Tinnitus. Loud, crazy sounds ringing in my ears!! Miniere's Disease stuff??

Discussion in 'Fibromyalgia Main Forum' started by happycfs, Nov 16, 2014.

  1. happycfs

    happycfs Member

    Hi friends!

    I am having the worst tinnitus symptoms. The sound never ever stops. Never.

    It is odd because I often get louder ears when I get extra tired, late at night; and when I wake up in the morning. After the shower, it will get loud for a while as well, seeming to match the sounds of the shower and bathroom fan. However, it hits me especially hard at the strangest times and I will get really dizzy too. I am currently hearing this strange synthesizer type of sound. To give you an idea of how loud it is, I was watching TV and suddenly I hear synthesizers and thought it was from the TV. I realized it was from my ears and my anxiety went through the roof. I can barely hear the TV now and it has lasted for hours!

    I have Miniere's disease and I experience dizziness and vertigo quite often. But the noises in my ears are getting out of hand. Does anyone have any words of advice or empathy??

    I am really having a hard time! I am housebound and often bedridden so going to the doctor is only for life threatening issues... Thank you anyone and everyone for caring and trying to help...
  2. Soul*

    Soul* Well-Known Member

    Hi Happycfs, my mom has both too as well as being hearing impaired. I know some find comfort in a whitenoise app but it's not for all.
    I don't have it but am sound sensitive so have a fan on 24/7 to better deal with the bad sound isolation in these houses and do use a white noise app at times too. To me a constant sound is less disturbing then dealing with all the random surrounding sounds.
    I hope you found some ways to ease it up for you. I've heard my mum speak about developments of cogleair implants that might help with the Miniere's disease, but I don't think she has anything that helps her with her tinnitus either...
    Hang in there!
  3. IanH

    IanH Active Member

    Sadly this is a significant problem in Fibromylagia and ME/CFS with FM. Like you I have this condition which in my case is pulsatile and gets louder when my heart pumps harder. The sound I hear is like a constant waterfall. I too cannot hear the TV because the noise in my ears is louder so I have to wear headphones through an amplifier which helps understand what people are saying. It is worst for me early in the morning and it sometimes wakes me up around 4am. I have had scans to see if there is anything obvious but there is nothing to see except that I do have blood vessels more close to the auditory nerve than usual but the Specialist doesn't think that is causing it as it is too loud for that. My tinnitus is louder than my lawn mower some of the time. I cannot hear the shower at all.

    There is some evidence that in FM the basal ganglia which normally suppress signals are not working properly and are being "attacked" by the immune system and so the signals fail to be attenuated (reduced) properly. The basal ganglia are a bit like a "negative" amplifier or suppressor.

    I have found that daily meditation helps to reduce the volume, it took me a month of daily mediation to get the volume down but it is still there all the time.

    Also the worse my sleep is the worse my tinnitus.

    I did try a hearing aid for a month but it did nothing to the tinnitus but did help me hear people better and I did not need the headphones for TV but at $5000 I decided they were not that good and I got my money back. However I do know that some people have had success with hearing aids, but not if the tinnitus is pulsatile.

    I sometimes think it worse than the pain which I have reduced a lot anyway.

    So I do hope you find something that will help to reduce it at least a bit.

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