

  • Hi Xene, yah i agree with you about the left hand not knowing what the right is doing, early morning for me going to be a long day, Hope you have a nice day. My late hubby had a nasal gastro tube i fed him at home with a machine during the night but i understand yr having a peg fitted into your belly button totally different have you made up your mind yet or is it a case that it needs doing x

  • Yay Gail, Sorry for the late reply but they didn't notify me you'd replied damn technology lol. I'm trying to hold off with the j peg as I know it will be for life! My diet is very poor, can't swallow most foods but with the help of supplement drinks and eating rubbish like cream cakes (my cholesterol is probably sky high lol) I managed to gain 11/2 stone in 9 months!

    After being skeletal for 5 years it feels weird almost obese but I know I'm not. I keep a close eye on it and if I can't maintain it then I'll have to have the j peg. I've recently swapped the cream cakes for banana, huge difference in calorie intake but I'll see how I get on.

    I hope you're managing with your T, I know how hard it can be! Take care.

    Best Wishes

    Xene

  • Same here Xene thought it was my lap top, What ever you can get down get down thats what i use to say to hubby.. Im on a liquid diet with my jaw i have put 2 stone plus on in a year with all the rubbish i have the dr said try liquidising vegetables and roast beef dinners i said thanks but no thanks looks awful so i stick to ice cream with fruit in it. T been awful past few days had this awful clicking in my ear not sure if from the T or my jaw but my mouth has been shut when it happens which makes a change lol but i keep saying there is some 1 worse then me so stop moaning and get on with it. Only 5 days till audiology appointment cant wait. My jaw wash out is suppose to be before 12th May but got no chance not even on list yet. Hope you have a great weekend Xene x

  • Hi Gail, sorry to hear you had to put yourself through all of that - again - to be told the same as we are all told -" there's nothing more we can do". Its testament to your strength that you were able to write this post!. I saw a chiropractor in my early days as he believed that T could be caused by the blood vessels in the back of the neck leading to the muscles at the bottom of the skull being squashed. Needless to say, having your skull and neck cracked and twisted every month for 6 months - with no benefit - makes me realise now that we all hang on to the hope that somebody , somewhere will have the answer.

    We all live in hope...

    Stay strong!

    Jane x

  • Hi Jane, chiropractors will tell you what they think you want to hear - a good way to empty our bank account! I got T after a major op - I was very stressed when the T came a day after. Also since that time I have been having awful neck pain with lots of crunching bones! I had thought that maybe my head was in a position for so many hours during the op that caused the T. I had considered professional osteopathy etc but instead I do the exercises on the NHS patient choice for neck pain. Obviously to no good effect as yet but my bank account remains healthy! Hope you're having a quiet day, love, Angela xx

  • Hi Jane, thanks for yr reply i give up on Drs and hospital gonna kick this T my self was so annoyed they didn't tell me this months ago i have been seeing them for over 4 years but only started july with the T but they should have warned me. omg i cringed at the thought of having skull cracked my neck cracks all the time and knees lol the joys of age lol or so they tell me x Im sure yr right some 1 will find the answer hope its not to long lol. Hope you have had a good day x

  • hi well hope you get help I just get tinnitus but getting pain in me shoulder could be arthritis no fun getting old just plod on and if you find anything that helps it s good don't try to hard it only get you stressed and your tinnitus will go loud you wont win it all you can do is try find anything to help you cope

  • Thanks for reply age is just a number none of us are old lol well thats what i tell my self, My T is so loud i hear it above people speaking to me never stops never goes quite hoping the jaw wash might help but he did say could make it worse. I keep telling my self get on with it there is always some 1 worse off then me x

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