How are people dealing with symptoms ... - Parkinson's Movement

Parkinson's Movement
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How are people dealing with symptoms in the evening/getting to sleep?

Jockboy17
Jockboy17

I'm recently diagnosed, looking to avoid using sleep meds but my left hand, lower left leg and my left foot get really electrified and it makes it really hard to get to sleep. I take my last dose of Sinemet around 8pm but it typically doesn't touch these evening symptoms. I was prescribed Remeron, Requip and Klonopin to get to sleep and it worked but it was dark dreams and cold sweats. I'm now off Klonopin and Remeron and taking the Requip and Gabapentin. Last night was brutal.....couldn't get to sleep and the symptoms just continued all night and all morning. I also notice that my getting to sleep is no longer a natural process like it used to be. Very hard for me to feel sleepy or tired. Seeing my sleep specialist tomorrow. She had me do the sleep lab as she thought maybe sleep apnea. My lab results were normal. any suggestions or personal experience is welcome. john

52 Replies
oldestnewest

Last night I stayed up late. It worked last night. Relatively speaking.

If you are recently diagnosed you may be in panic mode. I went through that, too. I accepted the situation and tried to avoid any stress. Eating half of sweet onion before bed and I sleep well. Just get rid of the stress. I started medication but it does not seem to help too much. I was diagnosed two years ago. I'm still working.

Jockboy17
Jockboy17
in reply to ion_ion

I hear you but my symptoms are real. I'm a little anxious but overall I'm pretty good considering the news.

Maxjc
Maxjc
in reply to Jockboy17

Hi Jockboy...I was in hospital recently and was given magnesium tablet for night time "activity"... best way to describe all symptoms... Worked for me..along with deep breathing and music for sleep... Not sure of dosage but its a definate help. Look into Radical Acceptance too. We have to help ourselves and not leave everything to chemicals/medication.

Take care

Jockboy17
Jockboy17
in reply to ion_ion

Do you not have symptoms in the evening?

ion_ion
ion_ion
in reply to Jockboy17

My single symptom from now is RH tremor which does not go away with medication (amantadine and C/L); actually that's why I take medication, to get rid of tremor. All the other symptoms were resolved with high dose of thiamine. The single way to reduce the tremor is to get in fully relaxed state. As for the sleep also I do vacuum my mind to empty it of any taught.

Jockboy17
Jockboy17
in reply to ion_ion

Vacuum?

ion_ion
ion_ion
in reply to Jockboy17

It was just a funny way to explain you about emptying my mind, it is like yoga exercising. I'm just shutting my CPU and my memory down. Sometimes I just start counting taking 1000 like target. When close to get asleep just repeat the last number till ... sfrrr, sfrrrrrr...and the onion helps with nice colored dreams. Being relaxed is the best medicine for PD.

Lionore
Lionore
in reply to ion_ion

I like this. I like to think of my mind as a sentient being that has been working too hard and just needs to rest. Another yoga routine: starting with your toes, stiffen muscles for a few seconds, then release. Do the same for each muscle up your body ending with your facial muscles. Also magnesium before bed.

Have you tried melatonin and magnesium? Both very helpful.

I’ve also found PEA good for reducing night stiffness but I’m not sure you have that problem though you might if you could get a better sleep.

Jockboy17
Jockboy17
in reply to Astra7

I do take magnesium typically before bed. Only a teaspoon though so maybe I can up that

crazy4sushi
crazy4sushi
in reply to Astra7

What does PEA stand for?

Astra7
Astra7
in reply to crazy4sushi

Palmetoylethanol amide or something like that. It’s an anti inflammatory.

I use broad spectrum cbd oil and melatonin at night and they both relax me and let me fall asleep.

Jockboy17
Jockboy17
in reply to Goldencbc

Thank you for that info. So do you relate to having the symptoms that I shared?

Goldencbc
Goldencbc
in reply to Jockboy17

Yes. I have a right arm tremor and it can keep me awake all night. I was just taking melatonin but sometimes was awake all night like you. When I added the cbd oil it really helped. But only the full spectrum that includes other nutrients from the plant.

Jockboy17
Jockboy17
in reply to Goldencbc

Thanks G

Cannabis is very helpful in that problem. I have that problem also, have very stressful situation now and so tremors keep me up at night, I take more Sinemet and cannabis. It helps.

I’ve had difficulty sleeping off and on (dx’d 2010). Jumpy, crawly legs, trouble falling asleep, vivid, active dreams with lots of verbalizing that frequently wakes my partner - and dog - such that I sleep in the other room occasionally so everyone can rest.

I take gabapentin for legs, use melatonin, up to 9 mgs, also take carbidopa/levodopa 25/100 CR at night and was originally on Prozac before PD dx. My Neuro added Remeron at night when my sleep got really disturbed and depression increased. I have Ambien and Klonopin but rarely use them. The main thing is that if I don’t rest well I get SO tired the next day and feel like crap.

Sometimes I will take my AM C/L when I get up to pee around 5AM and then I’m less stiff when I get up at 7 or 8.

I know I’m on a lot of meds but feel like I need them and they work. I used to be able to sleep anytime, anywhere and awaken rested and refreshed. Those days are gone! Now if I get 6-7 hours I’m happy, but I’m usually very busy in my dreams!

Consequently I don’t always feel rested. I use breathing and mind-clearing to induce sleep too,

Try some melatonin. I was told to not go past 9 mg for sleep. It works pretty well.

I assume you have tried turning off all devices and tv an hour before bed? Go outside early in the morning and get bright light in your eyes, turn lights down very low when the sun goes down. No sugar, particularly after about 6pm. Or caffeine.

You could try a very small amount of mirtazapine/remeron ie about 1/6 - 1/4 of a 30mgtablet if your gp will prescribe it. You could be suffering withdrawal if you were taking it and went off it. My husband weaned off it over months but 2 months after being off it he had terrible withdrawals. Taking a small fraction of a tablet knocks him out but it is so little he isn’t drowsy in the morning any more. Try Hardy’s daily essential nutrients. It was the best thing by far he has tried yet.

Agree with most of the above. I get to sleep ok but wake at 2-3am and go in and out of a dose. Have tried the evening smoothie of pineapple juice, banana, and potato starch which really increases melatonin but although it improves things ie wake at 4am it is still not a completely relaxed sleep.

pdkid
pdkid
in reply to Getz

Hi this sounds like what happens with my dad... Wondering if you have found anything that has helped since this post. Thanks

Getz
Getz
in reply to pdkid

Sorry to say that I haven't and I refuse to take sleeping pills. Next time I order from iHerb I shall get some melatonin and see if that helps. I've also tried that 4,5,6, breathing method but it just seems to wake me up more with the concentration. I've also tried the pressur between thumb and pointer but the clip I used was a bit too strong. I'm still looking for a clip or large peg that simply provides a reasonable pressure that doesn't get annoying. Sorry for not been able to help. Good luck.

pdkid
pdkid
in reply to Getz

thank you for your response, hope you find something that helps too.

here is a recent thread with what other people do, in case you havent tried any of these things:

healthunlocked.com/parkinso...

I've been sleeping much better since I begin red light therapy. See the following article:

abc.net.au/news/2019-02-24/...

pdkid
pdkid
in reply to vwolff

Wow that's incredible. Have been thinking about this for my dad. What improvements have you noticed?

I am thankful to get 5-6 hours sleep a night. I used to sleep 9-10! And my sleep is interrupted. I wake up anywhere from twice a night to every hour. Have to get out of bed and walk to get rid of that electrified feeling you describe. I believe it’s an internal tremor.

Lots of great advice above. What works for me:

1. Meditation and yoga during the day. Made me body aware to help sleep at night

2. Magnesium, both oral and a magnesium cream I buy on amazon. I have tried a few but this one works best for me. amazon.com/gp/product/B01LZ...

3. I am on 4 mg Neupro patch. I know 1-2 mg is used for restless leg syndrome. I also take a bedtime dose of rytary.

Previously took extended release C/L

4. Recently tried 3 mg melatonin at bedtime again and find it helpful

5. Allowing impermanence and imperfection in my life. Sleeping well/not sleeping well/everything else undesirable and unpleasant that comes with PD will pass. Meds kick in, daylight arrives, etc. both the desirable and undesirable states won’t last. As best I can, enjoy when I feel good, try not to dwell on when I don’t. PD is a life changer for sure.

I am diagnosed 7 years ago and overall (knock on wood) doing fairly well. Just came back from visiting two cities where I averaged 18,000 steps/6 miles per day.

Pdga14

Hi, I’ve read a couple of replies that mentions magnesium helps with sleep troubles, I am taking a combo of calcium, magnesium and zinc the label reads as follow: magnesium as magnesium oxide and magnesium gluconate 400mg 95% of daily value. My question is am I taking enough of it to help me with sleep? Also what brand and how much you take. Thank you 🙏🏽

@Jockboy17 I hear you! I’ve been awake since about 4am (typical for me). Sometimes I don’t fall asleep all night! I can’t take Melatonin because I’m on a blood thinner, but it used to help a lot. Some things I have learned that help me are 1) Try to go to bed at the same time each night and 2) NO DEVICES AFTER LIGHTS OUT! (It’s hard to resist, but worth the effort if it gets you sleeping.) 3) Doing deep breathing exercises almost always works for me. 4) White noise. Set that device I said not to use on an app that plays relaxing sounds (waves hitting the beach, a fire burning, birds chirping in a forest, gentle rain), 5) Try to empty your mind. I’m still trying to master getting back to sleep when I wake up at 4am! Still, I hope something here helps you.

boundless
boundless
in reply to Cjbro2000

I have been reading all of the replies and must say,"it is uglyParkinsons" that cause all of our problems that we didn.t have before. Sometimes I don't sleep all night. Other times I fall asleep at 5am. I usually sleep a couple of hours then which ruins the rest of the day. But since I have nothing else to do I accept it.

Another sleep tip (nothing to do with PD, but maybe it would help?) is hot, hot bath, then very fast cold shower. The real way to do it is sauna, then cold pool or lake, if you happen to have one(!) but you can mimic it the best you can. The idea is you want to get your temperature up for a while, then flash cool just enough to be comfortable, then bed right away.

We have access to a hot tub, and I think it really works. I sometimes take melatonin first.

PS--if you don't have tub, then maybe hot shower?

You can also try L-triptophan (3 caps before bedtime the recommended dose) with a 4 oz of fruit juice. It will help to balance the serotonin Levels. We the PWP get our hormones and chemicals in the brain out of balance with all medications intake and by the disease itself. Make your research and try it, is a safe supplement you may find at your preferred natural products store even at the pharmacy and is cheap.

pdkid
pdkid
in reply to marnegro

Have you been d long this for awhile? Do you get at least 6 hours straight sleep? Thanks

This is my first time replying. I had terrible sleep issues for 20 years. I resolved most of my sleep problems before diagnosis 4 years ago. My trouble had been the endless loop of thoughts, some important and most trivial, but all my sleep issues were exacerbated by my right sight electric craziness caused by the Parkinson’s. I had to ignore all sleep advisor advice and go rogue. I put one earbud in; I am a side sleeper and I listen to mindless talk radio. My choice is TMZ live. It puts me to sleep within minutes. When I wake up, I turn it on again and repeat, same news, same mindlessness. The concept is to take your mind off the brain cycling and the physical electrical misfiring. Just a couple of caveats. I try to go to bed sleepy, as late as I can. Also, I am presently taking c/l, Rasagaline and gabapentin. There was an adjustment after diagnosis based mainly on acceptance and forward thinking. Dwelling is where I began after diagnosis and I had to work through that despair. It felt to me like grief. I had to grieve what I thought my life would be and as trite as this sounds, I could not rush through any stage. No, I needed the time to grieve. Cheers and I hope some mindless audio at night helps you sleep!

very thoughtful and much appreciated. john

just curious....do you take the c/l right before bed? how much? when and how much gabapentin?

Hi, I am on 1.5 tablets 4 times per day of the 25/100 mg c/d. I take my night tablets as late as possible (around 10:30 pm). I am on the max dose of gabapentin 2 tabs 3 times per day. I am a 125lb woman with a fast metabolism, presently 59 years young. I try to walk everyday (by saying that I usually make about 5 days of the week). I have taken up golf and always walk the courses. Golf is a walk with a distraction; it takes my mind off the weird symptoms for 5 hours. A little tweaking of meds helps, titrate until you feel okay (my theory). We have a neuro degenerative disease which clearly means it is not getting better. My concept is to work on the meds until you feel okay and tweak as needed. I am still trying to minimize the quantity of meds and I also believe in “the move or lose it” philosophy. Good luck on your journey!

lovely, thank you. very helpful

Good for you! play golf as long as you can! it is great excise and gets you outside.

my sleep specialist doc took me off the remeron (thank goodness-ugly dreams) and put me on gabapentin. what's your view of gabapentin? does it help with internal tremors and sleep in your opinion?

I believe it does take the edge off. Please let me know how you do with the gabapentin.

Does anyone remember the old time mystery radio program called "The Whistler"? I have downloaded several hundred episodes, and this may not work for everyone, but sometimes when I cannot sleep, I start up my VLC media player, and load on these episodes, or those of other favorite old time radio programs (there are literally hundreds of others available, of virtually every category imaginable, free for the downloading in mp3 and mp4, formats). As I begin to listen, I fall right to sleep! It works every time for me.

See oldtimeradiodownloads.com/

Cjbro2000
Cjbro2000
in reply to tarz

@tarz My husband hosts an old time radio program with literally hundreds (500+) of programs that have amazing clarity. He also falls asleep to them. He’s got a lot of Gunsmokes and Dragnets, Jack Benny, Phillip Marlowe, Father Knows Best, Our Miss Brooks, etc. It’s all free - a hobby and labor of love on his part. He narrates them and gives background stories about the shows and actors. You’ll either fall asleep or be glad that you’re awake! LOL You’ll find them at boomerboulevard.com

CarolB

tarz
tarz
in reply to Cjbro2000

Your husband is my kind of people. Long live old time radio and its promoters. Those were the days. I recall in the early 1950's, I was about 10 years old, when my dad was an experimental test pilot at Pt. Mugu, California, and we lived in a house in the Hollywood Hills, with drawbridges, built for Humphrey Bogart. To see it you can google 6310 Rogerton Drive, or go to zillow.com/homedetails/6310...

Cjbro2000
Cjbro2000
in reply to tarz

Wow. That’s quite a house! I’d love to see the inside (altho I’m sure the big attraction to that 10-year-old kid was the drawbridge).

tarz
tarz
in reply to Cjbro2000
PalmSprings
PalmSprings
in reply to tarz

Thanks for the resource, I am going to check these out.

Thank you for posting. I'm sure I'm going to browse through the list

When my sleep failed to materialize I began to vape cannabis right at bedtime. A few draws put me in a relaxed state and quickly of to a good night's sleep. I don't use edibles because it's hard not to overdose and it takes too long to take effect. Besides the c/l and HDT I also take 1000mg magnesium malate twice a day with the thiamine. If needed during the day for tremors 10mg of CBD oil is helpful and doesn't affect my ability to drive or work. Disturbing dreams have quieted and I'm resting without so much pain, cramping, and almost no twitching.

Jockboy17
Jockboy17
in reply to AlpacaGal

Thanks AG

I take 100 mg. of trazodone, hit the sack about 20-30 minutes later, and watch a movie or old TV - pref. black and white -- on my laptop. It's a powerful distraction from the obnoxious symptoms. I don't care what the sleep specialists say. It works for me, and I've tried everything!

I was diagnosed with PD 5 years ago. I have troubled sleep like you. I also have sleep apnea. I have to change my C/L dose before bed to 5.30PM because it made me awake and hard to fall asleep. At first, I tried Temaze but it worked for a while only. Now, 10mg of Temaze makes me sleep only two hours. I tried Melantonin, Magnesium, herbal sleeping pills, not working for me. Then, mu neurologist gave me Endep 10mg which is helping me so far. I can sleep 3 hours straight and then go back to sleep one hour and wake up and fall asleep again. ( Fragmented sleep for 3 hours which make me satisfied with my sleep and feeling better the next day). I also have evening symptoms like you but I accepted it and don't even think about that. The more you think, the more you suffer. As long as I have about 6 hours sleep a night and can move normal next day witht the help of C/L, I am happy. If my condition change and getting worse to get good sleep, I am planning to try CBD. With all in infos from this forum, I hope you get something useful for you.

Good luck!

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