Hearing and CIDP

Hi Sue! Sounds to me like the hearing getting better and then getting worse is an Inflammatory problem. And when on the higher doses of Prednisone and other Inflammatories it kept the Inflammation down. But now that your back on a lower dose the Inflammation is coming back causing your hearing to go bad again.

My lupus one time many years back caused a problem with a nerve around my left ear! I stayed dizzy and kept getting worse instead of better. They had to increase my dosage back then and the hearing and inflammation went down. So that might be what is happening with you.

Do you ever get wax build up in the ears. Sometimes that too can cause a hearing blockage. My husband has this problem terribly bad.
But yours sounds like an inflammation problem.
Hugs
Linda H

Hi Sue,
A couple of months ago I bought a textbook called Neuromuscular Disorders by Amato and Russell. It is a great reference, In the CIDP section it says, “Cranial neuropathies can lead to mild facial weakness, ophthamoparesis, dysarthia, dysphagia, *hearing loss*, or vertigo.”
It doesn’t talk about hearing loss other than that statement. I suspect that the fluctuations you have in hearing would be much like the flare ups that come and go with other symptoms of CIDP. So when you lose hearing, you are having a flare up.
Laurel

Hi Sue! It sounds like an inflammatory process to me also. Methylprednisolone(sp) is the iv steroid-at least thats what I was given in the hospital.(sorry but I’m in one of those lovely brainfog periods) Pred works on the inflammation aspects of this nice syndrome.
Hope you get some answers soon from the dr about your hearing. You certainly have had this problem for long enough. Stay Strong Hun!! Take Care.

Hi Sue,
I’m not sure if I’ve told you this before, but the hearing in my one ear hasn’t been as good since my first CIDP attack. I always had good hearing before this.
Good luck,
Kazza

Hi Sue,

My C.I.D.P. has cranial nerve involvement. I suspect that may be your situation as well?

When I’m suffering a particularly bad attack, have missed a dose of I.V.I.G., or am just generally crashing, I completely lose the ability to taste food. Eating becomes a chore, as everything tastes like cardboard.

Methylprednisone did absolutely [U]NOTHING[/U] to improve my condition, but then everyone responds differently to different treatments.

Good Luck!

Kevin (a.k.a. KHS730)

Sue,

My hearing loss is high tone, or it started out there, and has moved down range a little over the past few years. It resembles tinnitus, ringing in the ears, BUT, when it becomes more prevalent, robust, and obnoxious my CIDP tends to worsen. I use it as a clue that my CIDP is building up and getting ready to knock me down. It is generally a good predictor. (for me.)

By the way…. My neuro says that the two are totally unrelated.

For me… I pay attention to my body.

Take care

Dick S

Dick S! I get the same thing! The ringing in the ears and then my hearing goes! Usually shortly after that I get an attack on my nervous system. I agree it’s an indicator of it being part of the disease process! Funny that you mentioned this. I get really dizzy too! When I get that way, I can’t drive!
Hugs
Linda H

Hi Sue! That is a lower dose for us but for normal healthy people 20 mgs is rather high. Roght now I am on 60 mgs of prednisone and am supposed to drop it by 5 mgs a week! I am so hungry~ LOL! I hate those high doses for all you want to do is stuff your face full of food and you just don’t get full! Then you gain 100 pounds just be being on the drug! LOL! I have been eating raw foods with low calories in hopes I don’t see the massive weight gain and what does hubby do last night! Buys an Angel Food Cake~ 😀 Arggg!
Linda H