Hyperaccusis and Tinnitis anyone??

Discussion in 'Fibromyalgia Main Forum' started by pooped, Jun 9, 2003.

  1. pooped

    pooped New Member


    I have had fibro for 30 years and was recently diagnosed with hyperacusis and tinnitis. The specialist I saw said that it is probably from the fibro but couldn't be sure and he told me there was nothing could really be done. I have this awful swooshing noise in my head and occasional ringing in my ears. The swooshing noise could be compared to the heart beat of a baby in the womb during an ultrasound. I also find that I am extremely sensitive to noise. A normal range of sound can knock me to my knees and shut me down for the rest of the day. My only reprieve is the quiet sanctuary of my own home and even then I have to constantly ask people to lower their voices and, "TURN THAT DOWN". (I have turned into my parents, LOL) Does anyone else experience this? Are there any good coping strategies? Does it last forever?

    Thanks for your response, POOPED
  2. Member

    Member New Member

    Hi - (love your icon). Sorry to hear that you, too, have tinnitis. I've had FMS/CFS for many years and developed Tinnitis about 5 years ago. I wish I could say that I knew of something that would stop it, but I really don't. The ringing in the ears and the head sounds are very unsettling. Someone told me that eventually you learn to live with it. I couldn't see how. But I guess I do now??
    I have FMS/CFS, Migraine, Sinus, and Rt Side Facial Paralysis - a leftover of Bells Palsy so I've been on lots of medications through the years. It does seem that if I take over-the counter meds(Advil, Sudadfed-Sinus, Tylenol, etc.) which I always thought was better than prescriptions (I've taken more than I'd care to share in the last 30 years) that this would be better. But it does seems to bring on the ringing. Hope this helps. Pat
  3. MemoryLane

    MemoryLane Member

    The swooshing you hear is the sound of blood pumping. The tinnitus is a symptom of FMS/CFS, but can be increased by many drugs like NSAIDS and aspirin.

    This is from the website of the Tinnitus and Hyperacusis Center in London:

    This site is all about tinnitus (and hyperacusis) retraining therapy. TRT for short. In the 1980s Pawel Jastreboff, a neuroscientist, now working in Atlanta, worked out the real mechanism of tinnitus. Until then, all the accounts of tinnitus in textbooks said it was all due to ear damage which couldn't be fixed. That is what many people and professionals still believe. It just happens not to be true.

    The simple ear model just didn't answer any of the puzzles about tinnitus, and Pawel was able to use his neuro-science (brain-science) background, with a wide knowledge of behavioural neuro-physiology to work out what was really happening. He published the 'neuro-physiological model' in 1990, and this important work has never been challenged or criticized. However it does turn conventional wisdom on it's head (hard for some people).

    Once you know that the important parts of tinnitus and hyperacusis distress are NOT due to damage that can't be fixed, then you can figure out treatments that will work. In London we started to apply the Jastreboff model as early as 1988, and were the first to use TRT. After 20 years of tinnitus research using every tool know to medicine and surgery, we suddenly got results - that lasted.

    Many accounts and treatments of tinnitus are based on outdated ideas. Many of the support groups are simply phobic training camps! Read the articles and references on this site (and Jastreboff's) and make up your own mind.

    Some simplified definitions to help you get started!

    Tinnitus - not a disease, just the ability to hear sounds generated by the auditory (hearing) system, evidence of compensatory mechanisms that are part of its normal function. The problem is the distress created - not the type of sound.

    Misophonia - dislike of environment sound(s). With or without tinnitus! Varies from 'chalk scratching on blackboard' to dislike of all sounds around you.

    Phonophobia - fear of environmental sounds. Fear that they may damage hearing or make other symptoms worse...

    Hyperacusis - over-amplification of environmental sounds in the auditory pathways. Everyday sounds seem too loud, but others people aren't complaining!

    Jastreboff model - a new scientific analysis of tinnitus and hyperacusis. In 10 years this thesis has never been challenged, and is being adopted and referenced by increasing numbers of researchers and clinicians. Explains clearly and simply all the above phenomena and their close relationships.

    TRT - treatment based directly on the Jastreboff model. It uses a precise and individual combination of sound therapy and teaching / demystification / learning about tinnitus and hyperacusis mechanisms, with directions about how to return to normal life without provoking symptoms. 800+ professionals around the world have attended training courses and many have published identical excellent results to our own.
  4. selma

    selma New Member

    Hope it helps others too.
  5. crissyfamily

    crissyfamily New Member

    thanks for the info...

  6. pooped

    pooped New Member

    I want to thank you all for your replies. I gleaned so much information from all that you wrote. This is such a wonderful and informative resource and I just wanted you all to know how much I appreciate taking the time to answer my questions and share some of your own experiences. Thankyou from the bottom of my heart!

  7. nickname

    nickname New Member

    ......get the whoosing and loud high pitched ringing, also like I'm imbalanced in one ear. Ginkyo helps probably because of increased blood flow. When I stop taking it, within a few weeks it comes back. Really weird to get your post because only yesterday got it all back again having dropped off the ginkyo - started back on it immed.
    Best wishes
  8. pooped

    pooped New Member

    Sorry to hear (no pun intended) that it has returned for you. It is so awful. I just hate it. Thanks I will try the ginko. Sure hope yours goes away soon.

    Love, POOPED