Has anyone managed to reduce Sinemet. If so how.
Thanks
Reducing Sinemet : Has anyone managed to... - Cure Parkinson's
Reducing Sinemet
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Connie18
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Some forum members have mentioned that they have been able to lower their Sinemet dose after adding HDT to their regimen.
Art
Connie18• in reply to
Thanks I'll give it another try
• in reply toConnie18
What was your experience the first time you tried HDT?
Art
Connie18• in reply to
Nothing i tried different amounts for several months,if anyhthing it interferes with Sinemet working
• in reply toConnie18
Unfortunately it sounds like you are a non responder to HDT and probably not worth a second try.
HDT does not work for everybody, just the majority.
Art
nellie58• in reply to
That is such a shame Art. I wonder why this is? I take it too now because my husband is doing so well. I take one 500mg tablet a day and I cannot believe how much more energy I have!
• in reply tonellie58
nellie58,
This is one of the main reasons Dr. C would like to have a study on HDT done, because then it may explain why there is a small group of people who do not seem to respond to HDT and once it is understood why, perhaps a workaround can be developed to turn them into responders. Sometimes it is merely a matter of not enough time at testing because quite simply, it can be frustrating as hell to continue to test HDT and not see one positive result for two or three full months and that will make it extremely difficult to continue testing faithfully, but it has been reported on this forum that it has taken three months or more to see that first positive result!
This is why I often tell people who are struggling with trying to find their optimum dose, that they at least know that they are a responder because they already talked about the good results they have gotten, but have lost them when the dose turned out to be wrong. Just knowing it is going to work for you once you get the dose right makes it much easier to continue to test for months if needed.
Art
Bcarroll• in reply to
What is HDT?
Hi Connie, my husband has reduced his sinemet to just 2 long acting tablets at 2.30am. He did this because it was malfunctioning and lasting such a short time and with bad withdrawals and it also caused drowsiness. He does take atremoplus which helps to extend the life of sinemet in his system. Today it wore of at 12pm, so 9.5 hours later., but usually it lasts about 8 hours. He also is on Dr Costantini's thiamine protocol, which is amazing.
He used to swallow so many sinemet through the day, just to keep them overlapping so he did not withdraw. Ugh, sooo pleased those days are behind us.
I did not understand how he reduced the drug?
Neither do I can he move better now if so maybe he shouldn't ever have been on itbwhich begs the question has he got pd
Lol, yes he definately has Parkinsons and yes he can move! He can get up and down unaided, dress himself, exercise, mow lawns, cook...he is slow but funnily he is at his best late afternoon and evening. He has tried no Sinemet at all but after 2 days he deflates and then it is a few weeks to get back to his best. Trust me it has been trial and error to reach this point and he has had some dreadful times. When we saw Dr Costsntini, a video was taken. I would love to see that now because the improvement is remarkable.
please tell me about Atremoplus where iu order from and how much he takes
atremoplus.com is the website. My husband takes the maximum, 4 x scoops twice a day. It works subtly, there is no big bang. When he stops it, that is when we notice how much better he is on it because it keeps the one sinemet dose he has active in his system. It also supplies vit E and other vitamins that no doubt help his general health. Unfortunately it is expensive and I do not know for how much longer we will be able to buy it. Hubbie retires in September and our income will be much reduced. He has tried Mucuna 40% but it seems to act similarly to Sinemet in his system, his movements and behavior become a little erratic and he gets sleepy. When he finishes work is when we will experiment with it. For now we are just happy that he is stable, balanced, talkative, happy and able to work and confident that Thiamine is preventing him from getting any worse.
I can’t get
Artremoplus.com what is the product? And what are the ingredients?
atremoplus.com
How long does a bottle last?
Hi Connie, most people need between 2 and 4 scoops a day. I buy in bulk and 11 bottles lasts around 4 to 5 months. We have tried to delete it but it is that comfort product that takes the edge off and allows my husband to delete sinemet through the day altogether. Because he is s lon time sufferer, he came to the end of sinemet being reliable in his system. He just takes 2 cr tablets at 2.30am and then Atremoplus whe he gets up and after dinner at night. It works for him. It does not give him the instant result/ high sinemet does.
I do it as often as I possibly can. It’s a struggle, but if I can stay home for 2 days, and tolerate the c/l induced dystonia...by the 3rd day it’s gone. The first day, I pretty much have to take sleeping pills to get through it. The second day is more manageable. The dystonia and dyskinesia are far more disabling than the Parkinson’s. When I refrain from taking the c/l (sinemet) for any amount of time, the dyskinesia and dystonia become more manageable. Additionally, the amount of c/l I require to stay “on,” becomes a lot less. For instance, I can take 1 instead of 1&1/2, and each dose tends to last about 20 minutes longer. (Temporally, until I return to taking it “too much.).
Why do you not stay of them . And what do you use sleeping pills for. ? Agree that the dystonia and.dyskinisea are more disabling than the Parkinson. Do you not get thinking and walking issues if you just stop them?
Mucua pruriens now brand 120mg .2x2 a day or 3 times if needed. Seems to be agreed there is less or no dyskinesia as with sinimet. My husband finally dx in march 18 at 64. Last few weeks 1x truniagen per day 2x 500gm b1.... 2× 2 120 mg mucuna pruriens 2hours before food ( protein) per day. Walking everyday only about 30 min. Says he feels so much better. Should be increasing b1 according to reports from Dr c.
That's my regimen!
So 6 Now Dopa Mucuna capsules total per day?
Sorry not clear ....Now .... is a brand of mucuna pruriens in capsule form 120mg per cap.... cheap to buy...
I didn't know that c/l could bring about dystonia.
Had I known i wouldn't have taken Sinemet as I have read,a lot anout PD giving people speech and swallow problems but not the Sinemet .
I can't talk,anymore and I feel so isolated and it's,painful,swallowing it,feels,like,someone's, pressing on my wind pipe and it feels like I'm going to die . I,spent the day in silence l can't live like that and as,eating,anything at all stops meds
working so I don't ear in day time and that makes me weaknamd shaky and i eat small meal about 5-6 pm and am off at night and in lots of pain my body cramping internalky and unable to breathe properly .
I cant live my life like this. They give out meds like sweets and don't seem to bother what you go through with the side,effects
I'm so sorry Connie. I'm so sorry.
You are brave and I send you love and support.
And thank you for sharing your experience. It helps me and it helps others.
I think this is the disease progression not the meds. Can you see your neurologist and move to controlled release or maybe a different one?
I have found 200mg of B1 helps with dystonia.
This is not true - it is it disease progression- it is rom the drugs that can kill you! u have been brainwashed by big pharma and ignorant neurologists. Read Howard Shifke’s book on Amazon- and read his blog and then sign up with him for counseling- you bought a big lie and don’t hurt others by spreading this lie! please!we all needed to help each other bybsharing the truth not those lies doctors tell us!
Connie, is there an LSVT Loud class that meets in your area or is there a physical therapist who can help you through an LSVT Loud session? Your neurologist (a movement disorders specialist) should be able to direct you to one. In the meantime, YouTube offers a wealth of videos for PwP -- exercises and talks. Here's one that demonstrates physical therapy directed at improving speech and swallowing: youtube.com/watch?v=aIRuDmV...
Here's one that reveals the benefits of this program:
youtube.com/watch?v=gNIdxYj...
Take heart.
I take C/L to keep my dystonia under control. Works great.
Would still like to know why you go back to sinemet and how to you use the sleeping pill I used to tske a really small amount to stop stomach cramp but it stopped working and if I used anymore I would get sleepy I already ready get very sleepy from Sinemet so I don't want to get any worse so I had to stop it and cope with the cramps
I take an ambien so I can sleep through the detox and not have to deal with the dystonia. I typically only make it 3-4 without c/l because the tremor gets super annoying by then.
So it doesn't effect slowness pysically or mentally
I used to suffer from bradykensia, but the Neupro patch has completely alleviated that. I’m on 4 mg.
I’ve never had a problem mentally, but maybe my age helps. I was dx at 34, and am 45 now.
I,was 52 and had no problems with my thinking. Infact i had a very sharpe brain and my own business . It's just that the on/offs efect my brain and thinking.. I think that,after a week or two my thinking will go back to normal but im scared in case sinemet has permentaly messed with my brain
I read theybwere doing triiials on ambien,for treating,,some PD,symtoms but it,was ages ago i,domyb kmow,what,the,ourcome,was
Please tell us how much sinemet you take
And what are the dosages - do you just go cold turkey and stop 🛑 the sinemet and take ambien all day? Please explain what you do. I am desperate for some help getting off this poison that is killing me! Please respond! Thank you Barbara
Jlloy5 please tell me how you do this with more specific information please!
Hi Bcarroll, I’m on carbidopa/levadopa 25/100 mg and 4mg of the neupro patch. I take 2 c/l in the morning and 1 c/l every 1.5 hours. When I detox’s from every couple of weeks, I either deal with the side effects, dystonia specifically, or I will take 5mg of ambien to rest through it. Even with the dystonia twisting my feet, I feel happier when I am not on it. The dystonia will typically disappear within 2 days. I was dx 10 years ago, so I am very symptomatic, and have the first DBS consultation next month.
Thank you for your response. Are y saying that u take no sinemet at all? For how many days? Thank you so much for your help
Yes. I won’t take any sinement. For as many consecutive days that I can stand. I typically last 4-5 days at best, before I get annoyed with the tremors and slowness. It kind of resets things, when I start back on it, I will get by on taking half the medication and less dyskinesia.
My experience exactly...diphasic dyskinesia I presume?
Hi Connie, I went on Keto Diet 8 months ago and gradually reduced my Ropinirole and Sinemet to zero over the next fortnight after 7 years of prescription meds. I’ve just gone Full Carnivore with Intermittent Fasting to push my body into autophagy and cell repair and see what that will do!
Best regards, Phil 2bats
Ps - this is rib-eye heaven 
Did you have problem with movement or thought process coming of so quickly?
My neurologist said that a 2 week taper had been a sensible way to come off the meds and now I just put up with the symptoms instead of the symptoms AND the side-effects! I am a bit slow and less confident physically, but my back pain is much reduced and I’m not depressed. I’m still optimistic that Full Carnivore with Intermittent Fasting may reverse the disease but it looks like years rather than months...
It's really how you handle it mentaly. I handle,being bit slow what i cant handle is the constant off/ons.,they are so severe when i go off its like withdrawn from heroine. The side effects are horrendous worse than the Parkinson's ,i can't speak or swallow and i get bad leviodpa,enduced dystonia especially in my face throat eyes chest.,I asked my nurologist to get me off it but he says I'll die,
I'm dont believe that for a minute. My friend colin came off it but he,had only been on it about year and has been diagonosed 8years and been off it for over 6 years . I wish I'd met him before I was diagonosed i would,never have taken,them. I've known,him,about 4 years and in that time i have got considerably worse,and he had stayed the same. He is just now,strating to,properly better his voice is much,stronger and he is,feeling well and much more,energy. He,has put the work in though and never stops looking for new things to help,he is on a keto diet and lots,of supplements. He has tried to help me but I've been on sinenmet for6'years no I have more problems as it is stoping things working, so its encouraging that you have been able to come of them after longer .
I'm a bit,worried, about my mental,state as,the meds have definitely slowed mental capicity and thoughts. I was very,sharp beforentaking meds had my own business and I'm worred the,simement has harmed me as they make me feel drugged up all,the time. It's one of,reason to come off them.
Well,done for the inspiration
Maybe you should write a blog about journey.,we haven't got enough role models. I'm fed up hearing that when you have it that's the end and you can't recover and you are given meds which have,worse side effects than the condition itself,
Hi Connie,
I wish I’d known about Keto Diet when I was diagnosed as I’m pretty sure I’d be in a much better state now if I’d gone Keto Diet then instead of taking the meds for 7 years. With your comment on heroin, Connie, you did me a great favour by reminding me how bad I felt a few months back in contrast to the way I feel now. Keto worked for me and I think you ought to try it for a month to see how you get on. Despite all the vegan BS you may read it’s perfectly safe - as is the Full Carnivore with Intermittent Fasting, if you feel like progressing to the absolute best exclusion diet. All the research I’ve done points to my Parkinson’s Disease being caused by my previous carb and fructose based diet, so it seems reasonable that if it’s caused by diet it can be fixed by diet.
Looking forward to breaking my 36 hour fast in 7 hours with 500g of ribeye and a couple of eggs, all fried in salty butter!!! This is the longest I’ve ever gone without eating and I feel really good, as suggested by Dr Jason Fung on dietdoctor.com.
Try it - I hope it changes everything for you 
I,will but i don't think I could,manage 3 days without eatIng
It’s surprisingly easy IF you are in ketosis. We went to a Brazilian BBQ in Sydney last night to celebrate my birthday and I ate well over a kilo of meat - and nothing else! Naturally I woke feeling full, so I’ll delay breakfast until tomorrow. That will be 36 hours fast and I won’t feel hungry. If I was on carbs I’d be ravenous...
I've been looking into coming off of C/L meds too because my dyskinesia is getting worse. I take Rytary, which is just a time-release C/L med, like Sinemet ER.
Doctors and even neurologists have very little experience these days with reducing C/L meds, so many of them don't know how to do it safely. Quitting cold-turkey is a terrible idea. I've discovered 2 resources to help understand how it can be done safely. One is a blog by Gary Sharpe who has recently gone through a very difficult time that sounds similar to what you're experiencing.
Short version: he lives in the UK and was able to get into the hospital where a very smart "consultant" diagnosed him as having dopamine poisoning and addiction (he was incapable of controlling how much he took). He was put on morphine and they reduced his dose down from 10 pills/day to 5/day. He describes it as being very difficult but tolerable due to the morphine. Having been in such an advanced state of dopamine poisoning, he still has some brain damage and may always have on/off and other issues, but he is no longer desperate. His story is here: outthinkingparkinsons.com/a...
The second resource is a free online book that you can get here: pdrecovery.org/once-upon-a-...
The book takes a different approach to reduce very, very slowly at home (but with competent help). If you can't find a doctor who'll do it relatively quickly in a hospital, then this might be an option for you. I'm using the book to reduce my Rytary, but I've just started and have only reduced it by 15% so far.
If you decide to go with the book, there's more that you should know, so send me a private message and I'll explain.
Oohh, can you please keep us updated? Sounds really interesting. Thanks!
Hi Nellie,
I wish I’d known about Keto Diet when I was diagnosed as I’m pretty sure I’d be in a much better state now if I’d gone Keto Diet then instead of taking the meds for 7 years. With her comment on heroin Connie did me a great favour by reminding me how bad I felt a few months back in contrast to the way I feel now. Keto worked for me and I think you ought to try it for a month to see how you and your husband get on. Despite all the vegan BS you may read it’s perfectly safe - as is the Full Carnivore with Intermittent Fasting, if you feel like progressing to the absolute best exclusion diet. All the research I’ve done points to my Parkinson’s Disease being caused by my previous carb and fructose based diet, so it seems reasonable that if it’s caused by diet it can be fixed by diet.
Looking forward to breaking my 36 hour fast in 7 hours with 500g of ribeye and a couple of eggs, all fried in salty butter!!! This is the longest I’ve ever gone without eating and I feel really good, as suggested by Dr Jason Fung on dietdoctor.com.
Try it - I hope it changes everything for you both
Hi Connie. I was on sinemet for two years until I asked for a change of medication. My neurologist took me off the sinemet and put me straight onto an MAOb inhibitor. That meant that I came straight off the one and onto the other. That tells me that there is n problem doing that. But is there? There me be withdrawal symptoms, which I obviously did not have.
I am giving you here what I would do if I were you:
I am a fellow Pd patient and am not able to give you medical advice, but I am able to tell you what others have been able to do.
If you do not get any benefit from taking your medication in the way of temporary relief from certain symptoms then you should tell your doctor and ask him to take you off the medication. There is no Pd medication that does anything to slow down the progression of Pd and if you are getting no relief by taking your medication then your doctor should take you off it. Why take any medication if it is not doing you any good?
If you decide to take yourself off the medication I would suggest that you do it very slowly in the following way:
If you are on one type of medication and it is not helping you then reduce that medication by half a pill each week, carefully observing if that reduction is causing you any problems. If it is and that problem persists for the full week then return to the dose that did not cause any problems. If you have reached the point where you had problems, then wait for a few months before trying to come down even further. Keep reducing in that way until you are off the pill altogether.
If you take more than one pill then reduce each pill by half, one week at a time, so you don't reduce more than one type of pill each week. So if you take three different pills you will reduce the first type by half this week, then the second type by half the second week and the third type by half the third week. On the fourth, fifth and sixth weeks you reduce each by another half. YOU are managing it and if anything goes wrong, then consult your doctor. it is your responsibility!
I urge you to be very cautious about doing this. It is your decision.
Your advice on reducing meds is too general and could be quite dangerous. Reducing by half every week is much too fast. This rate assumes a half-life of mere hours or days, which is true for most meds in the bloodstream, but not in the brain. The brain has different mechanisms that affect the dopamine level, including the limbic (or lizard brain) that can take in dopamine, use its stored dopamine over a period of several weeks, then try to get more. So, if you reduce dopamine by a significant amount every week, the limbic won't react until weeks later. A panicking limbic is not something to take lightly.
So, reduce no more than 10%, wait at least a few weeks (10 to be fairly safe), then reduce another 10% if things are ok, otherwise go back to the previous dose. But even this is far too general. It's much, much safer to be monitored by health professionals while reducing meds.
I would go with what you say, but the main rule is to monitor how the patient feels after the reduction and take appropriate steps. I am afraid that I don't believe that neurologists, who increase levodopa medication very fast, deserve to be treated with respect, especially if it is because the previous dose showed no improvement. Levodopa is designed to hide a symptom and if it does not do so at a level of 4 pills a day, it obviously is not the right medication, stated as a patient!
I have replaced it with Mucuna Pruriens and B1. Actually, just started.
Still have tremor. Also increased my speed and duration on stationary cycle.
My husband is in the process of reducing his medication of Sinemet. He has had PD for 5 years and is taking 25/100 , 2 pills three times a day. Due to hallucinations that are driving him crazy, we have reduced his meds by a half pill at a time for a two week period then another half the next two weeks and so on. He’s down to four at the moment. Still has hallucinations but not quite as many. His neurologist does not want to change his meds or put him on an anti- psychotic drug.
Hope this helps.
Connie18• in reply to
Has he got very slow and ridgitb movement wise
• in reply toConnie18
Yes he does but on top of Parkinson’s, my husband has a walk I problem on his left side due to a car accident. Has had his hip replaced three times and has what’s called drop foot. So I can’t really see any changes in his walking due to reducing meds.
• in reply to
That should have said a walking problem.
Yes--my husband got worse with an increased dose. His movement specialist kept raising the dose trying to get the tremor to go away. It made the tremor worse. I told my husband to not just obey his doctor. It's best to listen to your body. Don't give control over your body to someone else. If a supposed cure makes you worse, then don't take it, or cut back until it does help. That's ultimately what my husband did. Half the dose was best for him. We told the doctor what we did. He was fine with it. What you have to remember about sinemet is that it isn't a cure. It's a drug to make you more comfortable with the disease. If it's not accomplishing that, you shouldn't be taking it.
My husband had a terrible experience with Mirapex, the first Parkinson's drug my husband tried. We were just learning about Parkinson's, and like everyone, we were in shock. My husband dutifully took that drug, and his doctor kept increasing it to try to get rid of his tremor. The doctor said to watch out for compulsive behaviors and call him if that happened.
Compulsive behaviors didn't happen, but hallucinations and delusions did. And we thought it was just his Parkinson's progressing. My poor husband was seeing visions on the ceiling at night, he thought there were people hiding behind the furniture, he heard people that weren't there. He couldn't tell what was real and what wasn't. At first he would joke about it, then he became terrified. I don't know what made me look up Mirapex, but I did and learned that was a major side effect. Since that drug wasn't doing a thing for his tremor, we started dropping the dose by a pill a week, just the way his doctor had increased it. We went into his doctor and told him what was happening. He kinda freaked out. None of his other patients had had delusions and hallucinations. When I told him I was sorry that we dropped the dose without consulting him, he was fine with it, saying it was what he would have done.
So that's our experience. Sometimes I think my husband is misdiagnosed, because these drugs haven't helped his tremor.
I have been told that no meds stop the tremour and that the pd drugs only help movement. Well if that's corect and you have no movement issues you shouldn't be taking the PD meds especially if they've not doing anything. They've toixic drugs which should be taken with caution and not given out like sweets. They help my movement but they caused the problem as I only has toe cramp and couldn't write or swing my arm and my foot dragged , I admit that the meds helped that but I have natural ways of doing that. I was not slow but I m now cos the meds have made me go really slow and infact i can only shuffle at best and often can't move. I know that if I hadn't taken them I would be able to walk,
Has he stopped meds all together now
Tremor from PD and "ticcing" caused by the L-dopa meds are often confused with each other. If it's ticcing caused by meds, increasing the meds won't help and might worsen it. From "Once Upon a Pill", written by a woman who ran a non-profit clinic. She could not legally suggest med changes, because she was not an MD, but by carefully choosing her words, she helped many PwP to reduce their dose:
"Eventually, after this patient reduced his medication slowly and carefully over more than a year, the violent ticcing stopped and his original tremor – a small, fluttering, weak movement – reappeared, amazing him and his family. For the first time, the family members were willing to admit that possibly the violent ticcing was a drug-related twitching – not tremor, a normal symptom of Parkinson’s disease. The violent ticcing showed no signs of slowing until he got down to 300 mg/day (from his high of 1000 mg/day) and stayed at this lowered level for three months.
Another patient had violent twitching throughout her body until she decreased from a high of 400 mg/day down to 50 mg/day. When she had been at 50 mg/day for nearly two months, the violent shaking abruptly ceased, and she asked me why she was doing “this really annoying, weird, little flutter thing.” When I told her that that was her Parkinson's disease tremor, which was the reason she had started taking the L-dopa, she was amazed. “But the jerky twitchy stuff was much worse than this! Who would ever take drugs that cause that violent stuff just to temporarily mask this stupid tremoring?” I had to point out to her that in point of fact, she had done just that.
“But I thought the twitching was the tremor!” she bleated. “That’s why I kept increasing my drugs!”
“But I told you that what you had was drug-induced ticcing. I said every week that what you had wasn’t tremor, and you didn’t believe me. I pointed out that muscle twitching was listed right here in the list of adverse effects of the drugs.”
These two cases are about taking meds for tremor. What about when one cannot move because of pd rigidity without the meds?
First of all, for the first 6+ years after I'd been diagnosed, I tried all the different pills that 3 neurologists could think of but they had no (good) effect on me. Sinemet was the worst; even less than 25mg of Sinemet L-dopa made me so ill I wanted to die. As a result, I suffered from worsening PD symptoms for several years with no help from any meds. So, unlike many who went on meds early, I have a good idea of what moderately-advanced PD actually feels like; the terrible rigidity, falling, and near-constant tremor etc.
Obviously, I can't recommend any medicines because I'm not an MD. But I guess one thing to look into is the "recovery from PD" this author claims to have occurred in some of her patients who were off any PD meds. If you believe her, the other free books on her site are at least an interesting read. She provides pretty much all the information you'd need to try it, although it does seem to require an open-minded helper who's willing to learn a few things. If you're successful, I'm sure we'd all be very interested in hearing about it!
After reading advice from John about detoxing slowly I’m hesitant to say I cold turkey’d sinimet/ levodopa.
My Dr. recently added Entacapone to prolong the “on” duration of Levodopa. She won’t be happy when I tell her how it’s going. The side effects, dystonia where worse than the tremor cure. I’m a bartender and the tremor helps shaking mixed drinks. Joey
I am not an expert, but I've read that cold turkeying levodopa can be dangerous. Glad you're okay!
I think it depends a lot on how much you were taking and for how long. Also, whether you had any signs of the meds causing problems before you quit them. In that book "Once Upon a Pill" she tells about two patients who quit very easily probably because they'd been very recently diagnosed and hadn't been on the meds very long.
It's been 4 months since your post. How are you doing these days?
Hey JAS9, Thanks for the concern.
I’m taking 500mgs of B1 twice a day.
Mucuna 500mgs twice a day with green tea when I remember.
I take one 25/100 C/L when I’m working as a bartender. It helps my tremor and shuffling. I also take Rasagiline once a day.
My neurologist isn’t happy with me using C/L recreationally but l hate the side effect of curling toes. Taking it
as prescribed 2 25/100 C/L 4 X daily for 3 yrs. led to dystonia.
I’m about to add mannitol to my regiment.
I’m spinning for an hour 4 x weekly.
That’s the best pill of all.
I read your posts religiously.
How are you feeling? Joe
Thanks for asking, Joe. I'm feeling a lot of competing sensations, moods, and feelings. I think that we PwP tend to answer that question by averaging everything out. We have to; the details of everything we're feeling would just swamp a conversation, wouldn't they? But answering this in detail will be a good exercise for me. I'll work on a detailed answer, but that'll take a while, so, for now, I'm doing ok. Let me respond to the rest of your post first.
I've decided to reduce my dose of L-dopa, and I've been at it for 4 weeks now. I'm using the "Once Upon a Pill" book as a guide; not because I believe 100% in her claim of "recovery from PD" (a different and complicated topic) but because she seems to have the most experience with dose reduction than anyone else I know of. My neurologist evidently doesn't have a clue. I want to be taking as little L-dopa as I can to avoid dyskinesia as long as I can.
Yay for B1! B1 is an ace up my sleeve. Before I reduced my dose 4 weeks ago, I took 2000mg of B1 a day, but now I take up to 4000mg/day to help deal with some of the increased PD symptoms. It definitely helps. I just wish I knew WHY it helps.
I'm up in the air on whether mucuna is a good idea or not. So many here say it's great, but maybe it's simply that they don't know that they're overmedicating themselves with it? OTOH, some say that they have both improved PD and reduced dyskinesia (which shouldn't be the case with overmedication). So I don't know.
Hadlock states clearly that, in her limited experience, the mucuna users she came across were overmedicated by a lot (but couldn't see it themselves) and that it's the size of the dose of L-dopa (and other dopamine-enhancing meds) that causes brain damage, whether it's from herbs or synthetic. I'll keep an open mind on it for now.
Curling toes: Yeah, I hated the curling toes too. It's the only real dystonia I've experienced since getting on Rytary 4 years ago, but it's enough for me to reduce my dose. I like what Hadlock says:
'The drug books suggest that dyskinesia is an “adverse effect.” Adverse effect does not mean “curious side effect.” “Adverse” means “harmful.” As an example of just how harmful it is, the warning insert for Carbidopa/levodopa states, “Muscle twitching or twitching of eyelids may be signs of overdose. Treatment of overdose includes gastric lavage [stomach pumping] and antiarrhythmics, if needed.” The manufacturers of Permax say, “Toxicity may cause involuntary movements.” Mirapex makers advise to “adjust dose gradually to achieve maximum therapeutic effect balanced against the main adverse effects of dyskinesia (and) hallucinations…” (Hallucinations can be signs of brain damage.) This last does not mean “strike a happy medium between movement and dyskinesia.” These warnings mean “get as good a result as you can while staying far clear of danger signs: dyskinesia and hallucination.” Eldepryl manufacturers warn, “In patients who experience an increase of adverse reactions (including dyskinesias), reduction…is necessary.”
To put this into a frightening perspective, most people with dyskinesias – and their doctors – accept monstrous levels of spasm and writhing as “normal side effects” of their drugs. And yet the manufacturers are alarmed at the merest twitching of eyelids. The researchers who should know best about these drugs suggest that at the first sign of any twitching, the drugged one is so dangerously top heavy that he needs gastric lavage, drugs to prevent heart attack, and, of course, a reduction in dose. The wide difference between the alarm with which the manufacturers regard mere twitching and the insouciance with which doctors and patients alike dismiss violent dyskinesia should tell you that something is rotten in the way these drugs are being administered.
So, once again, risking redundancy, here it is – any sign of dyskinesia is a sign that brain damage is ongoing. There is NO acceptable level of dyskinesia.'
Spinning: It's fantastic to have an outside interest that's social and fun. I need to work on that. I love my walks, but I can't seem to get anyone to walk with me. I live in an area with a lot of retirees, and you'd think there'd be a lot of people out on a nice day enjoying the sun and nature. But, nope, I hardly ever see anyone.
Getting back to mucuna, do you have an estimate as to how much L-dopa is getting to your brain when you take mucuna? Here's Havlock's input:
A patient who visited our clinic had taken a Macuna extract that contained 0% levodopa. She took 1000 mg/day for two weeks. (This would be equivalent to 25 mg/day of carbidopa-levodopa. Without a buffer such as carbidopa, levodopa is only about 25% as effective: one must take four times as much levodopa as they would carbidopa-levodopa, to get the same effect as Sinemet.)
For Rytary it's a little different because it's time-released. It has C/L but isn't absorbed as completely as regular Sinemet, so I have to multiply the Rytary's L-dopa by 0.7 to get what I call a "Sinemet equivalent". Math is fun.
JA Just got back from visiting my 92 year old m in law at her assisted living.
She was nice enough to invite me for brunch for Father’s Day. She was with her 97 year old male friend, together they put me (70) to shame.
I took my 500 mg Mucuna on an empty stomach in the morning along with the 500 mg B1. Unfortunately, my tremor was dominate so I took 25/100 C/L, fearing I’d be invited to move in.
I fell asleep during brunch while the conversation flourished.
I’m shooting from the hip with my medication. Over medicating.
Last time I take both.
I’ll try increasing B1 and decreasing Mucuna. Although last time I did, I felt, it my have made my tremor worse.
Sorry about my approach to medication, I can see your more articulate.
The Mucuna gives me dystonia like the C/L. But I take a lot more Mucuna 1000mgs. Vs. 25/100 C/L.
Sorry, my fault. I get too wrapped up in my calculations about meds and try to understand everything that Hadlock has written.
My concern about mucuna is that it's hard to know exactly how much L-dopa I would get. Is it the same from day to day or does the amount vary from bag to bag? I wish I knew for sure.
With synthetic drugs, I can at least trust that it's always the same. Then I can start to see patterns in my symptoms for different doses.
My son came home this weekend and I also visited an old friend. And, just as I was complaining that I never saw anyone on my walks, last night I talked with my neighbor walking her new dog.
I have an apt with a new neurologist later today and I'll bring up my reduction plan with her.
B1 makes my tremors worse if I take too much.
JA just read Hadlocks intro. I didn’t go mad when I quit C/L. I’ll read more later.
I see your a vegetarian. My wife and I are crunchy granola too but since my 19 yr old son still lives at home we’re compelled to serve meat. How did you get started? No eggs?
I do eat a lot of fruit smoothies with a concoction of herbs to long to list. I’ve recently added organic powdered green tea to the mix. Reason being, it facilitates the Mucuna crossing the blood brain barrier.
Walking is as good as cycling. I walk my dogs two miles 5 days a week.
I’ve noticed that when I’m lethargic
My tremor gets worse. Joe
Are you sure you didn't go mad? How would you know? (joking)
When you switched from C/L meds to mucuna, did you do it all at once? One day on C/L and the next day on mucuna? Because that wouldn't drive you mad, probably, as long as you took enough mucuna so your L-dopa in your brain didn't go down. You wrote: "But I take a lot more Mucuna 1000mgs. Vs. 25/100 C/L." so by my estimates you're getting 1000mg/4 = 250mg (how often a day?) into your brain from mucuna. But there's also a purity that has to be figured in.
My wife's been vegetarian for 35 years, but she and I've been vegan for 2 years now. She does it to save the animals, I mostly do it for health but also the animals. No eggs or dairy. Not for everyone I know.
Walking is great. I walk 2-3 miles a day, whether I feel like it or not. I'm adding green tea too. And I eat a lot of fruit, not smoothies, but I'm sure they're great too.
Well, I'm giving up on neurologists. I've had 5 now and all they want to do is give me more medicine. Did I hickup? Give me more meds! (kidding - sort of)
Hi JA. I never consciously quit c/l one day and started the next with Mucuna.
I bought a big bag of powder,
OO gel caps, and a make your own capsule machine. I made 500 pills that could hold 500+ mgs. each.
I take one pill AM. One pill PM. If I’m working an 18 hr. day a third. I work at
The Peninsula Hotel in NYC. Feast or famine. Tomorrow I’m off.
I’m holding my phone now, shaking slightly.
Yesterday I spun at 9 AM and didn’t shake for the rest of the day. No luck today as I’m at work.
I will say C/L stops the tremor but the side effects aren’t worth it.
I’ll keep going to my neurologist and continue with Rasagaline :
Azilect is a monoamine oxidase-B (MAO-B) inhibitor, that acts to increase the levels of dopamine in the brain. MAO-B is an enzyme (a catalyst that triggers a chemical reaction) that normally breaks down dopamine, to prevent levels from increasing too high. By stopping this enzyme from working Azilect can allow the body to maintain the small amount of dopamine Parkinson’s patients produce for longer. This can restore some dopamine communication and reduce motor symptoms.
My neurologist is a beautiful, young, blonde from Portland Maine. I look forward to lying to her that I’m still taking C/L. I told her I’m taking Mucuna.
Speaking of saving animals. I live on a river in Ct. where a lot of them go to drink. The other day a giant snapping turtle needed our help rerun from laying her eggs in my woods to the river. Every year same thing.
Breaks over. Joe
Check out this book. Once Upon a Pill.
pdrecovery.org/once-upon-a-...
"Our patients were able to discover safe methods for slowly increasing and decreasing drug doses to control the benefits and adverse effects of the medications."
I haven't read it but I've read her other work.
(It is available as a free download.)
660 pages! Can I skim it?
Thanks Elliot
I know, right? She's kind of full-on.
Have a look, see if it is valuable.
One take home: make changes gradually.
Now that I recall, I did cut back to one pill a day for a few days.
It's a terrifying read. It's one of the reasons I went off meds when I did and why I took a month to do it.
I recently quit c/l and azilect I have little tremmoring but had problems with standing, walking along with increasing feelings of sudden falling.Also increasing pains. Only reason I took cl because I was not into falling and breaking bones.cl worked right away. However noticed a lowered immune system. Recently had bruise like spots on both forearms and abdomen along with swelling of lymph nodes on both sides of neck. After dealing with the everything flu, I stopped eating for a few days which incuded no meds..After regaining strength I took meds again only cut in half and finally weaned myself off. That was 3 weeks ago. I'm increasing exercise and avoiding all sugar. I'm interested in learning about supplements. Been on cl for about 4 yrs. My body may already be saturated with cl so hope I do not have to return to cl. Thankfully the spots have disappeared and lymph gave also gone down. Also do not have the above symptoms.I take lemon honey and garlic drink every morning. I think cl has its place and can help many, but that is just my story.
How much Sinemet where you taking ? Did you get any problem with slowness pysical or mental on stopping it?
I was taking 25/100 cl every 2 1/2 hours about 6 a day plus Azilect one in in morning. I'm aware I may have to return to the meds but am exploring options. I weaned myself gradually to one tablet halved twice a day And for a few days later stopped.
But did you have any physical or mental. Issues coming of them and now . How long have you been of them?
Can you please tell what "options" you're weighing? Are you considering the ideas in the other (free) books written by the same author, Janice Hadlock?
I was very ill with a very bad flu that made me question if cl was
Working against my immune system.. I wondered what life would be like without any meds. That was 4 months ago. Pd symptoms can affect us in a variety of ways. For me it was no tremmoring, however,increasing feeling of falling, pain, dropping things, difficult to stand and walk to name a few. It was like cl gave me my life back. However dealing with flu and enduring months of relapses made me experiment with stopping meds. My adult son and a friend experienced similar flu symptoms who do not have pd. So i was dealing with two different health situations.
I do not recommend anyone to stop their meds because each of us are different, but will share what I've explored with options: because I was too weak to go to gym etc, I started an exercise program from YouTube daily whether I initially feel like it or not I do it everyday at 1st it was 5 min a day, but now worked up to 25 min daily. . I do ballet stretches that has helped with my core and strengthen my legs. There are videos also of a variety of any type exercises which most anyone can do whether sitting in a chair or standing.. I feel being dedicated to doing these exercises has been the number one thing that has helped me. The other option ,which was harder at first then exercise, was stopped all sugar. The initial withdrawal has past. I've been more diligent with vitamins especially b1. Also sometimes take mucuna. Oil of oregano has helped this virus relapse so far. I still have pd symptoms with dragging foot sometimes along; with stiffness etc that remind me pd is still with me, but no more feeling of falling and can walk much better. I'm still off cl, but would continue if needed at another time. My very bad flu gave me time to re-think my options and become my own guinea pig you might say. I certainly do not recommend anyone trying this without their doc. It can be dangerous stopping our meds cold turkey. I very gradually lessened my doses over several weeks time. Please know I do not encourage anyone to stop their meds, but just sharing my story. Exercise turned out to be the best option! Have a beautiful day.☺
It has to be slow. Please read ONCE UPON A PILL by Janice Hadlock. Very informative. Free from the internet
I got to a point at which I couldn't make myself understood. My doctor told me the only hope was meditation. I saw another doctor, and he suggested I cut my dose of amantidine in half, which has been linked to speech difficulty. I did. A consulting doc told me to cut out amantidine entirely. I was soon talking again.
I was also taking c/l at that time, but I quit and started taking dopa mucuna (NOW brand) instead. My condition improved dramatically!
replaced some Sinemet with mucana puriens
getting behind on Sinemet or other dopamine replacements
is kinda like getting dehydrated from not drinking enough water
if you get behind, it takes a while to catch up
I'm so happy to get your reply everyone says it's the conition I knew it was meds. How much Sinemet were you on and how long for. Did you have off and ons in what way did your condition improve ? How did you convert Sinemet into dopa?
And never hesitate to get a second opinion -- from a neurologist specializing in movement disorders.
In an earlier post above, I mentioned my husband was in the process of reducing his Sinemet and we were at 4 down from 6. We were reducing it as my husband was having hallucinations which was driving him crazy (and me). We were doing the reduction half pill at a time and I meni didn’t think there was any problem with movement. Well, that has changed. We got down to 3 and a half and his walking changed. He got slower, balance was worse and noe he needed help getting up and out of bed! He didn’t have those problems before!
We started the reduction because of hallucinations. Well, they are still there as much as before. Not grater, not less so the Sinemet as far as I’m concerned is not necessarily the cause of the hallucinations. I am now using his Sinemet in hopes of recovering his movement so he’s more mobile again. We started him on B1 in January only 1pill a day 100 mg. Neurologist would not comment on B1. So going to increase Sinemet and hope for the best. Going to see family Dr re this whole process as neurologist does not seem to help us with hallucinations.
adam43star• in reply to
Hey NOrm1025, thanks for sharing your stories.
How is your husband now? Did you manage to get any better managing the physical symptons?
My mum diagnosed last july 2018, started hallucinating within weeks of starting sinemet; although prior to diagnosis she was feeling a bit light headed in some points and noticed claustrophobia was a little more pronounced (e.g. getting on trains / plains etc.). She has been on 4 x 62.5 sinemet a day and the spaced out feeling has been a constant; makes her unsteady on feet and down about being not confident to get out and about.
Spaced out feeling worse in last few weeks. Spoke with the neurologist and she agreed to take it down to 3 x 62.5mg a day. My mum had a good day yesterday, when no spaced out feeling at all, until about 3pm, which was massive. today unfortunately spaced out again...Have asked the neurologist about reducing half of one tablet.
She stopped having hallucinations, but is still not all there sometimes -
more I learn about sinemet, wish She had never started on it, nonetheless...im learning.
Nonetheless, sending my prayers out to you and your husband.
Thanks again
• in reply toadam43star
Hi there! So we only went down to the 4 then went back up. It’s been a roller coaster with the Sinemet. One minute they say to reduce they tried to get him to take Seroquel! That was a foray nightmare. Knocked him right out. And that was at the lowest dosage. Dropped that and we are back at reducing Sinemet again. It’s so tiring. His hallucinations are as bad as ever. I really believe the hallucinations are not going to go away. We’re ready to drop to 3 1/2 but he seems slower in his movements. I’m Leary to drop but will give it a try. My husky will get into those “zoned out” stars also. He doesn’t think he’s doing it but he does. And like you say, my husband is pretty good until later in the afternoon also. Good luck to you and your mom. I’m glad she at least got rid of her hallucinations.
adam43star• in reply to
Norm1025; many thanks for getting back to me. I can only empathise and such a nightmare with the drugs as they’re just guessing but it’s unfortunately what they have available in western medicine. My mum takes the symprove gut Bacteria every morning and as such has shown signs of improvement.
Does your husband exercise ? Is he able as it is one of the things that has helped my mum a lot -
We’ve been told by neurologist can go back down to 2.5 x tablets a day 62.5mg. Also getting her to take b12 and vit d3 and also getting her to try the vestibular exercises which have helped other members of the forum
Will keep you posted and I wish you luck and as always my prayer are with you and your husband
Ps am probably going to get mum to order vielight headset for infrared from oz
Supposedly very good too and worth a punt as they give back 80% of money if no results after 6 months
• in reply toadam43star
All the reading I do does indicate that indeed exercise is definitely beneficial to those with Parkinson’s. Bit no, my husband doesn’t exercise per day. He does get up and move around but won’t actually do exercises. Not much I can do with that!! My husband has also been taking a probiotic every morning for years!! So yes, it certainly won’t hurt your mom to try that. Like I mentioned, this is getting so frustrating that I think I will insist his doctor do some blood work to see if he is lacking in any vitamins. We did try B1 but it didn’t seem to do anything. I did read somewhere that the Sinemet does deplete B12 so yes, that to should help. Will let you know if I ever get him checked and add the vitamins to him! Thanks for your feedback!
adam43star• in reply to
Hey NOrm1025, thanks for this. Yes if you can get exercise, as all research indicates it's super beneficial and jon pepper who believes in it has been a great support for me too. You can see his bio on here. Yes not bad re. the bloods, definitely worth a try. I'll keep you posted as trying to get the sinemet down and will be trying many other options as always - onwards and upwards, and I wish you the very best as always.
Thanks
• in reply toadam43star
Same to you!! Good luck!
I have migrated over to Mucuna powder from Sinemet (and all other synthetic drugs) and haven't looked back since. My PD symptoms are a fraction of what they were when taking synthetic meds. It definitely works for me and I would recommend it to anyone.
I take 4gr (in capsules) 4 times per day. It lasts at least 4hr (depending on food intake) and I buy it on Alibaba.com web site. I buy the 98% purity. I also used to get nausea at times from it but since filling my own capsules, that has gone. It is definitely worth it.
I've been able to reduce my Rytary by 17% so far. Sinemet is C/L and Rytary is too, just time-released capsules. My total daily dose of L-dopa from Rytary was about 1000mg. Rytary isn't as thoroughly absorbed as Sinemet, so it's not a simple comparison, but this is close.
Honestly, it wasn't easy but I'm glad that I did it. I plan to continue to reduce it to - hopefully - 50% of what I started with.
I'm following the reduction methods that are detailed in "Once Upon a Pill", a free online book that you can find here: pdrecovery.org/wp-content/u...
I'm following this book, not because I necessarily believe the author's claim that foot massages and certain mental exercises have helped her clients "recover from PD", but because she freely shares her many experiences in helping PwP reduce their drugs. This book is over 600 pages long and has a lot of good information.
The basics:
Don't reduce by more than 10% at a time.
Wait until you notice your brain readjusting to the new drug level before reducing again.
The first 10 days after a reduction are tricky (see the book for details - search for "slide")
The readjustment can happen pretty quickly after the first 10 days, or take up to 10 weeks.
Until your brain readjusts, it's unpleasant; you might experience all sorts of "withdrawal" symptoms. Coming down from a high daily dose of dopamine-enhancing drugs can be difficult, but slow and steady has worked for me so far.
Maybe an even better question than "how" to do it is why someone might want to. But that's not what this post asked, so I won't go there. As always, good luck and be safe!
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