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mndireland

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Hi Guys, sorry I have some more questions. Nights have become a nightmare. My mom dreads going to bed at night, as she can no longer lie down. She has been like this a while and sleeps with 5 pillows so her head is almost upright, but lately its gotten worse. She has to sit on the bed and then fall back onto the pillows, her breathing becomes a real struggle then, and a lot of times now its like a panic attack and i have to pull her back into a sitting up position. This can go on for up to an hour some nights. We did get a hospital bed but she wont get into it, its so high she cant get her legs in it. She gets up to use the toilet during the night, and falls asleep everytime sitting on the lavatory, its freezing here during the night, and Im terrified she'll catch pneumonia. I wake a few times a night and find her in the bathroom, but sometimes she could be there an hour before I wake a realise shes not in her room?

Does anyone else have problems lying down? What is the solution?
Also she is falling asleep while sitting up just talking or eating dinner her eyes close. Sometimes she's talking complete nonesense, and say things so out of character, its very strange?
 

BethU

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Does your mother's neuro know about her problems breathing at night? Is she on a Bi-Pap? Having to sleep on pillows is a sign of not getting enough oxygen, so she needs assistance with her breathing as quickly as possible.

I imagine her falling asleep during the day could just be exhaustion from not getting sleep at night.

I'd suggest you contact her neuro right away and see if he can get her going with breathing asistance at night.

I am so sorry for what you both are going through.
BethU
 

patricia1

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Sorry to hear about moms breathing
Try a xanax one hour before bedtime and buy a recliner lift chair its wonderful The motor is pay by medicare so its about 400 out of pocket.
You can recline as much as you want and it lifts you out into a standing position she can sleep very well in that chair
I love mine

Pa.t
 

Al

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Your mom is in need of a Bipap. The confusion is probably a combination of oxygen shortage and a build up of carbon dioxide. Doesn't the hospital bed go up and down? Most I've seen do.

AL.
 

CindyM

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Hi MD-I know your Mom hates her bi-Pap but this really is her only solution. Everything else will help her feel more comfortable but the Bi Pap will help her breathe! Even if she only uses it while watching TV, it will correct her blood levels somewhat and thus she will be less sleepy, confused, and anxious. The TV helps keep her mind off the Pi-Pap. Nose pillows VS a full face mask can help too.

Some PALS do need anti-anxiety meds to help them overcome the anxiety of not breathing well. Some days I find it is a full-time job just to keep myself relaxed, LOL! But on another thread today I posted my tips for breath-stacking and exhaling to the fullest extent possible. This really helps for me right now, hopefully it will work for your Mam.

One final thought. I find that when my mind is made up for or against a certain course of action, my family and I go over the same ground again and again. But a new face to the scene, with a new mantra and no-nonsense approach, can sometimes help me break out of my train of thought. Can you get one of your Aunts or siblings (a really strong personality) to come over while you go out with the girls? Tell the temporary carer that their job is to get her to use the bi-pap for an hour. This might not work for your Mam but sometimes I need to be shown, lol. Sometimes reason will not do the trick, unfortunately.
 

mndireland

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Thanks guys, We have done most of this. Her neuro is trying to get her back into her ward at the hospital but at the moment there is no free beds, a real problem in this country! But she does know the problems we have, they send out a nurse regular but not much she can do. I have the hospital bed that goes up and down, but its so high she cant get in and out of it and so doesnt like it, it has sides and she said she feels like she is confined to a cage. One thing I have to say about our healthcare is every piece of equipment is free and fitted, and all nurses, homehelp, doctors etc all free, so I suppose we are lucky to have this kind of help. We have the electric chair that sits her up and down and she loves it, she sits here all day, and this is when we do use the bipap with no problems, only a couple of hours at a time but hey it works!
We did give her xanex but found that she didnt always sleep all night anyway and just made her soo drousy the following day all day. To be honest she is like this all the time now so maybe the xanex wasnt to blame at all!

She is most comfortable in her chair so ive started throwing a blanket over her in the evening and letting her sleep there but when she wakes up she insists on climbing to stairs to bed and then sits awake all night. She still tries to do the normal things i suppose.

Thanks for listening, and all the advice is such great help!
 

olly

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i have the exact same problem and need to sleep with 5 pillows or i wake up not being able to breathe and sometimes have started choking in my sleep.
i get headaches and cognitive problems,if i slept for 12 hours i would still wake up tired.
a few weeks ago i was sat on the sofa and felt the need to lay my head down on the sofa cushion to rest my head and eyes.
i was only layed down less then a minute and i could not breathe,felt like my chest was being crushed so i had to quickly sit back up,it was very scarey.
i know i may need a bipap,i need alot of things sorting out i just seem to be falling apart lately but keep putting it all to the back of my mind thinking i,ll be ok.
i have heard alot of pals say the bipap is clostrophobic,i have a big problem with this issue.
 

givenin

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My husband could not sleep in bed anymore do to the feeling of his chest collasping and slept in the lift chair. I would hear durring the night as he adjusted the level he was at. We had a T.V set up for him and he would watch it all night and nod off and wake constantly. For him we had a urinal cup he used himself durring the night.He also refused using the Bi-pap after awhile which frustrated me greatly as you could see how much it improved how he felt. olly you really should get on it there are different masks and nose thingys to try but you will feel much more alert and not so tired all the time. Is anyone checking your co2 levels? If you tried it like the others have said even for a hour it really helps you phisically. It will also help those headachs you are having.
 

jonsjr40

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HI my name is john iv have had als for 17 years .Isleep on my side that helps me alot
Ihope that can help god blees
 

mndireland

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Hi, she does sleep in her recliner chair all day on and off mainly sleeping while on the bi pap. Olly, my mum suffers with clostraphobia and also panic attacks, it took her a few weeks to get used to bi pap and she really hated it, if you have someone sit with you while your on it and if you panic or feel suffocated they can take it off straight away, My mom is using it since July and sometimes she just cant put it on when she feels panicked, still not using it during the night. You will get used to it eventually as you fall into a routine with it, and you will feel some benefit, the most relaxed sleeps my mom gets is while on the bi pap. Nowadays when her breathing is bad she will ask me to put it on, and she sleeps for hours, that was a massive step forward!

Take care everyone, and thanks for all the answers!
 

CindyM

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Olly- I didn't know that PLS could also cause respiratory problems. I am glad you shared that.

Jon- welcome to the forum. It will be nice to have another long-time PAL around here! So glad you joined us. :smile: I have trouble sleeping on my side as it feels like the arm that is not against the mattress is pulling on my chest. I finally learned to prop that arm up on a pillow. Seems you just have to be persistent and keep trying things.

MD: I am glad your Mam uses the bi-pap for a bit during the day. I am absolutely convinced, from my own unscientific experience, LOL, that this helps keep us strong.

Stay strong everybody and enjoy your Sunday! Cordially, Cindy
 

hopingforthebest

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getting use to bipap

My husband has been on bipap since February. It was an adjustment. I had to get him anxiety meds that I broke in half. I would give to him an hour before bed and then the hospital bed was so helpful as I am able to raise his upper body. I lower the bed to get him in. I put the mask on him already running and then lie him down. It took a good 2 months to get him settled.

It must be so scary for them. He described it as an elephant sitting on his chest and him trying to breath.

Now the bipap is his best friend. Thank God!

Patty
 

freddiesnetty

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Use the bi-pap, as Freddie could not even go during the day sitting upright without it, This went on for about a year, He didn't like either at first but then got to where he adjusted and then would panic without it...I am soo happy to say that today I am shipping Freddie's bi-pap off to another member here today, I wanted to take and stick that damn thing under my cars tires and throw it in reverse and smash it to the ground, I hated that machine as it had made me live my life around it. When I told Freddie I was going to smash it he was so sad about it. He told me that it kept him alive and he had alot of respect for it...I know that sounds weird but he really was attatched to it. I only can imagine how he feels even though I watched him gasp for air. I can not imagine the feeling that our PALS get when they can know longer breathe normal. I remember one time I was choking on a piece if steak, It was HORRIFIC, I felt so panicked until some one came and squezzed the bee jeezus out of me.......So we are happy to ship the bi-pap off to another member that so desperately needs it....I guess we as cals feel so much differently than pals about equipment. I don't know I am just kind of rambling today.........Has a [email protected]$%y weekend.

netty
 

northerngirl

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Messages
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I think you would find if they did a o2 test during the night (like they did with mom) her o2 levels drop dangerously low. Does she get hot at night ? that is a sign of high co2 in her system. What actually happens is they can not get rid the co2 and that causes anxiety. I know you frustration. Hang in there. She will have to use the Bi Pap. Have you tried her Bi Pap. They are strange and difficult to get use to. I tried mom's a couple of times to understand the hesitations. Respectfully so they are unusual to use. But it is not an option. she will also have more energy during the day.
 

CB1977

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Just out of curiosity, why do the O2 levels drop at night but not during the day?
 
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