special events

Curious about whether or not topping up Levodopa to avoid off times for special occasions is a thing? Heard Michael J Fox does it. Would guess you’d have try it few times to see if it works. Any experience with this?

[1953bullard]

I do it. It works

[Hidden in reply to 1953bullard]

How do you do it ?

[johntPM]

If care is taken, you can make this work, at least partially. The difficulty is to time the extra dose to clock in at the correct time. To improve your chances of success, you want to avoid eating; and possibly use dispersable Madopar which is absorbed quicker than regular Sinemet, or make something similar by dissolving Sinemet in vitamin C.

You can see what's going on by using the levodopa graph drawing app:

parkinsonsmeasurement.org/t...

I use "dynamic dosing" all the time. I try to read my body and, rather than take my doses at fixed times, ("static dosing") I assess my needs and take the dose earlier or later than the scheduled time.

Compliance can be an issue.

[Hidden in reply to johntPM]

Thanks again.

[Furch]

Once again I want to know anyone else is taking as much levodopa as my wife ? She starts the day at 8am takes 3 pills each of 25/100, and repeats the dose every 3 hours until her last dose at 11pm when she take 2 pills and a rytary. She has no dystonia, is oriented alert and sharp as ever. No cognitive problems noted. Except some occasional depression. I also notice she has never had a Lyme disease test and on rare occasions, according to my research is that Lyme disease can also show up like PD on a Dat-scan ? Also after reading the book I am considering trying the B1, as well trying to get my computer whizz kid friend to build a pair of gloves. My wife's main problem is stoop gait and freezing. Thanks for reading and thanks to the creators and monitors of this extremely informative site.

[Vervaine in reply to Furch]

No dyskinesia?

[Furch in reply to Vervaine]

She has No dyskinesia. Sorry got my terms mixed up

[pearlette]

I do it all the time. I am dyskinesia prone when on and significantly dystonic when off. Dynamic dosing helps tailor my medication to a full time job.

[Hidden in reply to pearlette]

Thanks for your response. I tried an extra dose between noon and five. Felt very fatigued. I’ll try 1/2 dose next time. Im impressed that you’re able to tailor your medication to afull time job. I find my off times are longer after exercise as well. Any tips other than trial and error. I was on sinemet for three years and it was very effective. Then my neurologist says my brain changed . It’s only been 3 months or so that I’ve been taking it again along with a Neupro patch 6 mg. With 2 hours of off time morning and afternoon I don’t know if I should increase the frequency or the amount . Any thoughts on that?

[pearlette]

I find frequency increasing frequency the safest way . I already have the lowest strength Sinemet 50mg /12.5 c tablets.

When I do take an "extra" dose I take half of that.

I also recognise my own early signs of my "off " period. For me its my feet and toes feeling wiggly ! ( I am deliberately avoiding descriptions that can be confused with established entities like restless legs).

If I take a Sinemet 50 then it kicks in before a full blown "off phase" develops. I can swallow dry tablets with a gulp of saliva.

If I delay this and get disabling off symptoms I have an extra 50mg but then may expect some dyskinesia. It is never perfect !

It is a bit more complex than that for me as I have temperature dysregulation and other odd symptoms.

I guess what makes it less alarming for me is having specialist knowledge of the neurotransmitters. It helps me rationalise what is going on and sit it out.

I also don't try to eliminate pain ; I use the pain to guide me to where the problem is so that I can try and work on reducing the pain by some biomechanical technique borrowed from restorative yoga or Feldenkrais methods.

I guess you could call it "informed trial and error"

[Hidden in reply to pearlette]

Thanks for your input. I’ll take your advice and see what happens next week.

[CuriousMe12]

I m resistant to drugs and on 12.5mg twice a day.I don't always take a full dose of sinimet if I'm not doing much activity like just reading. Or if I have a good night's sleep I often feel enough natural levodopa to just potter.If another day I then go to an exercise class or something social then id take a full dose about 50 minutes before.

As someone has already said, best taken on empty stomach.

My view is to plan doses arouñd when most needed. Though I've not taken more than prescribed.

[Hidden in reply to CuriousMe12]

Thanks. I’m learning lots about dynamic dosing. Of particular interest is taking a dose 50 minutes before exercise. Using static dosing 7, moon , 5 especially when I’m exercising and/or walking between doses I start experiencing wearing off 3 hours in. I’m wondering if taking half a tab every 2.5 hours might be worth a try. That way I wouldn’t be increasing the prescribed amount just changing the frequency. I guess that would still be static dosing

[zozo444]

Special events like a dental appointment. Mostly I undermedicate myself - because c/l worsens dyskenisia.

[Hidden in reply to zozo444]

That’s what’s best for you then. Thanks for sharing

[pearlette]

Half a tablet every 2.5 hours is not a bad idea; I tried that sort of option but would forget when engrossed with work or something interesting