breathing spell

[ALS caregiver]

Hows anyone experienced episodes where it looks to caregivers like person with als is having a spasm or something in chest or face-cant really respond if you ask them questions. Oxygen drops to 80's then chest hurts. After a few seconds or minutes oxygen recovers head and chest hurts and feels naseauted for a bit. She is having these 1 to 3 times a week and neurologists just seems to shrug it off but for her it is pretty scathe.

 

[gooseberry]

My husbands oxygen will drop into the 80s...we use the sip and puff or cough assist to bring it back up. What you are describing sounds like spasms or a mucus plug maybe. I would not let it drop with the doctor. I would get an appointment.

 

[Diane H]

Sounds like laryngospasm. You’re just sitting there minding your own business or even snoozing when suddenly you can't breathe.This isn’t uncommon in ALS. You fight to inhale but nothing happens. You can’t take a breath, can’t call for help, and panic crashes over you. After a minute that seems an eternity, you finally suck in a thin, wheezing, tiny “eeee” breath. Slowly the spasm eases

The only thing I’ve found that helps me through these is the hard-learned lesson that they’re intense but short-lived. You’re not choking, you can get some air, and the spasm will ease in just a moment or two.
Caregivers can help by giving calm reassurance, gentle back rubbing (not whacking) and other support in riding out the spasm.

I would not assume that it is laryngospasms though. I would disscuss it with her pulmonologist rather than her neurologist. If she doesn't have a pulmonologist yet it is time to get one. Neurologists aren't much help once breathing is affected.

 

[texastracy]

I have had these. It's hard but try to stay calm, and tilt the head back. Try to breathe through the nose, it helps the spasm release. The spasm can last up to 90 seconds which feels like a lifetime. Mine don't happen as much as they used too.

 

[MaxEidswick]

>I would not assume that it is laryngospasms though. I would disscuss it with her pulmonologist rather than her neurologist. If she doesn't have a pulmonologist yet it is time to get one. Neurologists aren't much help once breathing is affected.

Ditto that!

 

[Barbie]

definitely move on the Pulmno! If the shrug is your Neuro's reply to symptoms or trouble she is having--time to think why you see this person. does mom have a clinic she attends with other specialists? I found that the neuro was the least helpful and all the others specialists a re the most helpful with managing ALS. In fact, we now only see our internist and a pulmonologist.

 

[ALS caregiver]

Thanks for responses. I am her mom. My daughter is 37 and has MS and ALS. This forum has a lot of useful info. She was diagnosed 4yrs ago but seems to be progressing more lately.

 

[lgelb]

If your daughter is on BiPAP, I would increase the Ti during these episodes, and possibly adjust other settings depending on her baseline. When you see the pulmo, I would bring a printout of BiPAP data (the waveforms and the numbers) during and around the episodes. If she is not on BiPAP, maybe time to consider it.

 

[Barbie]

oops, I just assumed it was your mom...sorry. wow, MS and ALS--a double whammy. glad you are here and we will help as much as possible.

 

[nebrhahe53]

If your daughter has MS and ALS she might want to try Gileyna-this drug is in trials for ALS but already approved for MS so insurance will pay, which is a good thing since it costs $55,000/yr. The neuros at my ALS clinic have been using it in ALS trials for 2-3 years and have told me it is the first drug they have seen that actually slows down progression of ALS substantially unlike riluzole which is a joke. They are so positive on it that they have been trying to get the FDA to approve it for use on ALS patients based on compassionate care criteria, but the FDA refuses.
Several PALS here use it-it is not an innocuous drug-it can cause heart and eye problems, but hey, ALS is no run in the park either. if she can get relief for both her MS and ALS, that would indeed be a miracle.

 

[nebrhahe53]

Oh and yes that sounds like laryngeal spasm. The first time i had that i woke up out of a sound sleep unable to breath, talk, or get any air in. I thought i was going to die right there.
Of course I later found out I did all the wrong things to stop it-tried to suck air in faster, thumped my chest etc.
To stop it you tilt your head back and breath in very slowly. This relaxes the throat muscles. In the worst case, you pass out, which relaxes the throat muscles and the spasm passes. You cant die from it, but it is really scary, especially when you dont know how to control it. Keep calm, breathe slowly, tilt you head back, and it should pass quickly.

 

[MaxEidswick]

>If your daughter has MS and ALS she might want to try Gileyna-this drug is in trials for ALS but already approved for MS

also called Fingolimod -- I am on it and haven't gone blind yet

 

[ALS caregiver]

Thanks for all the responses they help. She had another one of those"possibly" laryngeal spasms at 2am this morning and even though it stopped seem to take her oxygen 30 minutes or so to quit bouncing around in the 89 to 90 range. Will see respiratory soon.