Hearing loss in Myasthenia gravisPosted by dev-keshav on June 26, 2022 at 3:34 pm
I was wondering if hearing loss is common with generalized MG, and would like to know what others have experienced. Just over a month ago I started taking azathiaprine and prednisolone in addition to pyridostigmine. A day later I felt as if I had an ear infection, and then suddenly a day later lost total hearing in the one ear. An ENT specialized examined me and could not find a cause for this. He said that it was possibly my Myasthenia or the azathiaprine. A CT scan showed no cause either. I’m puzzled by this and would appreciate any opinions or comments. Thanks
MemberJuly 6, 2022 at 7:37 pm
I have poor hearing due to an acoustic neuroma and general aging, not because of medication. I took azathiaprine for ten days and it made me so sick that I would believe it could cause anything, including hearing loss. I’m doing great on mycophenolate as an immunosuppressant, so there are certainly alternatives to azathiaprine.
MemberJuly 7, 2022 at 5:18 am
Thank you for your post. I wasn’t happy to take the azathiaprine either but I was really struggling at that time. It seems to have helped me, but I will ask my neurologist about the alternative you mentioned. The Ent specialist ruled out acoustic neuroma. Now just have to get used to the strangeness of not knowing where sounds are coming from and poor hearing.
MemberJuly 7, 2022 at 6:19 am
I hope you have at least been evaluated for hearing aids. They really helped a lot, even though I have close to zero hearing on the side with the neuroma. It is weird to lose the directionality of sound, but the hearing aids improved that. Of course if you really have zero hearing in that one ear, hearing aids cannot help.
Other than the hearing issue, are you tolerating the azothiaprine? I know, that’s like asking “Other than that, Mrs. Lincoln, did you enjoy the play?”
MemberJuly 7, 2022 at 1:52 pm
I have hearing aids, but the one ear is totally deaf. I am managing with the azathiaprine now, apart from stomach issues, it seems to be helping. But I”m tapering off prednisone for 6 weeks and will then stop. I wonder if the azathiaprine will be a problem then. I’m 69 years old, strong in many ways and can still appreciate the ‘play’. It’s a way of looking at life itself. I do not have a local MG community whom I can relate to, so this is a good forum to learn and share. Thanks.
MemberJuly 8, 2022 at 3:59 pm
I usually lose my left ear hearing during winter. I discovered the follow links some time ago.
MemberJuly 8, 2022 at 5:10 pm
Dear MG friends,
I am also facing hearing loss, but in stress situations or when I am having much muscle weakness. I am also facing continuous voices in my ears. Is anyone facing migraine also like me? Please share how you manage your life routine? I am 33 and I have to work for my family but my MG always loses my confidence level to zero when People used to laugh at my eyes.
MemberJuly 13, 2022 at 9:31 pm
Thank you Lionel. I have tried to educate myself about MG for several years, and these articles have opened my eyes (though not my ears).
I am going to call my audiologist and find out if my recent tests might need to be redone with the specific tests for MG related hearing loss that are described in the articles you have shared.
MemberJuly 8, 2022 at 10:21 pm
Azathioprine, along with pyridostigmine, has been a game changer for me. I have experienced no hearing loss, and all previous symptoms are well under control. The azathioprine was added after a serious myasthenic crisis event that had me in the hospital for 14 days. During hospitalization I received the IVIG treatment and was also put on prednisolone, but was able to wean off of it after about six months.
MemberJuly 14, 2022 at 1:17 pm
When I read your post , I had a quick look at the authors name,honestly it could have been me.What you describe is my own exact situation.I guess we are the lucky ones.I am very well controlled apart from the fact that my kidney readings are not the best.
MemberJuly 9, 2022 at 3:30 am
<p style=”text-align: left;”>Hi Rudolph, I was actually in quite a bad state when I was prescribed azathiaprine and prednisone to supplement pyridostigmine. I am also tapering off the press until I stop them. But my MG symptom’s are being helped. As the doctors said, it was only guesswork on the cause of the sudden deafness. With our illness, so much can affect us, and every single one of us is different. So, we just have to learn and recognize our own situation.</p>
MemberJuly 11, 2022 at 3:00 pm
Hello MG friends ,
I wear hearing aids and can barely hear from both of my ears and it is due to MG, I was on Azathioprine and Prednisone for longest period of time and was going for IVIG monthly. I stopped taking Azathioprine and Prednisone about 6 years ago , due to side effects ( elevated liver enzymes and weight gain) . Stopped IVIG about 1.5 years ago as the effects were only lasting about 3 weeks and I was having to go back for infusions sooner. At this time my MG symptoms have been well controlled with Cellcept, Mestinon and Rituximab infusion every 4-6 months.
Please make sure to get your liver enzymes checked every couple of month ,while on Azathioprine
MemberJuly 12, 2022 at 2:51 pm
The same thing happened to me, but not as badly (I still could hear a bit). However, it never occurred to me that it might have something to do with Myasthenia gravis (I have ocular Myasthenia). Blaming it on the air conditioning and high humidity (I’m retired and live in Bali, Indonesia), I put on a t-shirt and socks at night and took extra vitamin C with zinc, which altogether helped.
MemberJuly 13, 2022 at 3:32 am
Hi Thomas, it was only a possibility that MG might be the cause because hearing loss is known to be linked to our illness. But again, we are all different and the ENT specialist did say it may be temporary. So I do hope that we both improve. I know Bali is a beautiful place . Have a happy retirement.
MemberJuly 14, 2022 at 5:43 am
what I forgot to write is that I am “ear healthy” now with a normal hearing. If I have the feeling that the “ear infection” could come back (it happens from time to time), then I take two vitamin C tablets with zinc (100 mg each) as a precaution, which helps.
I also took during the time when I had hearing problems
Ibuprofen (400 mg each) once or twice a day (over a period of about two weeks), which also helped.
Identical to your case, I saw three doctors (two of them ear specialists), all of them came to the conclusion that everything was fine with my ear, which supports your thesis that the hearing problems could be related to Myasthenia.
I hope you will be able to hear again soon and I wish you good health.
MemberJuly 14, 2022 at 2:29 pm
Hi Thomas, thank you for your good wishes. I think it’s a good idea to take the vitamin C and zinc. I did take them when Just before being hospitalized with covid 19 just over a year ago. So I’ll start again. All the best.
MemberJuly 13, 2022 at 11:44 pm
many years ago I had difficulty hearing could not find anything on hearing loss for many years then I tried looking it up a couple of years ago and bingo they had something on hearing loss and MG I know it was from my MG as somedays I could hear very well and others days I could not. I am on Soliris right now but my doctor wants me on Vyvgart no if and or but about it. Not sure if I will as I react to everything (badly)
MemberJuly 18, 2022 at 3:37 am
I’d be surprised if it turns out that MG can cause hearing loss. Since MG only affects voluntary muscles, and I don’t know of any voluntary musculature in the ears, it seems reasonable to suspect an MG med, or else another condition or disease.
MemberJuly 18, 2022 at 12:49 pm
MemberNovember 18, 2022 at 10:48 pm
I am very interested in my hearing loss too. The hospital doctors gave it to me, at the first of 5 2020 hospitals …. so I had 100% hearing and speech loss for 4 months … and my hearing is only to 70% back.
I started having MG symptoms on 7-25-2019 … and no doctor could diagnose my disease. I was finally diagnosed with MG on 3-24-2020 by a third floor nurse at the second hospital of 5 in 2020. I tried and tried ….. to get anyone to see me about my TOTAL HEARING LOSS .. that happened after 2-4-2020, when I went to a BANNER hospital urgent care … to get a diagnosis of what my health problem was (MG). No one knew … of the hospital doctors or nurses I asked on my white board scribbling questions. Some said it was because I was given ANTIBIOTICS .. after URGENT CARE gave me a CODE RED (accute HYPERCAPNIC RESPIRATORY FAILURE due to ANESTHESIA given to an undiagnosed patient) on 2-5-2020 and sent me to their ICU where I got three PNEUMONIAS … and three ANTIBIOTICS to cure them.
So some in hospital said … because of ANTIBIOTICS, other said ANTIBIOTICS and the MORPHINE and FENTANYL sedatives I was also given, another said that there are actually over 200 drugs that can given a patient temporary or permanent OTOTOCITY HEARING LOSS. Because the CORONA PLAGUE from CHINA soon arrived in Arizona … the following month, no doctor would see me in the hospital and no ENT doctor would allow any of the three hospitals 2-4-2020 to 6-11-2020 to have them send me to the doctor’s office by medical transport for an appointment.
Finally in late June 2020, the third hospital released me on 6-11-2020 and set up two appointment with hearing doctors. Now that I was off ANTIBIOTICS, I could hear if anyone could talk LOUD six inches away. But I am better now at 70% … except at church, where pastors were never taught to project .. or correctly use a mike. Both doctors tested me and confirmed that I still had hearing loss … but because I was no longer TOTALLY DEAF, and would not be seen when DEAF, they could only guess as to why. My new NEUROLOGIST gave me some MYASTHENIA GRAVIS DANGEROUS DRUGS handouts … and the ANTIBIOTIC TOBRAMYCIN and also BETA BLOCKERS and STATINS that I was given are all the MG dangerous lists.
I have had only the original 5 hours for 5 days of IVIG .. when finally diagnosed 8 months later. I am currently on 180 MGs of MESTINON and 2000 MGs daily of CELLCEPT. Their dangerous drug STEROID PREDNISONE gave me MEDICALLY INDUCED DIABETES II (which is now in REMISSION) after the PREDNISONE was killed. So I still have hearing loss and ACUTE ONSET INSOMNIA …. so are my problems of lousy HEARING and lousy SLEEPING … due to the side effects of MG or MEDS? WONDERING ALSO ???
MemberNovember 26, 2022 at 6:56 am
Just a quick reply … as I just got back, and have a internet connection again.
To DEV … You do not need a LOCAL support MG group to join one. I belong to four MG SUPPORT GROUPS. I contracted MG on July 25, 2019 and on Feb. 4, 2020 after being undiagnosed for 6 months, I went to a BANNER HOSPITAL URGENT CARE Center to find KNOWLEDGEABLE DOCTORS, but they could not diagnose my MG. So on Feb 27, 2020 they sent me by a $1400 ambulance ride to a Dignity hospital, and finally on March 24, 2020, I got my MG diagnosis from an EXPERIENCED HOSPITAL nurse, who got me a NEURO EXAM and Antibodies tests. THEN COVID-CORONA HIT !!!
So once I knew I had ACUTE OCULAR and GENERALIZED MYASTHENIA GRAVIS, I googled my disease like CRAZY … and found 4 MG SUPPORT GROUPS to join. They are wonderful, and they have connections to other groups too. We still only ZOOM, and our members ZOOM across state lines. In Arizona, we have members ZOOM into our meetings from CALIFORNIA, TEXAS, COLORADO and NORTHERN ARIZONA SKI areas. Our support group moderators know of other MG support groups, and emails us links to ZOOM to important seminars and talks that groups in California and Atlanta have with guest speakers.
So you do not have to find a LOCAL MG GROUP to meet with. I have four ZOOM groups … one in East Phoenix, one in west Phoenix, one back home in Minneapolis, and one in London at http://www.myaware.org .. which has a great website with downloadable handouts to give to doctors and medics, who don’t know what MG is. So you are not alone. I had two ZOOM last weekend with Minneapolis and East Phoenix. The moderator of a Tuscon Arizona MG group was on the ZOOM and told us of a LIVE MG meeting they had coming up.
I am on 180 MGs of MESTINON and 2000 MGs daily of CELLCEPT. They tapered me off PREDNISONE as it has horrid effects. I have never had to take that AZA… drug, so I don’t know about that MED that people are discussing above.
I just got back in town to my computer and one of the website monitors, Jodie Enders, I believe it was, sent me an email, that I have not had time to fully read and digest yet … saying new studies may indicate that having MG may cause hearing issues … and that it may not be all from OTOTOXICITY, due to TOBRAMYCIN, SEDATIVES, and ANTIBIOTIC side effects. After I was finally released from the third hospital 4 months later, I was tapered off being fed ANTIBIOTICS and SEDATIVES, and could hear if someone talked LOUD 6 inches away. Only then, could I finally get an ENT DOCTOR to see me at his office, but because I could now hear a bit, he tested me, but could not determine how I got hearing loss, as it was partially restored, so he could only guess at possibilities. I wish you all well.
MemberDecember 29, 2022 at 3:41 am
Thank You everyone who has posted about hearing loss and MG. I have learned so much from you all and had so many questions answered about hearing loss and ringing in my ears. What an eye opener that it could all be related to the MG.
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