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perplexed

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hi Everyone,
My husband (diagnosed January 2009 with slow progression bulbar onset ALS) has literally not slept in over a month and a half. Nothing the doctors give him works - Ativan, Remeron, Elavil, Lyrica, Apo-amitriptyline, Imovane, Zyprexa, Apo-oxazepam.

He will try Valium (which I suggested two months ago) tonight. The spitting and mind whirling around and around keep him up all night.
Has anyone had similar experiences and if so, what did they do to remedy them?

Really upset for him ( and of course for us, as it's affecting everyone. He can't sleep, can't work).

Oh yes, the Botox injection which was supposed to help the saliva/spitting, did nothing.

Argh.
Perplexed
 

rocmg

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dear perplexed... i'm going through the same thing right now with my mum. she was diagnosed with bulbar onset als less than a week ago. my first nights sleep in a week was last night when i think i had just exhausted myself and my body refused to go on.

these pills won't really work since your husband's adrenaline is overriding them. i'm sure you've been spilling your hearts out to each other since the diagnosis, but he needs to do something to get a little piece of mind, stop the adrenaline pumping and the heart going crazy long enough to get a little sleep. has he cried or felt any form of release?

i hope he feels better soon.

god bless.
 

BethU

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Hi, Perplexed ... Your poor husband ! Not being able to sleep is the worst thing in the world, and he needs all his rest to fight ALS.

I don't know most of those drugs by name, but Ativan is not a sleep med; it's for anxiety. I believe Elivil and Lyrica are also mood disorder pills, not for sleep, but I may be wrong.

I've had trouble sleeping all my adult life, but I've finally gotten it under control. I take Xanax every night at bedtime (it's for anxiety, too, but does help make me sleepy) and Ambien 4 or 5 nights in a row ... it is a sleep med ... and then take a 1 or 2 night break away from the Ambien, using an over-the-counter "nighttime" cold medicine. If you take any sleep med continuously, it will lose its effectiveness, but I find that taking a little break from the Ambien works for me.

Valium is not a sleep med either ... it's a tranquilizer.

Getting a good night's sleep is the most important thing to me in keeping going. Hope this helps.
 

vmd

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If a person with excessive saliva can choke on secretions, how do the doctors select which sleep medications to try?
 

jimmybob

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i think valium is a good choice, but only for a short period to relieve the lack of sleep. Once he's adjusted, i recommend zanax .5 mg (he may need to take 2 or 3 before bed). What was his sleep habit before diagnosed? Was he a deep sleeper, but had difficulty falling asleep? Or was he the opposite? The reason i ask is i am the former, and when i take valium the effect carries over well into the next day, but i sleep very well. Now i take 2 zanax and baclofen (for muscle spasms) 1/2 hour before bed. Recommend he not use sleeping pills. Once he gets into a stable sleep pattern, he needs to get into a productive daily routine to keep his mind occupied on other things. Keep him busy!
 

awieleba

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BETH~& perplexed

me too! Ihave had trouble all my life with this one. What works for me is the xanax (only .500) or a sleep aid called restoril. Restoril is to help you stay asleep not fall asleep. I also stop that and use nyquil. This has worked for me. I use to drink wine to help but if you have too much then you fall asleep fast but wake up all night. I love the restoril because when I take it, I would still wake up if the baby cried and go get her with no problem and go right back to sleep. I could never go right back to sleep without.

Good luck!
 

Zaphoon

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People tell me a natural sleep aid called Mellatonin (or is it Melatonin) works well. I haven't tried it, myself.

My brother-in-law was able to sleep using this during his last weeks battling cancer. If it could work for him and the pain he was enduring, it may work for your husband.
 
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BarryG

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Hi perplexed, I'm sorry that I can't give you any sleeping aids advice, I have always been able to get to sleep easily, even with ALS. As far as excess saliva (which can definitely make sleeping difficult, especially if you sleep on your back) I would absolutely recommend the radiation treatment that I had. My neurologist told me that it was not widely available but ask your doctor, it may be where you live. It was ten days of five minute zaps to the parotid salivary glands and now my saliva is managable. Before that my wife said that she was going to kick me out of the kitchen and I love to cook so I had to do something. One of the drugs that I took for saliva was amytryptaline, the only thing it did was make me dizzy, it did nothing for the saliva and it didn't make me drowsy either.
Good luck and I hope that your husband (and you) are able to get some relief soon. This awful disease does not have to make every day awful, I'm living with it not dying from it.

Take care,
Barry
 

mndireland

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My mam took the xanex but we found she didnt sleep at night with them and was just really dosey all day the following day. The doctor said they didnt like prescribing sleeping pills with this disorder as they tend to relax muscles, and obviously your muscles are already weak with als. Most of the ones you called out are relaxers, mainly just relaxing thoughts etc, making you sleepy. She now uses the amytryptiline, the 10mg wasnt working so she is now on 25mg, they are not skleeping tables but are relaxers and also contain anti- depressant. The doc told us, these will help her get off to sleep but will not keep her in a sleep as they are not sleeping tablets, I find once she relaxes enough into a sleep she tends to stay there, for 6/7hours.

I know its a real Irish thing, but do you drink? Sometimes a glass of red wine, or a vodka and tonic (good for cramps) can set her off also! And its quite enjoyable:razz:
 

olly

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hi perplexed

i take zopiclone,have done for some years with no problems.
zopiclone helps you to drift off to sleep unlike antidepressant types.
my problem is geting my body in a relaxed state to sleep as i am more stiff and in pain on a night(first thing on a morning)
i take 20mg baclofen,25mg amitripyline(i was on 50mg then came off them over a year ago but taking a small dose again)plus 7.5mg zoplicone sleep med.
this coctail helps to relax muscles and send me to sleep.
it all depends on the type of sleep meds,some are just to send you off to sleep while others have a more long term effect to keep you asleep.
i think its valium and other antidepressant drugs they use to help you sleep for longer.
these are called benzodiazepines drugs and include diazepam,lorazepam,oxazepam.

i think its best to try a combination of different things to see what works for your husband.
dont know if zopiclone is called something different there but a combination of this,amitriptyline and baclofen may help.
really hope you find something that works for him,i know what he must feel like as without my meds i would only get 2-4hrs broken sleep.
not getting enough sleep makes everything feel more crappy(exscuse my language,no other way to put it)
 

hopingforcure

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I take a similar cocktail as Caroline that works for me.. she said exactly the way I feel... I NEED my medicine for rest.. very good advice once again Caroline..
 

Shatzie

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Several years ago I was prescribed Trazodone, which is a mild anti-depressant and it worked well for me at that time when I needed it. Then when I was diagnosed with ALS I was told to take melatonin 30 minutes before bedtime. I was told not to take a regular tablet, but a sublingual one that you put under your tongue and it dissolves. It doesn't knock me out like other sleep aids, it just helps make me a little sleepier and helps me sleep more soundly.
 

bmb3641

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I have found that 1 12.5mg ambien cr, 1 1mg clonazepam and 1 2.5mg dronabinol it seems like alot but i do feel rstd which makes my day better. I've tried must of the other drugs except a few didn't like most of them
 

rose

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the AmbianCR works for me, with the regular ambien, I fall asleep, but then wake back up again. with theCR version, r it is much more effective for an entire night's rest. It does need to be taken on an empty stomach to have its best effect. good luck!
 

BethU

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Good point, Rose. I take the CR too. I had the same reaction as you did with the regular Ambien.

One thing to mention: My pulmonologist was upset that I take Xanax and Ambien, because they can affect breathing. I haven't had any reaction to them, and getting a good night's sleep is the most healing thing I've got going on right now. My neuros and my cardiologist have no problem with my taking them. But always best to talk to your doctor about adverse reactions when he/she prescribes something.
 
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