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TMJ or Meniere's? pls help

Posted , 7 users are following.

GOLDIE111
GOLDIE111

Hi guys,

Im a 23 yr old male and 5 weeks ago today i had my first ever vertigo attack, where my right ear roared with titinus to the point of total deafness, (as the world began to spin) this lasted for a good few hours that day (touch wood nothing of the sort since). However, since the attack 5 weeks ago my hearing in that right ear is still impared (struggle with picking up quiet sounds and struggle in social situations which is hard to deal with) however it has improved since the attack and the titinus has died down to a more toralable level, but i think ive hit a point now where it's not going to improve anymore (which is difficult 2 deal with being so young). After initally being diagnosed with labyrinthitis; an e & t speciallist suggested meniere's, which at any age can be difficult to deal with mentally, due to its unpredictable prognosis. After weeks of worry and anxiety i've done plenty of research as i feel this is important, (i.e sticking to a low-salt diet, regular cardio exercise, no-alcohol) and the other day I stumbled across a fellow patient who was misdiagnosed with menieres and it was actually TMJ (A disorder of the jaw which can effect the inner ear) causing her symptoms which mirrored menieres (Hearing loss/vertigo/ear fullness). When i was about 15yrs old my dentist told me that i grinded my teeth at night, so I wore a gumsheild for about a year and then stopped stupidly. I've since learned grinding your teeth at night (bruxism) can actually lead to TMJ due to the stress it places on the jaw.  I have constant popping/cracking noises in both ears when i swallow,  a dull achey face, a stiff neck, and titinus in both ears (very mild in left, noticable in right after the attack where I have hearing loss) which apparently are all symptoms of TMJ but also menieres. I was just wondering if anyone was familiar theese problems, and if the hearing loss im experiencing is meniere's or TMJ related? Would be great to hear back, reading some of the remidies and inspirational stories on this forum has definitley helped ease some of the anxiety, knowing other people are going through the same problems!

Cheers x

2 likes, 16 replies

16 Replies

  • eleftherio33095
    eleftherio33095 GOLDIE111

    Posted

    TMJ does not cause vertigo.

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

    • tim63896
      tim63896 eleftherio33095

      Posted

      I have a question for Eleftherios. About 5 years ago I went on to Aciclovir antiviral at the suggestion of the research carried out by Doctor Richard Gacek in the states. After an initial high dose followed by a maintenance dosage I have been attack free ever since. I still have major hearing loss in my affected ear and sometimes get positional vertigo, which is very short lived and doesn't make me nauseous. Have you had any experience or do you have any thoughts on using anti virals for the treatment of menieres symptoms? I would be very interested in your opinion as I know that there are some doubters and some advocates surrounding this intervention.

    • JMJ
      JMJ tim63896

      Posted

      I was so surprised to read your post!  I have yet to run into anyone else who has been on the Richard Gacek's protocol.  I'm in the U.S., and not long after I was diagnosed, I was put on the Acyclovir Protocol.  After reading the research, I was SO optimistic!  I was sure that I would benefit.  But sadly, it didn't help me at all. In fact, I just continued to get worse.  Eventually, I was so continually sick,  my ENT referred me to University Specialist. He started me on intratympanic steroid injections, and after  4 months and 4 injections, I finally began to experience some relief.  And now, after 9 injections, I've been vertigo-free for 6 weeks, which is for me, nothing short of a miracle! I wonder why some people respond to the anti-virals, and some don't?  Same disease with different causes?  Different diseases with the same presentation?  There seems to be so much that's still unknown about MD.  Anyway...I'm happy for you, and so interested to hear someone talk about Gacek's protocol.  

      Take good care...

      J

    • eleftherio33095
      eleftherio33095 tim63896

      Posted

      It is indeed interesting that you received antiviral therapy for Menieres disease, and it worked.  I would be very interested to see the research published and confirmed by other researchers, as this form of therapy is not yet discussed with regards to this disease.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • tim63896
      tim63896 eleftherio33095

      Posted

      The possibility of a viral cause has been considered as long ago as 1995. Trials didn't show much success but Dr Gacek started using an initial high dosage followed by a maintenance dose. His trials proved successful but were not double blind studies. There have been other successful trials but the treatment remains controversial. More needs to be done. In my case I was in danger of losing my business and my home as my attacks were increasingly severe and regular. I can't understand why research and knowledge seems to be slow in happening, particularly here in the UK where it seems that new information threatens the status quo; physicians would rather use what doesn't work and then use more of what doesn't work if the patient shows no improvement.

    • danielle27485
      danielle27485 eleftherio33095

      Posted

      REALLY?

      I suggest you look at studies dating back to 2003 that suggest otherwise.

      I hate when doctors get the final word, and yet when they make a mistake they can chalk it up to "science".

      I am a patient, I have had Ménière's Disease for 7 years now with violent, severe vertigo, the longest lasting 96 hours straight, and now my episodes hit me multiple times a week.

      Going for TMD treatments, and seeing results. 

      Interesting that they're "unrelated".

  • dan40016
    dan40016 GOLDIE111

    Posted

    Hello Goldie111, your problem can also be caused by brain seizures. I took me many years to finally find the real cause of my problem. I had reached the point of complete turn off with out warning. Makes life very problematic.

    My seizures were frontal lobe seizures. See a nurologist as part of your search for answers.

    Good luck. Dan T.

    • GOLDIE111
      GOLDIE111 dan40016

      Posted

      Hi dan,

      Have you experienced simular symptoms to mine? what is the prognosis of this condition? I do suffer from what i thought was sleep paralysis also, im not sure if this is related. 

      Thanks alot

    • dan40016
      dan40016 GOLDIE111

      Posted

      The symptoms for Meniere's and seizures are very similar. My nurologist ran a scan of my brain and found the seuzures. I was always told there is no cure for Meniere's. Same goes for seizures. There are good medications for seizures. I never had a good Meniere's drug.

      I had constant dizziness. I had several "drop attacks". I would just turn off. I could not drive, I could not do my job properly as I was afraid to leave the ground. I slept in a chair for years. My normal bed was in a loft about seven feet off the ground. I wish I had seen a nurologist much sooner. Hindsight is usually pretty good. Keep trying.

      Dan T.

  • dan40016
    dan40016 GOLDIE111

    Posted

    Goldie111, many years I was told I had Meniedre's. I think the doctors I saw just used the diagnosis from the past doctors. Lots of medical types told me I had Meniere's, they were wrong. 

    When I learned I did not have the "there is no good medication - here try this drug disease".(There are good medications for brain seizures).

    All of my symptoms are gone now except the noise. My problem now is the loss of memory. Too many years of seizures went untreated. This is something I must deal with. Probably will not get any memory back. Still this is much better than falling down with out warning. Kept on brakeing my left leg. I hope you can find good doctors. 

    I don't remember sleeping problems. The ear noise started in my right ear as well as yours. I got to the point I did not listen to the noise. The noise went stereo a few years later. Took more time to learn not to listen. You probably get to keep the noise. Had mine for many years now. Good luck.

    Dan T.

     

    • sarita68311
      sarita68311 dan40016

      Posted

      Hi dan, I was wondering before u got the right answers about yours being seizures did u lose any heating? 

      Many thanks 

    • dan40016
      dan40016 sarita68311

      Posted

      Yes,  right ear went first, it is not worth much. My left ear is still mostly OK. Tinnitus in both. Sometimes at night the noise is hard to ignore.

      I have gotten good at not listening. 

      I have hearing aids - they make it easier to deal with a group of people. 

      Dan T.

    • sarita68311
      sarita68311 dan40016

      Posted

      I'm only asking cause I got told I had Ménière's about six years ago but had symptoms for almost eight years, but had an eeg and mri about five weeks ago instead of the Doctor giving me my results they have now sent me to Kings hospital in London to redo the reg and have a sleep one too. Am now feeling a bit worried as if they have found something.  Would be nice if they did and could stop me feeling like crap, off balance and no vertigo. 

    • dan40016
      dan40016 sarita68311

      Posted

      I hope they found something. My seizures showed in my eeg test. I was at the veterans hospital. They were very good with showing me the results.

      My best wishes

      Dan T.

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