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dasilva

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CALS
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US
State
mn
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portland
Hi, this is my first time posting. I have been on here many times but never wanted to post. My husband was diagnosed with als in April. He can no longer talk and gets all of his nutritional needs by feeding tube, also all of his meds. He has lost 45lbs. We are doing the best that we can. Just trying to get through each day. His biggest problem right is that he can't sleep. He takes 50mg of rilutek twice a day, 20mg of amitriptyline and 50 mg of sertraline a day. The anti depressants he take at bed time. Every ounce in a while he needs an anxiety pill. He also take melatonin, 10mg. He still can't sleep. Is there anything out there that can help? The doctor seems hesitant to want to give anything that might help.
 
We used Benedryl at night, that helps. when it lost its effectiveness, we switched to Tylenol PM. When that stops helping, we are going back to the Benedryl.

Why doesn't the doc want to give him something to help with sleep?
 
Almost all drugs people take are metabolized in the liver.
Rilutek is known for elevating liver enzymes and who knows what else in the liver.

I'm surprised he's not responding to Amythryptyline as it has properties of inducing people to sleep.

Although, I think his Doctor may fear adding more medications than he's already taking to avoid serious drug interactions as he's already taking several drugs on daily basis.
I might be wrong but, who knows.


Regards,
 
Do you have his head and shoulders raised? As breathing becomes more difficult, laying flat can make it even more uncomfortable, causing anxiety that leads to sleep difficulty. His last few weeks, Glen actually found it easier to sleep in his recliner than even the hospital bed.
 
I take ambien. I was taking benadryl and melatonin, but that didn't work. No sleep equals poor quality of life, as far as I'm concerned. It's miserable to lie awake at night, and what is the point if not to spend remaining time awake with family when you are awake? Put it to his Doctor that way. Also make sure he's sleeping with his head elevated; the person above is right, i don't like sleeping flat at all any more.
 
Taking those 2 antidepressants together is a potentially dangerous combo -- definitely can increase heart rate and other sx that could interfere w/ sleep (and wt. gain). 10mg is also a hefty melatonin dose and could be counterproductive, causing headaches, for example, and/or shredding the natural sleep cycle.
I would back off everything, start over w/ minimum dose of one antidepressant, titrate to effect, only then considering something else.

As others have said, comfort @ night is key, too, simple things like height/angle of back, head, legs; are his heels fully protected, likewise his shoulders, elbows, hands. All of these could be suboptimally supported and causing discomfort. The right room temp, sheets, blanket. A low-voltage heating pad can help relax muscles. Our PALS cannot tolerate much weight on his chest and virtually none on his feet, so we use several travel pillows to support joints, fold blankets down, use only very light/soft material on and under him, etc. Sometimes you don't know what's wrong until you shake things up a bit.

Also, you did not mention breathing, if he is using a PAP, etc. If he does, there might be room to work with the mask/settings. If not, breathing could now need support. He could be waking up totally partially from air hunger/obstructions/spasms. Those start taking any kind of benadryl (the ingredient is the same in Tylenol PM, BTW), benzo like Ativan/Valium or non-benzo sedative for sleep (like Ambien) should read your data card carefully thereafter because it's likely your settings could need adjustment since each of these impairs breathing and affects sleep architecture.
 
Hi...sorry your husband is having issues with sleep.

As was asked earlier by lgelb, Does your husband use a bipap? I think of all the meds etc, the use of a bipap for me was the most helpful.

His current symptoms, speech and meds through feeding tube are the same as mine. I am however able to sleep 8 or 9 hours per night. It does take me some time to fall asleep, I have restless leg syndrome, I've had it for years. I take 25mg of amitriptyline, Nuedexta, and Rilutek before bedtime. I believe the amitriptyline helps me sleep to some extent, I was taking it 3 months prior to the Nuedexta and during that time I was on 50mg of amitriptyline.

But I still believe that the bipap has helped with my sleeping the most, if nothing else it helps me stay asleep. I had a cpap prior for apnea but I wasn't a faithful user.
 
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