Hearing loss with ALS

mildred · 09-21-2009, 09:14 PM

My sister was diagnosed with ALS exactly 1 year ago. She is currently on a vent and has the ability to only move her eyes. Recently, she has begun to lose her hearing. The loss is rapid and severe. It is impacting both ears. I've searched all websites for a possible connection of this hearing loss to ALS but have yet to find one that mentions this as a symptom. Her doctors can't offer any other reason for someone whose hearing was so acute to suddenly show a loss.

I would really appreciate it if someone could tell me if they have experienced the same problem and if so, if there is any help for it.

Thank you!

BethU · 09-21-2009, 09:32 PM

What a terrible situation. I'm so sorry for your sister's plight.

I have not heard of hearing loss with ALS, but I have had double vision while reading since the beginning of my symptoms, and it is steadily worsening. No one has been able to explain it. They say that ALS does not affect the senses, but obviously, in some cases, it does.

I pray you find an answer to this, and doctors are able to reverse it.

mildred · 09-21-2009, 11:22 PM

Thank you very much for your response and your prayers. We are hoping that this might be a pressure issue somehow related to being on the vent. There is very little information on the web regarding a possible link between vent issues and pressure in the ears. We are grasping for anything that might provide a solution other than just another ALS symptom diagnosis.

I'm sure your double vision must be equally frustrating. It is bad enough to deal with all that is known to come with this insidious disease let alone the added rare problems.

You will be in our prayers.

hopingforcure · 09-22-2009, 08:04 AM

I have pressure problems from my ears. And believe it has something to do with nuero-muscular issues in that area. Maybe your sister has some spasicity which is affecting her hearing, that can worsen and retreat. Sorry tha she is experiencing this troubling symptom, hope you can get some answers and solutions.

MarianneS · 09-22-2009, 09:55 AM

I met a woman recently who said her mother lost her hearing with ALS. I cannot talk and she thought I couldn't hear also, but I explained I could. This disease manifests itself in so many different ways.

momsgirl · 09-28-2009, 08:51 PM

My mom lost her hearing completely in one ear for no apparent reason then a few months later was dx with ALS. One year later she hasn't regained any hearing and is now unable to talk. Tough.

handinhand · 10-01-2009, 02:57 AM

I noticed before I was dx that I was having hearing problem that felt like when you are up in the mountains and say,[My ears need to pop] but I wasn't up high. I could be just sitting having a cup of tea. Shopping. Just at odd times... I have been dx for about 8 months now. I haven't noticed as much lately...