I can't catch my breath

[Linda888]

I can't catch my breath. Diagnosed Nov 2024. I am so, so uncomfortable with this shortness of breath. I can still walk with a rollator, hands and arms are mostly fine, my voice is impaired. What causes the shortness of breath? It is maddening. I have a bipap I use at night, but it is so uncomfortable. What does the bipap do? I have a cough assist machine but I don't really understand how to use it.

Would a nebulizer help with albuterol?

 

[Nikki J]

I am so sorry.

First, would you like me to move this to general discussion so cals can answer too? Only pals are allowed to post in thid subforum.

Breathing issues in ALS are caused by weakening of respiratory muscles especially the diaphragm. This is why clinics monitor svc or fvc and why pals use non invasive ventilatory support like bipap. It sounds like you need to use yours during the day and you may need to change to a portable battery type of support. Some pals who are mobile have theirs on a little cart. Other times they end up getting their power wheelchair to conserve energy even if they can still walk a bit.

Why is your bipap uncomfortable? There are many mask options if that is the issue. Also you could have different masks for day and night if you use a full face mask at night. If it is the settings they can be adjusted

It sounds like you need to talk to your doctor and your respiratory therapist. The latter should teach you to use cough assist.

I don’t know if a nebulizer would help. Ask your doctor. It won’t compensate for weak respiratory muscles but if you also have bronchospasm it could help that

 

[drewidia]

Hi Linda,

I’m too am so sorry you’re dealing with this.

ALS is tough, especially when it affects breathing—that’s the worst part for me. I can handle most other symptoms, but the breathing issues are overwhelming. As Nikki mentioned, speech, swallowing, and breathing are interconnected and respiratory muscle weakness is an unfortunate things. Mine is bulbar - through the brainstem motor network - hence it's all connected.

Here are a few tips based on my experience:

1. BiPAP (or VPAP in my case): It takes time to adjust, especially if you’ve never used a CPAP. Stick with it—it becomes a lifesaver.
   • Masks matter. I use a ResMed N30i nasal pillow mask since I breathe through my nose.
2. Cough Assist: This has been a game-changer for clearing thick mucus from my lungs, which can feel like choking attacks. It uses a different mask, and the respiratory techs can guide you on setup.
3. Nebulizer: It’s not just for Albuterol - a number of things get neb'ed - for me it's used to help the thick mucus. Just ask your docs, and they generally will prescribe and you can try but as Nikki said, it's not a cough assist replacement.
   • Albuterol: Helps with bronchospasms when my chest feels tight. It doesn't help the windedness for me as muscle weakness isn't tight airways like asthma.
   • My main use: 0.9% Sodium Chloride (normal saline): Thins out secretions, complementing the Cough Assist.
4. EMST: Talk to your respiratory or speech folks. I use an Expiratory Muscle Strength Trainer (mine is the EMST150). My speech-language pathologist recommended it to strengthen breathing and swallowing muscles. I was skeptical, but it’s been helpful.

Your experience may differ, so connect with your ALS clinic, doctor, or respiratory team for personalized support. Remember You’re not alone in this.

Prayers for you as well!