How does breathing deteriorate?

[NotALS!]

Can someone tell me the stages ALS patients go thru as their breathing deteriorates? Its been getting harder and harder for me to breathe over the years and I wonder if its time for me to get some help.

I have sleep apnea but could never tolerate a cpap. My diaphram muscles feel so weak now that I don't think I could force the air back out of my lungs. My breathing is so shallow at night that I don't snore anymore. I wake up constantly with terrible headaches, like my brain is oxygen-starved. I'm afraid I will have a stroke.

 

[Ms. Pie]

Do you have a Pulmonologist? You should get your breathing and forced vital capacity measured.

 

[nikolab]

Headache means you lack oxygen!

Visit pulmonologist !

 

[Danijela]

How about bipap? it is different to cpap from what I know. Yes, have your breathing checked, at least your FVC (forced vital capacity). If there is a clinic near you that can do a full sleep study, this is recommened.

Your symptoms are concerning, and I would not delay. In the meantime sleeping raised up (hospital bed, many pillows etc) may help you breathe better in the night. Low 02 and build up fo Co2 is what causes the death in majority of cases of people with ALS.

Dani

 

[Miss]

You need to be on a BiPap. You will get used to it, and it will help you maintain diaphragm strength. As the others have said, get to a Pulmonologist as soon as possible.

 

[pscheffel]

I agree on the Bipap, my Mom refuses and I am afraid it means her progression will be even faster.

 

[notme]

Def time for bipap. Or even that pacer a member here got. What are you #s like? With sleep apnea, too, the issues will only worsen.

 

[momap53]

Definitely time to have this checked out! bipap relieves the headaches tha many experience from not being able to blow off the CO2.

 

[skipper66]

My father agreed to a bi-pap and has been using one now for about three weeks at night. He sleeps 100% better now. My dad refuses to ever be put on a vent but he highly recommends the bi-pap because its non-invasive and he tolerates it well. My dad has a tendency to be claustrophic and this doesn't bother him.

 

[jamiem]

I went on the bipap last Friday! It has improved my life so much. I was having tingling in my feet for several months and my breathing was so labored! Today I noticed that my feet do not tingle (oxygen deprived!) and I am breathing so much easier during the day! I totally recommend it to anyone with breathing issues!

 

[ltbeauti]

Call the doc right away. They can order a oximeter that measures the oxygen in your blood when you sleep. Then insurance or Medicare should pay .

 

[HelenL]

You may also want to talk to your pulmonary doc about a cough assist as well... I don't need the bipap yet, but need the cough assist due to lack of strength for coughing.

Finny thing is, I can still holler up the stairs to the kids when I need to get them up for school! Guess it's part of my exercise program now.

 

[NotALS!]

I'm going to a pulomonologist at ct ALS hospital in a few months. they can't get me in any sooner. i'm hoping to have the sleep study done before that. I'm also going to a lyme dr and taking antiparasitic drugs. Alinia helped me a few months ago, then it didn't. Now it started helping again. I'm also wearing a big hair clip at night so I don't roll on my back. The cooler weather helps me breathe better too.

 

[notme]

You shouldn't wait several months if you're having issues now, you should be able to get a sleep study ordered just by your GP.

can I ask why you're taking the Lyme drugs if ALS is the DX.

 

[rose]

A sleep study isn't a bad idea, but, the problem is the majority of sleep study facilities and their staff are geared to sleep apnea rather than muscular weakness, so, frequently the expiratory pressure of the bipap will be set way too high.

More in a minute, I need to locate a video...

okay, I'm back,

This video features my pulmonologist, It is somewhat dry and technical, but still very good. The symposium is actually for those with post polio syndrome, but it also applies to other neuromuscular conditions, and I believe he does differentiate what is beneficial to different patient groups when need be. Its been a while since I watched it, but had it bookmarked in my computer...

Noah Lechtzin, MD - Breathing & Sleep Symposium 2009 - YouTube

Anyway, my point is that he is not a big fan of sleep clinics just due to how they are geared toward straight sleep apnea problems.

If an ALS patient does not have fvc scores low enough for insurance to cover the bipap machine, oftentimes other readings will, (Such as MIP and MEP scores) Medicare and other insurance seem to be quite lenient in accepting this type of documentation to support a prescription.

Anyone with ALS should have a bipap with backup feature (will breathe for you when you don't take a breath on your own.

Here is a transcript that is also pretty informative:
http://premiermedicalcorp.com/pdf_f...Lateral_Sclerosis,_Problems_And_Solutions.pdf

As many of you know, I'm a huge advocate of bipap, and don't know what I would do without it. My last PFT showed a 45% drop in my fvc when tested supine after being tested with me sitting up, and that's with me awake (once we enter REM stage of sleep the other accessory muscles shut down, and its only the diaphragm doing the breathing).

My RT taught me how to adjust my machine on my own, and that has been beneficial for me in not being dependent on waiting for a "professional" to come to my aide. That gets old, if you know what I mean.

No matter what the stumbling blocks, its worth the effort of getting past them to use the bipap. Somewhere there is a mask that will work, and there are pressure settings that will help, not hinder, it oftentimes is just a lot of trial and error.

Here is a video from the same symposium as the previous one. I had it bookmarked in my computer too, and will confess that I don't remember watching it, at least not in its entirety, but it should (hoping it has) good info on types of ventilation etc.
Noah Lechtzin & Louis Boitano - Breathing & Sleep Symposium 2009 - YouTube