Levodopa just for exercise?

[Jefferami]

Here's a question for you. Is anyone on or know of anyone that's on levodopa just for exercise and not on it the rest of the time? I'm on neupro which has helped live a regular daily life but still very dystonic and stiff for full on exercise and wondering if I could get a temporary boost to get through full on exercise?

[PixelPaul]

For me on most days I get by with a single C/L tablet that I take solely for the purpose of calming my foot dystonia long enough to get a workout in. Without it the painful foot cramping that starts after about 5-10 minutes into any run/bike/xc ski quickly forces me to stop exercising.

[jimcaster]

I initially started taking carbidopa levodopa to combat dystonia in my right foot, just like PixelPaul. Now that I am 5.5 years post diagnosis, I find myself taking an extra dose even during mild exercise like bowling and golf leagues. Normally, I take one 25/100 four times daily (approximately 3 hours apart) but I know exactly when to take an extra during an 18 hole golf round or three games of bowling. I actually drive a golf ball farther and roll a bowling ball faster than I did before being diagnosed. I've also seen videos of Jimmy Choi, a tremendous athlete with YOPD who boosts his dosage depending upon the intensity of his exercise.

[cgreg in reply to jimcaster]

"It is common for people with PD to feel worse immediately after exercise, having more tremor and slowness – this is normal! It is not a sign that you are exercising too much, rather, it is due to the temporary exhaustion of your dopamine, and will return to normal after some time has passed. If it bothers you, you could ask your prescribing physician if you can try taking an extra dose of medication right before exertion." - from parkinsonsblog.stanford.edu...

[jimcaster in reply to cgreg]

I totally agree that exercise can temporarily make symptoms worse because I have experienced it. However, my dystonia was not the result of exercise. I couldn't walk or bike for five minutes without my toes curling. Carbidopa levodopa totally enables me to exercise and to function near normally all day.

[cgreg in reply to jimcaster]

You are very lucky to have figured out "exactly when to take an extra during an 18 hole golf round or three games of bowling" to enable you "to exercise and to function near normally all day". This has been my dream since I can't seem to find the right mix of dosage to make my symptoms just right and steady throughout the day. Could you please provide some tips? Thank you in advance.

[jimcaster in reply to cgreg]

I think I am just lucky. Generally, I take one 25/100 Carbidopa Levodopa every three hours, with minor adjustments for exercise, as noted.

[Gallowglass in reply to jimcaster]

I wish that worked for me! I take 2 cl every 4 hours. Works for after one hour for about one hour and then off . Getting worse all the time. Entacapone gives me an extra 30 minutes but makes me feel wierd.

[LAJ12345 in reply to Gallowglass]

Is that weird or wired?

[Gallowglass in reply to LAJ12345]

haha! Both!

[AGH_1966 in reply to Gallowglass]

Same here.

[Nikosmom in reply to Gallowglass]

Have you tried Extended Release version of C/L?

It works well for me with careful monitoring every three hours except only once at night. Good luck

[Gallowglass in reply to Nikosmom]

Yes. Didn’t work as well for me.

[Fed1000 in reply to jimcaster]

It is the so-called doping, prohibited in any recognized competition. We pwps cannot participate in any competition as we would test super positive in the anti-doping test. All the best Jim

[Turnipbarrow]

my husband with Parkinson’s takes mucuna in the morning so that he can pray and exercise and do other things more easily. It lasts around 4-5 hours. He then has 1 hour of bad off time where it is hard for him to walk. After 1 hour he gets some strength back in his legs and he can function- can go for a walk but can’t ride his stationary bike or anything like that. He takes c/l before bed for his restless legs and mobility during the night. Sometimes he takes another dose of mucuna if he wants to go someplace or do something that he isn’t comfortable doing without it.

[gomelgo in reply to Turnipbarrow]

Could you please say the dosage amount of mucuna?

[Ob6842 in reply to Turnipbarrow]

Could you please share your brand and dosage of mucuna? So far, I’m only taking CL only when I’m playing a sport, maybe once or twice a week….although my MDS suggested every day. I’m very interested in mucuna, but have read you need carbidopa (or green tea) to facilitate its action into the brain. I’ve purchased NOW brand mucuna. Is that a good one? Dosing advice please?

[PD-Golfer]

I take 2.5 tablets of carbidopa/levodopa (25/100) 4 times/day (depending on how the day has gone, I will take two tablets before bed in the evening). Usually, when playing golf, I take the second dose 3 hours after the first instead of 4 hours. That timeframe usually gives me the energy and coordination I need to play as well as I can (under the circumstances of having Parkinson's). Frequently, after the round of golf (18 holes), I do feel essentially wasted and somewhat sluggish, but it passes with a bit of time. If I can, I will also wait 4-5 hours to take the third dose of carbidopa/levodopa (I do not want to get used to a 3-hour cycle between doses).

I recently started taking a COMT inhibitor and have found it does lengthen the time needed between doses (from 4 to 5 hours). It does seem to lessen the swinging pendulum of the off-on cycle from repeated use of carbidopa-levodopa. And I would say it also has stabilized the way I have felt physically while playing 18 holes of golf (which usually takes from 4 to 5.5 hours). Furthermore, I have noticed a reduction in total tablets of carbidopa-levodopa taken daily from 12 to 10, but it has only been a month on this drug.

[kaypeeoh]

I guess it's a 'given' that exercise helps those with PD. But what constitutes exercise? A walk in the park, not so much. A marathon, maybe too much? Hard exercise forces one to breathe harder. If you're breathing hard your body is using burning glycogen for fuel. When you run out of glycogen--the body's primary fuel--the body can switch to burning fats in the form of fatty acids in the blood stream. Long distance runners or bikers use every trick to keep the body working hard. One trick is breathing through a restrictive mask. But training has a down-side. The body gets better at using fatty acids and saving glycogen, Marathon runners get together and brag about their resting heart rates. Average resting heart rates are 90 to 100 beat per minute. Olympic runners can have a resting heart rate in the low-30s. I've never gotten my resting heart rate that low. But at exams the nurses often comment on my heart rate.

Personally I use HIIT to exercise. The goal is to get my heart rate near it's upper limit. An older rubric is 220 minus age. I get on a treadmill set to 10% grade and 5MPH speed. Yesterday I did 10 thirty-second sprints and never got my heart higher than 120 BPM. So now I need to either raise the incline or raise the speed to reach the HIIT level. My goal is 160 BPM. I use a heart rate monitor. It's on my wrist where I can check during a run while trying not to throw up. I found a better method that says my upper heart rate is 160 to 170. The goal is running at 80 to 90% of my upper heart rate.

That said, I don't have much of down-side symptoms. Mainly I get double vision. I take Rytary three times a day. The double-vision is my cue to take the next dose.

I assume exercise is why I don't have worse symptoms.

[Ob6842 in reply to kaypeeoh]

Very impressive! What you of heart rate monitor do you use? I’m looking for one that’s not an Apple Watch….more simple

[kaypeeoh in reply to Ob6842]

I've got a cheap Apple watch clone but also use a treadmill with a monitor built into the arms. Both agree more or less.

[amykp]

Me.

I take a single 25/100 in the morning before I go to the gym because I think I am able to do a better workout. It is the only dopamine I take all day...except the rare occasion when I am going to a fancy restaurant for dinner or a wedding or something where I want to look my best. Then I might take another.

If I am NOT working out (on Sunday when the gym is closed and I just walk for example) I don't take any dopamine all day.

But, full disclosure: I take a bunch of other supplements every day (quercetin, omega 3's, vitamins, co-q-10...etc...etc...plus rasagiline.)

[Ob6842 in reply to amykp]

Is not taking CL every day ok with your doctor? My doctor wants me to take it every day, which I don’t really want to do. I like your PRN, as needed schedule!

[amykp in reply to Ob6842]

He wanted me to take it on a schedule too, but I just said I didn’t want to. Ultimately it’s up to you and how you feel, right? My first doctor agreed with that.

[amykp]

BTW, did your Dr. tell you WHY he/she wanted you to take it on schedule? At least ask! My thought is, it's symptomatic, so if you don't feel like you need it (if the symptoms aren't bothering YOU) then why take it?

I don't care how "certain" your (my) doctor is that there is no downside--other doctors think there might be. So I go with the "as little as I need" theory. Just in case.

But, as I think I said, I believe exercise is super important. If dopamine helps me work out better, I'm all for that.

Anyway, it's your body.

[Ob6842 in reply to amykp]

I think he just wants his patients to have a steady state level of CL. Has anyone tried mucuna, instead of CL? Experiences? I bought some NOW brand mucuna, but haven’t tried it yet, but am curious about it!