AS A PERSON WITH PD,AND TAKING C/L,HO... - Parkinson's Movement

Parkinson's Movement
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AS A PERSON WITH PD,AND TAKING C/L,HOW DO YOU GET THROUGH THE NIGHT?

OREOLU
OREOLU

HI Friends, I want to learn from your experience please. If you have to wake up to go to the bathroom and night,and you can't function from the bed to the bathroom,do you have to take additional sinemet or other c/l brand in other to function at night ? If so what is your drug schedule and how many do you have to take at night,in addition to your day time pills?

42 Replies
oldestnewest

One IR tablet 6:30, 10:30, 2:30, 6:30, again 8:30

OREOLU
OREOLU
in reply to RoyProp

Hi RoyProp, I want to know if you take C/L in other to function at night ,that is ,in the middle of the night,if your last dose before going to bed wears off.

RoyProp
RoyProp
in reply to OREOLU

Yes

Hi, I don't remember do you take thiamine HCL? Till I started it I was having horrible time trying to get in and out of bed. Also, my schedule is little bit different from Roy's. for one thing I take continuous release generic sinemet. I do take 25 / 100 mg. I do take sinemet through the night, otherwise I would be shaking and my toes would be curling under. I take one at 10 p.m., then starting my new day, one about 4:30 a.m.,then about 9 a.m. then about 1 p.m. and between 4 & 6 p.m. and 10 p.m. also some days I take another sinemet and I break it in half and I take 1 + 1/2 for the most active time in my day. that would be time at 9 and time at 1 p.m. so, everyone is different. It seems to be working the best for me. Took me awhile to make this adjustment. I have been diagnosed for 7 years and I need more sinemet to function through the day.

OREOLU
OREOLU
in reply to parkie13

Hi parkie13,

I tried HDT at about 3 years post diagnosis for a month and it seems to make the fatigue worse for me so I quit.I started with 500mg twice daily. Maybe I will try it again.I am roughly 4 years post diagnosis and i am on generic sinemet , 25/100 mg ,2 tabs at 8:00 am,12:00pm,4:00pm and 8:00pm. I recently just started having increased "off " period symptoms especially when I don't sleep well and it has extended into the late nights.I have a video call coming up with my MDS next week. I might switch to slow release c/L I pray the drug options continue to work. I will call my doctor to see if I can take something at night.Thanks for your kind response.

parkie13
parkie13
in reply to OREOLU

I do take melatonin, 5 mg, before going to bed. From my experience when you first start B1 especially since you took it before, you might want to start with a bigger dose and continue till you're feeling better and then after a while taper it off to a more manageable dosage. I believe the feeling of tiredness can be caused by almost anything. Glutathione is a good one and coenzyme Q10 or ubiquinol is a good one too. good luck, we're all going to need it

OREOLU
OREOLU
in reply to parkie13

Hi parkie13.

I was taking COQ10 before with melatonin,but my doctor who does not believe in supplements prescribed mirtazapine 7.5 mg at bedtime for me,and asked me to stop COQ10 and melatonin.The mirtazapine worked for awhile,but then stopped working so I switched back to 2.5mg melatonin at11;00pm and 12 midnight. I do appreciate you my friend.

LindaP50
LindaP50
in reply to OREOLU

I've learned many neurologists do not believe in any kind of supplements due to not being "proven" to be effective.

Some HealthUnlocked folks have been very lucky to find a neurologist who listens and will say sure try the supplement, try HB1 - see if it helps.

HB1 has helped my husband.

I take the CR version at bedtime and it gets me through the night.

Hi park_bear,

thanks again for your thoughtful support. It's seems the CR version of C/L will do the trick.Are you taking Rytary or another brand?

I take three times a day (6 am; 11 am; 4 pm) the following: 50-200 CR and 1/2 25-100 IR. It works well at bedtime, I take 15 mg of Remeron and 6 mg of Melatonin CR

OREOLU
OREOLU
in reply to Rlp1

Hi Rlp,

how many hours of sleep do you get with your combination of Remeron and Melatonin?

Rlp1
Rlp1
in reply to OREOLU

6-7 hours

OREOLU
OREOLU
in reply to Rlp1

That's great,the last time I slept for 6hours was before my PD diagnosis even then,I was on an anxiolytic,which aids sleep by treating anxiety.

OREOLU
OREOLU
in reply to OREOLU

Hi Rpl1.

Thanks for taken time to respond to my post.God bless.

My neurologist put me on two

sinemet 100x25 er at night to help

OREOLU
OREOLU
in reply to Ramondo

Hi Ramondo,

how many hours of sleep do you get from your last dose of bed time C/L?

Ramondo
Ramondo
in reply to OREOLU

I wake every 2 -3 hours unless I use the occasional sleeping tablet,

More than a year ago I started my husband on vitamin B1 hcl. I think it’s important to get your B1 dose sorted out first. As I read that everyone was taking high dose B1 I started him on 500 mg and after 2 weeks increased to 750 mg and after another 2 weeks to 1000 mg. At 1000 mg his symptoms got worse. We stopped 3-5 days and cut back to 500 mg and reduced until now he is on 100 mg 6 says a week. We recently started melatonin for his nocturia and he is taking 4 mg. Would like him to take 6-8 mg but he is resistant. Too much B1 and melatonin can give active dreams so you have to know which is the culprit.

OREOLU
OREOLU
in reply to Millbrook

Hi Millbrook,

you are complete different with your husbands's B1 dose( i.e 100mg 6 a week)compared to most people,whose thread I read hear as per High dose thiamine. I thought there is a standard lay down by Dr Constantini(RIP doc).

Millbrook
Millbrook
in reply to OREOLU

Hi. There is no standard dose and those who started on 3-4 g a day have found that over time they actually have to reduce the dose. So any worsening of symptoms is not due to a real deterioration but just too much B1 hcl. My husband was on 100 mg a day for about a year and began having active dreams . So I reduced it to 6 days a week and active dreams have stopped. There are a few of us on this forum who are good with low dose. And those with high dose have gradually had to reduce dose over time, not increase.

The nocturia became much better after he took melatonin- it’s a miracle

He wakes up 1-3 times now on 4 mg of melatonin. For years he was waking up 6-8 times a night. With pumpkin seed extract it became 3-5 times n with melatonin it’s been great. He says he’s not greedy and does not want to increase his melatonin dose.

I take the slow release levodopa 100/25mg 1 tablet at bedtime it last’s 8 hours. I hope that’s helps😊

OREOLU
OREOLU
in reply to Cindyross

Hi Cindyross,

with the slow release 25/100mg tablet that you take at night,are you able to function well,late at night,if you have to visit the bathroom?

Cindyross
Cindyross
in reply to OREOLU

No I don’t ever have to get up to go to the bathroom but I don’t sleep very well but I think it’s because of the pain in my right foot because I fell. And sprained my foot🤪I am so silly

LindaP50
LindaP50
in reply to Cindyross

Wow! You don't have to get up to use bathroom. We bought my hubby (he has PD) a urinal with a tube so he doesn't even have to get out of bed. For me, I'm up at a minimum of 3x a night to use the bathroom. I know, I know - I'll call a dr soon - but the Covid kind of has my life slightly frozen. :)

My hubby has had PD over 10 years & we'd rather he not take any more C/L than necessary as he was getting hallucinations from it & other PD meds.

He also has nocturia & averages 1200-1600 cc -sometimes more- urine at night. We set 3 alarms to wake him up because adult briefs won't hold that much.

It took him a minimum of 25 minutes each time to get in/out of bed & to/from the bathroom. I would need to help him too. Neither of us was getting much sleep.

Finally we started using external catheters at night. Now there's no need to set alarms or take extra meds, etc. & we're both getting more rest.

Hi ParkinsonSpouse,

Thanks for your response,I really appreciate you.I guess your husband has been taking gradual increasing dose of C/L with time.Does he have other co-morbidity which he takes medication for?

Meds are controlling his hallucinations. Hallucinations began about 3 years ago.

He recently started meds for cognitive/confusion issues.

He started meds for restless legs a few years ago...those meds were decreased about a year ago.

Early in his PD he experienced a lot of pain & very painful cramping, meds have helped with that too.

Actually his C/L hasn't increased too much for a few years now. The last increase of 1/2 a tab, twice a day didn't help his mobility much at all, but increased his hallucinations, so the increase was reduced to 1/2 tab once a day. He takes 2 1/2 C/L in the morning; 2 in the afternoon & 2 in the eve.

He also experiences orthostatic hypotension from time to time. It's gotten much better since stopping blood pressure meds.

"9 Natural Sleep Aids That Are Backed by Science"

I take many of these and notice the difference when I don't take them. I also take a 50/200 CR at bedtime.

healthline.com/nutrition/sl...

OREOLU
OREOLU
in reply to MBAnderson

Hi MBAnderson, I like your link,very detailed,I sure will try,something out of this list,which I haven't tried before.Which of this Aids work for you.

MBAnderson
MBAnderson
in reply to OREOLU

I take melatonin, Ashwaganda, Saw Palmetto, Unisom, magnesium, Valerian root, & L-Theanine. Usually, I rotate those because I believe most all sleep aids lose their effectiveness over time.

OREOLU
OREOLU
in reply to MBAnderson

Hi MBAnderson, you are right,I don't know why they lose their effectiveness over time.

Hi oreolu, I take meletonin 10 mg at 8pm then at 930 pm I take 1 macuna puriens by Barlow . I take another10 mg of melatonin at 10 30 PM. Then I go to bed and sleep til 12 30 am .. at 1230 I take 2 sinamet cr 100/25 and I sleep well til 6 am. The meletonin made all the difference in the world. I tried cutting it back but it didn't work as well. . Sometimes it takes the sinamet cr an hour to work . But I'm now getting a longer deeper sleep and feel refreshed in the morning. Hope this gives you some ideas . Bev

OREOLU
OREOLU
in reply to Beverly2017

Hi Beverly2017,

Everyone who responded to my post affirmed in the effectiveness of CR/ER/SR c/l,and it seems that really does the trick late in the night.I guess it is time for me to switch to ER from immediate release. Thank you very much and best wishes.

To all my PWP friends and caregivers who replied my post,your support is overwhelming.Please do not relent.God in his infinite mercy will make our dreams come true most importantly "A CURE FOR THIS ENEMY OF MANKIND" PD and others. Thanks and good luck.

Millbrook
Millbrook
in reply to OREOLU

Amen !

I take Melatonin before bedtime, which helps in getting to sleep. Also PQQ which helps me sleep longer.

Rlp1
Rlp1
in reply to reedboat2

What is PQQ?

reedboat2
reedboat2
in reply to Rlp1

It’s a quinine salt that has nootropic qualities. I take 20mg along with Qunol 100mg. Good stuff. I heard about it from Joe on the Ataxia forum. Check it out.

Rlp1
Rlp1
in reply to reedboat2

Thx.

I miss Joe a.k.a. sunvox. I wonder if he isn't lurking about under a different name?

He is on the ataxia forum I think

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