Sleepy all the time

[Ronnie& sissy]

Just a quick question, wondering if it is normal for my PALS to be sleepy all the time? He gets about 10-11 hrs. Each night (with the usual bathroom breaks in the night) and usually 3-4 hrs. During the day. And a quick background, the weather has been crap, so he hasn't been out of the house in almost three weeks. So there is not much walking being done. ( just bed to bathroom to living room back to bed) and I know that can be considerable considering.... It's just way more than usual. Does this mean progression?
I have finally gotten the Dr. And the girl for his bi pap place to communicate, she thinks he may need a different machine, so in the mean time, is he not getting rid of the o2 properly, and how do I know? He may eat twice a day, and that's after me nagging.
Keep in mind I may get slapped if he wakes up again and I'm starring at him and scare the crap out of him......lol. Don't act like you all don't do it! Thanks for any input!

 

[texastracy]

My daughter says she can tell when I don't use my BiPap all night, because I'm falling asleep in the recliner at about 7 the next night. My FVC was at 73% last clinic visit so I started BiPap. I use a Trilogy 100 with a humidifier and a Quattro FX face mask.

I wasn't having the headaches at the time I started BiPap. But now, if I don't get a full night on the mask then I'll wake up with one.
If your PALS is having headaches that is a sign of breathing issues.

Tracy

 

[Barbie]

Sissy, my understanding is that when sleepiness increases that is usually a sign that there could be a CO2 buildup. could be other things though--not get a good rest at nite, a virus, being down in the dumps. Does he use a bipap? if so you may need to adjust the setting. if he doesn't then you need to look into getting one.

 

[CGARS]

I haven't been out in a while either with this weather.
With the cold & flu season so bad this year, it's almost better to stay inside.
What does he do to keep busy when he's awake? Could he just be bored?
My wife used to stare at me when I slept, so I bought my own bed!
Keep em busy, best to you and yours,
Casey

 

[affected]

Sissy my PALS has been slowly sleeping more and more.

He commented the other day it is boredom.

However - he sweats on the back and hands, and he never was one to sweat. His hands and feet go slightly blue tinged and they swell. He seems to get enough oxygen as he doesn't get puffed on exertion (which is a snail crawl with walker and me from one room to another), but he is weaker and weaker, everything is more and more effort every weak and he is just weak and tired.

Actually, he was complaining from December that he feel weak and tired all the time, yet the other day he said he only sleeps because he is bored hmmmmmmmm.....

I actually don't stare at him sleeping, honest, I take the chance to race around getting stuff done! Recently his mother was here though and she kept doing that, if he could raise an arm he would have slapped her in the end!

We will be having his breathing checked again early next month so will then discuss bipap I would say, but I have serious doubts he will tolerate the mask well at all. Still one never knows until they try.

 

[ottawa girl]

Last year, i felt very tired; even after a decent night's sleep - i still napped several hours a day. I didn't know if it was the illness or depression since i'd never had either. My GP prescribed Wellbutrin. It's an anti depressant with mood elevating and no sedating component (as found in paxil for example). This has worked quite well for me for the last year. But since a recent bout of pneumonia and subsequent fall, fatigue has returned and is unrelenting. So I'm back to napping... and wonder if it's part and parcel of ALS.

Avoid getting slapped - wear sunglasses - he won't see ya staring. LOL

 

[affected]

Thanks for sharing your experience Elaine. It made me realise that the extra napping here has really started after his last bad fall resulting in head injury, fractured rib and other joint bruising and swelling. He didn't just start sleeping a lot the very next day, but since that fall he has progressively begun to sleep more in general.

He did also start anti depressants a few months back, so whilst they could be contributing, I find the slight blue extremities, sweating and swelling seems to point to CO2 build ups.

So good to see you back posting here too Elaine, love you so much girl

 

[Katie C]

I would definitly be asking the doctor about CO2 buildup

 

[Mediasmart]

just saying, i have sleep apnea which masked some of the breathing issues/sleeping through meetings the next afternoon as a result...they aren't related that i can tell but one clouds the other like so many things.

 

[zoohouse]

Before my husband got his sip & puff ventilator he was napping a couple of times a day, but since then he usually keeps busy scanning the news, or working on his computer. l know that his CO2 is fine, but he still has mottling or cyanosis of his extremities, with swelling, but it is because of lack of circulation. The minute I raise a foot above his heart, and do physiotherapy on it the cyanosis goes away, and if I do it a few times a day the swelling decreases. If it were true cyanosis due to elevated CO2 they would remain blue, even after elevation and moving. My husband does get sleepy if he gets chilled, and I think that is because he shivers very quickly and that burns a lot of energy. One of our favourite things in our house is our gas fireplace that we can turn on and sit in front of, but it does heat the room up quite quickly and my sprinkler system goes off. My sprinkler system is me in a total sweat, and it is crazy bad.

 

[mrvaughan]

When my husband sleeps more during the day, I know that it is time to look at his ventilator settings. His is invasive, so it may be a little different, but the CO2 buildup is pretty common. Other than sleeping though, co2 buildup also has a lot of disorientation when they are awake, if it is real bad, then there is incontinence and when my husbands was real bad his face almost looked like a stroke person, sagging on one side. He also was sweating badly when he was having trouble breathing. The other thing that causes the napping is that everything that a PALS does, takes a lot of extra effort and tires them out and they need to recharge with a nap. Also depression can cause someone to nap more.
When the CO2 is starting to build up, it is time to make decisions about if you will be using the bipap? how about a ventilator, non invasive, or invasive? It is better to do the research and make these decisions before you are in an emergency situation.
Mary

 

[Barbie]

my husband naps every single day for about 2 hours. I think just everyday functioning is exhausting sometimes--He always gets so tired just after his shower. Though he says he doesn't have headaches in the mornings, he is often greyish and groggy and has big black circles under his eyes for a half hour after we get up.

 

[affected]

Mediasmart, did you have sleep apnoea before ALS?

I don't think my PALS did, but I feel that he may have that as well now, or it's just part of his breathing issues declining. Because we no longer sleep in the same room, I don't observe a lot of him sleeping, but I have come in a few times he has been asleep and just been kind of watching him from the next room.

Barbie, yes just functioning is exhausting for them. My PALS often comments now that he just feels weak and tired. He doesn't get short of breath when shuffling from one room to another, but the extra sleeping shows that it does exhaust him, although I think that maybe when he is moving a bit he may breathe out a little better. He seems more to get signs of CO2 when he is just sitting still for some time. I think that is when he breathes more shallowly especially breathing out.

 

[Ronnie& sissy]

Thank you all for the input, took a couple days off work so hopefully I can get something's cleared up.
Boredom seems to be an issue so gonna see what I can do bout that as well.
Thank you all again! Hope all is well.

 

[SMP51]

I think this is just an exhausting disease, has been from the very beginning. over compensating for what you can no longer do is like a full day at the gym...I would need a couple naps and a full night's sleep!