Problems with ears/hearing..

    • Anonymous
      May 4, 2010 at 2:33 pm

      Since beginning recovery I have experienced periods of tingling sensations in either one or both ears. While receiving the five doses of IVIG in ICU, I experienced what I thought were hallucinations in that my hearing became super sensative. During one night I woke up to what I thought was a party in the ICU. I even imagined that my wife was there laughing with the entire staff! Anyway, I recently went to hear a local band in a local tavern and had to leave during their first song because my ears began hurting. It seems that I am now sensative to loud noises. I am visiting a music store to see if there are special ear plugs that musicians use so that I can again enjoy music indoors! ๐Ÿ˜Ž Anyone else experience ear problems post GBS?

    • Anonymous
      May 4, 2010 at 3:41 pm

      In the beginning, I noticed that I was more sensitive to noises as well. I have also had some ringing in my ears and some other people have mentioned tinnitus. I may not be the best person to comment though as I already have a hearing loss, born with it. ๐Ÿ˜‰

      You may want to get your hearing checked by an audiologist though. You may want to make sure that you don’t have any acoustical trauma, where you lose more hearing. I highly recommend that you meet with an audiologist.

    • Anonymous
      May 4, 2010 at 4:14 pm

      MD…oh, I feel your pain. I had horrible ear problems after “mild” GBS. My ears constantly had thundering sounds in them and high pitched tinnitus and I could be nowhere near live music. It was just too painful. I love every kind of music, so it was a horrible loss. I got those drug store ear plugs. They come in different strengths. I carried them everywhere. Be sure to use them properly. You need to twist them to insert them. They expand inside the ear canal. Believe me, you will still be able to hear almost everything, but at a volume you can tolerate. I also wore noise cancelling headphones to bed, although they are quite expensive. Some sounds, like brass bands, are still painful, but I did attend the symphony this winter. Most of the pain, supersonic hearing, and tinnitus went away fairly suddenly after 2 1/2 years, so I can now listen to indoors music. I still carry my earplugs, just in case. I’m not sure why my ears took so long to heal compared to other areas. However, my hearing was always exceptionally good.

    • Anonymous
      May 6, 2010 at 12:48 am


      During my stay six week stay in the ICU I developed “bionic hearing”, on the plus side it was entertaining in that I could hear EVERYTHING that went on in the ICU….ie//what nurse was “dating” which doctor etc…..:)

      I later found out that there is a term for what I experienced: “hyperacusis” it was due to the paralysis of the cranial nerve that is involved in hearing.

      So depending on the pattern of your nerve involvement during the acute phase of your illness, and if your auditory nerve was affected by your GBS, you could encounter “bionic hearing”.
      (I also heard of a gentleman with GBS who actually lost his hearing for a short time during his acute phase……but like the “bionic hearing”, fortunately it was temporary).

      Ten years later and I am still hypersensitive to some noises (like whistling….arrrgh) that didn’t bother me prior to the GBS but it is [U]nothing[/U] like it was at the onset.

      best wishes,

    • Anonymous
      May 7, 2010 at 2:44 pm

      GBS affected my hearing almost immediately. Sound was intensely magnified.
      Extremely nerve-wracking! Loud ringing in the ears at times, otherwise every sound was jarring. Loud sounds made me start in shock…trembling from head to foot for about a minute.
      I’m a music teacher. At that point in time, I could only tolerate the quietest of sounds…a gentle and quiet instrument like classical guitar, turned way down on the radio. Could not tolerate people talking on the radio. Kept turning the radio lower and lower and lower. Turned the phone ringer off, couldn’t stand the shock of hearing it ring. Couldn’t stand the sound of a dish clattering, or a pot banging, or a door slamming. Would shake and tremble for a minute or two till the nerves would settle down.

      During onset, my ears felt full, like during the flu or during an earache.
      After several months, this began to change. My hearing has come back again, but I can still not tolerate loud sounds. I use foam ear plugs when necessary, and it really helps with the super-sensitive hearing stress. I can also hear what people are saying when they are whispering some distance away, so it seems that GBS affects our hearing in common ways.
      I’m now living with my own hyper-sensitive nervous system. Only recently I regained muscle control over my vocal chords, mouth and jaw muscles and am able to whistle and sing again. I can stand it; the sound doesn’t drive me crazy. And it has really given me a lift to be able to do this again.

    • Anonymous
      May 7, 2010 at 4:18 pm

      Boy, this supersonic hearing could be a positive side effect of GBS, huh? ๐Ÿ™‚ Like Superman. Maybe you could all fight crime. ๐Ÿ™‚ I remember in the beginning when I would take the train and the conductor would yell, “Tickets please”, I wanted to kill him because it sounded like he yelled right in my ear. I noticed today that it hardly bothered me. So things do get better…..

    • Anonymous
      May 8, 2010 at 12:56 am

      “Sue Thomas, F B ears” ? ๐Ÿ˜€