Levodopa dosing carried into nighttime - Cure Parkinson's

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Levodopa dosing carried into nighttime

31 Replies

Going without at night doesn’t work for me. How do others dose at night?

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31 Replies
Kevin51 profile image
Kevin51

Hi Roy; I take 100mg Sinimet CR just before bedtime. Improves my sleep quality.Best K

in reply toKevin51

Last night I took a 50/200 Cr and had two hours of strong tremors

in reply to

I don't dose at night, since I don't need it. I guess that as I progress this will change.

But I still have some comments...

Because it is extended release it takes a long time to reach maximum concentration (~ 2 hrs).

Note: It will take less time to reach the therapeutic threshold, but this will still be relatively slow (when compared to IR).

There are a few things you can do to speed this up:

1. split the CR tablet in half, but note you don't get something for nothing - this will reduce the on time of the CR (i.e., make the CR more like IR).

2. take your CR dose with food (but not protein) (i.e., this also makes the CR more like IR).

rxlist.com/sinemet-cr-drug....

"The extent of availability and peak concentrations of levodopa after a single dose of SINEMET CR 50 200 increased by about 50% and 25%, respectively, when administered with food."

3. take some IR with the CR

The idea is that the IR will get you as quickly as possible to the therapeutic threshold, and then you let the CR extend the on time...

To me c/l dosing is like keeping a balloon filled with air (not helium) afloat - you have to periodically tap it upwards (take a dose) in order to keep it up in the air (above the therapeutic threshold, i.e., to stay sufficiently medicated and in the "on" state)...

Note that adjuncts like entacapone and selegiline lengthen the time the balloon stays up (like adding a small amount of helium to the balloon)...

Kevin51 profile image
Kevin51 in reply to

I usually find the LD allows me an easier ride when working at achieving the relaxation state of no tremor I need to be in before sleep. Tremor is very sensitive to stress level so it is crucial to relax in the evening else it gets tougher to get to the spot! It used to be easy before my tremor got worse this last winter!

MissRita profile image
MissRita in reply to

That’s why I don’t take a lot as my tremors get worse.

MissRita profile image
MissRita

I typically don’t dose at night because I find when I do I wake up in the morning the tremors are much worse. That probably doesn’t make sense but for me that’s what’s been going on. I typically take a final dose around mid afternoon or early evening and then to help me sleep a little bit better I took some thing called PYM which has GABA, Theanine, and Rhodiola. They’re made out of gummy‘s and I take two before I go to bed and it’s the best thing I have found in a very long time to help me relax at night.

Giovi1960 profile image
Giovi1960 in reply toMissRita

Thanks for the information, MissRita . Could you tell me where to buy PYM?

MissRita profile image
MissRita in reply toGiovi1960

Sure just go online and Google PYM Original mood chews. I suggest taking only two when you do get them in the beginning and take them at night to see how you react.

Giovi1960 profile image
Giovi1960 in reply toMissRita

Thanks! Have a good day.

MissRita profile image
MissRita in reply toGiovi1960

You too! Did you find them online?

Giovi1960 profile image
Giovi1960 in reply toMissRita

I did, thanks again 😀

SFD7 profile image
SFD7

(I tried posting this before and it doesn’t look like it went through. Apologies if it double-posts.)

I dose the same at night as during the day: one 100 mg Sinemet every three hours. I used to set alarms for this, but after a couple of months I started waking up ahead of the alarm feeling “off” and taking the tablet almost automatically. And in between doses I sleep soundly and deeply. In fact, according to my husband I never move anymore in my sleep—which is probably why our dogs love sleeping right beside me!

parkie13 profile image
parkie13

I also take 25/100 CR every 4 hours or so. Plus sometimes during busy daytime I add 1/2 tab, once or twice. Otherwise my tremor would be pretty bad for sleeping.

LindaP50 profile image
LindaP50

Husband's last dose is 40 minutes after dinner. Next dosage is 40 minutes before breakfast. He does fine; I'm guessing OK because he has PD without any tremors.

Pa-zzi69 profile image
Pa-zzi69

RoyProp, my short answer:Solution to middle-of-night insomnia, started one month ago:

- ingest half tablet of carbidopa/levodopa IR 25/100 at middle-of-night waking-up

- stop C/L CR 50/200 at bedtime, to minimizes risk of dyskinesia as a result of the above addition of levodopa

My long answer, in context:

Age 79, 3-year-old diagnostic, 1.5+ hours of daily exercise, main symptom: intermittent hand tremor

Two problems, as of one month ago, given regimen of C/L carbidopa/levodopa IR 25/100 4x/day + C/L CR 50/200 1.5 tablet @ bedtime + Supplements [see below]:

#1 INSOMNIA, middle-of-night, occasionally severe [4hrs sleep time],

unsolved by CBT [Cognitive Behavior Therapy] monitored by a sleep specialist, and by marijuana [CBD/THC tincture] brief experiment, advised by a medicinal marijuana specialist.

Solution, see "short answer"above

#2 DYSKINESIA at the mouth, new symptom, triggered by levodopa, 1-2 hour long episodes

Solution:

reduce levodopa IR 25/100 50% [from 1 to 0.5 tablet], 4 times/day-time [6am to 9pm]

stop levodopa CR 50/200 at bedtime

Trade-off:

Tremor is more frequent and intense but less debilitating than dyskinesia. Rigid and unresponsive fingers at the computer keyboard.

Supplements [details available upon request]:

- Thiamine HCL B1, 1g = 50% of the 2g dose of my one-year-ago experiment of Dr Costantini’s B1 protocol.

Prescribed by naturopath Dr. Laurie Mischley:

- Fish oil for omega-3 fatty acid to reduce risk of dyskinesia from levodopa

- CDP Choline 4x250mg to reduce risk of dyskinesia from levodopa and possibly reduce the dosage of levodopa by 30-50 % over time.

- Glutathione Liposomal liquid 5 pumps

- Glutathione nasal 1ml

- Homocysteine Factors, whenever test above 11

- Magnesium Triple Complex 400mg

- CoQ10 1200mg

- vit B12 Methylcobalamin 1000mcg, sublingual

- vit D3 2000 iu

- Selenium 200mcg

- Copper glycinate 2mg

- Immune Support, vegetarian mix by Vital Nutrients

At my initiative:

- Flax seed, ground, for constipation

- Soybeans, roasted, 1 soup spoon, for protein

For knees:

- Glucosamine-Chondroitin 1500-1200mg 2x/day

for prostate:

- Proscar-Finasteride 5mg

PDFree profile image
PDFree in reply toPa-zzi69

Pa-zzi69Informative post, thank you. I’m interested in details of your supplements, specifically brands.

condor39 profile image
condor39

I take three Madopar 25/100 (actually Prolopa, the Canadian version) every three hours, , except two at midnight and at 3.00 am. I am always awake by then, and I get up, have a snack and spend the rest of the night in a recliner. No supplements at all. I don’t have tremors and have no side effects at this dose..

Motherfather profile image
Motherfather

well i have 3 madopar tablets 200/50 per day.1 at 7am 1 at 12 1 at 5 pm...1 sifrolER 3mg tab 7am.1 palexia SR200mg..i have at 5pm.thats all im taking..here is what i was suppose to take...cavsstat20 mg clofen 10mg tab loxalate 10mg tab..lyzalon 25 mgmp asprin100 mg bed time clofen 10 mg.lyzalon25 mg all i got from taking all that was being dizzy most of the day.makes you wonder..

jackedmonston profile image
jackedmonston

just got

“The New Parkinson’s Disease Treatment Boo k”

Dr. Eric Ahlskog,

Chair of Movement Disorders

Mayo Clinic

Here is some of what he says about sleep

A variety of factors may contribute to insomnia among those with PD. “By far the most common reason is the discomfort of Parkinsonism itself. This is highly treatable with carbidopa/levodopa and this cause should not be overlooked.”

“Dopamine deficient state of PD makes it difficult to become comfortable, which is the necessary prelude to sleep.”

Rigidity / Tremor/ Difficulty in turning over.

Akathisia (inner restlhessness, an inability to feel relaxed, a

sense of non descript discomfort when sitting or lying still.)

Very common symptom of PD.

Carbidopa/levodopa is “key to treating the insomnia caused by PD. ….An adequate C/L dose is necessary, and with longer standing PD, the timing of the doses is critical.”

“Commonly, those with PD experience new-onset insomnia after several years while on stable doses of daytime carbidopa/levodopa. This signals the development of short-duration levodopa benefit (described in Chapter 17).

“Thus the last carbidopa/levodopa dose of the day, taken before supper, fails to provide persistent coverage lasting until bedtime. The strategy for this is obvious; take another full dose of carbidopa/levodopa an hour before bedtime.

“Note that a full dose is stipulated here. This is VERY IMPORTANT as benefit for sleep responds all-or-none. A half dose fails. A three-quarter dose fails. It requires a full dose to become comfortable…..many people assume that since the C/L bedtime dose is simply for sleep, less is needed,. But it does not work that way.”

“….some who are unable to sleep following the bedtime dose of carbidopa/levodopa do not sleep through the night but rather awaken in a few hours. Often this is due to the short-duration levodopa effect, or wearing off. What should one do?

Again, the obvious solution is to take another full dose of carbidopa/levodopa upon wakening.…It is acceptable to do this more than once during the night.

As discussed in Chapter 17, there are no limits on the number of doses per 24 hours, except as limited by common sense.”

Jockboy17 profile image
Jockboy17 in reply tojackedmonston

Laurie Mischley does a PD school and a board certified neuro physical therapist by the name of Claire at Rogue Physical therapy in California, who is just top notch, recommended this book that jackedmonston suggested. A great, easy to read book.....get it!!

Juliegrace profile image
Juliegrace in reply tojackedmonston

I will have to buy the book to see how he addresses those with constant dyskinesia, like me.

Excellent excerpting!

Sapeye2020 profile image
Sapeye2020

I use Melatonin for insomnia , 70 mg and if my bladder wakes me up and there is enough time before my 08;00 Dosage, I will take 300mg C/ L.... too little time?, I will skip , which is now almost my NORM.

I attribute this to taking 400mg of Ubiquinol + Quercitim Complex+ 200mg SETRIA L-Glutathion Daily

=

AmyLindy profile image
AmyLindy in reply toSapeye2020

@Sapeye2020: 70 mg of Melatonin - no hangover?

Sapeye2020 profile image
Sapeye2020 in reply toAmyLindy

None, I use the formula 10 mg per per 10 Kg of body weight, I weigh 75 Kg. I seem to be one of the no headache or hangover population, I added 1 pill a week to avoid any potential problems as I read about the potential hangover some got.

caitilin profile image
caitilin

I have to medicate around the clock. My body wakes me every 4 hours without fail. If I don't take the levodopa I'd be awake struggling through exhausting tremors until my next dose.

in reply tocaitilin

Same here. 24 hours, every 3 hours, 2x25/100mg

in reply to

Roy would you consider PTT FUS?

in reply to

Not while tremor can be controlled w c/l

AmyLindy profile image
AmyLindy in reply to

@Roy:Round the clock ⏰ wow... at least I know what to expect. Thx for reporting...

in reply toAmyLindy

Early morns dosing works if I waken

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