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Manda

Member
Joined
Jan 12, 2016
Messages
12
Reason
Loved one DX
Diagnosis
05/2015
Country
US
State
California
City
Santa Clarita
My father has had ALS for probably about 2 years now. For the last year he has had terrible trouble sleeping. We tried getting him a new memory foam mattress and given him melatonin/Advil pm. But that didn't seem to work. So then he was prescribed zolpidem (a generic form of ambient). He has now become sooo dependent, tolerant, & I'm pretty sure addicted to them!!!! He takes 2 before bed, then sleeps for two hours, then wakes up and wakes his wife (my mom) or me up to give him another one, then does this again about 3 more times a night. Totaling around 4-8 ambient a night. I don't know what to do, because he begs us and we really want him to get a good nights rest. And we are afraid of the damage it could do if we make him stop taking them because then he won't get any sleep. I'm close to a mental break down because my heart is so broken and I am so so afraid. What can I do? :(

P.S. He also eventually runs out and goes a couple days with no sleep until he can get more and the cycle starts again
 
Hi Manda - firstly what is the actual cause of him not sleeping?

This is the first thing his doctor should be addressing.
PALS have several reasons - pain and fear being high on the list.

What has his doctor said about the dosage rate being used?
I would think the doctor should be looking at managing this differently.

Up and down with meds like that all night says to me that the medication regime is not working and titrating up is not a solution.
 
A lot of people's anxiety comes out at night. Is he taking anytjing for that? It seems like a crazy amount of ambien to be taking. Does he use a bipap at night, pain meds....just thinking of causes
 
Your doctor needs to be involved.
Ambien never kept me asleep, either. Some people just don't react to Ambien. So maybe your doctor will try somethiung else.
Not sure I would be worried about addiction in a patient with a terminal disease.
 
Hi, Manda,
I understand that this is not a sustainable situation, irrespective of "addiction" -- it's likely that the real culprit is breathing and/or pain issues, and Ambien/zolpidem is in a class of medications that can affect breathing and sleep architecture (deep sleep), esp. at the dosages you describe. Moreover, running out and starting over is flat out not good for his brain/cognition and compounding the wacky sleep cycles.

So I would start at why he's not sleeping. Does he have a hospital bed? Is he positioned with full joint support, with supplemental foam if needed, pressure boots, his head/back and feet elevated appropriately? Is the temp in the room comfortable as the night wears on? Is he on BiPAP? Is he getting humidified air? Is he depressed and/or anxious, hungry, thirsty, dealing with outside noise, light? How much mobility does he have and how is he positioned during bed? Just some thoughts to start with, but first and foremost, I'm pretty confident this can be improved.

It is easy to get caught up in the present situation but sometimes an outsider (e.g. nurse) can help you do a "sleep audit," even by Skype/Facetime. The more info you can provide, the more helpful we can be as well.

Best,
Laurie
 
We were on that Ambien Merry-go-round also. Switching to the extended release version helped a lot. we've been able to wean my husband to the point that he doesn't use it every night. We treat the anxiety and the pain and most nights he does much better. Every now and then he loads up on meds that end up messing with his breathing and cognition, but once you get a handle on what's causing the sleep problems you'll be able to minimize those nights.
 
Thank you guys so much for all of your responses, but everything is just getting worse. So this morning around 10am, my dad, who was on 8 ambiens, tried to get out of bed to get another one, fell and hit his head on the tile and was bleeding everywhere. We had to call 911 and the peremdics took him to the hospital and he had to get 6 stitches. He came back home and began to laugh and joke about it. Now tonight he is doing the exact same thing!! We can't control him. We don't know if it's because he can't sleep or he likes the high from them. We tell him not to get out of bed with out waking us up to help (my mom sleeps downstairs on the couch next to him every night), but he obviously won't listen. I have never been this scared, stressed, depressed. He had trouble with addiction to pain killers years ago prior to his diagnosis. The only meds I am aware that he is currently on is the zolpidem, mexaltine, zolaf, rizulole, and possibly another pain management. He also takes several vitamins in the morning (coconut oil pills, bcomplex, NADH). He can still breath on his own and speak (with a slight slur sometimes), he has no use of his arms or shoulders and has very weak legs but can still walk. He can not move himself around on the bed though. I'm sorry if I'm rambling on and if some of this doesn't make sense, but I feel so alone and scared
 
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It makes me feel a little better that we are not the only ones. I just don't know why he can't sleep and if that's even the true reason he gets up every 2 hours a night to get another ambien. But I will defiantly suggest the extended release and insist he talk to his doctor, it's just hard when I'm only his 20 year old daughter and my mom is not very enforcing and she never seems that concerned about it
 
So hard Manda, and you are so right - you are 'only' the daughter, so it's hard to try and work with him to get to a doctor and really figure out what is really stopping his sleep and work out the best regime.

Whatever happens, you are a wonderful daughter, and he knows this in his heart.

As carers we often have to just step back, bite our lips, and let our PALS do what they want, as after all they have so little control left over anything.

Venting here really helps us to do just that. You can let it out here, we will understand, then you can take a deep breath and go back to help xxx
 
Doesn't sound like he's getting the support from you doctor and his support team. When people have problems our ALS clinic is all over it. Visiting nurses and various clinicians. They are almost pests swarming about. Is he on medicare?
 
Zoldiem (not the xr) only puts you to sleep, it does not keep you asleep. He needs the extended release. However he is abusing them. He should not be taking that many. Alot of people become addicted/dependant on them. Someone needs to talk to his dr.
 
Manda,
I'm so very sorry that at such a young age you are watching your dad go through this. Our dads are our first love, and are supposed to be invincible...such sadness comes with this wretched disease.

Reading this thread Manda, I have to ask, is/was your mum the strong one in the relationship between your parents?

A few years ago, my mum was diagnosed with Breast cancer and had a mastectomy. Soon after two operations, my dad decided she just needed to toughen up and get on with life. My dad is the dominant partner. Mum cried to me about it. I hit the roof, and went through my dad like a tonne of bricks. It was very tough, but well needed.

I tell you this only because I'm wondering if you need to, nicely, let your mum know how you are coping, that she needs to be strong. That if she can't make decisions, she at least needs to be involved in the process.

Yes, it's very hard, I know from experience, but at twenty, you really can't go it alone.

Please, I say this out of kindness, talk to your mum.
 
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