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Legendary member
Sep 27, 2006
Hey y'all,

My husband went fishin with my Dad this past weekend in Florida and my Dad said my husband sounds like he's drowning while he's sleeping...just so much junk in his throat and aspirating. And they had to come in from fishin at 2 o'clock everyday. Then he went to bed at 6.

After he got home, he is completely exhausted/depressed. I mean just slap run down! He expressed his concern to me about the exhaustion and I asked him about headaches. Well, he never has ever had any kind of headache and now he's had them for about a week. From researching symptoms this seems to lead to carbon dioxide levels being elevated.

Someone help me out here. Does he need a Bi-Pap you think for breathing at night?

I've emailed the clinic about my concerns. I've asked a relative in the respiratory equipment biz for a pulse oximeter (sp) to measure the carbon dioxide just in case.

He's been out of town on two different trips now and has slept with my son since coming back. I will monitor him tonight in our bed!

Anybody with any opinions about this/ I would be grateful.
Dear Jimmercat, You may know more about this than I do, but here's my thoughts. The bi-pap can help with breathing so long as the PALS has some capability left in the muscular breathing apparatus. Get your husband to the doctor immediately in the morning to assess the situation and do any adjustments necessary with the bi-pap. If he's not getting the carbon dioxide out, he could very well need the bi-pap at night or even all the time. The excess secretions and potential for aspiration is a separate but related problem, as it can affect the ability of a person to get breaths safely in and out without getting fluids into the lungs (and can lead to pneumonia). Do you have a suction machine to help prevent this? or medications to help control the secretions? Please pardon me if I cannot remember about posts where you have already mentioned all this.
DON"T JUST E-MAIL. CALL, CALL, CALL and be an absolute pest until they get you in IMMEDIATELY. I would DO THE BI-PAP TONIGHT if you have the machine. IF HE SEEMS OVERLY LETHARGIC OR NON-RESPONSIVE DURING THE NIGHT TONIGHT even with bi-pap, and you see this message, YOU MAY NEED TO GO TO THE EMERGENCY ROOM TO GET SOME HELP. I hate to be unnecessarily alarmist, but don't hesitate to get whatever help you need to get that bi-pap functioning. The positive part of going to an emergency room in an emergency is that you don't wait until morning if there is truly a life-threatening emergency. the negative part, which is a consideration, is that you won't necessarily get any doctor or respiratory therapist there that knows beans about ALS. You are a strong advocate, and very knowledgable, so you may be able to handle this yourself and get the bi-pap working for him. Please know we are all caring about you and your family as you get through this next hurdle. Please forgive me if I am coming on too strong. This brings up so much for me I may not be rational. Holly
I'm just comparing your experience to ours, jimercat, and I think your instincts are right. You can have high CO2 levels without experiencing headaches, so the levels might have been rising.

But the pulse oximeter will only measure oxygen levels, not CO2 levels. CO2 levels can be high even when the O2 levels measured by the pulse oximeter are acceptable. You
need to have arterial blood taken in order to measure the CO2 levels.

Does your husband have a good strong cough still? Is it better when he's sitting up a bit?
Can you elevate the head of the bed and does this help him sleep better?

Can you get him an appointment for Sleep lab. studies? Think about taping the sounds when he sleeps--if you have a digital tape so much the better. It's a lot easier when you can say to someone: 'listen to what he sounds like when he is sleeping'.

I hope you can get some help on this.
Thanks for your replies.

I didn't hear the same thing my Dad says he heard. He does cough/gag at night, but I'm wondering if my Dad may have been overly sensitive to my husband's condition, as he has deteriorated a bit dramatically with muscle atrophy and fatigue since my Dad saw him last.

I called the clinic. They said that my husband has such excellent respiratory health that it was doubtful he had CO2 retention.

Holly, I tried to get my husband to at least go see his PCP today, but he refused. The clinic is prescribing an antidepressant and after a month if energy is not up, they will prescribe Mestinon (?). In the meantime I will keep a watchful eye on him.

landscape, thanks for the info re: CO2. Guess I got confused, which isn't hard for me. He's already had a sleep study and he was "normal."

I might have gotten overly anxious after talking with my Dad about my husband and jumped the gun.:oops: I just really want to be pro-active in taking care of him.

Now I have to research Mestinon.

Thanks guys. Don't know what I'd do if I couldn't get with y'all on "stuff."
I'm glad things are looking better. It's so easy to get anxious, (been there, done that) and you are right about wanting to be pro-active, it's the best approach!
sorry to hear

my brother is going throught the same thing. if you can and this might sound different but try placing a few bricks under the head of the bed to prop him up and lay your husband on his side so if something does come up he wont chole in his sleep . its also called the recovery positon for 1st aide. i am a certified nurses aide but i am also a person that has lost a mother , 2 aunts and now a brother from this disease. i hope it helps a little and i wish you all the luck with everything.
I feel your frustration!

Hello everyone,

Haven't posted for a little over a week now, because Wayne was in London hospital all of last week ... for BiPap! We tried every type of mask possible, he hated every one of them. I got very frustrated and had to come home while he was there because "I" want him to get BiPap to help relieve his headaches - but in the end, I have to remember that this is HIS decision not mine!

So what I'm saying Jimmer, is the BiPap may be a great solution, but there may be a chance that your husband will not be able to tolerate it. If that is the case, he won't use it.

The one respirologist suggested nose pillows with the bipap machine. We didn't get that far, but keep it in mind if your husband can't stand having the mask on his face. We tried the nose and nose & mouth mask... didn't work. Wayne hated both so much he didn't even want to try the nose pillows (I guess those are like the prongs that you see on a patient who is getting oxygen). I'm disappointed but what can you do?

Wayne also has lost 20 lbs. in the last 2 months - mainly from depression - doesn't want to eat or do anything. 3 doctors came in and suggested it's time for a feeding tube to help relieve the fatigue from eating but - no way! Wayne will not go for one at all. Our ALS Specialist told me that of all of his patients that he offers the feeding tube to, only 1/3 accept it... interesting...

We have an Ultramatic bed so I raise Wayne's head up when he starts snoring and gasping for air while he sleeps. It works great! He can't sleep on his side due to the atrophy in both arms and frozen shoulder.

GAWD... this is a HORRIBLE disease!


Very sorry you have lost so many family members to this disease! Welcome to the forum.

Thanks for the tip. See what I can rig up. He kept me awake last night making all sorts of weird noises. I know this is from not being able to swallow secretions. Now, today he is sneezing constantly? I had him take an antihistamine, so maybe that will help dry him out some.
Hello darrenwh, welcome to the fourm. What an awful toll this disease has taken on your family! Jump in anytime with concerns or advice or just to say Hi! Cindy

Is your husband on anything for secretions? This is the first thing I would do, if you believe he cannot swallow the secretions. Mom is on the Scopolomine Patch, and they just added atropine drops. It is amazing how much this helps.
I got the clinic to prescribe amitryptiline for the saliva and he won't take it. It makes him a zombie the next day, even on the lowest dosage. I will check with them about the patch.

thanks for the info!
For those of you taking Amitriptyline (Elavil) does it, or did it, make you drowsy the next day? Mom's doctor is considering putting mom on Amitriptyline (even though her secretions are well managed currently), so I am afaid it may either dry her too much, or make her sleepy - which also is one of the problems we are having now, and we are trying to see what is causing the problem. (He is considering Amitriptyline because she is having pain)
Elavil most likely will cause a little grogginess in the AM. I can't explain to you why Elavil helps with pain, except that my rheumo prescribed it for me for Fibromyalgia pain. It helped me, but I' not a PALS, I'm a CALS.
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