Six years ago I was diagnosed with Young Onset of Parkinson's disease. I was prescribed Madopar and Pramipexole which later was replaced with Rotigotine transdermal patches. I had a very strong but paradoxical reaction to all three dopaminergic medications and eventually l
ended up in A&E where my dose was increased thus making my life more difficult.
A few days ago my extreme muscles stiffness became so bad that I have difficulties breathing, I feel as if I'm going to suffocate. This happens every time I take madopar Immediate Release, which is seven times a day. I also experience chest tightness which really scares me.
I was wondering if there are other people who live with PD and have experienced similar challenges. My question is how they managed to get the severe muscle tightness, which is a side effect of the Madopar, under control.
Is it known what exactly is the underlying mechanism of triggering such an instantaneous whole-body reaction?
Thank you,
Written by
Daisies22
To view profiles and participate in discussions please or .
My wife is taking madopar and her reaction to this medication is similar.The dose was reduced reaction not as serve, but still no answer. I am working on getting hyperbaric treatment but this is dffcult beacause it is not recongized as a treatment for Parkinson's in Israel where we live. Ask your doctor what he knows about this treatment perhaps it is possible for you. Fell better and keep looking ffor a cure
how long after taking it does it happen? It sounds like overdosing. The same happened to my husband. Try slowly reducing each dose. If you get the white tablets rather than the capsules they are easy to cut. Try taking one tablets worth of quarters out every 3 days for a while and see if you feel better or worse.
you might find you can eventually reduce each dose by 1/2. But go slow
Paradoxical reaction - when the rezult is the total opposite of what is expected when taking a particular medication.
15 to 20 minutes after taking Madopar I have the extreme reaction I described in my post. I am convinced that I need a smaller dose but dose reduction is very difficult especially if you don't have the support/guidance of your Neurologist.
If the reaction is 1/2 hour- 1 1/2 hours after dose it is almost certainly too much. We only see the neurologist for my husband every couple of years and they always want to increase and add more meds. after following their advice a few times and my husband becoming so disabled after an increase he couldn't even get onto the bed by himself, and having the spasm choking and chest constriction sensation like you have I decided to decrease his dose as we were desperate and no one was available to see him. And he got so much better that we had a few good years where he was fully mobile again. You know your body and have the right to decrease without permission. Just whatever you do reduce by a small amount at a time and trial each change a few days before decreasing again. Each dose has a peak at around an hour then tapers off so the next one is on top of the previous tails of the day. If you do decide to decrease start by taking a quarter off the last few doses of the day as by late in the day the doses have compounded so nights are usually worst.
This must be very frightening for you to experience, especially with breathing difficulties. Maybe lowering the dose, with help from your Neurologist, might be worth trying.
In my experience of PD meds with my husband is that less meds, although slowness can be a result, equals less side effects. He was dx at 65.
We changed Neurologists as our previous one was guilty of increasing the dose that just gave more side effects without symptom relief. Our current one added in Rasagaline, and Amantadine at low doses, allowing Madopar doses to stay low. The side effects gradually became less although dyskinesia was still there but other side effects lessened.
Thank you for your reply. Yes, reducing the each individual dose does help but is very difficult to achieve as I need to do it very gradually otherwise I'm having really bad withdrawal effects.
I was considering Amantadine as well as it would allow me to reduce the dose of the Madopar quicker. My question is what will happen if I do succeed in reducing the dose of Madopar and then decide to reduce the dose of Amantadine I'm talking. Presumably I wil need to increase the dose of the Madopar, which is a pointless exercise.
Not necessarily you could reduce the dose by spreading the time you take it more throughout the day. My husband takes meds 4 times a day with 2 of the doses being a half dose. Rasagaline and other similar drugs stop the dopamine being broken down. Amantadine is usually taken once or twice a day and has a limit of 3 times. It has a mild dopamine agonist effect, usually to help with dyskinesia.
My husband found doing going longer between doses and after adding Rasagaline this was easier to do.
Altering/reducing drugs in PD isn’t easy and takes time for your body to adjust. Once you find what works stay with that dose.
Hi , I am YOPD'er too. on 14th year now. Iam going to neuro tomorrow..my meds are not helping with gait/freezing. Last 4 months, never know how off/on I will be, then SNAP, Ican be out, at anytime of day, no matter my med schedule, and I can't fricken' wallk/move. Iam going to ask her re: apomorphine pump, and new drug crexont, coming out this month. No matter which way u slice it, PD sucks.
Thanks for your reply.What you are describing sounds very familiar, that is why I am confined to the house and the back garden. With me it's so extreme that I need to lie down which is not ideal in public, especially as it could last for hours..
Reducing the dose of each individual capsule does have a positive effect but it takes ages to achieve.
My Neurologist is very dismissive and this doesn't help either.
That is horrible re: your neuro...get a new one for sure. My Md is so cool she listens to me, I can email her whenever and she or her NP get back to me. she is booked out until Jan/Feb 2025, yet got me in tomorrow due to the fact I am struggling so much with my symptoms. I truly hope u find a new MD.
Do you have capsules or tablets of madopar? Ask for the tablets in the 50/12.5 as they are easy to cut and each one is weaker. I assume you are taking the 100/50 capsules?
I had similiar breathing issues and muscle stiffness issues. Are you supplementing with Magnesium?. Try adding glutathione and amantadine, as well as doing some stretching exersise and humming.
I am on Madopar Immediate release, Madopar Controlled release at night, and Madopar dispersible when I need it.My Neurologist has never suggested any supplementation with Magnesium, do I need a prescription for this? Also, what dose will I need, is there a protocol for taking Magnesium?
I think you dont need magnesium to be prescribed. The dose is 400mg but best magnesium citrate. What you describe sounds like dystonia and magnesium is good for cramps. I experience it when my meds are going off but it can kick in when is on. Try to find a new neuro and perhaps a parkinsons advocate to accompany or prepare you for your neuro meetings. Dismissiveness is not acceptable when your life and quality of life are at stake. Hope you get better.
I agree it sounds like you are getting too much Madopar and I am not a fan of Pramipexole or equivalent after my PwP was put on it over 6 years ago - late last year we got him off it and he is 100% better now. To answer on magnesium - no you don't need a script and if you take it make sure you have the same dosage with potassium eg: 200mg of magnesium and 200mg of potassium - 1:1 and start off low at 200mg of each and if it is not enough you can go up to 500mg quite comfortably. Be aware that if you get loose bowels you may be getting too much magnesium - just see if it settles and if it doesn't drop back about 100mg. Magnesium and potassium work in synergy and most of us are deficient due to our soils our fresh produce are grown in are deficient. We take 500mg of each every day with our evening meal and neither of us suffer with stiffness or cramping and my PwP doesn't have the twisting and clawing with his hands and feet which was very painful for him. It seems you badly need a new neuro and one who will actually listen to you and not be dismissive - those who are like that in my opinion need to go back and learn their craft again and not pay guessing games with these drugs - more drugs are not the answer as we have proven - PwP has halved his intake of Madopar and is functioning very well and much happier in himself now. Best of luck my dear and stand up for yourself with these knowalls.
Your doctor will never address Magnesium issue or any other issue. My best advice - get topical Magnesium, and use it all over your body, especially underarms ( avoid using antiperspirants) and between the toes on your feet, let it dry naturally, even if it takes 20 minutes (you can do some Humming while you wait). Do this daily for a week and let me know if you notice any difference.
Ah, the controlled release might be the problem. That was what gave my husband the horrible choking. Just take the instant at night before bed then when you wake take the next. Most people can go overnight.
I had similiar breathing issues and muscle stiffness issues. Are you supplementing with Magnesium?. Try adding glutathione and amantadine, as well as doing some stretching exersise and humming.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Is this an usual symptom?
My neurologist has taken me off Madopar after being on it for 7 months because it contains Levadopa. What can I have instead? 
Pain, stiffness and muscle spasms anyone??????
I need help in finding a neurologist in Sydney open to talking about Mucuna Prurience and green tea
