Ear issues

[initforever]

Is it possible for ALS to effect the small muscles around the tube and ear drum?
My PALS is experiencing a great deal of discomfort over the past 2 months of pressure and popping in both ears but mainly the left. This is occurring all the time with no relief and its driving him nuts. He has been seen by ENT and no sign of infection, ear pressures are normal, and it has been suggested to having tubes put in to see if it brings some relief. The Dr. suggested that it may be ALS related but unusual.
We are wanting to know if anyone else has experienced this "new" symptom and what was done to help relieve or at least make it more bearable?
He was diagnosed with truncal onset and has progressed with both limb and bulbar effects/symptoms.

 

[lynneb]

I'm bulbar onset and developed autophony/PET after losing ten pounds quickly. Sounds are amplified and I can hear my own breathing and occasionally my heartbeat. Other people with it may experience slightly different symptoms.

 

[lgelb]

Does he use a nasal steroid? As you know, muscles everywhere are dying and passageways that the ENT can't see can be opening and closing differently than they used to be. I would try that first [morning and night] before considering surgery.

I would also check out his pillow and the angle of the upper part of his bed and do some tweaking. If his sleep position is relatively immobile, there can be more pressure on the ears than before, even lying on his back. We used a pillow with a bit of a shoulder cutout for reasons of the ears and shoulders both. Does he use BiPAP? Depending on his setup, you can also try cushioning his ears with lambswool, paper tape or foam, either way.

Also, if he does use BiPAP, popping ears can mean the settings should be adjusted, but I won't go off on that as yet since IDK if he is on BiPAP. Also look at filters and humidification (room and/or machine).

Best,
Laurie

 

[initforever]

Thank you for the quick responses. Have spent 2 weeks on nasal steroid with no change except worse. He is on the Triology and has been since early Dec. all night and 4-5 hrs daytime. He is propped up with a wedge pillow along with others since Dec. Total weight lose since diagnosed (Oct16) has been 57 lbs with over half of that in the last 4 months. He is scheduled for a REG in 2 wks. Laurie, am I understanding correctly that you had "luck" with the only the head elevated? Also could you explain how to cushion?

 

[lgelb]

I was saying that assuming he has a hospital bed, changing the angle of elevating the head/back should help since this is a pressure thing in part. If he does not have a hospital bed, I'd get one. Wedge pillows affect the neck, so you can't do everything you want to with the head by using a wedge.

You want a foam pillow, likely, so the ears don't get mashed...you can buy or cut to size lambs wool fill from a fabric store or on line, and wrap it around the ears, or start with some paper tape from the drug store.

What kind of mask does he use? The full face kind if not just right can cause an extreme pressure seal that can affect ears.

What are his Trilogy pressure settings? What is the humidifier setting and are all the filters new or clean?

 

[gooseberry]

My husband had ear issues. I have seen several others over time post about this problem. Maybe it is a symptom a small percentage of people have