Have you ever experienced the effects of peak doses of levodopa, and how extreme are yours?
Here is what happens when I take Madopar Immediate release 100/25 mg:
In 15 mins I am almost completely incapacitated - I have to lie down as I lose the ability to voluntarily move a muscle in my body. All my muscles tense but don't relax, and this lasts for 60 to 90 minutes. My whole body starts shaking and I need my husband to hold my arms and legs or otherwise the shaking intensifies. In addition, my pulse rate and blood pressure go up.
In 35 min the levodopa concentration in blood reaches peak level and the above-described events become unbearable.
I also develop dystonia which disappears when the Madopar wears off.
Things only start to improve after 60 min, but usually after approximately 90 minutes (half life of the Madopar).
Would be grateful for any comments or suggestions you might have. Have you found any medication helpful in relieving the symptoms?
Thank you in advance.
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Daisies22
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Have you tried microdosing - splitting the dose into smaller amounts but taking it more often? Might be harder to stick to but there evidence that this reduces the peaks and troughs.
No, I have not tried microdosing yet. I imagine it will make having food even more difficult, and I am far too thin than I should be for a woman of my age.Thanks for the suggestion.
If you have a small build/low BMI, the prescribed dose may be too high. Also women tend to have higher spikes after taking levodopa. It's seems ridiculous that so many of us are prescribed 100/25 mg whether we are a 6 foot 2 male or a 5 foot nothing female. Hope you get some answers that work.
hi, yes my husband experienced this when put on the slow release madopar after taking it for a week. Ask for the 50/12.5 tablet instead and see if that is better. He has been on that for 6 years now and has never had to go up to the dose they recommended initially of the 100/25 tablets.
He now takes this every 3 hours 8am, 11,2,5 and another 1/2 dose at 6am or when he first wakes up(sometimes this isn’t until the 8am dose if he sleeps in) , 9.30 and 3.30.
He takes a NOW dopa mucuna capsule with the 6am, 11 am, and 2pm doses also so he does get extra levodopa with that.
Thank you for the suggestion.How did he make the transition from 100 mg to 50 mg levodopa? Also, how did you know how much mucuna to add? I don't imagine my Neurologist will like the idea.
They started him on the 50/12.5 so he was supposed to increase it over a few weeks but didn’t need to increase so stayed on the lower amount. He went though a bad patch after a few years which we now put down to stressful situations with our teenage son playing up so he started on clonazapam at a tiny dose. 1 x 0.5mg tablet cut into quarters spread over the day. To be honest clonazapam is more helpful than the levodopa as it reduced his anxiety which reduced his symptoms.
He takes the mucuna capsules so they are standardised. Taken with the madopar they have the benefit of the benserazide to help prolong the life of the levodopa in his system.
If you aren’t comfortable taking the dopa I would ask for the lower dose pills still and start by taking the 2 together to create the same dose you are on then removing 1/2 a tablet at a time starting with the ones at the end of the day as that is when the overlaying doses start to build up too high.
Ok that seems a lot. How long have you been taking madopar?
My husband found the slow release madopar caused problems as it builds up over time.
Before you started on the slow release did you find that you could move when you first woke up or did you need to take a madopar before you could move in the morning? If you could move before taking the dose you might still be making some of your own over night so might not need the overnight one.
My husband finds doses begin to wear off after 90 minutes so he takes them as listed above so he is getting some every 90 minutes so the next dose begins to ramp up as the previous one wears off. I wouldn’t do that with your stronger ones as 7 a day is already a lot.
If you can, get the neuro to swap for the 50mg white tablets that you can cut. Then you can slowly reduce over a couple of weeks until your dose is right.
I personally was concerned with the amount of blue dye on all these pills so hence I asked to swap to the white tablets that appear to have less additives. And can be cut. I think they are what you call dispersible ones. Can you try swapping to only these?
My experience after five years of PD and neurologist having me on 250/100 madopa every 4 hours, often 5 times a day lead me to intense cramping and often overdosing. I have been to hosp 4 times… one time with a 13 hour overdose episode with full on toe and foot cramping and dyskenisia similar intensity to labour during childbirth. ( I know.. I am a mother of 3!) The hosp doctors kept giving me more levedopa which I pleaded with them not to do to let me ‘dry out’. That took years off my (once a young) 63 year old body. I have since found out that taking protein for an overdose and magnesium glycinate and l- Theonate for cramping could have saved all that trauma and heartache. No doctor gave me any advise other than more drugs! Antidepressant , sleeping pills and a trial for Duodopa. I am now on 25mg sinemet and 1 x 40% mucuna every 4 hrs. I have half of my life back! I now have control of these humiliating and debilitating episodes.
Thank you so much for the information, and for sharing your experience!How could any Neurologist prescribe a single dose of 200 mg Madopar is beyond me! I am on one 100/25 mg capsule seven times a day and can hardly move after I take it. And even now my Neurologist wants me on a higher dose of Madopar. His view is that levodopa can't be responsible for the symptoms I've described.
You mentioned 40% mucuna, I have no experience with it. Where could I purchase it?
"250/100 madopa every 4 hours, often 5 times a day"
to 25mg sinemet and 1 x 40% mucuna every 4 hrs.
How did you make the transition? Was it "cold turkey" where you stopped the Madopar and started Sinemet and 40% Mucuna, or it took a long time to gradually replace the Madopar?
parkinsonsmeasurement.org/t... It would be worth exploring your timings and dosage on this blood level tracker to see if the peaks correspond with the side effects, it could be that you’re getting a ‘stacking’ effect? By flexing your dose through the day by taking half tablets occasionally or leaving an extra 20-30mins now and then you might be able stay in the Goldilocks On-zone between the side effects and wearing Off.
Bonjour , génial le lien que vous avez envoyé, ça fait 2 bons mois que je peine à régler mes doses , j avais développé énormément de dyskinesiesen fin d après midi , mon neurologue avait plutôt tendance à augmenter mes doses .Je viens de tout diminuer, dose par dose , demi heure par demi heure , en notant mes réactions tous les jours. Je n ai quasiment plus de dyskinesies , mais parfois un peu en off en fin de journée. Votre lien va beaucoup m aider je pense Merci
I’ve been going through a very similar experience for the last few months…sounds like you may have “dystonic dyskinesia”, whereby as the levodopa kicks in you (& I) develop severe dystonic cramping and pain over much of the body. I’m in the US so I take Rytary (Extended release Sinemet) along with occasional/intermittent Immediate Release Sinemet. I would try the Controlled Release Madopar and/or lower your dosage, and/or spread it out over time. Hopefully one of these approaches will allow you to get the mobility benefit w/o having to go through the initial horrible downside - though it may take a bit longer to get loose.
Hello,Thank you for your quick response. I was not familiar with the term "dystonic dyskinesia".
May I ask - do you really lose the ability to initiate a voluntary movement when you take levodopa? I do, and it causes me total distress as I depend on other people for everything, including taking my medication. Like I said, I am in this helpless state for 60 to 90 minutes at a time, seven times a day. I'd never had this symptom before I started taking this medication.
I also noticed that the rate of change of the concentration of levodopa in plasma is what paralyses me, regardless of whether it is the fast increase or the decrease when levodopa starts wearing off.
Probably this explains why my symptoms before I take levodopa are the same as those after I've taken it! Totally confusing.
Thank you for the clarification! (I was just about to Google it).With me, the dystonia completely disappears after about 60 to 90 minutes after taking a 100/25 Madopar. So does the whole-body shaking. It all starts again about 15 min after taking the next Madopar IR dose.
I seem to exist in two states only - one, when I'm perfectly fine, and a second one where I spend 60+ minutes shaking uncontrollably.
Is this typical of PD? I've always thought that I would have some residual shaking when I'm in an ON state.
The levodopa takes about 15 minutes to start getting into the blood then ramps up over the next hour then starts wearing off again. The symptoms you describe are almost certainly too much as they coincide with the peak of the dose. Here is my diagram that explains it.
Neurologists and PD nurses mostly seem to think the cure is more dopamine but our experience is it is the opposite of what is needed.
see how the next dose builds on the tail of the previous one and how there is a period where it gets too low after taking the next pill before the second pill starts to build up. That’s why closer together but smaller doses work best for some people who burn through the dopamine very quickly.
Also see how as the day goes on the peaks get higher and higher . This meant my husband was fine in the mornings but by the evening he was going up the walls pacing and wanting to kill himself as he was being pushed into the manic zone. By the way this is what happens in schizophrenia where dopamine is too high and why they are manic.
Also see the natural dopamine cycle underlies it all so that starts to build up over night and falls at midday. Another reason you might not need as much in the evenings.
my major issue last 7yrs has been dystonia at peak and wear off . I can only take small doses at a time every three hours. It basically controls my life on top of the apathy from PD and living alone
bless you for the terrible time- my husband has experienced all the gamut of what you described— and for him— after the last week of extreme dystonic/ dyskinesia Amantadine taken at the same time with Rytary has stabilized things— he eats meals with protein 30-40 minutes after taking the meds.
If you’re taking meds for any other illness (other than the PD), even if you have a long time, it may be worth revisiting the dosage timing of the other meds. For my household, chronic cough meds was the culprit and since changing dose-time- frequency? The “attacks”. Have been very very mild and tolerable.
Thank you and hugs and prayers for this PD uninvited disease to give you peace and be able to focus on the sun in your life and Thanksgiving that we all have this forum to share be supported!
it appears people are suggesting to take protein to lessen the effects. The protein makes the levodopa less effective so reduces the side effects.
However to me it seems reducing the dose would be a better way to reduce the side effects as when the dopamine breaks down it produces biproducts that aren’t very good for you. So the less of these biproducts the better.
Or maybe biproducts aren’t produced by the “wasted” levodopa. Not sure. Anyway it seems a waste to be taking more than is needed then trying to stop it working by eating protein to disarm it in effect.
I also have problem of peak time Sinemet. After I took Sinemet (25/100) half to one hour, my left foot, shoulder, arm and hand got tense, especially the toes of left foot are curl and very painful, it would last 2 hours till the medicine off time. I took Botox injection, which helps reduce the pain level. Now I take half of the med, and also take Mucuna Pruriens instead of Sinemet, as this time take sinemet, next time take Mucuna Pruriens, which can reduce the pain level and make the pain period shorter.
Daisies22 . I am finding that after 11 years battling this disease, I am actually needing to taper my Levodopa down more and more in order to deal with my dystonic dyskinesia 😂🤔
My doctor doesn't find this unusual. To give you a perspective, I used to take 2000mg of Sinemet in 2017. Now I take a lower potency Sinemet 10/100 X 12 max per day which is 1200mg maximum. Somedays, I make do with less. As low as 700mg per day. Like you, I am helpless when I get this dystonic dyskinesia which surprisingly occurs minutes after injestion of Sinemet. I am convinced that this is probably all psychological. Who knows?
Thank you for your reply, pdpatient.May I ask? What you experience, are these random episodes during the day/week/month, or do they happen at specific times after ingestion of C/L?
How long do they last?
Mine disappear when the Madopar is wearing off.
At 35 min post ingestion I should be fully ON but I'm completely paralysed and incapacitated.
In about 90 min post ingestion, when I definitely should not be fully ON, I feel as if I was not diagnosed with Parkinson's disease.
To me this means drug-induced condition.
|Reducing the content of the individual capsule by 25 % allowed me to do push ups!
Increasing the content of the capsule by 25 % completely incapacitated me for two hours!
Still my Neurologist thinks that I need more dopamine!
Daisies22 . First, I need to let you know that I am taking a medication called Nourianz, which is supposed to mitigate my OFF times. Despite that I have issues.
Minutes after Sinemet injestion, I will on most occasions, get foot cramping with my toes curling and I experience some stiffness. After about 10 minutes, I will tremor pretty badly all over the body. For the longest time I thought this was bizarre but thankfully, I was able to demonstrate it to my doctor during our last video visit. They called it dystonic dyskinesia, something that affects a small portion of Parkinson's patients.
The answer was to reduce the Sinemet dosage and hopefully the side effects would go away. But, I find that I have a long ways to go before that happens. These episodes last between 15 to 30 minutes after Sinemet ingestion. I also take Amantadine which helps with the dyskinesia.
From what you describe, it seems related to your gastric motility, meaning slow movement of food through the gut. That slows down the Levodopa absorption and upsets the plasma concentration of Levodopa which needs to be constant in order to prevent the dystonic dyskinesia from happening.
Based on my own experience trying to deal with the issues I have to deal with, I have found consistent and predictable good results by fasting the entire day. If I am hungry and can't stand it, I eat some fruit and nothing else. On those fasting occasions, I have a fabulous day. May I suggest that you talk to your MDS doctor or your GP and propose that you test out how you respond and feel after a day of fasting. That would give you a clue if you are taking enough medicine or too little.
I love food and it is really hard for me to fast. But the alternative is far worse than the momentary plea of food. The only food that doesn't interfere with the absorption is fruit and I have to regulate the amount I eat because I am diabetic. If you don't have the same problem, I can suggest the option of going a day on fruit alone and watch what happens.
As you see you are not alone. This is common at least on this forum. All I can put it down to is neurologists see many patients and increasing doses helps most of them and they can't accept that for a few this makes them worse. This site is where the ones that can't cope with high doses end up as they are looking for help. You know your body . Don't let them bully you into more when you can feel you need less. You are in charge, not them.
Thinking that your peak dose level in the brain doesn’t happen for 60 min. That same sequence happens to me. Except my dystonia does not go away for 85 min.
Thanks for your reply.During the 85 minutes are you able to initiate movement in your arms/hands and fingers? Or would you say that you are in a state of almost complete paralysis?
I’m wondering if your neck has issues? Have you ever asked a physical therapist or MDS about that? When I’m OFF everything is weaker. Seems like neck issues could cause temporary full body paralysis?
I'm on 7 Madopars a day and I get paralysed 7 times, 15 min after I take the capsule. I recover when the concentration of levodopa starts wearing off. This process of paralysing /de-paralysing closely follows the concentration of levodopa versus time curve for madopar. This makes me think that it's all levodopa induced. Once levodopa wears off sufficiently, I recover and just stand up and start walking as if nothing has happened.
Hi, thanks for your message.No, I have not tried this particular dosing but I have calculated how the concentration of levodopa versus time curve would look like - far too jumpy. It seems my brain prefers smoother curves to jumpy ones. So, I would not recommend such dosing.
When my husband had this his body locked up including his throat to the point he couldn't breathe properly. It was a holiday weekend and no dr available so thats when I took matters into my own hands and switched him back from the slow release madipar to the instant on a much lower dose and he soon stopped having the muscle spasm.
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