Ringing In Ears

    • Anonymous
      February 17, 2007 at 12:36 pm

      Thanks to all of you that have responded to my link. The amount of information you are giving me is wonderful. My problems(beside shaking all the time) seem to start about 4:PM. My legs turn to mush, the small of my back is in pain the the ringing in the ears is awful. Also, the back of my neck hurts like heck. I do take Ambium to sleep but that ringing/ pounding in my ears is hard to get past. I do rest alot, but probably not as much as I need to.

    • Anonymous
      February 17, 2007 at 9:12 pm

      I have that and its called Tinitus. It can drive you nuts at first but you get used to it eventually. It also makes it hard to hear what other people are saying as it creates it own background noise for you.
      I find that sleeping with a fan on at night, not blowing at you, helps drown out the sound.
      Also during the day, keep something going like a radio or the tv. It helps drown your own noise out then.
      I had tests done and they told me it was nerve damage in my ears.
      The nerves are very tiny in there and easy to damage.
      Mine was from a anti malaria drug called Plaquenil. It is Hydrochloroquine.
      Its a powerful drug and it gave me Chemical Toxicity and that caused the damage.
      They told me it was irreversible.
      I had very loud buzzing at first but it got less after about 2 weeks to where it just sounds like the old tv’s if you turned the sound down. Kinda of a low whistle sound.
      Try not to think about it but do what you can to drown it out.
      I hope yours gets less after awhile.
      Trudy, natesmom

    • Anonymous
      February 18, 2007 at 5:18 pm

      Thank you, Thats exactly what it sounds like. I have a small sound machine that I use if we are staying overnight somewhere. I will try it at home. It is always there but the TV being on or me sewing helps drownn it out. I am sorry to hear your’s is irreversible. I don’t know if this is just part of the GBS process or not. Thank you again,Diane

    • Anonymous
      February 18, 2007 at 9:33 pm

      I don’t have GBS but my son Nate does.
      I got Tinnitus from a drug called Plaquenil when I was first diagnosed with Rheumaroid Arthritis.
      If you haven’t already gone to see your doc about it, do. They need to run tests and see if you have nerve damage in your inner ears or see if its from medication or what.
      I have a noise maker I can use also. It has crickets, water, ocean waves,etc.
      It helps me but I let Nate borrow it to try to relax when his head hurts really bad.
      I use a fan mostly at night on low. It helps me a lot.

    • Anonymous
      February 19, 2007 at 2:10 pm

      I had it come on about 25 years ago and the doc said it was from infection in the mastoid area of my ear. Whenever I get congestion in my head and ears, I can hearing a tapping sound. I found if I popped my ears or wiggled my jaw it would sometimes stop. It can be very annoying.

      Maybe this is why I have slept with a sound machine for many years. I like the ocean sound!

    • Anonymous
      February 19, 2007 at 2:15 pm

      Thanks for bringing up the subject of ringing in the ears. I thought it was from something else – perhaps blood pressure. IS it part of the GB?? When does it go away? I am on NO medication – did the GB au natural – so I feel like I am part of the control group!!

    • Anonymous
      August 16, 2007 at 11:54 am

      I have read your interesting discussion about tinnitus. To clarily your thoughts on the topic, there is absolutely no evidence of a connection between GBS and tinnitus. I understand that it can be very painful and I hope that anyone who has it has a mild case.

      Barbara Katzman
      Exec. Director
      GBS/CIDP Foundation

    • August 16, 2007 at 3:32 pm

      I am beginning to believe anything is possible with GBS. Our entire body is run on nerves so if something that attacks those nerves causes damage, and it isn’t selective, why wouldn’t ringing in the ears be linked to GBS? Just like headaches. I had severe headaches while I was sick and others here have complained of the exact kind of headaches. Nerves are in our heads. If you arent on meds or had something that would have caused it, it seems extremely possible that it could be linked to GBS. Since so little is known about GBS, maybe this is something that could be added to the list of knowledge. For example, I had no idea that hormones could cause residual flare ups. Each month I was thinking something was seriously wrong with me. I got in touch with Dr. Parry and he verified that, yes indeed, hormones…including female hormones…cause residuals to flare up.

      Im not trying to say that [I]every little thing [/I]we now experience is GBS related, I am saying it is [I]possible[/I] especially if it is nerve related and we dont know which nerves are still unhealed or how their damage may affect us.

      I may be way off base here, but I had to post.

    • Anonymous
      August 16, 2007 at 5:12 pm

      Oh dear, I was told that the ringing in my ears was probably due to the nerve damage and/or inflammation due to nearby nerve damage. It seems we have a lot of opinions out there and very little factual information. Of course for more factual information that would mean a lot more people would have to have it to be studied etc. etc. etc. (not to mention it would have to be an attractive research project to get funding… sigh- we just aren’t sexy enough for big time research.)

    • Anonymous
      August 16, 2007 at 5:18 pm

      Well The ENT DR I saw in Ottawa said I had nerve damage and she felt it was autoimmune related. I have hearing loss that one day got worse that effected both ears. The sudden hearing loss occurred on July 14 this year. My regular ENT has given up on me.


    • August 16, 2007 at 7:21 pm

      It would be great to find out how many actually have this after GBS. Look at how many other things we have after GBS. Either new things or exasperated problems. we may not be sexy enough for a grant, but man we can do a heck of a lot more as a group in a shorter amount of time 😉

    • Anonymous
      August 16, 2007 at 9:50 pm

      I have CIDP and spent 25 years in the around things that made lots of noise [jet, bombs, incoming, etc.]. My tinnitus probably comes from a combination of both along with a hearing loss.

      The good news is that a $30 stereo sounds the same as a $2,000 one. Just think of all the money I’m saving 😎