Debilitating Sleep issues!: I am at my wits... - Cure Parkinson's

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Debilitating Sleep issues!

AlanaS7 profile image
34 Replies

I am at my wits end trying to find a suitable sleeping aid for Mum who has Parkinsons. She was diagnosed about 10 yrs ago..We have tried Axit and have just tried Clonezapam which was a disaster!

The Clonezapam made Mum quite delusional and aggressive. We have also tried Melatonin.

Mum just isn't able to settle and sleep for any long period of time.

I would be very appreciative if anyone has any advise on what else we might be able to try.

We are desperate😔

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AlanaS7 profile image
AlanaS7
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34 Replies
Dragona profile image
Dragona

My husband uses lithium orotate 10mg, melatonin 10mg and magnesium glycinate 500ng sleeps really well now

AlanaS7 profile image
AlanaS7 in reply to Dragona

Brilliant.. have you noticed any side effects? How long did it take to get some relief after he started this routine? Many Thanks

Dragona profile image
Dragona in reply to AlanaS7

No side effects took about a week, if he didn't know have to get up for a wee think he'd sleep straight through now

Chris1960-2 profile image
Chris1960-2

Hi Alana,

You could try Lithium Orotate if she's agressive. It works very well for my mother. Only 125-250mg (5-10mg of Lithium Element) are enough. See other posts on Health Unlocked about this matter. I wish you all the best.

AlanaS7 profile image
AlanaS7 in reply to Chris1960-2

Yes I have heard this could benefit PWP. I would be very interested to look into this. Many Thanks for taking the time to write..

AlanaS7 profile image
AlanaS7 in reply to Chris1960-2

Could I ask if Lithium Iritate is prescription only?

Chris1960-2 profile image
Chris1960-2 in reply to AlanaS7

No, no prescription for Lithium Orotate (and Aspartate).

AlanaS7 profile image
AlanaS7 in reply to Chris1960-2

Many Thanks..how long did it take to work Chris?

Chris1960-2 profile image
Chris1960-2 in reply to AlanaS7

About 1 to 2 weeks but you can already feel the benefit after the first caps (depending of individuals).

jeffmayer profile image
jeffmayer

Have you tried natural remedies for eg kalms night or nytol

AlanaS7 profile image
AlanaS7 in reply to jeffmayer

No, but am willing to try anything. Mum did try CBD oil but didn’t seem to do much for her.

LAJ12345 profile image
LAJ12345

Have you tried getting her outside in the bright light in the morning, preferably for a walk?

No sugar or caffeine after dinner

AlanaS7 profile image
AlanaS7 in reply to LAJ12345

Yes, Mum lives on acreage and often spends time outside. Many Thanks for your suggestion!

jeffmayer profile image
jeffmayer in reply to AlanaS7

It works for me good luck

Mapleshade58 profile image
Mapleshade58

my HWP neuro prescribed melatonin (no more than 15 mg), xanax at night/as needed and controlled release C/L at night. That "cocktail" for a month helped. He has since stopped the xanax and is doing okay. We added that because his anxiety had spiked.

AlanaS7 profile image
AlanaS7 in reply to Mapleshade58

Thankyou so much.. I will pass it onto our Gp. Mum was taking mirtazapine but still wakes during the night. Xanax might be better ..

Allyn profile image
Allyn

Valerian root extract.

AlanaS7 profile image
AlanaS7 in reply to Allyn

Will look into it. Many Thanks

Wonky-Bride profile image
Wonky-Bride

My Neuro suggested 8mg Ropinirole in the early evening to combat akathisia (internal restlessness), which he suspected of being the cause of sleeplessness - it has worked for me. PS I wasn’t aware of akathisia but when I read-up on it, it made sense. Good luck Alana.

AlanaS7 profile image
AlanaS7 in reply to Wonky-Bride

Thank goodness for Google . I will definitely be looking at akathisia. Mum is also very restless during the day as well.

AlanaS7 profile image
AlanaS7 in reply to AlanaS7

Hello Wonky-Bride, Mum has always found it difficult to sit still. She is always wanting her legs moved , or her pillow moved etc etc. May I ask if you had similar day to day experiences. Many Thanks,Alana

JustJeff profile image
JustJeff

I use Melatonin and prescribed slow release Madopar and amyltryptolene.....seems to work so far :)

jackedmonston profile image
jackedmonston

I have not beaten the problem, but 6 mg. Of THC at bedtime has helped a lot.

HugoRipanykhazov profile image
HugoRipanykhazov

Not sure if this can help anyone other than me but put an earbud in an ear on the side she isnt sleeping on and pump something slightly interesting in. I use BBC World Service.

It takes about three minutes before my mind is completely taken over by what is on and I am asleep.

The only things that prevent me from sleeping is when someone is nattering about something I am COMPLETELY uninterested in, such as who is killing who most recently in Ethiopia/Congo or how no one is doing anything about global warming.

Also, for some reason, it has to take your mind OFF whatever is keeping you up with nothing particularly important to me. SO music of whatever type doesn't help me to get to sleep at all.

AlanaS7 profile image
AlanaS7 in reply to HugoRipanykhazov

Haha., this is actually what I do.. and yes it works a treat for me. I will try this with Mum

Hikoi profile image
Hikoi in reply to AlanaS7

I listen to the BBC through ear phones too. Have you tried sleep with me? sleepwithmepodcast.com

LeharLover62 profile image
LeharLover62

Mannitol fixed my husband’s sleep, and then he could also tolerate melatonin which used to give him leg cramps. (He can no longer tolerate mannitol but the sleep benefit stuck!) his new neuro also recommends lithium orotate but we haven’t tried it yet.

AlanaS7 profile image
AlanaS7 in reply to LeharLover62

Many people have mentioned Mannitol. Will definitely be looking at this one!

Madame-Mango profile image
Madame-Mango

Besides taking magnesium and melatonin supplements, I find that wearing blue-light blocker eyeglasses after 7 PM makes a difference in how well I sleep.

Exposure to artificial lights and device screens (including television) after sundown suppresses our natural melatonin, which is already on the decline because of age. Blue-light blockers help counteract that suppression to foster enhanced sleep. Hope that’s helpful.

AlanaS7 profile image
AlanaS7 in reply to Madame-Mango

Thankyou dearly. We will try anything!

Smokeypurple profile image
Smokeypurple

Mannitol made all the difference to me. Pre diagnosis my sleep was appalling.

Laurie Mischley recommends 1:1 CBD:THC and she also recommends taking melatonin when you wake between 12 and 2 (rather than before going to bed) in order to mimic the body's natural surge at that time.

AlanaS7 profile image
AlanaS7

Thank you so much. Mum also had terrible sleep before being diagnosed .. I will certainly be giving this a try!

enjoy2013 profile image
enjoy2013

Hello,I am aware I am joining the party a bit late, but when I saw the title of your post, I thought I'd check with you if you found a solution and if your mother is sleeping better now.

I also suffered from terrible sleep problems, I know too well that not sleeping is hell.

So if the problem is not solved (and frankly, even if it seems to you she is sleeping) I would start by looking for a sleep specialist (if possible attached to a PD center, having experience with pwPD) and a place to get a sleep study (polysomnography). If you are in the UK, the movement disorders team of Prof Chaudhury in Kings College is very "sleep-sensitive".

Personally I take a coktail of medicines before going to bed, but I would recomment to be very cautious with starting and stopping sleep medicines. Confusions, delusions could be also be caused by the withdrawal of such drugs. I am a medical professional and I don't stop or start new sleep medicines on my own. I can reduce my dose if I feel I can do so, but that's it. And if I do, I don't make any further changes for months..

Please let me know if I can further help

AlanaS7 profile image
AlanaS7 in reply to enjoy2013

Many Thanks..We tried Mum on Tamezapam and it worked brilliantly. We did begin to notice that Mum was becoming a little aggressive and feared that she maybe getting a buildup of the Benzodiazepine in her system. We know from past experience that Benzos don't agree with Mum so we decided to wean her off them and try "Imovane" which doesn't contain any Benzodiazepine..Fingers Crossed!!

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