ALS and chronic nasal congestion

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Mary Helen Barr

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Has anyone noticed constant stuffy nose with ALS? Living with ALS can be unpleasant enough, but my father also has severe nasal congestion. Nose spray was great for a while, but now it doesn't work good enough or long enough. It's hard enough for him to breathe with his head hanging down all the time, but now the nasal congestion just compounds the problem.
 
Hi Mary,
I had not made the connection before, but since you mentioned it I also have had this problem for a long time myself. It's seems like at least 5 months of constant congestion. I have 2 different prescriptions for nose sprays, but always seem to fall back on Afrine or whatever it's called , because it works so quick. The problem with it is it has a rebound effect. If you use it too much it will cause congestion. I try to space out it's use to only when I need it the most.
I also had to go to a full face mask for my Bi-pap breathing machine due to the nostrils being congested all the time.
Maybe others can let us know if they too are having this problem?

God Bless
Capt AL
 
What may be happening is that due to the fact that the seal from your nose to your mouth is impaired and not working as it used to - bacteria from your mouth is finding it easier to get into your sinuses causing congestion and infections.

Just like when many PALS try and blow up a balloon and air comes out your nose.

I often sneeze when I eat now - and some times when I blow my nose I will see bits of my earlier meal (yum yum).
 
You paint a really pretty picture - at least you can still blow your nose! lol
I have always had trouble breathing out my nose, so now it gets to be an issue of different proportions trying to use a bipap.

My nasal congestion is definately getting worse.
 
Oh MY. Now there's a picture I could have done without in my mind.:-D
God Bless
Capt AL
 
Hey - we are all friends here - and grown ups.

I remember one of the first times it happened - I had had spinach earlier that day - it was like "What the hell is that?!?!"

I got water up my nose last week and has a sinus infection - don't even get my started on that
 
Hey, at least we are talking about the top end. It could be worse. :-D

God Bless
Capt AL
 
Hi guys. I use Nasonex. It's prescription and works fairly well for me. It's supposed to be non addictive as well. AL.
 
My doctor told me no more than 3 days with over the counter nasal spray and the one I was using suggested not to use more than 3 days because of the adverse effect. I use a saline spray and that does help some. Rhonda
 
We spent the mornign discussing this very thing with our hospice nurse----and are now getting the saline nose spray and will try the 'afrin' spray as well. Also though, it is starting to be allergy season and we realized my husband may be having a touch of his usual spring allergy...so we are going to try Claritin D and see if that helps.
We just dread having to switch from the nose pillows to a face mask, but may have to---he has been suffocating a few times.
Beth (CALs to husband Shannon, diagnoseded 8/04)
 
I don't know from experience, but giving that your dad has problems holding his head up, how about something to keep the nasal passages open after the spray. How about the Breathe Right nasal strips..maybe even the kind with Vicks on them. Or, a Vicks humidifier. I would think, the best person to ask about this would be an ENT doctor.

Jen
 
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