[bny806]

I know yall have talked about sensitive hearing on here before, and I have had that for a few years now.. but the past 6 months or so, on and off I have had Eustacian tube dysfunction.. it's miserable.. in both ears- they feel full, my hearing is senstive all while being muffled...

I consulted Dr google- about Eustacian tube dysfunction and muscle weakness. and turns out that people with bulbar dysfunction - those with MG and other diseases like MND have a higher increase in ETD.. I have never had any ear problems until all of this started, so just found it interesting.. and I sure wish I could make it go away- it's miserable!

[4-eyes]

I had ETD for several months last fall, with one of my ears being blocked 100%. Mine was aggravated, if not caused totally, by ragweed and other fall allergens. I'm attempting to avoid the same fate this year by using Nasonex at a half dosage and so far, so good.

I hope you feel better soon!

[southblues]

My ears totally stop up when I am having a myesthenic moment. If I sit down, take a mestinon, and rest, they unstop. Somebody said it had something to do with the muscles in your middle ear getting weak. I am not sure if this is true, but I think it is. I use the stopped up ears as a warning sign that I am about to totally lose my voice, get extremely weak legs, and have trouble breathing if I don't slow down.

[Gabriella]

So interesting, I've had this problem, it comes and goes, and it drives me crazy! When it is really bad everything this is blocked and it interferes with my ability to talk because the pressure is so weird in my ears and feels so uncomfortable. And my first symptoms were bulbar symptoms with the myasthenia (pre-diagnosis every doctor told me"I don't know why your throat feels like that" duh!!) So interesting, thanks for posting this, can't wait to read more about on dr. google.

[SoftTalker]

Yep, I get this too.

ENT says MG can and does affect muscles in the ears and hearing too.

Audiologist says hearing can and does for me fluctuate as my MG weakness fluctuates.

WHAT did you say Doc?

[bny806]

wow... so interesting that so many of you have similar issues too!!! Makes me feel not quite as crazy As, I have never ever had any of these issues until all this weakness/mess started!

I haven't mentioned it to my dr yet, I haven't been to my neuro follow up since I last noticed it, and especially not since I put the two things together as related, not just coincidence.. Maybe that also explains why position (lying down, instead of standing upright) helps relieve the symptoms more as well! Someitmes my ears will hurt so badly it feels like my eyes hurt when I move them.. it's not much fun!!!

Yall found anything else that seems to help/work? I'm hoping my IVIG on tuesday will take care of it, as it did last time this happened!

[Perciphone]

I apologize for not first familiarizing myself with the site and messages but I read this post & thought I'd faint. I'm now 58 years old. I have severe generalized MG & awful bulbar symptoms. I finally started going to the best neurology dept. & University Hosp in NC two years ago. I adore my neurologist & everyone in neurology dept. & hospital. I've always known I had MG from first few symptoms at 34 years old and on. For years, I have been complaining of ROARING in my ears when I BLINK & SWALLOW, esp. when I'm very weak & I feel like my entire head is imploding & pressure in my ears is severe. Not Tinnitus but roaring! All I ever hear is that it's not a symptom of MG (which is why it goes away after plasmapheresis Now I'll familiarize myself with the site and threads/posts. I'll check back in a day or so because I'm really not doing well. But I was stunned when I saw the ear/hearing posting. Sometimes I feel like I just want to put a needle through it to relieve the press. My now compatriots!

[ChrisNJ9]

Originally Posted by SoftTalker

Yep, I get this too.

ENT says MG can and does affect muscles in the ears and hearing too.

Audiologist says hearing can and does for me fluctuate as my MG weakness fluctuates.

WHAT did you say Doc?

I was diagnosed with MG 8/2012. I have had ear problems since 11/1/13. Muffled, pressure, and loud tinnitus. I have MG which is mostly optic. My eyes became paralyzed one straight the other turned inward. Neuro Doc tried Mestinon, but it did nothing. I am on prednisone and it took away all symptoms, but not the ears. Terrible vertigo. I am weening now on the prednisone for the second time.Last time all symptoms came back. Prednisone has caused diabetes, osteoporosis. My neuro doc says MG does not affect the ears. My ENT wants me to look into hearing aids. I am glad to see that I am not the only one with ear issues.

[dyankee]

Originally Posted by Perciphone

I apologize for not first familiarizing myself with the site and messages but I read this post & thought I'd faint. I'm now 58 years old. I have severe generalized MG & awful bulbar symptoms. I finally started going to the best neurology dept. & University Hosp in NC two years ago. I adore my neurologist & everyone in neurology dept. & hospital. I've always known I had MG from first few symptoms at 34 years old and on. For years, I have been complaining of ROARING in my ears when I BLINK & SWALLOW, esp. when I'm very weak & I feel like my entire head is imploding & pressure in my ears is severe. Not Tinnitus but roaring! All I ever hear is that it's not a symptom of MG (which is why it goes away after plasmapheresis Now I'll familiarize myself with the site and threads/posts. I'll check back in a day or so because I'm really not doing well. But I was stunned when I saw the ear/hearing posting. Sometimes I feel like I just want to put a needle through it to relieve the press. My now compatriots!

I, also, am glad to hear that other folks are experiencing these symptoms. I've had tinnitus for several years now. I should also mention that many years ago, before I was diagnosed with hypothyroidism, I also had tinnitus which vanished with successful treatment for underactive thyroid. Now it's back in exactly the same form it took back when. I only have it in one ear for the most part, but when my electrolytes get out of whack I get it in both ears. And I do get intense pressure from time to time, likely when I have a cold or when seasonal allergies are kicking in. It can make you feel like you're losing your mind! I've always treated it as though it was the least of my worries (exhaustion is right up front, all the time), but I have worried that it'll eventually contribute to deafness. Anyone have a comment on that? Two members of my family were/are profoundly deaf.

[bny806]

ahh yes - when I am having those symptoms, I too get the desire to pierce a hole through my ear drums to relieve that awful pressure!!! Misery!