Stories of Hearing Problems and Multiple Sclerosis

While rare, hearing problems can be a symptom of MS and take several forms.

Hearing problems, such as sudden hearing loss and tinnitus (ringing in the ears), CAN be symptoms of multiple sclerosis - even though you may have to work to convince your neurologist of this.

I have put together an article on this subject, although it was hard to find information on this in the medical literature. Read the full article: Hearing Problems and Multiple Sclerosis.

I asked the real experts – people with MS if they had ever experienced any hearing-related symptoms and what they were like.

Here is what they said:

  • Yes, I have twice now I have gone completly deaf. It was like the whole world went “Whoooooosh” and then it was silent, that lasted about 5 minutes both times. The doc said it was a pseudo attack but MRI showed new lesions so, who knows? I also have episodes with extensive ringing and long whining sounds then loss of hearing on one or the other side.
  • I have a recurrent problem that is difficult to describe. A muffled thumping that feels like a spasm in my eardrum. Extremely annoying. I told my useless neurologist and he wanted to send me to an ENT specialist. No matter what my problem is that is his solution, to send me to a specialist. I never bothered to tell him that he is my specialist. I have an appointment with a different neurologist coming up.
  • I have that, and it’s called palatal myoclonus. Your soft palate is twitching and causing your eardrum to thump. It was driving me crazy. My neurologist has put me on Keppra, which is helping.
  • I get loud ringing (but it sounds more like a high pitched whine) in my ears from time to time. It can last from a minute or two to a few hours. Lately my boss has been complaining that I don’t hear very well. I am also EXTREMELY noise sensitive. Can’t deal with it at all and loud bangs send lightening bolts through my entire body. I can’t even describe what it feels like when emergency vehicles whoosh past me on the road, sirens blazing…ugh, it isn’t pretty.
  • I know that the exaggerated startle reflex goes along with the palatal myoclonus, which I also have (it’s a muffled thumping in your ear.) I understand that it’s caused by lesions in the brainstem – I have one in the pons, and another in the medulla. The hypersensitivity is usually called ‘hyperacusis.’
  • I also have had odd ear situations. It usually starts with a high-pitched ring and then loss of hearing for a very short time. It only happens on one side. I had this for many years before my MS diagnosis – I guess it is just part of the a complex maze of symptoms I call the “MS syndrome.”
  • I’ve had ringing for years, and at times a sudden hearing loss that’s lasted less than a minute. After having tubes put into my ears, they started bleeding, something common to adults. I went to another Dr. hoping he could remedy the problem. Unknown to me, he was a neurological surgeon of the ear. He ordered a C-Scan of my ears and brain to make sure that the mechanics of my ears were working. I also had a hearing test, which revealed I had a hearing loss in the high frequencies. Although my ears were fine mechanically, he explained that my ringing or whooshing sound is caused by hearing loss due to damage of the ear nerves. He also explained if you have lesions on your brain leading to the ears, that certainly could explain the ringing or hearing loss as well. Each tiny section of your cochlea has about 20,000 nerves, which die when the hearing is damaged. He reviewed my MRI with me, picture by picture, telling me how each part of the brain functioned, and what it was responsible for. Something no doctor has EVER done for me! He is an exceptional doctor and person! I think if you have prolonged hearing loss and want to get to the bottom of it, you need to see an ear doctor specializing in the neurology of the ear and ask for a C-Scan. My doctor also specialized in balance and dizziness problems, which would be another way of looking for a specialist.
  • One of my first weird symptoms was a sudden buzzing warm sensation in my right ear. Hearing was muffled. It was like somebody had stuck a warm cotton-wrapped buzzing thing in my right ear. Very disconcerting, and it seemed to occupy my whole attention. Since then I’ve had palatal myoclonus, buzzing in my ear, and tinnitis, as well as intermittent hearing loss. I’ve had it tested and there’s nothing wrong with my hearing – in fact, it’s better than normal. I have lesions on my pons and medulla, so perhaps that’s the problem.
  • I have had partial hearing loss in my right ear which was pretty bad….it came on gradually and lasted about 8 weeks with gradual recovery. The neurologist said it was just another MS relapse. When I held the telephone to that ear, the voice was muffled and I could hardly hear it!
  • One of the first symptoms after numbness, optic neuritis, bladder frequency, etc., was my gradual hearing loss. I first noticed it when I couldn’t hear my microwave alert sound, which is high frequency. This was 2 years before my actual diagnosis of MS. Well, it’s got steadily worse over the years and it’s still doing so. Now, I’m profoundly deaf in my right ear and just a little better in the left.
  • I started having troubles in 1986 and was finally diagnossed with MS in 1996. Severe hearing loss that begun as ringing in both my ears was one  of my multiple problems. The ear, nose and throat doctor said there was nothing wrong with my ears, but that it was a nerve problem. My former neuro poo-pooed the MS connection.
  • I totally lost hearing in my left ear back in March 2001. while on active duty in the military, before I was diagnosed with MS. In addition to the hearing loss I began experiencing tinnitus and dizziness. I went to my primary-care doctor who treated me for an inner ear infection, and sent me to an ENT clinic, which confirmed the hearing loss and fitted me for a special set of hearing aids, nothing else! Within 2 months I regained about 80% of the hearing in my left ear, but the tinnitus and balance problems have persisted ever since. It wasn’t until I began experiencing fatigue, cognitive problems and coordination problems in later years that I pushed my new doctor for another ENT referral to find out what was damaged in my inner ear…only then did this ENT doctor order an MRI and told me my inner ear was fine, but I would need to see a neurologist to explain the other findings, including demyelination. I got an official MS diagnosis in 2008.

Bottom Line: It is always helpful for me to read about the experiences of others, especially when a symptom is not always recognized by neurologists as one of the many MS symptoms. Profound hearing loss in MS is rare, but it is important to realize when hearing problems could signal a relapse. 

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