Jump to content
helplinedonate
avbunyan

Do any of you here sleep - I get little or none

Recommended Posts

I know PD folks can have trouble sleeping.   Have had PD for almost 9 years now and used to treat with sleeping pills but quit those horrid things @ 6 years ago.   Then I was able to sleep again but insomnia has reared its ugly head about 3 months ago.  I've tried every non-prescription natural sleep aid out here - have read all the usual stuff but have resigned the fact that this PD just won't let me.  I have 2 hopes left - one is God says in Psalms he gives his beloved sleep but haven't seen that come to reality yet but I believe the book but sometimes the Lord's timetable is not ours so I will be patient and trusting.  My other hope is once my fractured collar bone heals up I will get out of this recliner and have more freedom of movement so I can really get into some serious exercising which I believe will help. 

Your thoughts?

Edited by avbunyan

Share this post


Link to post
Share on other sites

Exercise will help.  I don't take sleeping pills but I do take an anti depressant at night. I'm guessing you tried lavender oil on your pillow case and relaxation techniques ....

i just ordered a free book off the NPF website about PD & sleeping. 

 

LAD 

Share this post


Link to post
Share on other sites
27 minutes ago, LAD said:

Exercise will help.  I don't take sleeping pills but I do take an anti depressant at night. I'm guessing you tried lavender oil on your pillow case and relaxation techniques ....

i just ordered a free book off the NPF website about PD & sleeping. 

 

LAD 

Thx LAD for your response - Yes, I've tried most of what is suggested on sleep issues but I am beginning to see that PD is really a bummer for sleeping.  Of course right now the excercise issue needs to be addressed and will be after I recover from the broken collarbone. Of course there is a lot going on in my life right now due to me just retiring from my company after 20 years due to the PD issue and the transition has been somewhat challenging so my mind is racing with all the new changes so I need to control my  mind.  Hope the book you've purchased will help you.

God bless!!!

Share this post


Link to post
Share on other sites

Exercise is great for sleep and a multitude of other PD symptoms. Melatonin worked for me, however the side effects were terrible. The best sleep aid I've found is a few tokes of cannabis in the evening. Very calming. Some strains are better than others.

Share this post


Link to post
Share on other sites

Hey AV,

I've really upped my exercise game since December. I'm up to swimming a mile each evening. (The pool is about 3 minutes from my house so it's easy to get in and out.) I also started taking Azilect in late December. Those two things seem to have gotten me up to 6 hours of sleep each night without the night sweats and vivid dreaming and kicking in my sleep. I also use a CPAP machine for sleep apnea and I also take 10 mg of melatonin.  I still get some of the insomnia issues but it's been pretty mellow. I'm so grateful for small improvements.

 I know how terrible it is to go to bed at 1130 pm, wake up at 230 am stay away until 5 am and then sleep to 7:15 am. I did that for most of 2017. The dreams were the worst part and a couple of times I woke up frozen and couldnt move - terrified.  For a while I tried to go to bed later and later, around 12 midnight, 1 am and  then hoped to wake up at 6 or 7, but that never worked.

Still, I'm not completely fixed, but it's better. Generally, my wife sleeps way more soundly than I do. Usually she goes to bed before me by about 30 minutes or so and sleeps straight through until about an hour after I get up.... I admit I'm just a little bit jealous. 

Hang in there.

-S

Share this post


Link to post
Share on other sites

It's a bit convoluted but here goes:

Not sure what type of insomnia you have.  Difficulty falling asleep or sleep maintenance problems (you fall asleep but wake up at 3:00 a.m.).  I started with the inability to sleep.  Was getting about 30-minutes of sleep every three or four days.  Felt wonderful in the morning regardless that I did not sleep.  My MDS did not think that was a good situation.  He's big into sleep as a Parkinson's aid.

Parkinson's medications (Carbidopa-Levodopa; Entacapone) really helped me get over the first hump--calming the body enough so that it could sleep. 

Supplements like L-Theanine that calm the mind (and help my body and brain counteract the side-effects of the C/L); Melatonin; sleep supplements with herbs such as Valerian, Hops and Passion Flower seem to help me more with the initial falling asleep issues but once I began falling asleep, I noticed the sleep maintenance problems.  Waking every morning at 3:00 a.m.

Tried Benadryl (anti-histamine with diphenhydramine) and while it probably worked the best to that point (on both types of insomnia), the bad side-effects like an inability to really wake up in the morning (felt groggy all day) made me put it away.

Mybetriq:  Because Parkinson's had invaded my urological system, my MDS referred me out to a urologist whose second or third subspecialty is Parkinson's.  The drug seemed to work for about 10-hours before slowing leaving my system, even though the manufacture and FDA claim it works for 24-hours.  Used it at night-time to try and eliminate the need to wake up at 3:00 and use the head.  Another slight improvement, but not perfect and then it left me exposed most of the waking part of the day.  We upped the dose to two-tablets per day (taken at the same time) and it really well.  Our next step was to be Botox injections every six months but I'm still hesitating.  Later I started probiotics (more about that later) and I'm back down to one tablet per day that helps not only during the waking hours but while asleep.

The most help I received for sleep maintenance problems was from people with diabetes and pre-diabetes.  Got on this side-note from something my MDS said in mid-2017 about a study finding that while PwP may not have diabetes or pre-diabetes, their bodies were responding to diabetic medications.  So I wondered what problems people with pre-diabetes and diabetes were having, and what medications were they using that could possibly help a PwP.  About this time I read that some people with pre-diabetes and diabetes would wake up at night and eat a midnight snack, after which they would fall asleep.  Apparently high blood sugar or low blood sugar, I can't recall, would spike in them and wake them up at night.  Not knowing why they were awake, they apparently felt the urge to eat and the food would then reduce the spike and they would fall asleep again.  So I tried a midnight snack at 3:00 a.m. and it worked. 

My MDS is not thrilled that eating a midnight snack worked, but is happy that I will now only get sleep maintenance problems once or twice per month.  (I am not pre-diabetic nor do I have diabetes.)

As a midnight snack I first ate a granola bar, then one-half a granola bar, and now generally get by with two whole wheat crackers if needed.  Doesn't work all of the time, but for me it has probably around 95 percent of the time.  And I'm not sure if my body is re-learning how to stay asleep, but I now only have to use the snack method at most once per week.  Many times if I wake at 3:00 I can get back to sleep with yoga style breathing.

More recently I also noticed that sometimes it isn't even necessarily the eating of food, but the swallowing of saliva that was needed.  So, I will forcibly swallow saliva about 20 times and that seems enough to put me back to sleep.  I have no idea why.  It's hard to make those swallows at night, especially since Parkinson's seems to want to make my mouth drool saliva through the lips, rather than send it down the back of my throat where it used to flow.

Probiotics: major improvements noted with all medications and supplements (for example: marked decrease in the time it takes to get C/L into the system, operating, and it's intensity and duration), constipation and a host of other issues.  This boost in medication strength seems to have helped with my sleep--or is it that the probiotics help with sleep?  I don't know how they work or much about probiotics, other than they have been an immense help to me.

Ultimately, not one item has totally helped me, but rather each has been a baby step forward.  Now I'm addicted to sleep and really feel the impact from a good vs. bad night sleep.

Okay, probably went way overboard with this explanation, and probably missed the question completely.  If so, I'm sorry.  I blame it on Parkinson's (and the probiotics, and the sleep that free my mind and fingers enough to write).

Cheers.

  • Thanks 1

Share this post


Link to post
Share on other sites

I  have mild sleep apnea and use CPAP. Diagnosed around the time of PD diagnosis. Slept well until last few months when I would wake up around 3 am and have hard time going back to sleep. MDS recommended trying Melatonin in a 5mg dose first for a week, then 10 mg if need be. If that did not work then I am to try 1 cap of Rytary and see if that helps. Melatonin in a 5mg tab seems to work for me so far. (Last dose of Rytary is around 5pm). No ill effects. Deeper sleep will produce more dreams I think. 

Share this post


Link to post
Share on other sites

A family member just received advice from a sleep disorder specialist (physician) to use timed release melatonin.

She immediately achieved relief from awakening multiple times at night. She is not PD but has had intractable sleep issues and, like you, has tried "everything".

https://www.remfresh.com/remfresh-continous-release-melatonin-exceeds-target-sleep-maintenance-threshold-6-7-hours

Hope this helps.

Share this post


Link to post
Share on other sites

Exercise and fresh air will definitely help. With spring coming maybe you can get outside. It was very difficult 10 years ago when things started. Sertraline was prescribed for anxiety and depression. It was hard for me to take during the daytime, so it was prescribed to be taken at bedtime. That with a combination of melatonine, valerian root,  and turmeric curcumin pretty much works. If I know I'm going to have special difficulty in getting sleep I add a half tab to a tab of ibuprofen p.m. or very small amount of clonazapam. The ibuprofen or clonazpam is approved by my MDS/neurologist that specializes in PD.  The melatonin, and turmeric was introduced by a sleep specialist. The valerian root was advised by a organics health drug store. That was came about later on in the process and was quite effective. I  really try to rely on exercise during the day the most.

I'm on CPAP as well. You'll get different words of advice. You just need to find out what works for you. Obviously start out on lowest dosages as possible is my advice and on as few of whatever drug you're going to take.

Best of luck.

 

Share this post


Link to post
Share on other sites

BigRingGrinder-I've tried most of what you mentioned in your great post and have found they all help to some extent.  I was very interested that you mentioned eating because that helps me a lot but I didn't know why. 

Share this post


Link to post
Share on other sites

Hi BigRIngGrinder, 

In your Mar 13 post, you mentioned that you had taken L-theanine to counteract the side effects of carbidopa/levodopa. Can you suggest a starting dose and when  to take it? 

Thanks, Karl 

Share this post


Link to post
Share on other sites
46 minutes ago, PDpatient said:

Hi BigRIngGrinder, 

In your Mar 13 post, you mentioned that you had taken L-theanine to counteract the side effects of carbidopa/levodopa. Can you suggest a starting dose and when  to take it? 

Thanks, Karl 

Hi, Karl:

I started experimenting with 100mg (the smallest dose / pill I could find), one time per day. 

At the time, a friend had suggested L-Theanine to help with muscle fatigue / massive exercise intolerance, and to help build back lost muscle.  Not sure how much it helped with the muscles, but what I first noticed was a disappearance of brain fog.  A calm mind.  A greater ability to deal with stress.  I could think.  I could concentrate.  I could read a book, or a chapter.  I could relax.  My mind was clear.  And I was overjoyed with those unintended benefits!

Next I noticed the effects did not last all day, so I tried taking L-Theanine twice a day.  That worked, but then I noticed a gap in the middle of the day, so I tried taking L-Theanine three times per day.

I went through periods of disbelief a number of times where I would stop taking the L-Theanine only to have the garbage return and then go away like magic when I started taking L-Theanine again.

I think it was in 2016 or 2017 while participating in a drug study that I began to notice a correlation to the timing of my C/L medications and the brain fog, so experimented with taking L-Theanine at the same time as my C/L (5x day).  That helped immensely and the effects remained all day and night.

At some point I found that 200mg had a greater impact than 100mg.

Side effects noticed with L-Theanine?  A re-emergence of motivation.

L-Theanine isn't a cure all supplement, but it is sure nice to be able to walk around and look out a clear window, rather than one fogged over.  To read a book.  To concentrate.  To walk up to a street intersection and remember to stop and look for traffic before stepping into traffic.

Maximum dosage: I think I read once that 1,200mg was the recommended maximum while others reported no maximum.  I would need to research that further.  A doctor of Chinese medicine might be a good place to start to find that information.

My dose remains 200mg, 5x day, taken at the same time as C/L.

Hope this answered some of your questions.  It's an on-going experiment.  I do not know how it is supposed to work, I just know it works.  I do not know the best timing or dose, I just notice what works with me.

Cheers.

Share this post


Link to post
Share on other sites
On 3/17/2018 at 11:02 AM, Peace said:

BigRingGrinder-I've tried most of what you mentioned in your great post and have found they all help to some extent.  I was very interested that you mentioned eating because that helps me a lot but I didn't know why. 

Same here.  I put a mini fridge in my bedroom.  Lots of yogurt, meat snacks, and other treats in there.  I cant sleep unless my stomach is full.

 

Share this post


Link to post
Share on other sites
On 3/13/2018 at 7:44 AM, LAD said:

Exercise will help.  I don't take sleeping pills but I do take an anti depressant at night. I'm guessing you tried lavender oil on your pillow case and relaxation techniques ....

i just ordered a free book off the NPF website about PD & sleeping. 

 

LAD 

I got a relaxation tape for my husband.  Some nights it helps and some nights it does not.  

Share this post


Link to post
Share on other sites
On 3/16/2018 at 8:07 AM, fire1fl said:

A family member just received advice from a sleep disorder specialist (physician) to use timed release melatonin.

She immediately achieved relief from awakening multiple times at night. She is not PD but has had intractable sleep issues and, like you, has tried "everything".

https://www.remfresh.com/remfresh-continous-release-melatonin-exceeds-target-sleep-maintenance-threshold-6-7-hours

Hope this helps.

My husband's Neurologist is a very big believer in Melatonin as well.  It must be taken every night NOT JUST WHEN YOU CAN'T SLEEP.  She also recommends relaxation tapes and to make sure your medications are taken at the same time every day (very important).  

Share this post


Link to post
Share on other sites
48 minutes ago, scaredsenseless said:

My husband's Neurologist is a very big believer in Melatonin as well.  It must be taken every night NOT JUST WHEN YOU CAN'T SLEEP.  She also recommends relaxation tapes and to make sure your medications are taken at the same time every day (very important).  

Hi.  Does he have REM Behavioral Disorder by any chance?  I’m beginning to act out some of my dreams and even respond to them verbally. I know I’m doing it too; very aware of it.  It’s not every dream and mostly I can only sleep 2-3 hours at a time anyways.  I take melatonin every night and it doesn’t seem to help me, sadly.  I’m pretty sure I have Parkinson’s but have no official dx.  I just feel I’ll gey laughed out of the office if I even suggest it.  Hope you’re doing well.

Share this post


Link to post
Share on other sites

I have tried everything

I currently take  1 trazadone, melatonin, and valra root. I still lay there for a long time before.  I exercise every day. 

I would die for a good night sleep 

Share this post


Link to post
Share on other sites

Suggested this earlier. Any result?

https://www.remfresh.com/remfresh-continous-release-melatonin

 

Share this post


Link to post
Share on other sites

Noah,  You might ask your doctor about an increase in the Trazadone.  The 100mg worked for a short while for me before my doctor increased it to 150mg.  I've been on that dose for a year and it is still working.   I hope you find relief soon.  Gardener

Share this post


Link to post
Share on other sites

I've been using a combination of valerian root, melatonin, turmeric, and an antidepressant (sertraline) with pretty good results. Usually wake up 2-3x times per night to go to the bathroom,, which is obviously an age related issue as well. On occasion, make it all the way through the night, or wake up only once.

A cheap pair of headphones with relaxation tapes is can be a big help.

Hopefully this helps.

Share this post


Link to post
Share on other sites

How much melatonin and Valeria tot do you take 

i have never really got an answer to they question 

How do you use the turmeric 

Share this post


Link to post
Share on other sites

With ne i found the sleeplessness is caused to a large degree by the medication. So i try to avoid taking sinemet after 4 pm and i stopped neupro (agonist) and now i can sleep again

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×