Voice changes, again

[EricInLA]

About 8 months ago, I posted regarding voice changes I was noticing.

At that time I was noticing for the first time a weak, raspy, and hoarse voice, plus fatigue. Especially at the end of the day. It was very concerning because prior to that my disease course had been all limb-related, primarily RUE. I was hoping it was allergies. Some here suspected breathing issues, but I got checked out with the respiratory specialist and everything was normal. Then by late October, the voice problem was GONE. I felt fine. At my ALS clinic visit in late November, I explained this to my neuro, along with my theory that perhaps reinnervation was occurring here. He was skeptical, saying ALS symptoms are not "transient", but didn't have any other explanation. He did note that my right hand had gotten significantly more weak and atrophied, which was obvious.

In the last few weeks, the voice thing has returned, along with the salivation that I had experienced last summer, and perhaps some minor swallowing difficulties. I'm back to the continuous sugar free lozenges (good suggestion Laurie) and stress about this new disease phase that I don't want and will never be ready for.

So, I'm curious about a couple things: 1) Has anyone experienced a "remission" of these throat symptoms for a period of months? I'm back to my layman's reinnervation theory. I am a slow progressor, so I realize that may play into things, and 2) Is it worthwhile to see an otolaryngologist at this point? Or should I just bring it up at my next clinic visit in a couple months? Are there tips/treatments that would be good to do right away?

 

[Nikki J]

I have similar symptoms seasonally and I am sure they are allergies. I had them before and they respond somewhat to allergy medicines though not completely.

if it is indeed bulbar then nuedexta would be an appropriate step so I would probably try to get clarity sooner rather than later. Have you at least done a trial of anithistamine and nasal spray?

 

[EricInLA]

Thank you Nikki - your reply is helpful and peps me up a bit. I would love for this to be merely allergies. I have not tried an antihistamine nasal spray so I will try that. Can't hurt to try!

 

[lgelb]

Astepro is the OTC antihistamine nasal spray, that is faster-acting so you can use it when you need it and see if it helps.

Another option that you need to use consistently one or twice daily for it to work over time, is nasal steroids (triamcinolone is the least irritating, also sold OTC).

 

[Nikki J]

What I do is an oral antihistamine ( generic zyrtec in my case) and flonase sensimist spray which is stronger than plain flonase. Different things work better for different people and can change with time. Allergies are very common here - so much it is a topic of conversation. other thoughts are wearing a mask outside and some kind of air purifier. I hope this helps Eric

 

[lgelb]

It is indeed different for different people I used to take oral antihistamines but do not any more. Zyrtec is considered the most sedating of the orals, but slightly more efficacious than some.

It's also good to make sure furnace, room humidifier, and xPAP filters are clean and replaced on schedule. For furnace filters, for virus control as well, you can select the highest MERV filter your system will tolerate. The best commercial air purifiers have HEPA filters and no ionizer. And there are some fans that also have a HEPA filter.

Or make a Corsi-Rosenthal air cleaner from a box fan + filters.

 

[MupstateNY]

A few months before I got formally dx'ed, I went to ENT who prescribed Protonix for GERD. It was helpful for my hoarseness.I don't know if I was unusual.

 

[KimT]

ENT at Mayo said my GERD was bad. I was already on a PPI (which I hate for many reasons), but she wanted to double it. My voice has been hoarse off and on for over 30 years. I got allergy tested last year. No food or airborne allergies.

I'm chemically sensitive. I have a hospital grade air purifier in my bedroom and a new central A/C unit that also has a built-in air purification system. I use the 4 inch special filters that cost a ton of money but they really help keep the dust and pet dander at bay.

I don't have carpet or any type of fabric furniture. Just leather except for kitchen chairs. I put dust mite covers on all pillows and mattresses.

When I walk in other homes (or roll in other homes) I can tell you straight away if I can stay or if I have to leave. I cannot be in a house with smokers, even if they smoke outside. I cannot tolerate any perfume or those plug-ins that stink. I get dizzy if I walk in a place with strong odors. Food smells don't bother me. Our outdoor pool doesn't smell like chlorine but our indoor one does and I can't go in that room.

 

[MupstateNY]

Kim, same here for perfumes. Also I cant wear synthetic fabrics.

An ent gave me Azelastene instead of flonase.

Are there trees and plants with allergens near your condo?

A friend worked in a chemical factory as a quality control engineer, and went through a health crisis. She was able to return to normal by adopting a macrobiotic diet.