Sleeping with PD: Does anybody have a... - Parkinson's Movement

Parkinson's Movement

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Sleeping with PD


Does anybody have a problem going back to sleep when waking up in the middle of the night just to pee?

As soon as I get back to bed and lied down on my back, I start feeling something weird around my chest area that makes me get up in a hurry. Then, when I try to lie down again, it will happen again until I finally get fed up and walk off to get some snack and watch tv. All these happening while still feeling so sleepy. After the snack, I brush my teeth and watch more tv until I finally doze off.

Does anybody have the same experience?

Any solutions or suggestions to make a smooth transition from peeing to sleeping ?

64 Replies

Could it have something to do with your stomach? Especially since you seem to feel better after eating something.

Pdlolo in reply to parkie13

Thanks for your reply, parkie, but i don’t think the food i eat affects my “back to sleep” problem. I don’t always eat when this happens..and it happens every night.

parkie13 in reply to Pdlolo

I guess, I was thinking more like a heartburn or uncomfortable feeling from eating before.

Pdlolo in reply to parkie13

You’re probably right, ‘cause i was diagnosed with Gerd just last Feb.

I don't have the physical discomfort you're taking about, but I do have issues with waking up and not going back to sleep for 2 hours.

Melatonin definitely helps me some.

Pdlolo in reply to ElliotGreen

Thanks for your reply elliotgreen. What do you normally do for the 2 hours?

I usually take cbd with melatonin before i go to bed and it helps me fall asleep easily, but I don’t need it after being forced to wake up in the middle of the night ‘cause I still feel so sleepy after i peed and I could easily fall asleep right away except for suddenly feeling weird around my chest area that forces me to get up or I might stop breathing.

Carter56 in reply to Pdlolo

I have this chest feeling you talk of. Mine is due to GERD or REFLUX. I dont have any indigestion or heartbearn symptoms but when I had an Endoscopy they confirmed it and said I had GASTRITIS. The feeling I get when I get back into bed is caused by the acid being disturbed.

Esophageal spasms are the tightening of the muscles around the food tube. They happen when acid reflux or other medical issues cause damage within the esophagus.

In turn, these spasms can cause pain in your throat and the upper area of your chest as well.

Juliegrace in reply to Pdlolo

Could the weird feeling be anxiety? I experience that sometimes when I try to get back asleep.

Pdlolo in reply to Juliegrace

Thanks Juliegrace., I think that’s probably part if it.

For me it was sometimes with heavy anxiety. Fought it for a while. Had a talk with my MDS and determined it was an off period. Take a half a Sinemet (12.5/50) at 1:00am when I go to sleep at 10:00pm and sleep till 5:00am fine. Hope that helps.

Somic67 in reply to SGlass

I agree with you. It is somehow related to lack of dopamine that allarms your body and vegetative system. My understanding is that it may be related to the endorphins that come to depend on levodopa. Basically you can sleep only when you are On; when Off there is no way.

Take levodopa may help but not too much (half a dose) to avoid worst problems.

Otherwise try CBD + THC Oil that rebalance the neuro transmitters

SGlass in reply to Somic67

Somic67, thanks for details. Always good to know what might be behind this stuff. Never thought about endorphins depending on dopamine. Could also explain why I get anxiety hit when my half a dose every 2 hours gets off schedule. For those wondering the reason for half a dose every two hours is that the spike from a full dose ever 4 hours dropped my blood pressure to low.

Somic67 in reply to SGlass

Intolerance to single dose spike is due to sensibility due to long use of LevoDOPA.

My idea is that Toxic metabolites of levodopa (es 3-O-MD) accumulates in the body And compete with Levodopa to reach the brain and when they are above a level your body tells you to reduce intake and spikes.

A wash out period (Drug holiday) is suggested To decrease sensibility and restore effectiveness.

PDGal4 in reply to Somic67

What are your suggestions for a washout period and for how long? Sinemet only?

Somic67 in reply to PDGal4

My doc said:

Ideal would be 6 or 7 days fasting and with no meds every 6 months. If not possible reduce days accordingly but no less than 24 hrs.

If you can not stay without meds try 16 hrs fasting every week and support liver detox with glutathione IM and B1 and B12 IM

Pdlolo in reply to SGlass

Thanks for the reply, SGlass... I guess everyone is different, 'cause I have no problem falling asleep while "off".

Somic67 in reply to Pdlolo

i think it depends from how much are patients addicted to levodopa (quantity and period of use).

Sounds like 'Sleeping with the Enemy' :)

Pdlolo in reply to JayPwP

He he he... good one JayPwP, thanks.

Somic67 in reply to JayPwP

Yes. After many years it is like that.

Every things come to depend on (high level of esogen) dopamine And when you miss it your body tells you (with anxiety, sleep problems, etc)

Sleep problems are common with PD. I cannot sleep past 2:30. I get up, take meds, eat breakfast, read paper online and take a nap.

I have had GERD for much of my life, but it had quieted down recently. I am working with PD doc to see if changing meds or scheduie will help., So far, no.

Pdlolo in reply to jackedmonston

Thanks for the very informative link, Jacked.

I recommend to everyone to read it.

Do you have restless leg syndrome?

Pdlolo in reply to Peplaugal

Thanks for your reply Peplaugal , i do have restless leg syndrome but only on my right side snd it doesn’t really show up at at bedtime.

Since i discovered Melatonin I take 500mgr - 1.0mg before bedtime and get 8 - 12 hrs sleep. Fall back to sleep right away. Have been doing it for a couple years with no adverse reaction or effect. I also have GERD

ion_ion in reply to Tato

500mgr-1mg? What that means?

Tato in reply to ion_ion

Mass in Metric system:

1 mg is = 1000 of a gram (milligram)

500 mcg (micrograms) is = 1/2 a mg (milligrams)

1mcg is = 1000 of a mg = 1,000,000 of a gram

1 pound is = 448 grams

1 pound = 16 ounces = 448 grams

In other words, 500mcg is 1/2 a mg (0.5 mg)

ion_ion in reply to Tato

I know both systems (SI and UK) but you said mgr.

Pdlolo in reply to Tato

Thanks for your reply Tato.... may I ask how old you are and how long you have had PD?

It just amazes me how you can sleep up to 12 hours straight without going to the washroom.

My longest straight sleep is probably 5 hours max and that usually happens only when I go to bed so tired and didn't have much sleep the night before....and when I wake up, I could always feel my bladder ready to explode.

Half an hour before bedtime I usually take cbd oil (33 mg) with melatonin (5 mg)...really helpful.... but like I said, I have no problem sleeping initially... it's the "back to sleep" period after waking up in the middle of the night to pee, that I have a problem with. After urinating I would still be so sleepy that I could probably fall sleep standing. It's the lying down back to bed that bothers me a lot.

Tato in reply to Pdlolo

I´m 84 years old, was DX about 5 years ago, but had (unknown) symptoms for about 10 years when a doctor (Geriatrician) told me that i walk like a Parkinson. Confirm diagnosis in Loma Linda and USC, both at Southern California, movement specialist.

Escuse me if i mislead you, i get up once or twice - like normal - to pee, but fall asleep almost inmediatly as soon as i get back in bed-

CBD is illegal here.

I take the melatonin as soon as i am on my way to bed. I started at 5 mg and now i´m down to 0.5 mg- Take it every night

Pdlolo in reply to Tato

At your age, you must be in tip - top shape both physically and mentally..... thanks for your output.

You must be using a sublingual spray to take that low quantity of melatonin and yet very effective.

I really envy people like you who are on top of their sleeping habits, 'cause since I was young, sleeping has always been my weakness.

I have issues like you, although not every night. Sometimes eating helps as I think I have low blood sugar issues. I take magnesium a few hours before bed and melatonin later. I have also experienced tightness in my chest muscles from reading with head down, etc. I use a heating pad, muscles rub and massage to loosen it up, that helps a lot. Look into gerd info by Drs like Dr Axe, Dr Mercola, etc, natural relief.

Pdlolo in reply to Rosenmu

Thanks for your reply Rosenmu... although it's an unpleasant condition, it's still comforting to know that I am not unique in my situation.

Same like you, I have low blood. I take melatonin and magnesium (glycinate, threonate and taurate). For gerd, I take Iberogast. From Dr Mercola I take probiotics and enzymes. I use magnesium chloride gel for muscle spasm.

This disease really sucks! If not for the unconditional support that I get from my wife and daughter, I'd probably be in a wheelchair rotting in the corner of who knows where...

Rosenmu in reply to Pdlolo

I haven't figured out yet why I sometimes do that and not all the time.

Somic67 in reply to Pdlolo

have you tried for GERD to remove any carbo from diet (bread, pasta, pizza, potatoes, rise and legumen and, for sure, sugars)?

it has given significant results in 1 week to a number of people in Italy

Pdlolo in reply to Somic67

Thanks for your reply Somic67, but most of my favorite food to eat are rich in carbo and sweets. Ive actually lost around 15 pounds the last year and a half. I’m 5’6” and weighs 129 lbs. I’ll still consider your suggestions and probably re-gain my weight some other ways.

Somic67 in reply to Pdlolo

i fully understand.

Have you ever asked to yourself why it is easy to skip to eat meat, fish, eggs, some dairy products (not all) but not the carbs in a "piatto di pasta" (not necessarily a sweet)? Why we are easily tired of eating every day the same vegetable, fruit, meat or fish but there is always space for refiend flour products;

They can contains up to 85% of carbs that are sugars at the end of the transformation in the body. Sugars are like a drug for your methabolism (a turbo) but give also insulina and cortisolo spikes, acidic methabolism in cells (sugar fermentation insted than fat oxidation), acid waste in the blod stream and the limphatic system, fat and tissue inflammation and, according to some doctor, many modern deseases, including GERD.

Try to avoi any kind of carbs foods after lunch (lunch to be your last share of carbs) and see if you notic any difference in the night. If it does, then you may be on the right direction to solve the problem.

Pdlolo in reply to Somic67

Thank you.. i will try it for sure.

Somic67 in reply to Pdlolo

let me suggest you my favorite dinner: liver (from grass fed cow and cooked raw, if possible, in coconut oil) with peeled raw cucumbers in extra virgin olive oil, apple winegar and raw salt (or in alternative cooked spinach)

You get everything you need: water, minerals and water soluble vitamines from a raw vegetable easy to digest; high quality proteins, good fat and omega 3 and fat soluble vitamines from a superfood

if you want an easier digestion, eat the vegetable at lunch and the liver at dinner.

Weight is not a problem and will stabilise by itself when all the useless water in your body will go away due to carbo reduction

Pdlolo in reply to Somic67

Hmmm. ... I’ll consider that. Thanks!

Sorry to hear that you cannot sleep well.

3 things have helped me a great deal:

1. Melatonin; both standard 1 mg tablet and a slow-release form

2. Magnesium-threonate; increased my sleep quality significantly.

3. Lavender oil sprayed on side of my pillow; I also sometimes take 1-2 sniffs from a Tisserand lavender bottle (although it is not intended for this purpose).

Lemon balm has also been reported to be helpful by some.

Pdlolo in reply to MehmetKutlu

Thanks for your reply Mehmet, I'll take note of that.

If I lie down on my back right after eating, I will always give myself GERD (acid reflux), and I have very similar sensations to what you described. In reading expert's recommendations about how to prevent GERD, one of the major points is to never lie down right after eating. However, if you have to lie down then, they say try turning over on your left side. That will put your stomach in a position relative to your esophagus that will make it less likely to get GERD. I've tried it and it does help (but it's not an iron clad guarantee that you won't get any GERD).

Pdlolo in reply to HeartSong

Thanks HeartSong... my problem with lying down on the side is that I always develop a stiffed neck.

HeartSong in reply to Pdlolo

I just remembered another fix the experts suggested. Try elevating the head of your bed so that your head will be a little higher than your stomach. I put a 4 inch thick phone book under each of the two posts at the head of my bed. It helped.

Read everyone's responses with interest. Could be GERD or acid reflux, but could also be dystonia or dyskinesia of diaphragm causing breathing issues. I have gone to the ER for this; first time it happened, complicated by anxiety. I have started taking 1/2 CL in middle of the night when I wake up and experience breathing difficulties when I get back into bed.

I also wake up multiple times per night. On a good night, 2 or 3 times. On a bad night, every hour. First wakening is genuinely having to pee; ones after that I do walk to the bathroom, but mostly to dispel excess energy in my body. I also think my body cannot roll over when I am asleep or the action of doing so wakes up.

I do mindful meditation during the day; the ability to clear my mind and relax has helped with going back to sleep each time I wake up.

Pdlolo in reply to PDGal4

Thanks PDGal4...... I used to have that heavy breathing problem every night.

My son in law suggested to use a puffer that the asthma sufferers used . My doctor has no objection to it . So I started using it and it was a big relief. Now, my breathing problem has completely disappeared.

Somic67 in reply to Pdlolo

Can you better explain what do you mean with “heavy breathing” problems?

Can it be due to autonomous system problems/disfunction?

Pdlolo in reply to Somic67

It was more like experiencing shortness of breath. These episodes happened suddenly when I was “off” late at night. I think they’re more like panic attacks. Twice my wife called 911 ‘cause I thought i was gonna die if i lie down to sleep. The puffer was my miracle worker.

Somic67 in reply to Pdlolo

Oh my G**. it is a nightmare. good that you solved it.

May I ask you something more?

Are you still using the puffer every night?

or you don't need it any more? if so, any idea of why?

I elevate my upper torso to relieve my hiatil hernia that I denied for years. Now I sleep on an adjustable bed.

Pdlolo in reply to Oldearkie

I also have an adjustable bed so I normally sleep with my head slightly elevated.

Still, it does nothing to help me get back to sleep.

I have had many problems sleeping with PD. I learned in my testing myself that Parkie is like a monster attacking. If I close the door, he comes in the window, and if I close the window, he comes in the chimney...and so on. In other words, I learned that whatever I tried to help my sleep only worked one time, and the next night would not work. So....I tried to take all the workable regimens for getting and staying asleep, or getting back to sleep and varying them every night from one workable regimen to another. This has helped immeasureably.

In addition, I split up the vitamins and minerals (etc) into before bed and about half way through the time I'm in bed.

I now take melatonin 2 mg before bed and 2 mg at about 5-5:30 a.m., B1-100 mg both times, B-5 pantothenic acid 500 mg. both times, Valerian root 3 capsules before bed and one at 5:00-5:30 am. (alternated with 3-L-Tryptophan before bed and 1 at 5:00 - 5:30 am....I alternate these every night) and a big teaspoon of "Calm" magnesium with Calcium before bed and at 5:00-5:30 a.m. both in 1/2 cup of boiling water.

I was also advised by Dr. Datis Kharrazian to try to avoid blood sugar spikes up or down, so I eat before bed. What works best is veggies, nuts, yogurt... (what I call "slow converters"), NO sugar, NO spicey food, no heavy or greasy proteins...etc.

Getting exercise helps a LOT too. I learning this even before PD, that getting significantly less exercise than usual the day before sleeping makes sleeping more difficult.

And, in getting up several times to use the restroom at night, I put on a sleeping mask after 4:30 a.m. until getting up the final time. Avoiding "blue light" before bed or during the night also helps.

Pdlolo in reply to CapSage

Wow! Capsage.,. That’s a lot of a regimen to take and follow just to be able to do what we normally ignore, under appreciate and abuse for a lifetime just because it occurs to us naturally since birth..... sleep.

CapSage in reply to Pdlolo

Yes, and it meant enduring hell finding out what worked even marginally well....proving things could certainly be worse...because they were worse before! I'm glad to be here and able to do what I can to be productive and hopefully helpful to others.

Pdlolo in reply to CapSage

I like your attitude and determination. This forum needs more people like you

CapSage in reply to Pdlolo

Thanks Pdlolo! May we all be blessed with a cure very this lifetime....

Make the best of it.

3 am

It is quiet outside, in another hour the sunrise will start. Lots of people see sunsets but sunrise, not so many. The flowers in the garden look unreal in this light.

Have a coffee and a piece of that left over apple pie. Pre-covid you could go and sit at the donut shop and wait for friends and old neighbors to come. That will be norm again eventually.

Todays newspaper will arrive shortly and bounce off the garage door.

Read the paper or look at the computer , check out Healthunlocked, online games are fun. Great time to paint a picture or wood working by hand .

Just dont wake anybody up.

Around 7 am ,meds all taken and time to have a nap, wash the dishes first, back to bed. Did you notice that the pain was much less.

No one else understands why you are not in their time set as if sanding a piece of wood at 4am was forbidden and napping at 4pm was selfish. Why be so regimented and unbending, eat when you are hungry, play when you can, work when it is possible , and sleep when you are tired. ( not like the army).

Its not easy being me or you

sometimes you have to just make the best of it.

Your wife or husband will stop complaining eventually, just dont eat the last piece.

Pdlolo in reply to GymBag

Thanks for a unique and inspiring “glass is half full” reply, Gymbag. I don’t really know how to respond to that.

Be happy

There is lots of good advice here.

Mt regime is: go to sleep at sleep at 11.00 pm.

Wake up are 3.30am, empty bladder , take one Madopar (100/25) make a caffeine free coffee and a slice of toast, transfer to Lazyboy chair, the watch TV or iPad and doze off until; about 6.00am

I have been in this routine for several months -it works for me

Pdlolo in reply to condor39

Thank you for your reply condor39...Me, you ... the same routine, except:

You Me 12:00 midnight

3:30am. 3:00am

Madopar. Dopaboost

Coffee. Ensure

Toast,sliced. Toast French

Lazy boy. Adjustable bed

6:00am. 8:00 am the earliest

Has anyone tried ZMA?

ZMA: Research on Zinc, Magnesium, and Vitamin B6 Supplements. Webmd.

ZMA is a natural mineral supplement made up of zinc, magnesium aspartate, and vitamin B6. Zinc supports your immune system and muscles. Magnesium plays a role in metabolism and muscle health and helps manage sleep. B6 may boost energy.

Pdlolo in reply to aspergerian

Cool site, aspergerian... thanks for sharing. I’ll check it out deeper... just wondering why they need my email.

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