self medicating since i was 10

I have been self medicating with Sinemet ..then madopar etc since i was ten and i never take my meds at the same time each day ( apart from my first dose in the morning ) as my meds never seem to last for a definitive amount of time. Some times they stack up in my system as they dont appear to be working i take more and then suddenly .... boom ..they all start working together and i get really bad Dyskinesia. Its almost as if they come to a narrowing in my arteries and then they begin to back up then the pressure becomes to much and they all push through together !

Is this a familiar story with anyone else?

12 Replies

  • Good morning Matt, I've been trying to get on a better schedule with my meds and not be so helter skelter. What you are talking about usually happens to me at least once a day and it is usually after I've eaten protein. I don't tend to eat in the morning except maybe a piece of fruit but around midday I have the a meal which includes yogurt and I'm thinking the protein in that makes the meds not work. So then I take another half and then it kicks in about a half an hour to an hour later and I have dyskinesia, but at least I'm moving.☺

  • Do you have a problem with flushing. I was there with the emotional issues from your last post, I think I cried more at my mother-in law's funeral than her own 7 kids did. I am now taking 200mg of sertraline a day to appear normal. There are several neurotransmitters in the brain and Serotonin is as important as Dopamine.

  • Could it be constipation causing the problem? The tablets don't get to the absorption site in the guts unless you are moving food along.

    As said below, protein eaten close to the Tim of l dopa can slow the uptake of the drug too.

  • It could be ... but any food seems to affect the absorption rate of my meds and of course we have to eat ! lol

  • Have you thought of trying the duodopa pump Matt? It by passes gut problems I believe.

  • I have , yes but i have already had DBS so im reluctant to have too much tech inside me ...not ruling it out though

  • Matt,

    Rather than take my meds at fixed times during the day, I take them when I need them. Or, to be more precise, a little before I need them, in order to give them time to kick in. I call this "dynamic dosing".

    Things differ from day to day in the ways that others have mentioned: gastric emptying, diet, especially protein, constipation, exercise. So, it clearly is not optimal to keep to a fixed schedule. (But, taking their drugs at fixed times may, for many, be the best practical approach, because it is easier to follow and offers the best chance of compliance. Good time keeping is better than bad dynamic dosing.)

    I find an understanding of the pharmacokinetic properties (what the body does to the drug)of levodopa is useful: terms such as CMAX=about 60min, THALF=about 90min. I've written a program that estimates levodopa plasma levels on a minute to minute basis.

    If you take other drugs, you need to know how they compare with levodopa. There is the concept of levodopa equivalent dose (LED). For instance, 1mg of ropinirole has about the same total effect (AUC) as 20mg levodopa, but with a longer half-life.

    Finally, you need to understand the pharmacodynamic properties (what the drug does to the body) of your drugs. You need to be able to estimate your plasma level threshold associated with becoming "on", and the one associated with dyskinesia.


  • thats fab thanks so much!

  • Did you try melatonin for Dyskinesia it worked for me two years back but stopped it now a doctor in Austria prescribed it for me .

  • You can get melatonin over the counter.

  • I have off times every now and then that I can't explain and I haven't thought to figure out a cause.

    I'm just a natural nosey person so please don't feel you need to answer the question I'm about to ask. How were you able to get the Sinemet without a prescription? Or am I misunderstanding the term self-medicate.

  • I mean the doctor in Vienna told me to use melatonin for my Dyskinesia , but when i went to buy it from the pharmacy they refused to give it to me without a prescription so i went back to the doctor and got a prescription .

    Even three years back in my country UAE the melatonine was given only with prescription , but now you can buy it over the counter .

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