sinemet duration

[Mimi828]

I’ve been taking sinemet for 14 years, I started at the time of my dx taking 1 pill every 4-5 hours for probably the first 10 years or so and then began taking a little more a little closer together and today I take 1 1/2 pills every 3 hours starting at 6:30 am and taking my last dose of the day at 3:30 pm. I don’t take any more pills until the next morning and I don’t take any other medication. During the day when I’m medicating I experience serious off times and some slight dyskinesia. The rest tremor I had pretty badly which affected my whole body at the time of my dx, has over the years, all but disappeared with only a slight right hand and arm tremor every now and then, usually when under stress but for the most part it’s gone. In the evening when I’m not taking any sinemet I do very well, no tremor or dyskinesia and I can move around with relative ease. I do have some gait freezing but nothing I can’t handle. My symptoms are almost nonexistent throughout the night and into the early morning hours until about 6:30 when I take my first dose of the day again. In the morning I’m able to do my daily routine including an hour of exercise and playing brain games before I take my first dose. I’m just wondering if this is normal, going all evening and overnight without meds when I can’t manage to do that at all during the day? Does anyone else experience this? I do follow a strict diet, exercise and supplement regiment that may be a contributing factor. Comments? Thanks

[Erniediaz1018]

that’s great congratulations. I believe it is everything else you’re doing. Very encouraging thanks for sharing

[limcheeese22]

i do better during night time without C/L, no off feeling. do feel off during daytime when medicated. i have done DBS though, i also wonder why

[ws50]

Which Sinemet are you taking ? The CR/ controlled Release

[Mimi828 in reply to ws50]

immediate release

[Psalmody]

wow u f doing really well!! I was diagnosed nearly 6 yrs ago & I’m on one around every 2 1/2 - 3 hrs. I don’t take it at night either.

Do u do the hour exercise at 5.30 am? Great effort

[LAJ12345]

the natural dopamine cycle peaks at midnight and is at a low at midday so that might help explain it. Also each dose overlays the tails of previous doses.

See my picture.

Dopamine

[iznogood]

What exactly is your supplement regime?

[Debgiffen]

My situation is similar. Diagnosed 8 years ago( but symptoms for 10+ years). I had severe tremor, now completely gone thanks to high dose B1. I use a combination of 1/4 tab Sinemet with 2 Now brand Dopa Mucuna, taken every 3 hours mostly in the morning with last dose before noon or mid-afternoon if I need to go out socially. While medicated, I experience on/off times with dyskinesia. I do experience wearing off symptoms between hour 3 and 5 after my last dose but once the levodopa clears my system, my body feels more relaxed and I can function almost normally.

In the evening my body is fully relaxed and I feel great. I’m fine during the night but wake in the morning with very tight muscles but once I get up and move around, I can function as a slow normal. I take my first dose around 6:00 am so I can get my exercise done, run errands, etc. but it’s a love/hate feeling for the medication.

I eat a plant-based diet, exercise daily and take an ever changing list of supplements but the most important for me is high dose thiamine(B1). See my profile for more details

[Tribselyov]

your endogenous dopamine is being replenished with sleep and rest. Others are not so fortunate.

[Rupa88]

thanks for sharing, can you please share some of your diet and supplements which has helped you

[BeedieBird]

wow, mine is just the opposite, I can't get through the night without waking up around 3 am and needing an infusion. I have worse off periods as I come down off my daily dose and of course, other triggers contribute during the day - food, as I eat throughout the day, inhibits absorption for me (my body moves anything through it quickly), and then daily stressors bring on off symptoms. Good on you I say!

[marnegro]

My situation is pretty similar as your. I start my first mucuna dose at 8:00am, a second dose at 9:00am and a third dose of 2 Sinemet 25/100 at 10:00am. My last dose is then again a mucuna dose at 12:00 noon. This one last until 5:00 or 6:00 pm. I’m not taking other PD meds. I get a wearing off dystonia in the evening lasting about 1/2 to 1 hour and after that I feel great til next morning. About 6:00 pm then I go to a walk outside (1.5 to 2 miles daily) or in a treadmill if there is bad weather. I can’t excersice while medicated. I just feel too weak, lack of energy and having jerky movements that preclude me from making excersice movements properly or correctly. I also have serious trouble walking, freezing of gait, shuffling and falls. I use a rollator to walk most of the time. These are my most trouble symptoms ( gait related), and most research shows these symptoms do not respond well to levodopa as there are other brain areas or even at the spine areas affected by the disease and not targeted by levodopa.

My hope is on Dr. Peter Tass vibrating gloves or a spine cord stimulation when available. I’m on my 16 year of being diagnosed and I’m following a nutrition dense diet mostly the Wahl’s protocol.

My hope is

[Curious_Fred]

WOW: Be careful. Levadoa taken over long periods at this quantity will produce eventually dyskenisia, Neuropathic periferal pain and cognitive decline. I have 17 years of Parkinsons and take 100mg every 3 hours. Options include adding Ogentys, DBS, Neupro patch. I still work 10 hours per day at the EUropean Parkinson Therapy Centre. Excercise is essential. ALWAYS TAKE MIN DOSAGE POSSABLE, Levodopa is a one way street. Talk to your Neurologist and try to decrease.

live life to the full

Alex

[LostInH]

Hi Mimi828. My situation is somewhat similar to yours. I take sinemet in the morning and during day. My last intake is 6pm. Sometimes around 9pm I experience resting tremor in my left hand. So, I eat plain/Greek yogurt and hand tremor goes away in 20 minutes or so. I learned this trick in research on a relationship between ghrelin hormone and PD’s.

[gginto]

Hi- What supplements do u take? thanks

[GLEEG]

I’ve seen similar results. I take 1 CL pill, 1 amantadine and one extended CL three times daily. I’ve also noticed that my best times are 6pm to 7 am.