No movement during sleep: I have an app on... - Cure Parkinson's

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No movement during sleep

12stargate profile image
39 Replies

I have an app on my iPhone that registers sleep during the night, how long, how deep, etc. One of thethings it was measuring was how much I moved during the night. Lately it has been giving out a warng that I did not move much during sleep.

Last night I fell asleep on my back with my arms stretched out behind my head.

8 h later i woke up in the same position. When I went to scratch my right shoulder, it was numb:P

Anyone else with similar experiences?

And what does it mean?

Thank you!

Lovingly, Eva Gabrielle :)

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12stargate profile image
12stargate
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39 Replies
enjoysalud profile image
enjoysalud

I'm curious too. Have you added or subtracted anything new or different to your meds? I would ask your MD. Maybe it's all good.

I would like to get eight hours sleep each night.

Beckey profile image
Beckey in reply to

Me too -- with the emphasis on "at night."

Hikoi profile image
Hikoi

That's Parkinson's , one of the first questions the neuro asked me about. Lack movement in bed.

Beckey profile image
Beckey in reply to Hikoi

That's so funny, because mine asked if I had been yelling, screaming, or acting out my dreams.

finlander profile image
finlander in reply to Beckey

Yes, mine too and the answer is yes, I do talk and yell and occasionally act out. Two nights ago, my wife tried to wake me up due to my loud yelling and she was unsuccessful for several minutes. I would love to sleep soundly with no moving around but have been told that this acting out during "sleep" was common in PWP rather than the sound sleep that 12Stargate experiences. Several nights ago my wife tells me that my rambling dialog was so comedic she woke ME up with her loud laughter

Beckey profile image
Beckey in reply to finlander

HA HA HA!!

Last time I woke someone up with my hollering was at the home of my then-boyfriend, a lawyer. I want to tell you that killed the relationship dead in about two seconds flat and last time I saw the poor guy he was still hanging from the chandelier, shivering like a plucked chicken in the wintertime. That was almost 10 years ago. Sigh. Where do PwP go to meet other PwP without shocking anyone out of their skins?

Bailey_Texas profile image
Bailey_Texas

years ago before dx with pd i wood sleep with my arms crossed on my chest and my feet crossed and my arms would be asleep when woke. my wife had to move my arns to get me started

12stargate profile image
12stargate in reply to Bailey_Texas

Bailey_Texas

That is depressing. I was diagnosed 6 years agp😳

Bailey_Texas profile image
Bailey_Texas in reply to 12stargate

why depressing it was 20 years ago 12 years with Pd for me

DEAT profile image
DEAT

Dx 13mths ago. Not on medication yet.

My husband tells me i do any of the following-

Sleep deeply and hardly move all night.

Scream in the night while sleeping.

Argue with people while asleep.

Sleep with my arms crossed on my chest.

Twitch during sleep.

There is no rhyme, reason or pattern to the above. And i am unaware of the above behaviour when i wake. More recently i am waking with pain in my upper arms and shoulders.

trumble profile image
trumble in reply to DEAT

Hi Deat,

I am also experiencing all of these these activities.. plus the stiff and painful neck and shoulders, which now seems to occur every time I sit down or lay down on the sofa for too long.

I'm pleased that we're not the only ones suffering this.

I was dx in 2009 and take Madopar, Artane and a rotigotine patch ..which usually eases this rigidity by lunchtime

Best wishes

Bailey_Texas profile image
Bailey_Texas in reply to trumble

Hi trumble

I am sorry to hear that it takes that long to get relief. I am concerned if it takes more than 30 minutes to feel the effects of my meds. I have had PD for 11 years. In fact I took my meds 15 minutes ago and am feeling better now. As for sleeping with my hands across my chest i woke up like that today and my wife had to uncross them. I could have but would had taken 5 or 10 minutes to do it.

Beckey profile image
Beckey in reply to DEAT

But DEAT, when you think about it, doesn't that about describe everyone at one time or another?

AuntB profile image
AuntB

What's the app called?

12stargate profile image
12stargate in reply to AuntB

AuntB

the app for monitoring sleep is called Sleep Cycle.

Peace :)

Joanne_Joyce profile image
Joanne_Joyce

That is interesting that you can monitor your sleep. I have the same problem. I don't move at all and when I wake up in the night because of leg pains I have to put my legs almost on the floor to roll over. That wakes me up so I can't go back to sleep. Recently I have found that I am much more comfortable sleeping in a chair after I first wake up at night. But then I am still wide wake early and get up - usually 3am . I see my neuro next week and this is on my list of questions to ask. I'll let you know what he advises.

park_bear profile image
park_bear in reply to Joanne_Joyce

I get to bed around 9:30-10:00 and awake around 3:30. It has become a lifestyle - I do yoga first thing and then move on to computer activities which are profitable. Someone recommended 5-HTP to help sleep better and - it works! -except sleeping longer does not work for me because I wake up too stiff and miss my early AM routine.

Beckey profile image
Beckey in reply to park_bear

What's 5-HTP?

park_bear profile image
park_bear in reply to Beckey

5-HTP is an over the counter supplement. From Wikipedia:

en.wikipedia.org/wiki/5-Hyd...

5-Hydroxytryptophan (5-HTP) ... is a naturally occurring amino acid and chemical precursor as well as a metabolic intermediate in the biosynthesis of the neurotransmitters serotonin and melatonin from tryptophan....

A 2002 review by the Cochrane Collaboration concluded that although the data evaluated suggests that 5-HTP is more effective than placebo in the treatment of depression, the evidence was insufficient to be conclusive due to a severe lack of high quality research.[2] More and larger studies are needed to determine if 5-HTP is truly effective in treating depression.[3]

----------------------------- warnings -------------------------

When combined with carbidopa (as a treatment for symptoms of Parkinson's disease), 5-HTP causes nausea and vomiting; however this can be alleviated via administration of granisetron.[11] As mentioned above under pharmacology, cases of scleroderma-like illness have been reported in patients using carbidopa and 5-HTP.[12]

- I did not experience this. I was only taking one small dose at bedtime. Also the scleroderma only showed up in patients being treated with extremely high doses - 1-3 grams/day

silvestrov profile image
silvestrov in reply to Beckey

The precursor to 5-HTP is tryptophan. tryptophan is converted into 5HTP and 5HTP is converted into serotonin. Like dopamine, serotonin does not cross the blood brain barrier so a precursor must be taken to raise its level in the brain and central nervous system.

There is a danger to taking too much serotonin which is called serotonin syndrome:

"Serotonin is a chemical your body produces that's needed for your nerve cells and brain to function. But too much serotonin causes symptoms that can range from mild (shivering and diarrhea) to severe (muscle rigidity, fever and seizures). Severe serotonin syndrome can be fatal if not treated."

mayoclinic.org/diseases-con...

If this is a concern or if you are taking other drugs, etc...which raise serotonin levels you can take tryptophan in the place of 5HTP. There are articles relating tryptophan and Parkinson's disease:

L-tryptophan supplementation in Parkinson's disease.

"Two female Parkinsonian patients with levodopa-induced "On-Off" responded dramatically to administration of L-tryptophan supplementation."

ncbi.nlm.nih.gov/pubmed/274...

Tryptophan, like other amino acids, when taken with levodopa interferes with levodopa for passage through the blood brain barrier. Amino acids 'compete' for entry into the BBB so it should be taken as monotherapy at a separate time from taking levodopa. A good source of natural trytophan is Evening Primrose Oil.

"VV Evening primrose (Oenothera biennis). Evening primrose oil (EPO) improved Parkinson's-induced tremors in 55 percent of those who took the equivalent of two teaspoons a day for several months. The oil contains traces of the amino acid tryptophan, which boosts the effectiveness of L-dopa."

naturalpedia.com/Trials-37....

More about EPO:

herbworld.com/learningherbs...

Years ago a contaminated batch of tryptophan killed a bunch of people in the 1980's and it had nothing to do with with the action of tryptophan itself.

psrast.org/demsd.htm

enjoysalud profile image
enjoysalud in reply to silvestrov

Silvestrov, does taking NADH close to C/L interfere with the C/L? The reason I am asking is that someone at the store where I got NADH (thro Amazon.com) said that there was no problem taking the 2 together. I did not have my son do that, but curious. My son, just started NADH (Enada brand) today, a low dosage of 10mg. I (75 years old) tried it several days ago (no health challenges except do take thyroid) and the first couple of days it gave me a bit of nausea and the third day a headache. Today it was o.k.

silvestrov profile image
silvestrov in reply to enjoysalud

It should not interfere but actually potentiate the effect of C/L. One of the reasons why NADH is taken for PD is because it aids in the production of dopamine.

NADH stimulates endogenous dopamine biosynthesis by enhancing the recycling of tetrahydrobiopterin in rat phaeochromocytoma cells.

ncbi.nlm.nih.gov/pubmed/924...

You son has been taking nicotinamide/niacinamide and it is a precursor to NADH. A lot of nicotinamide produces a little NADH. Niacinamide does a lot more than this function....

I took 5mg x 3 times a day of NADH for several months and it did give me a boost but being a broke artist I stopped taking it and put the money towards several other supplements.

As for your reaction to NADH, do you have frequent headaches or migraines? I do not and did not even consider this effect as a consequence of NADH and did an internet search about the topic:

Headaches: Hunting down the cause of your pain

"Supplements to avoid: Yeast vitamin supplements, L-tyrosine, NADH."

drhoffman.com/article/heada...

I have taken both tyrosine and NADH (together) and it did not cause headaches. Everyone is different and can have a multitude of reactions. If the effect went away with no side effect it sounds like an adjustment period.

The question is does your son have headaches?

enjoysalud profile image
enjoysalud in reply to silvestrov

Thank you, Rich, for your prompt response. I cannot praise and give you thanks enough. I NEVER get headaches, ever. I can't remember when I got the last one. This one only lasted 5-15 minutes. I have not stopped the NADH, 10mg, and have not been revisited by a headache or nausea. I was thinking of going down to 5mg, BUT I AM NOT THE PD PERSON. My 54 year old son is. He never ever gets headaches or nausea. Before PD he was and is super healthy. He never gets the flu (I don't either) and neither of us has had a flu shot. My son was subject to asthma as a kid and in his early 30's got a bout of bronchitis. Only that one. He started the 10mg of NADH yesterday...no headache or nausea. You had recommended 20mg a day, but I wanted to see how 10mg worked for him and with 10mg can double it to 20mg. I know that the sales people are schooled on their product, but I was taken aback when she told me that it COULD BE TAKEN WITH HIS C/L AND THERE WOULD BE NO CONSEQUENCE. I am so use to have him follow the rule of 1 hour before a meal and 2 hours after. The packaging and info on NADH gives little info on when and what circumstances to take the NADH. My son tends to be inflexible, so I just gives thanks when he does do it, although in fairness he is becoming more accepting of his supplements. I think because he is seeing IMPROVEMENT in his energy level. Thank you thank you thank you. I called the store because the first day of trying the NADH he had difficulty with the sublingual approach and swallowed it. She said it was destroyed. He needed to let it dissolve sublingually. He accomplished that yesterday. For such a formally educated son he has his "ways". The concoction he takes daily (in 3 doses but not equal), all liquid, incorporates 1200mg CQ10, 375 mg green tea extract, 3000mg Vit C, 500mg B-12 complex (Neuro said he was high and so I cut him back to 500mg), 1000mg Niacinamide, and separately he takes pills which total 1000mg of L-theanine. Yes, NADH is expensive, I rationalize everything by telling myself that this year and probably the future I am no longer treating my children/granchildren to out of the country trips. In addition, I live in a house that I bought in 1967 and have paid off. In California we have prop 13 which means that your property taxes go up very little as long as you remain in that property. My parents grew up in the Depression and lived in an era of little opportunities for Mexican-Americans, I was taught to work and study hard and to BUDGET my money. Good lessons that still serve me. Thank you, again from this "scared" mom when it comes to treating her son. You give me confidence and that's what it's all about.

12stargate profile image
12stargate in reply to Joanne_Joyce

Joanne_Joyce

Yes, please let me know?!

Peace😊

stevie3 profile image
stevie3 in reply to 12stargate

It's an amino acid which helps up production of serotonin. You can get it from a wide variety of distributors Lots of info on google etc. It helps with stress/anxiety/depression/promotes relaxation. I use it but it doesn't help me sleep. My sleep has probably been my most troublesome symptom, particularly because I still work. and I manage it in several ways, including occasional use of melatonin. I now have a cushion in my office and when my staff have gone home for the day I take a 15 minute nap which revives me remarkably.

Bridielena profile image
Bridielena in reply to Joanne_Joyce

Gosh me to a tee. Am in electric recliner now. Have been since 3 am.

I don't move in bed because I simply can't. I am tired all the time partly because my husband has copd and prostate problems meaning he's very restless and up and down all night. I should move into another bedroom but neither of us wants that.

I do sleep in the chair giving me some catch up time and peruse my emails and world news without disturbing him. He settles down around same time I leave....I can hear him from my refuge.

Anyway LCT to the rescue hopefully next year.

Sending before my head drops into my lap.

HGE

M_rosew profile image
M_rosew

You can get nerve damage by pressing on a nerve for too long. Have a look on Google for 'Saturday night palsy'

M

judam9 profile image
judam9

hi @Eva Gabrielle, i don't move much either during the night either. although i don't think i could sleep with my arms stretched out above my head. but the problem lies with i'm in pain if i sleep on my left side . i have sciatica in my left leg. the stynosis in my back is pinching the nerve in my leg. and the other side isn't much better, and if i sleep on my stomach, my bladder gets awakened, and i feel like i have to get up and go to the bathroom. so my choice is left to sleeping on my back. but i don't get numb from that. when i did get numb , and couldn't find my right arm was because my mattress was to soft, and after i bought a new firmer one, , the problem was gone. hope this helps.

love you too Eva, good luck. oh PS , before the matress i bought on of those pillow mattresses and i had to send it back . i was numb all over. the softness was cutting off the circulation. judiB

Joanne_Joyce profile image
Joanne_Joyce in reply to judam9

Glad you are sleeping better on your new mattress. I have a firm mattress and was thinking a softer one would help, but from you experience it is not the case. Do you ever try sleeping in a chair?

judam9 profile image
judam9

i did reply but i guess it got lost somewhere. but thanks anyhow.

12stargate profile image
12stargate in reply to judam9

judam9

Hi😊 I did read your interesting response😊

I don't think my mattress is my problem.it is quite comfortable.

This kind of 'dead sleep' sleep did not bother me until I woke up and my right arm was kind of numb.

I am sure we will find a solution. We kind of always do when we put our our heads together 👍🌺💕

judam9 profile image
judam9

when i would be sleeping in the middle of the night, well first of all, i always slept with my arms up on my stomach. this was before the change in the mattress. and i couldn't find my arm. i would feel all around and finally found it laying across from me, [of course] it was attached . but it was very asleep. that's when i looked for solutions. and found out it was my mattress which was too soft. and cut off the circulation.

if you find another solution , let me know. sometimes the simple answers are the best. i went to the stores and laid on every mattress that i could find, until i found one that was just right.

just like three bears. !

Pappy214 profile image
Pappy214

i don't move at night during sleep either but but my nightly cocktail consists of 2 percocet,1 xanax . 1 celexa , 1 zyrtex and 2-3 hits of weed mixed with wax or rosin keeps me asleep 7-8 hrs , GOTTTA HAVE SLEEP !!!!

pen1 profile image
pen1

Becoming unable to turn over in bed is one of the most common signs of the progression of PD. Parkinson's UK recommends satin sheets to make turning over easier. Not tried this partly because can't find any I could bring myself to buy. I wave my arms around while asleep but otherwise no longer move in my sleep and often wake up with 'dead' legs. However, I talk, scream, cry, sing and shout all night. I also speak and sing in fluent French and German - which I studied for 0 level more than 40 years ago but struggle to remember when awake. I've just started throwing anything within reach on the bedside table onto the floor. (While asleep I hasten to add!) A very new phenomenon is a sudden violent juddering that jerks and twitches through my whole body and wakes me up, just after I have gone to sleep. Much stronger than the 'falling' sensation that many people experience and wake with a start. I'm a bit worried that it might turn into some sort of seizure but I've not read anything that suggests it will.

Bridielena profile image
Bridielena in reply to pen1

My husband said i had my hands around his neck and pressing hard. How could i do that when i have practically no sensation anywhere through my body.....

HGE

Astra7 profile image
Astra7 in reply to Bridielena

My neurologist asked me about this. Apparently when we sleep our brain produces something that stops us acting out our dreams - in order to protect us while we are not conscious. PWP can lose that which can become dangerous - both to your partner and yourself. One of his patients had broken his wife's jaw one night! You should probably mention this to your nuro before they find you wandering the streets at night.

The fun never stops...!!

1jenny2 profile image
1jenny2

Yes. I've been reading and it says it's possible sighn of lots of things I have started to take l too a. Eating beans. And I am still not sleep ing all night. I dunno if I should speak bout it to my doctor for stop watching tv and going at bed at 10 pm then recording . But I wake up with gout and arthritus

1jenny2 profile image
1jenny2

L too a. Pruriens I am taking

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