Hello all. I've been reading the forums here for a few years. I appreciate the information and the community. This is my first post. I am 47 and was diagnosed 5 years ago.
I have used Mucuna to alleviate my symptoms for about 4 years now. It does a great job helping with everything to include the tremors. However the tremors have gotten worse during off times. Most of my other symptoms have improved through diet and exercise.
I question if the mucuna is actually contributing to worsening tremors during those off times, kind of like an addiction tremor when an addict is jonesing for another hit. I'm thinking about taking a few weeks off of it to test this theory.
Has anyone else tried coming off mucuna or levadopa? Does anybody else suspect the medication makes off time tremors worse?
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BoiseD
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What you suggest is possible, but each individual's case is sufficiently unique that really you don't get too much more than random variation among cases in any individual case, the other possibility being simply that your disease is progressing as it does with most of us eventually. Being a supplement, there's no assurance of standard activity, bioavailability, purity or amount or other qualities in any particular batch in mucuna (or for that matter a pharmaceutical generic for that matter, given the allowed variability of factors in generic pharmaceuticals, but I digress.) There are no enforceable standards for supplements. So it's not likely you're going to get a good answer to think of as dispositive. If increasing the dose or frequency or space between doses and meals or proteins and time of day helps, then by all means carry on if the side effects are tolerable to you. There are a lot of treatments, of meds and supplements in which nobody has any real understanding of the mechanisms or what makes them work, so you're in very good company, as long as you find it works.
Personally I don't think there is a whole lot to gain here by thinking in terms about addiction and mucuna, to me in this case it's about as useful as thinking about being addicted to things like salt or food or water, yes we're addicted to food, but what are you going to do about that, quit? You'll die. Am I applying that to widely? Well okay, then let's just say we're addicted to essential amino acids, it amounts to exactly the same thing you could say about anything else you want to call addictive or addiction. Addiction to amino acids that's every aspect of any definition of addiction. It doesn't really get one very far once you think your way down to the end (unless you want to use it as a tool to modify something, yourself, somebody else, something in nature or building or whatever you're thinking about, then yes it's a tool because you can use it to shape anything that functions and that way). My wife is absolutely "addicted" to a certain heart medication, without it she will die and would already be dead had it not been available.
What I mean is in a sense we're all addicted to food, water, in not much different sense. Addiction serves quite an efficient, adaptive, survival function for us. So conceptually it seems more like a blind alley to me. The entire idea of addiction is actually a subset of larger principle of adaptation which has been established with quite a bit of credibility. And that what I mean is are biochemical systems and makeup function very much as if we were designed to be addicted to things that help us in our survival as much as addiction can also be a problem when it goes awry. And I'm not just simply making a functional analogy, there's a great deal of established science that identifies addiction as exactly one of our survival mechanisms, underlying much of learning itself, and a smaller subset of which we just pejoratively call "addictions" when the mechanisms result in things we don't like. Well, think about "positive" addictions and how useful they could be for doing things like healthy living, learning a skill, mastering something, making a profit rather than just simply being able to consume and then stop operating. When conditions change and we have to adapt and change along with them, addiction is a great way to focus and accelerate are built to move when the food moves (so to speak). Learning is a form of addictive mechanism for example...a very big example. Building muscles and skills and habits and patterns that work for us like learning how to drive in lanes and properly wield a scalpel, how to cook, how to track something visually, how to think and communicate, build (think of the verb without regard to any particular object or subject), hold a thought and put thoughts together and build complex thoughts, movements, skills, and machines, growing in construction and analysis and synthesis in general all have biological, physical substrate evidence that clearly fit a mechanical addiction model right down to the programming and movement of atoms and molecules and on up from there.
My husband has the same effect from c/l medication. I think it’s a combination of the dose wearing off and the effects of the breakdown product of the dopamine. One biproduct is adrenaline . He has a fast DBH according to his genetic test so I think his breakdown products are pushed towards adrenaline which I think make him shakey..
( Just a theory of mine, not a scientifically proven fact)
”Adrenaline triggers the following changes in the body: increasing the heart rate, which may lead to a feeling of the heart racing. redirecting blood toward the muscles, causing a surge in energy or shaking limbs. relaxing the airways to give the muscles more oxygen, which may cause breathing to become shallow.”
LAJ12345 does your husband suffer from mood changes like mine does at all. Like when he takes his meds - around 2 hrs at peak upload he becomes more full of himself, not just the 'up' of the drug, but actual change in the type of person he is. Can be unkind, testy, argumentative and the only thing I can do is SHUT UP or go out... Just wondered... it's something we are struggling with.
Yes, he gets more confident I’d say, and “leave me I can do it myself”. But not in a bad way. I find it good that he at least has some spirit and get up and go in him so it’s a sign he is feeling better.
SSRIs affect him more. They make him impulsive so he takes up gambling, speeding, buying a whole lot of stuff we don’t need, and eating non stop.
Ok... thanks for that. Yes the 'can do it himself' is definitely something he does also. But when 'off meds' it's the opposite. It is good the spirit is still there but I'm pleased you don't get the nastiness.
What are SSRI's. My husband unfortunately from the Dopamine, having been on it so long gets compulsions with a few different things. The worst though has been when he was on Requip (Roprinorole), which he was taken off. But we find the Dopamine still causes some issues with compulsions like fiddling with cables and remotes or anything he can undo (Punding)..... bizarre stuff really. Other things too with money. Thanks anyway.... all the best.
SSRIs are antidepressants. He has been on sertraline (Zoloft) and fluoxetine (Prozac) and both had terrible side effects with him eventually wanting to kill himself.
Yes, when the meds are off he wants me to do everything for him. I have learned to cope with that all the time by saying ok, just wait until I have finished this thing I am doing. As impatience is a problem too eventually he just does it himself if he can.
Oh dear that's awful. I find my husband far easier to deal with when he off. Being on with the mood is killing our relationship and at present no Doctor has given me one bit of advice that has worked. Ignoring just doesn't do it. So I'm working on that myself to find answers and I feel i'm getting to some slowly. It's great your husband can get past the impatience and try himself. I think I remember you guys are similar age to us.
I will admit that I find your husband's behavior quite familiar 🤗🤒😑. Been married for nearly 26 years this April and bless her heart, I can attest to the fact that marriages are indeed "made in heaven" as the saying goes. Any other woman would have quit and left me a long time ago.
Yes, we can be irritating and testy and rude and disrespectful during ON times and pleading and needy during OFF times. It's a terrible disease with the power to destroy families. I wish I could do better and stop panicking and freaking out when my medicine doesn't work.
But I believe in a God and Karma and I ask her for forgiveness after when I lose it it is all due to the helplessness of the disease and the powerlessness to do anything about it.
I can guarantee that your husbands feel the same way and appreciate your support and selfless service to their helplessness and I applaud you for sticking with them!
You just brought my husband to tears reading this to him. It resonates big time time so thank you. He does feel the same and I will never give up supporting and loving him through these 'shite' med moments that umbrella certain hours of the day. Thanks PD patient
I’m 60, he is 64 now. Been doing this 6 years now.
What was his personality as a young man? Is he reverting to that? Mine has always been super polite and respectful and a bottler of emotion raised by a very proper English mum so he has always been like that.
I find it difficult with the independence to dependence switch but can rationalise it so I can anticipate the phase he is due to drug timings so that helps.
He is very emotional now though. We will be watching a sad or even patriotic bit in a movie and he can be tearful now. It definitely makes him more emotional where he never used to show any emotion.
His personality has always been kind and loving and when he is OFF - it still is. When he is ON it mainly is not nice to be around. I think you are very lucky your husband has carried on being so polite and respectful.
I can relate to the emotion. I think my husband is more emotional as well...
Yes he does feel there is a change. But once he has changed he seemingly has no control over it. Today has been a wonderful day though as I have ignored totally the mood and it then brings and keeps him calm.
Oh and by the way if anybody thinks my posts need to have more spaces in them between paragraphs, it is a flaw in hu's model, every time I try to put multiple spaces between paragraphs, even when I try to put four or five spaces between paragraphs (because I have tried that to test the system to see where the limit is) it always changes the paragraphs back down to zero spaces between paragraphs. So it's not for want of trying since I've tried it on several different computers and phones and no matter what the same thing occurs, so it's a forced limitation by whatever whatever editing software HU chooses to use, not me.
I am guessing it's technical, because I do not let them place cookies on my phone and computer. It tends to muck up certain word processing functions but I'd rather have my privacy since they never asked permission to put data trackers on my computer and just do so without asking permission.
Welcome BoiseD and thank you for your first contribution to our forum!
It seems more logical that Parkinson's symptoms become more severe as the years go by, considering that PD is a progressive disease. Your medication only suppresses your tremors but does not stop the progression. Do use medication in moderation to lead as normal a life as possible, but don't make avoidance the sole goal. The focus should be on limiting the progression of your Parkinson's disease, and here on CP, you'll find a treasure trove of information to help with that. If reducing medication is a byproduct, that's a bonus. Personally, I have been able to significantly reduce my medication, but that was only possible after addressing underlying issues such as vitamin B balance, lifestyle, and stress. It took more than just ´a few weeks’ to achieve this. 🍀
I appreciate your post, BoiseD, because I also use Mucuna and have the same concerns. I've been on Mucuna for 3 years.
Mucuna is a natural source of L-Dopa, so yes it does lead to off-time tremors/dyskinesias. Nothing compares with pure organic seed powder mucuna pruriens. It just works better: quicker uptake, longer ON time and less dyskinesia. I quote Dr Rafael Gonzalez Maldonado , the Spanish neurologist who has written several books.
When for convenience we opt for capsules of mucuna, it is a percentage extract for the sake of the L-dopa. But it's missing all the good things in the seed powder. I extended my ON time when I started taking seed powder.
Don't try and come off mucuna suddenly. Do so ever so gradually, like one dose less in a week, and see how you feel after a month or two. Like Esperanto, I am succeeding in reducing my levodopa, but it has to be gradual, and providing stress levels are tended. I need endorphins from exercise but I mustn't push myself with adrenalin.
I get about 7 hours of ON time and 2 hours of OFF time per day. For the rest I am shaky but not like a juddering pool creepy crawly. Adrenalin plays a role too when the meds abruptly end. I lie down to read, rather than push on through the dyskinesia/off-time.
I hope this helps. Maldonado writes in a very easy style. He's good on the subject of Mucuna.
Are you from Boise? Treasure Valley? I am also in the area - first person I have seen on CP from my area. Curious about your local doctors and and PD related medical help you are receiving.
Yeah, I'm from the Treasure Valley. I have chosen to fight PD naturally so my neurologist isn't very helpful. I see her once or twice a year, but generally if I don't take c/l she doesn't offer much.
OH Man, is she in St Lukes off Eagle? Something like Kio???? If so she is the first person we saw. It was a terrible experience. We live in Sweet. Do you know where that is? Welcome to HealthUnlocked. This is a great place to get some GOOD ADVICE and to ask QUESTIONS. These folks are wonderful. I am a wife of a person who I believe to have early stage Parkinson. We tried a neurologist (above) an MD, and St Luke's geriatric team, team of 5. I have been so disillusioned with lack of care or help. There is a DR. Laura Mischley in Seattle we will be seeing soon. She has a web site, a parkinsons school - lots and lots of information and videos. I basically want to see Dr. LM to get a UPDRS score to as a baseline and something to compare in the future. I was very lost and depressed before I found HU - through this sight we have figured out a supplement stack, tweaked our diet, and increased exercise. My husband has REM sleep disorder, lack of smell, and posture. He had a tremor, but it is gone now. It was not a resting tremor, but an extended tremor. My HWP also takes Mucuna. We are three years in. I looked around Treasure Valley and found little help or support. The Geriatric team new very little about PD, and didn't know how to a UPDRS test. I just shook my head. To me it is alarming that the medical help I have engaged know very, very little about Parkinson's. And to go without drugs is way, way beyond them. Well welcome to HU, glad you wrote something.
Triangle is now open on FRi, Sat & Sun. He has been doing a prime rib special on the weekends. The one thing I forgot to mention in my introduction was my husband did get an A-1 syn skin test, and it was positive. Our Dermatologist, is Ms. Zimmerman, after I told her I suspected Parkinson's, she upped my husband's skin review to every 6 months, (PWP tend to have more melanoma.) She also did the A-1syn test. That test was the one thing that told me I was correct. NOT any of the doctors.
This isn't quite what you were asking, but several forum members have found that using Carbidopa along side MP seems to improve or help the positive effects of MP. Perhaps it can extend your on time or help reduce your tremor during off time. Here is a link to one forum members post who discusses the addition of Carbidopa to her MP regimen :
Another consideration is adding B1 if you aren't already using it, because reduced tremor has been reported by several forum members who are taking B1. This link describes the benefits that forum members have reported from using B1 :
Keep in mind this is the sum total of symptom benefits reported by forum members and does not mean anyone got all of these benefits from taking B1. Each member reported the benefits they saw from B1 use and I compiled it into this list. Not all members using B1 got tremor relief and some members reported initially getting various degrees of tremor relief, but only for a short while.
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