sleep deprived: Does anyone have any... - Cure Parkinson's

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sleep deprived

taurusgirl64 profile image
35 Replies

Does anyone have any suggestions on how to sleep through the night? I fall asleep but never stay asleep. I'm exhausted at work every day.

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taurusgirl64 profile image
taurusgirl64
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35 Replies
Mogul1 profile image
Mogul1

Good grief! I know what you mean. It’s 8AM on the West Coast and I have been trying to get to sleep since 11PM. This has been an issue for over a year. Had made progress but this is major set back.

First recommendation from my experience. Stay away from prescription sleeping pills. They made my symptoms worse. Could barely walk down hallway. Used the walls more than the floor. If something unexpected happened in the middle of the night, I would be worthless. Plus nightmares.

I’ve been trying homeopathic/naturopathic options with mixed results. Melatonin is very popular. I like liquid melatonin from Whole Foods, but haven’t had great success. Took it last night but no joy.

Mogul1 profile image
Mogul1 in reply to Mogul1

Oops! Couldn’t stop my finger from tapping, and off it goes! Sorry.

Try 3 doses of melatonin 1 hour apart beginning 3 hours before bedtime then 30 minutes before bedtime try Valerian root or “Sleepthru” from Whole Foods.

Welcome to this marvelous form. Lots of info and wonderful members.

park_bear profile image
park_bear in reply to Mogul1

I second the recommendation for Valerian root – it works for me when I need sleep help.

Melatonin can cause a gassy diarrhea.

Mogul1 profile image
Mogul1 in reply to park_bear

I haven’t had that problem but forgot to mention that Sleepy Time tea “Extra” has Valerian root in it. Nice evening beverage.

Park_Bear do you buy it in capsule form? If so, what brand?

park_bear profile image
park_bear in reply to Mogul1

Yes capsules. My most recent batch came from Swanson vitamins, but as far as I know the brand does not make any difference.

I am a subscriber to Consumerlabs which tests supplements. According to their testing the vast majority of supplements have exactly what they say they have. The exceptions are usually little-known off brands.

Suliana profile image
Suliana in reply to Mogul1

I am currently trying Bach Original Flower Remedies. Rescue Remedy for relief from stress there is also a sleep remedy. I took 4 drops on my tongue last night and slept well.

Mogul1 profile image
Mogul1 in reply to Suliana

Thank you Suliana. I tried Bach Flowers Rescue remedy but not the liquid. Used 4 of the droplets at night several months ago without much luck. I prefer the droplets. They do not have alcohol in them.

taurusgirl64,

This is what has worked for me very well :

healthunlocked.com/parkinso...

Art

Motherfather profile image
Motherfather

hi taurusgirl take 1 entrip 25 mg 1 hour before bed thats good i take them sometimes most times i can sleep ok try it anyway you have nothing to lose.regards john...

bcowart profile image
bcowart

I suggest you get tested in a sleep clinic. I have been through Stanford University's sleep clinic four times. First time was over a decade ago. They invented the whole sleep disorders research and treatment. Now you can get tested in overnight sleep clinics around the world.

I'm 5'10" and 135 pounds. I don't fit the usual build of someone with sleep apnea, but I have it! I hadn't been able to sleep for a couple of years. I had been diagnosed with Lyme disease and was doing treatment for it. Lyme and associated coinfections carried in the same ticks (e.g. babesia, bartonella, ehrlichea and others) can interrupt the brain's ability to go into the sleep state. So I was already treating with antibiotics. SLeep was getting better, but not back to normal.

At the sleep center, they put 35 sensors on my body and told me to go to sleep. The next morning the doctor informed me that I had awoken over 100 times in the night, and I had zero minutes of stage 3 and 4 sleep. Those are the deepest levels of sleep, where much repair of the body occurs. The weird thing was that I had no idea or experience of waking up and falling back to sleep. It was all unconscious for me. Even if I did 'wake up', the gasping part was not experienced.

The culprit? Obstructive sleep apnea (OSA). My tongue was falling back in my airway and blocking my inhaling, and therefore of oxygen. Once the brain is deprived of enough oxygen, an alert goes out which wakes up the body via coughing or some other writhing or shaking to wake you up -- otherwise the result could be death. Sleep deprivation is preferable to death, though over time not much better! Anyway, I was given a prescription for a CPAP machine to ensure I was getting enough oxygen during sleep. I didn't get along with it and instead paid (out of pocket for about $2000) for an 'oral appliance' which is like a teeth protector that football players wear. However, to be effective against apnea you must find a dentist or orthodontist who specializes in making oral appliances for treating apnea. Medicare will cover the costs, by the way. At the time, I only had private insurance which wouldn't.

I have a theory that apnea may contribute to the development of some neurologic diseases such as PD and Alzheimer's. The brain isn't getting enough oxygen to rest properly, to clear out brain detritus which contributes to misfolded proteins. My father had serious untreated apnea and died of Alzheimer's. Maybe just a coincidence, not cause and effect, but it's worth considering. I took videos of him doing it (almost 2 times per minute) and gave it to his doctors but they did nothing about it. He was too far gone by then and probably wouldn't have been able to use the machine properly.

The bottom line is that I would strongly suggest getting tested in a sleep clinic if you cannot sleep. They do test you for all kinds of sleep issues, not just OSA. Things like RLS, nasal obstruction issues, "central sleep apnea", lung issues, missing REM sleep, weird heart function, etc.

If you DO have apnea, taking sleeping pills is the *worst* thing you can do. Why? Because they will reduce the ability of the brain to wake up in the case of oxygen reduction. Anything lower than 88% of normal O2 level in the brain is damaging. It can result in ischemia, which will kill brain cells. To ensure my CPAP and oral appliance are working right, I use a wrist-worn recording pulse oximeter to monitor my blood oxygen level from time to time.

Most insurance plans will cover a sleep clinic overnight stay. Some clinics will send you home with a test kit you can use at home, for a basic test. If trouble is detected, you might be Rx'ed to do an overnight at the clinic.

Now that I have the oral appliance and CPAP (I alternate between both now), I still have some insomnia from time to time. In that case, I use the sleep drug Lunesta (generic is called ezopiclone). None of the others work for me. I also drink sleep-inducing tea (SLeepy-Time, chamomile, etc.), take hot baths with Epsom salts, etc. before bedtime.

Hope this helps!

Bob

in reply to bcowart

I second your thoughts on a sleep clinic appointment. Best to go to experts on sleep to see what is going on. I also have REM Sleep Behaviour Disorder. I take 1 mg of clonazepam at night and that is very effective. It is a short acting drug that does not have problems if I wake up for the loo!!

sleezy profile image
sleezy

My cousin's husband takes two Benadryls and a Tylenol each night. I quit taking anything after I had problems with the Mirtazapine and Amantadine. I was also taking Melatonin and an over-the-counter sleeping pill. The combination of pills made me lose my balance and gave me hallucinations. My advice is to be careful of what you take. I wouldn't recommend Benadryl as it has some side effects. Good luck and let us know if you find a safe and successful method that helps you sleep.

gaga1958 profile image
gaga1958 in reply to sleezy

ask cousins husband to google the connection of Benadryl to Alzheimer's

gwendolinej profile image
gwendolinej

I agree that you should get tested for sleep apnea. It’s very common with Parkinson’s. My husband, Alan, went into a sleep clinic overnight and now uses a CPAP machine each night. His neurologist told him that he needed to use it. @We can’t help you if you don’t help yourself as well” is what he said.

Jebbie12 profile image
Jebbie12

I take trazodone and one Advil and it helps many nights but not all. I believe insomnia is just something I’m going to have to live with many nights of my life. Acceptance is important.

Jebbie12 profile image
Jebbie12

I’ve also found that a firm bed surface makes it easier to turn over in bed

NRyan profile image
NRyan

If you have PD, you probably have low Vit D levels. I take Vit D every night (its a hormone, actually) with Vit K for better absorption. I also take mag theronate. I use NuLeaf CBD oil under the tongue. If I wake in the night, I take 1mg melatonin then. Make sure no screen time 1-2 hours before bed. Also no food 3 hours before bed. I use sound to lull me back under. If you are feeling stressed at all before bed, try to meditate to get your mind to calm before trying to sleep. The sleep (or lack of) is the worst part. ;(

Jandeb profile image
Jandeb

A fe tis re "sleep hygiene"

Room as dark as possible or eye mask, no screen time before bed, 3 grams of the amino acid glycine (avaialbe on amazon, very safe), 500 mg of amino acid tryptophan, reduce noise as much as possible, meditation prior to bed or do it when you prematurely awaken (headspace app or ziva are good and easy), exerrcise earl in the day (not within 2 hours of bed. Amazon hsa motion activated little red lights. If you get up in the night red light doesn't trigger waking up like glue or white light. Good luck!

Rhyothemis profile image
Rhyothemis in reply to Jandeb

Glycine may not be all that safe - at least, not for rats with demyelinating diseases (PD is not AFAIK a demyelinating disease, but MSA is). This was a very in vitro study and used peritoneal macrophages, not microglia, but still it gives me pause:

The inhibitory neurotransmitter glycine modulates macrophage activity by activation of neutral amino acid transporters.

Carmans et al. (2010) J Neurosci Res. Aug 15;88(11):2420-30. doi: 10.1002/jnr.22395.

ncbi.nlm.nih.gov/pubmed/206...

"Glycine, an important inhibitory neurotransmitter in the mammalian central nervous system (CNS), has been shown to modulate peripheral immune cell responses. In that respect, glycine levels are increased in several neuroinflammatory disorders, such as amyotrophic lateral sclerosis (ALS) and multiple sclerosis (MS). In this study, we show that glycine modulates macrophage effector functions implicated in CNS inflammation and in other, related inflammatory conditions. We demonstrate that glycine does not affect the production of reactive oxygen species but stimulates myelin phagocytosis and the production of the proinflammatory mediators nitric oxide (NO) and tumor necrosis factor (TNF)-alpha by rat macrophages. These effects of glycine are not mediated by the glycine receptor (GlyR) or by glycine transporters (GlyTs), as neither the GlyR antagonist strychnine nor the antagonist of GlyT1 (ALX5407) reverses the observed effects. In contrast, 2-aminoisobutyric acid, a substrate of neutral amino acid transporters (NAATs), inhibits the glycine-mediated enhancement of myelin phagocytosis as well as of NO and TNF-alpha production. In conclusion, our findings demonstrate that glycine modulates macrophage function through activation of NAATs. Glycine may thereby influence immunological processes in inflammatory diseases involving macrophage activation and demyelination, including MS and related conditions associated with altered glycine levels."

Jandeb profile image
Jandeb in reply to Rhyothemis

When i look at that article two cveats come to mind. One is that it is in vitro and the other is the concentration of the glycine being significantly higher than normal range.

Rhyothemis profile image
Rhyothemis in reply to Jandeb

There is also a case report of an MSA patient with hyperglycinaemia to consider, though:

ncbi.nlm.nih.gov/pubmed/?te...

As the first article noted in the abstract, there are neurological diseases in which glycine is elevated in the CSF; it is not known if this is cause or consequence of problems (likely both).

With supps people need to consider their own circumstances; what is beneficial for some (even many) may actually be harmful for others.

SELFMeder profile image
SELFMeder

Took me a while to find a reliable solution:

1. Go to bed after my spouse is sound asleep

2. Before that, go thru a 3-step process before retiring:

(A) take an Advil PM

(B) half hour later, take a Melatonin capsule

(C) 15 to 30 mins later after becoming drozy, put a sliver of an Ambien tablet under my tongue and go to bed.m (less than 5 mg)

3. I usually take these pills with hot decaf tea. Constant Comment works for me.

Hope this helps. Sleep deprivation is no way to live!

As you can see from these postings, there are lots of individual solutions for sleeplessness. Many causes and many solutions....diet, sugar intake, caffeine, food intake for dinner, STRESS, medications , etc. etc.

Do you know what’s preventing you to sleep or staying asleep? What are your symptoms?

I had years of poor sleep eventually getting down to ONE full continuous hour of sleep per night in 2010 (post PD diagnosis) and walked the floor for the rest of the time. I was at the end of my rope!

It all started in 1973 with my first pregnancy and I ended up in hospital for the last trimester. Their drugs basically made me drowsy and dizzy in hospital. Had tried Melatonin previously and it was totally useless for me ...... and the same for any other "natural " supplements and over the counter meds. I tried them all. Once my baby was born, I no longer had the problem, until part way through my second pregnancy a year lately! Ended back in hospital for 3+ months with toxemia again and no sleep. All good after baby was born.

However in 2005 it returned and it was affecting my work. After finally being referred to a psych (prior to being diagnosed as PD) and trying over 15 (honestly) medications and being diagnosed as depressed (symptoms of no sleep are often put down as depression) I (yes me, myself and I) eventually asked my neurologist if it could be due to RLS ...Restless Leg Syndrome...even though the symptoms were not typical. I had been researching and RLS was closest to how I was feeling.

As a result, we added one more Sinemet to my final dose of the day and went from 3 to 4. That was five years ago. Hallelujah! Minimum problems with lack of sleep or disturbance.

Stay away from Mirapex !

Good luck.

taurusgirl64 profile image
taurusgirl64 in reply to

Thank you for your suggestions. Why stay away from merapex?

20fatcats profile image
20fatcats

I find 2 tablets of combined magnesium zinc and b6 help and raising the top of the bed up a few inches. Keeping warm in winter helps also.

Erniediaz1018 profile image
Erniediaz1018

Magnesium works for me 😊

in reply to Erniediaz1018

What type of magnesium do you use, Ernie? How much is an effective dose for you?

Art

Erniediaz1018 profile image
Erniediaz1018 in reply to

Magnesium citrate powder. My measurements are not always exact, but less than an 1/8 of a teaspoon before bed will work well,

sleezy profile image
sleezy

Thanks for the tip about Benadryl and Alzheimer's. I don't currently take anything to help me sleep because I got into trouble taking so much stuff to try and sleep. My cousin's husband is 87, and still very mentally sound, so Alzheimer's might not be a concern for him as he has COPD and bladder cancer.

JohnPepper profile image
JohnPepper

Hi taurusgirl. I got up this morning before 3 am. I had been tossing and turning for quite a while, which stresses me. I cannot get back to sleep when I am stressed. So, I got up, as I always do when this happens. I either read an interesting but dull book or go to my laptop and work for a while. That calms me down and when I feel a bit sleepy again I go back to bed and sleep. It WORKS!

Suliana profile image
Suliana in reply to JohnPepper

Thanks for your suggestions John are you still taking the ALoe?

JohnPepper profile image
JohnPepper in reply to Suliana

Yes! When necessary!

Suliana profile image
Suliana in reply to JohnPepper

Thank you John. I cannot find it in Australia though.

JohnPepper profile image
JohnPepper

Are you talking about Aloe Forex?

Mekon profile image
Mekon

Hi I find if I wake up between3and4am I cannot get back to sleep .

I call this worry hour .

So what I do is to get up and look on the computer for my favourite funny man. !!!! Pay his clips for 30 to60 mins and then go back to sleep laughing !! It works every time for me .

Try Dave Allen teaching his son the time,,,!!

All the best

Mekon

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