New to this forum/ Lack of Sleep

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Sofia

New member
Joined
May 17, 2010
Messages
6
Reason
CALS
Diagnosis
07/2009
Country
US
State
Georgia
City
Atlanta
Hi, I'm new here. My partner was diagnosed 10 months ago & now is completely immobile except for slight head movements. We have moved across country to be w/his family. He was a wild guy in better times & now is still wild in spirit but w/ALS.

My topic here is @ sleep. I am w/him 24/7. Very little sleep at night. By the 4th or so time up at night, I start getting crabby. I hate myself for it... Tell myself not again...then I get crabby next night...

Comments?

Sofia
 
The first question is why is he waking up? Is it the bed? Does he need a BiPAP? If he has a BiPAP is it set correctly?

I use 10 mg of Ambien and my BiPAP so that I sleep through the night which means my wife gets to sleep. Granted I still wake up now and then but we deal with that.
 
Thanks. He refuses to use the bi-pap, doesn't like it... He takes baclofen, 20mg b4 bed & recently has agreed to take 1 oxycoden & 1 lorazapam. He has not tried ambian, may be a better alternative.
 
I don't like the BiPAP either. I'm on my fifth mask type currently the Resmed Mirage Liberty. If I don't take any pills I usually make it to between 2 - 4 with the BiPAP on and then wake up. At that point my wife takes it off and rolls me on my side. If we're lucky I make it to morning.

You can tell him from me that I'm right there with him on the BiPAP but we both have to man-up. I only need it for apnea right now but the time will come. Find the mask that works for him and get the doc/therapist to help.

Now concerning Ambien, it gets me stoned plain and simple. Ten minutes after taking I'm quite happy. I try not to take it all the time usually two or three times a week. I will admit that after I do I end up hearing stories like, "you were holding your BiPAP hose like a microphone and when I ask what you were doing all I got was a grunted I don't know". See I get happy, usually a decent nights sleep and provide free entertainment for my wife ;)
 
So anyone bulbar on Bipap? I have been doing ok with my new "friend" after a week up until last night when I had I had real problems with mucous and goo. Coughing and drooling and just generally feeling awful inside the mask so I eventually took it off. I might have got a couple of hours sleep with it and a couple of hours without so I don't know if I am coming down with a cold or if it is just something to work through. I have the BiPap humidifier setting on medium and am using the ResMed Mirage Quattro mask.
 
Yes Barry, I'm Bulbar, and also hate the bipap. I struggle with saliva when I use mine.
 
I am limb onset but have developed bulbar symptoms. I take hydrocodone which has dry mouth as a positive side effect for me. In addition I take a glycopyrrolate before getting in bed. The combination of those two along with increased water through the PEG have helped quite a bit with mucous and saliva.
 
I know you are all sick of me saying this but my problems with the bipap and mucous and goo were similar to what you are describing. I fought with it every night for a year then got a trache/vent and those problems disappeared. It was SUCH a relief.
 
Ambien works well, but be careful about the extended release - it made my husband sleep-walk-goofy.

Since my husband started using Atropine for saliva issues, his coughing, gagging, sneezing issues have gotten less. But, he still hates the BiPap! He might use it til 3 in the morning, then he moves the wrong way and the alarm sounds. He is done with it at that point. Then the strange yelling sounds start...like he's having nightmares. He says he doesn't remember having a nightmare, but it's like he's fighting someone!
 
I would agree with trying some ambien, tell your md your issues, and he will be able to help you. You need to get your rest, you are doing an amazing job being a caretaker and it is exhausting, rest when you can.
Know you are in my thoughts and prayers
In friendship
Jeannie
 
Sofia,
I hear you loud and clear on the sleep issue. No matter how much I tell myself that they can't help themselves. I wake up totally crabby. I try to keep my cool...but after several wake ups...sweetness is not present. I always feel so bad the next day. As the song goes...running on empty!My hubby is also total care. I am going to take a nap today..if I can squeeze one in....exhausted! Hang in there.
 
I admire you carers sooooooooooo much!Send you all my love
 
Hi Sofia, I hope this does not sound like a cop out but we have a carer come in a few nights from 10.30 pm to 6.30 am. It is an active shift and she stays awake the whole night which has also helped with my husbands anxiety as lately when I go to sleep he is anxious. So having someone awake sitting next to him all night means he can sleep a little. He also has massive problems with saliva which also keeps him awake. She is very good and sometimes comes up with ideas or ways of doing things I have not thought of. To be honest I don't think I could manage otherwise. Also he is on bipap almost 24 hrs per day and is bed bound, in fact he hasn't left the bedroom in 3 months. I don't know, is getting a night time carer even for one or two nights is an option for you?
 
Jeff, I tried the glycopyrrolate last night before I went to bed and it really helped. I got to sleep at around 12 and wore the bipap all night until Beth woke me up this morning at 9:30. I had no problems with saliva or goo so I did not have any problems with the mask. I was quite tired from the lack of sleep from the night before so it was very nice to have a good night's sleep.

Sophia, sorry to take your thread a little astray. I have just started with the bipap and am getting used to it but for sure it is not something that anyone would choose if they didnt have to have it. I hope that you find a solution to your sleep issues for both your sakes.
 
Glad to hear it. It has helped me a lot with saliva. I found it works best for me if I take it an hour or more before I go to bed. I still have issues with mucus from time to time (last night :() but I'm getting there. I'm going to try N-Acetyl Cysteine (NAC) at about 1200 mg/day to see if it thins the mucus. There is a paper on Medscape that says it worked so I'll give it a shot.
 
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