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REM sleep disorder

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cjquilter

On reading the Parkinson's page of the Mayo Clinic web-site, it suggests that a lowering of blood sugar can lead to sleepwalking in those with PD. Since reading that (in May), my husband has a carbohydrate based snack before going to bed.So far, no more sleepwalking.Wish there was such an easy fix for the rest!

Going to ask neurologist on Monday about clonazepan for the RSBD. 

We lucked out at the ER the other night, the young doctor on duty knew about Syncope! His father had PD, and he knew more about it than most. This was the first time husband had 'froze' while awake and it scared both of us -especially as we were outside on concrete patio and he was about to face-plant into it. 

benji

Freezing whilst awake is common place with OH. Also recently read an article linking REM sleep disorder with dementia; apparently the same area of the brain is affected by depletion of nerve cells in that area as in Parkinsons.

That sounds about right.

smudger.s

hello everyone..i can certainly understand all your saying..its 217am went to bed at ten and cant sleep although i feel absolutly burnt out ..i had 3 hrs last night and the same prior to that..mix that with restless legs and a restless mind to boot...im feelimg in a right pickle.. this, not sleeping lark does get me down , seems to have got worst since dispersable levodopa(madapar) was changed to slow release or is i my imagination..time to put on smooth radio and hope ill settle down before daybeak ...this parkinsons things a crafty bugger ,it comes at you at one angle and if he cant get you one way it comes the other..ps ..apolgies for nothing constructive just feeling the strain at the moment...onwards and upwards ,,eh ?

Shado1980

Hi Smudger.S....  

I feel your pain - the fatigue you get with Parkinson's is bad enough at the best of times but the added sting in the tail of not being able to sleep at night either can get you down.

If it lasts longer than a few days then it might be worth considering the following suggestions which help for me.

1)   The obvious one of no or very little caffeine during the evening.

2)   A "wind down" hour before bed when you are doing something fairly relaxing eg reading, listening to music, meditation, drawing/colouring etc whatever works for you.

3)  Diffuse essential oils in your bedroom  - lavender is very relaxing.

4)  If you find yourself awake and unable to sleep, sometimes the more you try to fall asleep, the more wake and frustrated you get.  So, try a bit of reverse psychology,  try to stay awake, just lay in bed and put your mind in neutral and just relax, put all thoughts of not being able to sleep out of your head.  Your body and mind will just drift off when it's good and ready so just go with it.

5)  Try a sleep remedy eg Nytol that is quite gentle and which you can buy over the counter.  Obviously check your medication or seek advice from a GP or pharmacist before taking.

6)  If the sleepiness is a long term issue, speak to your GP.

smudger.s

Thanks for the advice shado, ive done most on your list but not had much luck ,to be honest i was given a couple of matrazipen ? ,,or something like that. they did give me a few hours sleep but didnt take any more because i rattle enough already with the pd meds i take wink,i know i shouldnt take them if not prescibed them ,but i was precribed them a while back. along side to meds im taking now . ,but didnt

SwissMiss

my hubby has Rem and Restless legs and Sleep Apnea.

For the Rem he was prescribed meds, but they made him feel very groggy/hangover in the morning. Then came a sleep test and he has mild Sleep Apnea, so now he wears a mask and that has made a big difference. Due to to gnashing of teeth during his REM, he now has been given a Mouth guard and since then no more blood on the pillow in the morning.

It is a see if it works case by case trial and error. He has Vitamin D and Magnesium supplements, for tiredness and his muscles.

Now we have to try and figure out his balance, that has totally gone to hell.

cjquilter

Hi there, Thank you for the advice, and sharing of experiences. The last visit with neurologist ssaw me armed with questions - he was not sure whether to hug me, or take offence. He decided that a hug was better for patient relations and answered my questions with a great deal of goodwill.

 Husband was weaned off the seizure meds, because if it is REM disorder related to Parkinson's then seizure meds will not be doing any good, right? To say the experiment was a failure would be being polite!

A second neurologist, who specializes in deep brain seizures, was called in. I should say here that both neurologists are great guys, very empathetic and knowledgable. Husband has the double whammy of sleep seizures and Parkinson's. The seizures are probable due to a night time fall in 2014, which might have been because of undiagnosed Parkinson's. As some one here said, this disease is a bugger, if it can't get you one way, it gets you another.

Now hubby is on clonazepam at night for seizures, and levadopa during the day for Parkinson's. Of course we now find that the clonazepam can be addictive, and cause heavy night sweats. It also does not stay with him so that he has had a couple of seizures when he has fallen asleep in the chair, dozed off while watching tv.  He obviously does not want to be so doped up he is a zomby (which has happened) but we are now in a trial and error situation. The local Parkinson's group seems to be OK with adjusting their own meds as they see fit, Not sure if I agree with that! 

Anyway, an update from here. Thanks for listening

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