My husband has been dosing with MP Nutravita and zandopa mix with green tea for awhile now and he usually gets 3 hours of relief with each dose, but lately dystonia has been hitting him hard in the afternoon and evenings and his tremor gets worse too later in the day/evenings. We have tried adding extra mucuna to his dose with capsules ect, but doesn't seem to help. Thinking he might have to start pharmaceuticals and we are nervous. Not sure if this will even help and do we just abandon MP altogether? He was prescribed Madopar and azilect. He is also doing B1 and a myriad of vitamins. Just seems like he's hitting a brick wall, esp after 3PM and it kills me!
Thanks for any advice
Cheers
Mel
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A couple of ideas regarding natural substances that may help. Licorice root extract contains a natural MAO-B inhibitor and helps a little bit. See my writing here:
Hi Park_Bear, Thank you so much for your sage advice. I have had him use licorice extract when he was first diagnosed, but I was worried about over doing it. I will definitely look into it again.
I haven't tried the cinnamon, but I like the idea of it.
I think we are worried about the Madapor because we want to still incorporate the mucuna, just not sure how to go about it. If he doesn't do well on the Madopar, I'm worried about stopping it cold turkey once we start it as well
He works full time so exercise is intermittent, but we try to keep him moving. I just feel so bad for him esp now that he gets such crazy dystonia
Thank you again for taking the time to respond to my post. Have a great day!
Exercise is the no.1 priority. You have to find a way to do an hour every day and incorporate high intensity and weight bearing full body workout. Cross train.
What good is work if you don't have your health.
I take a teaspoon, roughly 4/5g mp with 1/2 my prescribed dosage of c/l two to three times a day. I digest it with approx. 30mg lemon juice to make it more bioavailable.
Do not eat an hour before or until an hour after to maximise the benefit. No milks or protein based drinks in this time. It messes with the absorption.
After an hour I eat and take 1500 mg b1 twice a day.
Thank you so much for this detailed form of dosing. I'm curious how much levedopa mucuna you use, is it a pure form or a percentage of ldopa? If we start the Madopar mixture with mucuna I'm scared to over do it. I was thinking of giving a 1/4 of madopar with a 15% ldopa capsule and see how it goes.🤞He was drinking grapefruit juice, but started with lemon juice just this week. Not sure he has noticed if it helps or not.
You are so right re exercise and work. And we really need to ramp it up. This is one of our many goals lol!
Yes, I have been incorporating whole bean as well. The levadopa he uses is 1/4tsp pure MP from Nutrivita and I mix some whole bean as well. It's maybe gotten out of hand and the dystonia is showing up, because of that? I have taken him off of all supplements and MP the last two days. No dystonia just bad tremor and stiffness is the result. I will slowly add some stuff back in.
Ok I just tried 1/4 tab of Madopar and he got dystonia its no fun. I won't give up I just wish I had paid more attention in science classes!
Madopar and Mucuna do essentially the same thing. He can take one or the other or some of each. If he does not do well on a starting dosage he can stop without adverse effect. Adverse effects from quitting levodopa meds cold turkey have only occurred in patients with advanced Parkinson's who had been taking high dosages for an extended period. Details of this are behind a pay wall but here is the abstract of the study:
Thank you PB. That makes me feel relief knowing if he has to stop Madopar for whatever reason he can. He does take levadopa mostly a mixture of mucuna 99% Ldopa and zandopa for the whole bean powder benefits. This has worked for a few years with lots of trial and error, but the dystonia is fairly new and super painful for him! It's mainly in his foot which has arthritis so he just loses it when the dystonia starts! Thank you again 🙏
Please keep in mind that too much B1 can not only exacerbate symptoms, but can create new symptoms not previously seen before or symptoms that are worse than previously seen. A little time off from B1 of one to two weeks should answer this question.
Another point worth mentioning is that Dr. Costantini had mentioned many times in the past is that the addition of B1 can reduce the requirement for levodopa and further confirmation of this idea is that some forum members have reported being able to reduce their C/L dose after adding B1 to their regimen. Mucuna is a form of levodopa, so it may require less MP once B1 is added and the effect may not be immediate, but could take place over months. Again, stopping B1 for a couple of weeks should answer this question. If symptom improvement occurs after stopping B1, when he restarts, it should be at a slightly lower B1 dose or with regular B1 mini vacations.
I have him stop his B1 for 5 days in the beginning of every month for a couple of years now. On those days off he gets very stiff ect, but the mucuna dosage has remained the same usually 1/4 tsp of nutrivita 99% Ldopa with Zandopa 1/2 Tablespoon 4 x daily. I have been adding more B1 to try and fix his issues so he usually takes 1600mg up to 1900mg and I started him on 2400mg this month trying to find the sweet spot since his symptoms were changing so drastically.
If I stop his B1 for more than 5 days, do you still feel this will help and if his levadopa is too much because the B1 is helping would too much cause dystonia? The neurologist said he was getting dystonia because of under dosing his levadopa. Hence my confusion and thinking we need to try the pharmaceuticals :/
Thank you so much for your advice, it is much appreciated!
From reports on this forum and elsewhere, too much levodopa can cause dystonia. That seems to be the common complaint from people who go a little too high on levodopa or the purer mucuna which is essentially levodopa without the beneficial components found in MP. B1 can also cause dystonia in some people, but I think levodopa is likely the more common cause.
It won't hurt to drop B1 for a moment to see if it has an affect on the dystonia or increased symptoms. Three to five days should be sufficient based on the previous results you have seen in your husband.
Since you have pushed his B1 dose up this month by roughly 30 % more than he was taking, there is the possibility that it could currently be on the high side and B1 that is too high in a B1 responder will frequently result in increased and or new symptoms.
As soon as you eliminate B1, take notes to see if his symptoms calm down and if they do, you want to take note of how quickly symptoms decline after stopping B1. If he improves within 24 hours of stopping, his dose was very close and he may need to reduce it only slightly. If it takes longer to see any increased symptom relief, he may need a slightly larger dose decrease.
You can do the B1 stop and dosage adjustment after his neurologist optimizes your husbands levodopa dose so as not confuse the issue by adjusting two things at the same time. I guess it will depend on when his next appointment is.
Thank you for helping me realize that its either too much of MP or B1 or both. Like I said earlier the neurologist said it was too little Levadopa. Which is why I was giving him extra when the dystonia wouldn't stop. His Dr doesn't necessarily condone our way of medicating, but he tolerates us. Every time we visit he just tells us to " Take the medications and get on with your life and stop thinking about PD the whole time." We tell him one day maybe, lol.
Anyway, I think we will go cold turkey on all his regime for the next couple of days and see if the dystonia will stop or not. If it does stop then I will add back the main culprits slowly and hopefully find his right doses again. It's like starting from scratch again
I use 1/8 tsp nutrivita 99% levodopa from mucuna so you might want to see if lower dose will work for him. Get a scale and do exactly 500 mg . I’ve had similar experience to what he’s having. Dr C told me I could stop B1 for three weeks without problem.
Thank you for your response. So I understand better, you take 1/8 tsp and that is exactly 500mg? Do you take 1/8 tsp once a day or per dose and if so how many doses a day do you take? I don't have a scale that accurate, but he uses the same Mucuna product.
I have stopped his B1 every month for 5 days, but now I'm going to stop it for a few weeks probably and then try to add it back in. It's a constant balancing act and I'm no gymnast 😉
Thank you for taking the time to write and have a great weekend!
Yes 1/8 spoon is 500 mg and I take every three to four hrs. You must get a jewelers scale for accuracy they are about$20. It’s difficult but possible, best of wishes.
Thank you Erie, that is great info. He is off all his MP and vitamins and his main symptoms are severe right arm and hand tremor and stiffness. I plan on trying to work the Mucuna back in slowly. Its a balancing act fo sure!
I take Madopar every 2 hours. I plan meals to be on the hour in between doses. I also have 800mg of Ropinerole once a day to lengthen the effect. It was 800 2 x daily but I had some adverse side effects. Have you heard of Apomorphine? Although it sounds opiate based it isn't. It worked great for me but unfortunately had an adverse effect on blood pressure, causing a sudden drop, this only happened at a point where I needed to increase the dose to get the benefit. It doesn't necessarily cause that, just in some people. Ask your consultant about it. I have to work very hard to even be able to exercise or do any strenuous activity, but at this time it's post workout that gives ,e the best results for 2-3 hours a day. I found that Macca green tea had an adverse affect on my tremor. I try and eat healthy balanced diet, but do take a zinc and magnesium supplement o help with cramp and sleep issues. I think exercising for strength and to maintain muscle tone and mass is helping me, it's helped my balance, walking, posture and tremor. I do get very fatigued and pain often makes me feel I don't want to but starting slow, stretching then starting resistance works gets me into it every time. I am on insatgram powerliftingtobeatpd. I don't do lessons , sell anything or make any claims only show what I am doing and any progress I make, so post about once a month. Hope this is some help, good luck
Thank you for your post it is very helpful. I have not heard of Apomorphine and will look into it. So far my husband has just taken vitamins and the Mucuna pure L dopa and Zandopa to help with his symptoms. He has not tried any prescription drugs yet. I was thinking since his dystonia has started that maybe Madopar was a better way, and I'm still not sure if we are ready to try it though. I am now just thinking we might stop everything for a day or two and see if he can handle his symptoms cold turkey :/
I'm so glad you are able to do the exercises ect. I think what you do is incredible! My husband works out intermittently and usually feels better afterwards, but getting motivated to do it is the real battle! One thing my husband loves for his aches and pains is he uses an near infrared light bed. He swears by it. But he only gets to use it once a month because access to it is limited. I'm thinking of buying a small light that hangs on the wall. Maybe look into it. Photobiomodulation is the tech term.
All the best to you and your husband I hope it goes well. Exercising is so important, I have met so many PD sufferers that regret not keeping going and pushing through the discomfort. The longer the symptoms go unchecked the more the disease seems to get hold, but it's possible to slow it down with the right medication and regular exercise.
Yes we need a personal motivational speaker I think :). I hope with cooler weather coming soon to our part of the world will get us exercising more. He does enjoy the boxing. Must get back into it!
Have you considered another route to better health than medication, that does nothing to slow down or stop the progression of Pd?My Pd started in 1963 and diagnosed in 1992. In 2002 I was able to stop taking any Pd medication and have live Pd medication-free since then. I am now 86 and still exercising and enjoying my life.
If you contact me at johnpepper@telkomsa.net I will send you mt videos and lots of information, free of charge!
I have seen your posts and encouragement to so many others on this site and your story is incredible and I will definitely try to have my husband contact you for the videos. He can be stubborn, esp since he is in denial still re this nightmare disease. He does love the idea of being drug free though, so he may come a knocking on your door
Thank you for taking the time to write and I hope you have a wonderful day!
First he has to BELIEVE, and my videos can help there, If he believes he can do something about improving his condition then only he can do that. WE have all bee through the stage of not believing there is anything we can do because ot neuros tell us so.You can leas a hose to the water but you can't make him drink!
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