Breathing

[HeatherFeather]

DH sometimes has a hard time getting those words out - or too many at a time - then he chokes. He doesn't have a bi-pap or any sort of aid with his breathing. He sleeps well, breathes normally but when he's awake, he's always complaining of a stuffed up nose and tries to breathe through it, and starts to panic and has to turn the fan on full-blast. I tell him to just breathe through his mouth but he keeps insisting on breathing through his stuffed-up nose. I give him Advil colds and sinus which seems to help abit.

He's eating ok (but no appetite so he's forcing himself to eat - lost about 15 pounds since August) although certain smells completely turn him off and choke him up and he has another panic attack.

Just wondering about bi-paps, eating tubes, what should be next?

Have a happy day, everybody - huggs from Heather xoxoxo

 

[Atsugi]

Advil Cold and Sinus contains only 30mg of pseudofedrine. You could switch to Sudafed and go up to 240mg.
Ask your doctor if Xanax, Klonopin, or Ativan would prevent the panic attacks.

 

[Graybeard]

15 pounds in 3 months is a pound a week - just what I was losing before going on the teat (peg tube). Now I am gaining two pounds a month on 6 cans of Boost+ a day. I would be gone before now without it.

I put on the bipap full face mask whenever I lie down. It's great.

 

[JimInVA]

My PALS was having difficulty staying awake during the day. She'd need multiple power naps at work and would actually fall asleep in the middle of a conversation at night. She woke most mornings with a severe headache. And she had been steadily losing weight, week after week after week. Finally referred to a neurologist at Johns Hopkins, he immediately ordered a BiPAP for her. He also said that her weight loss was likely due to the buildup of CO2 causing her body to work as if it was in a marathon each night... and burning calories she didn't have to give.

Once on the BiPAP, her headaches disappeared. Weight loss halted. And she no longer felt drowsy or had a need for naps during the day. Yep... it made an amazing difference for her...

Jim

 

[HeatherFeather]

Advil Cold and Sinus contains only 30mg of pseudofedrine. You could switch to Sudafed and go up to 240mg.
Ask your doctor if Xanax, Klonopin, or Ativan would prevent the panic attacks.

Hi Atsugi!

Sudafed sounds like a better option - shopping tomorrow so I'll pick some up - thanks!

About Ativan - he already takes one or two a day (1 mg/pill)

 

[davbo49]

well is this what's next for me. another thing i need to talk to my dr about.

 

[HeatherFeather]

Advil Cold and Sinus contains only 30mg of pseudofedrine. You could switch to Sudafed and go up to 240mg.
Ask your doctor if Xanax, Klonopin, or Ativan would prevent the panic attacks.

Hi Atsugi!

Sudafed sounds like a better option - shopping tomorrow so I'll pick some up - thanks!

About Ativan - he already takes one or two a day (1 mg/pill)

 

[HeatherFeather]

oops - trouble with internet - replied twice - sorry Atsugi!

 

[gooseberry]

I would be interested in his pulmonary function. Anectdotally it seems fine but has he had testing? Breathing muscle decline and trying to breathe uses lots of energy

 

[dalvin]

Agree with gooseberry, I didn't realize my breathing was compromised but at my first clinic visit it was down to 62 percent on the fvc. Much lower now

 

[affected]

I would be interested in his pulmonary function. Anectdotally it seems fine but has he had testing? Breathing muscle decline and trying to breathe uses lots of energy

Ditto that

Seriously though I do think his breathing needs attention before anything else. Bulbar issues can cause the nose to kind of collapse making it so difficult to breath through it. For a while puffers and other meds will help, but not for good ...

 

[lgelb]

I wouldn't rush to up the decongestant via Sudafed. That compound itself increases heart rate, BP, work of breathing. Not something I would want to dive into w/ someone experiencing breathing/panic attack issues. And drying secretions can create its own vicious cycle.

The question is more what is causing the congestion -- allergies? Treat them w/ a nasal steroid (which I would try anyway -- it's OTC and a good drug) and/or an oral antihistamine like fexofenadine.

Or if it's dry air, use a humidifier in the room wherever he is. An essential oil diffuser might add some humidity and some anti-congestion activity as well. We run our humidifier 24/7 even now that our PALS is gone. If you have floor registers, there are solutions that attach to them.

All these are things I would have on the list before Sudafed, FWIW.

 

[HeatherFeather]

Ditto that

Seriously though I do think his breathing needs attention before anything else. Bulbar issues can cause the nose to kind of collapse making it so difficult to breath through it. For a while puffers and other meds will help, but not for good ...

Tillie

Hey Tillie,

He was tested for the first time at the beginning of November - his first visit to the Neuro Center. His breathing was fine - they didn't give us test details, but we didn't know we should ask for %'s or anything - they just said it was fine. Next visit is January 5th but I feel it should be earlier. He sleeps really well and his breathing is normal. We bought a baby monitor and I listen to it as I am on my computer in the early a.m. He's breathing thru his nose with no problem during the night. Seems like when he's awake, then he starts sniffing - wondering if it is due to his worrying about it. When he's awake, he is constantly doing these never-ending dry sniffing noises and snorting - but when he's sleeping - breathing thru nose just fine!

 

[HeatherFeather]

I wouldn't rush to up the decongestant via Sudafed. That compound itself increases heart rate, BP, work of breathing. Not something I would want to dive into w/ someone experiencing breathing/panic attack issues. And drying secretions can create its own vicious cycle.

The question is more what is causing the congestion -- allergies? Treat them w/ a nasal steroid (which I would try anyway -- it's OTC and a good drug) and/or an oral antihistamine like fexofenadine.

Or if it's dry air, use a humidifier in the room wherever he is. An essential oil diffuser might add some humidity and some anti-congestion activity as well. We run our humidifier 24/7 even now that our PALS is gone. If you have floor registers, there are solutions that attach to them.

All these are things I would have on the list before Sudafed, FWIW.

Morning lgelb, no allergies; he told me he absolutely doesn't want any kind of nasal spray; we watch TV in the lower room and it is quite humid so we usually need a dehumidifier in the spring and fall, which we haven't had on for quite awhile now.

 

[Wondering Runner]

Might a quick call to your ALS team nurse be the best place to start? Or e-mail your neuro team physican who you're most likely to communicate with effectively? Sinus issues come and go for me with air current, humidity and whether or not I am dehydrated within. Cold meds could even complicate his stuffiness if his sinuses are dry and swollen. Of course you're with him and you each hold the clues so an elaboration via e-mail to your team might help tease this out.
Cold medicine winds me up, prevents me from sleeping, and is my last resort for congestion. Even in Seattle here I have had stuffiness due to our cold snap so I have turned the heater down in an attempt to keep from aggravating my sinuses. It doesn't sound like he would be up for a neti pot (very hard for me now with choking, but due to stuffiness that was actually dry swollen sinus cavities I cautiously went through with the process—bingo!). A fan could make him worse but if it eases his anxiety maybe worth it to him. Could he tollerate a warm squirt of saline to moisten and potentially rinse out anything that might be aggravating the condition? Am I being redundant? Apologies.
Over all FGELB's view is mine. This disease is incredibly complex and every day there seems to be another layer of challenges.
Ideally, his issues clear up without complications. Best health to you both.