Gasping for Air

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Patchesgus52

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PALS
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US
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Fl
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Margate
Last nite I woke up gasping for air it felt like my throat closed. This last for about 5 to 8 seconds. Then for the next 3 seconds it opened back up and I was breathing normally. This is the first time this has happened. Is this Als related. Take Care
Patrick
 
>Last nite I woke up gasping for air it felt like my throat closed. This last for about 5 to 8 seconds.

I have this happen 1-2 times per day for about the last month. I attribute it to pollen or something like it. Not really allergies, but environment related. Never happened before so probably ALSish.
 
If it only occurs when you sleep or just doze off during the day ("Just resting my eyes!") it is sleep apnea. ALS can cause shallow breathing during sleep (hypopnea), obstructive sleep apnea when the soft tissue of the upper airway collapses with the muscle relaxation of sleep, and/or central apnea where the motor impulses that trigger a breath are affected by ALS and the muscle relaxation of sleep. BiPAP is the treatment for all three types.
 
Diane, Max thanks you. I have a sleep test on May 1st. Last nite scared me a lot. I now what is probably is I won't panic next time. That's the beauty of this site Knowledge. Take Care
 
>That's the beauty of this site Knowledge
ditto that!
 
You know what is weird about my dad's AlS. It will be two years since his diagnosis next month. He has limb onset. He used a bipap at night in the fall of his first year. He tolerated it very well considering he has a tendency to be claustrophobic. He only used it for a few months and he didn't need it anymore. He still has it on hand if needed. I don't know why his breathing would've improved. He is in the clinical trial of Acthatar now but he wasn't on anything when he pulled off the bipap. He voice even doesn't get quite as hoarse anymore. We thought he was going to lose his voice totally awhile back.
 
Hi, Kim --

>He is in the clinical trial of Acthatar now but he wasn't on anything when he pulled off the bipap.

Do you think the Acthatar helped?


>He voice even doesn't get quite as hoarse anymore. We thought he was going to lose his voice totally awhile back.

Well we'll accept any miracles that come our way!
 
my neuro team and pulminary folks are looking at this as i have shortness of breath and a while ago was diagnosed with sleep apnea. current thoughts are that it might not have been apnea but some of the early ALS stuff affecting breathing.

when it rains it pours.
 
>when it rains it pours

Boy you can say that again -- just had a breathing incident like never before. took 1/2 an hour to subside :-(
 
I've refrained from adding to this because my ALS breathing issues are compounded by another, just as deadly lung disease, emphysema, but can tell you that your doc can prescribe a rescue inhaler that will help to relax and open up the lungs and bronchial tubes. Mine is proair'hfa. My va doc is also ordering a nebulizer for when it gets bad. You don't have to have a lung disease or allergy to benefit from the rescue inhaler.
 
I can not sleep laying flat or I get short of breath. I sleep now pretty much sitting up. My Pulmonary Doc said my breathing difficulties are neuromuscular related. He said I'd qualify for a BiPap... haven't given into it yet. I use Symbicort twice a day. I do not have any COPD, my chest XRay is clear. I think the Symbicort helps.
 
my neuro team and pulminary folks are looking at this as i have shortness of breath and a while ago was diagnosed with sleep apnea. current thoughts are that it might not have been apnea but some of the early ALS stuff affecting breathing.

when it rains it pours.

But ... But apnea IS one of the ALS things that affect breathing. Very confused.
 
Typically, that is the ALS docs bringing everything into their turf that could be ALS-related. It amounts to the same thing, since after all "apnea" just means cessation of air flow. ALS clinics seldom delve into the complexities of obstructive sleep apnea vs. centrals. Pragmatically, if someone is filing for BiPAP reimbursement and already has a CPAP, the diagnosis codes and notes need to be crystal. Anyway, as I've said before, every MND pt but particularly anyone who does or might have a pre-existing CSA, OSA or mixed apnea superimposed on MND should be adjusting their own settings because neither a sleep clinic nor an ALS clinic is set up to do the ongoing titration needed.
 
Patrick. It sounds like you may be having laryngospasms. I think it's when your vocal cords spasm and block your airway for a few seconds. My husband had a few too. The key is to try not to panic and to breathe through your nose when this happens and until it passes. Scary I know. Take care. Yasmin.
 
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