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Living with Polyneuropathy CIDP, GBS, & CMT

Tinnitus... has anyone experienced it?

Hi everybody!
My name is Belén and I was diagnosed with CIDP back in 2010. I'm in remission now since that year.
I've experienced pain sometimes since then, though, and the paralysis in my face didn't really go away but it's noticeable only when I smile... and sometimes when I talk (the right part of my face doesn't respond as well as the left one, but that's all)... I'm glad I can move my limbs properly all over again :)
People sometimes mock me or get a little upset at me because I smile mostly with one side of my face so they think it's a fake smile... when it really isn't. Sometimes I explain, sometimes I don't.

Well, the point of this post is to ask you about tinnitus... has anyone had it?
Mine is like the sound of two tiny rocks hitting each other inside my head.
It doesn't always happen, but when it does it's annoying... it tends to happen when the air is really moist and the days are cloudy as hell.
They scanned my brain and they didn't find the cause of it (although my right brain ventricle has a little bit more spinal fluid than the other one). I also went to an otorhinolaryngologist and they tested me but they found nothing.
Last year I asked another doctor and she told me it could be because of CIDP but she wasn't sure why.
Since they wanted to perform another EMG on me, I didn't go back since then.
I'm going to the doctor next month and I'll ask and I'll let them perform the EMG on me and another MRI, blood tests and stuff, but... until then, anyone with tinnitus?

Thank you very much!

Yes, I have had tinnitus for years. Since my teens, at least. I do not think it is related to my CIDP, I just had my hearing evaluated two weeks ago.

I'm not alone feeling nuts hearing this thing in my head then! :)
Please, let me know how your results turn out!

Blue Topaz said:

Yes, I have had tinnitus for years. Since my teens, at least. I do not think it is related to my CIDP, I just had my hearing evaluated two weeks ago.

I support your running from the EMG, it does hurt like the worst hurt imaginable!!and yes… I have tinnitus in both ears but worse in the left, which is my numb side, especially when I am waiting for meds to kick in and when I’m tired. So we can see if we are the only two affected. I doubt it. Don’t fret my friend, we don’t have a choice but to embrace the doctor. I get tired of having to go myself. Necessary evil.

Thank you! This is so comforting... I was tired of looking at the puzzled expresions of my doctors.
It also happens to me when I'm too tired.
And I can't place it properly even though it's quite loud. Sometimes it feels like it's the right ear (the one of the side of my face that remains a little stiff when I smile).
I was just about to ask on a Facebook page for people with CIDP about tinnitus... if there are more people that experience the same we do I'll keep us all updated if you want :)
When they first started I thought I was going nuts!
Thank you very much for being there :)


Sunshine 58 said:

I support your running from the EMG, it does hurt like the worst hurt imaginable!!and yes.. I have tinnitus in both ears but worse in the left, which is my numb side, especially when I am waiting for meds to kick in and when I'm tired. So we can see if we are the only two affected. I doubt it. Don't fret my friend, we don't have a choice but to embrace the doctor. I get tired of having to go myself. Necessary evil.

I lost my hearing in my left ear 2 years ago before they officially diagnosed my CIDP . I also having ringing in my air but namely the left

I'm sorry about that... what happened before that? Did you lose your hearing all of the sudden?

Chrissy Schell said:

I lost my hearing in my left ear 2 years ago before they officially diagnosed my CIDP . I also having ringing in my air but namely the left

I have tinnitus when IvIG therapy fades. Sounds like out-of-tune Scottish bag pipers marching around inside my ear canal. I've had this for over 10 years; I know this because it interfered with my music career. I retired from performing music in 2006. I was told tinnitus was caused by diabetes. Every CIDP problem I have was attributed to diabetes. Kaiser!

Well... they tested me for diabetes and I don't have that... They've tested me for many many things and they still haven't found why it happens.
It's good to know we're not in this alone. Thank you for sharing :)
I'll tell my doctors I've found more people that experience the same... maybe they'll tell the next person with CIDP that she/he's not crazy and that it happens to other people too!



BelenLaborde said:

Well... they tested me for diabetes and I don't have that... They've tested me for many many things and they still haven't found why it happens.
It's good to know we're not in this alone. Thank you for sharing :)
I'll tell my doctors I've found more people that experience the same... maybe they'll tell the next person with CIDP that she/he's not crazy and that it happens to other people too!

I also have tinnitus...high ringing that sometimes even changes in pitch. I always thought mine came from years of loud electric guitar,heh heh.

But it did get worse with the CIDP, much worse, so you may be on to something. Oh well, with the tinnitus, I'm never alone. (`>`)

Love your story of running away from the Emg! It is pretty nansty when that needle is about two inches into your muscle and they need to dig it around...

I’ve had ringing in my ears 24/7 since October 2018 my neurologist said it’s from CIDP and there’s nothing that can be done, it is really annoying and I want it to stop. Does anyone have any ideas how I can stop this?