"If you suddenly stop taking levodopa and carbidopa, you could develop a serious syndrome that causes fever, rigid muscles, unusual body movements, and confusion." medlineplus.gov/druginfo/me....
What kind of unusual body movements does stopping Levodopa cause?
Confused: I feel like I am having great success. The problem is, I have developed what I believe is Dyskinesia because my shaking gets worst when exercising (my tremor at no activity is near nonexistent). Cutting back on Levodopa a little seems to lesson, but farther reduction seems to make worst.
Am I trying to reduce Levodopa too quickly? A listed side effect of Levodopa withdrawal is unusual body movements.
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"Stopping Sinemet “cold turkey” can cause life threatening symptoms, such as:
dangerously high fever or hyperpyrexia.
confusion.
sweating.
loss of consciousness.
rigid muscles.
changes in blood pressure."
"Yes, stopping Sinemet can lead to withdrawal symptoms. These are side effects that can happen when you stop taking a drug your body has become dependent on.
Stopping Sinemet suddenly or reducing your dosage can cause a life threatening condition similar to neuroleptic malignant syndrome (NMS)."
I too am working at reducing my carbidopa/levadopa intake. It's very hard to find good information and one needs to be very careful. There is an excellent free online book (I printed it out) called "Once Upon a Pill' it's a long book, with many case histories of folks trying to lessen their dosage. Very informative even if you're not considering lowering dosage. Explains in detail the things that happen in our PD bodies and among other things it has helped me understand which of my symptoms are from PD and which are due to the meds...
The book is so expansive and I'm so short of time that I have not taken detailed general notes, rather I use it as a resource. It is well indexed so if I'm having a particular symptom, I look it up. The current one I've been researching is freezing. Apparently people who have never taken meds, don't experience this. I've recently begun experiencing it. It can be a sign of over medication, but nothing is that simple and straightforward...
Wow, that was a hhuge revelation to me. People who don't take meds don't freeze? I would sure love it if anyone else out there can corroborate this. Thank you sooooo much!
I can corroborate this or at least this is my experience.
I usually only take meds (combination of Sinemet and NOW Dopa MUCUNA) in the morning because they make me feel jittery. I only get freezing or stutter steps when on medication. And I have been experiencing this a lot lately due to a stressful family situation. I NEVER experience freezing or stutter steps when off medication. When off meds my arms don’t swing, my body is stiffer and I am slower moving but never freezing.
Yesterday I walked 4 miles while medicated and froze up about 12 times. 2 weeks ago I skipped taking any meds for 2 days and not a single freezing or stuttering event even though I was actively doing projects around the house.
For me, I freeze when I sense danger(ice on path, car passing, dog barking) or just an invasion of my private space(phone ringing, doorbell) because Sinemet puts my nervous system on high alert. I wish it had more of a relaxing effect on me as everyone else seems to experience but lately I hate taking it.
I’m interested in your experience with NOW brand mucuna. I currently only take 1/4 of a IR Sinemet, a couple times/week, and am wondering what the equivalent part, or whole, that a mucuna capsule would be. Is the mucuna effective alone, or do you have to combine it with Sinemet to be effective?
I just began having freezing episodes this fall after starting on the B1 therapy. I'm not doing that anymore and I've all but dropped the single daily dose of C/L (25 mg of levadopa) but I'm still experiencing the freezing, even though I go days at a time with no C/L
ive been on c/l since 2009 ....6-7 times a day.....im down to 1, 25/100 perday...it took me a month .....i skip the 1/day frequently....i did this because its a dead end drug imo. hang tough
That's a fast reduction! Be careful, it can take 10 weeks or more to feel the full effect, and some of the effect can be physiological (dangerously so) I would stick with at least your current amount for at least the full 10 weeks before any further reduction. As for other addictive substances it is recommended to reduce by no more than 10% every 10 weeks. 10% of current dose (so reduction gets smaller as doses get smaller.) People can die if they reduce too quickly. Your reduction is much, much larger than that. I recommend reading "Once Upon a Pill", it's long but you need to be informed for your safety.
Interesting isn’t it when newbies think they know everything; and have no trouble newsplaining (equivalent to mansplaining. ) with no awareness to veterans/long-timers who have been through it all? I’m sort of fried from some of the comments on Parkie’s posts so my patience is a little bit thin at the moment.
My concern is for other newbies who may not be as well informed as you veterans and who might be led to believe that a rapid reducion is safe. It might be safe under certain circumstances and very dangerous under others. In my opinion, any discussion of med reduction should include cautions. I am someone who is in the process of med reduction.
I'm pretty sure dyskinesia is another symptom that it drug related. PDers who have never been on meds, don't get it.
The challenge is finding anyone who has never been on meds. Most doctors start their patients on meds at the first inkling that they might have PD. For me that was well before I knew about the drawbacks of the meds.
For approximately 55 yrs Levodopa has been the gold standard. The problem is all the literature is tainted -- there isn't clear lines what is PD and what is levodopa.
From reading "Once Upon a Pill" I think the lines are clearer than big Pharma would like us to believe. Recently I found an opening that reveals that the medical community is more aware of the drawbacks than they usually let on. To see this, Google "Honeymoon" period for PD. It's the time when we're first put on meds (for me at that time I had few symptoms) until we begin experiencing the downsides. I think 1 or 2 years is usual. So we're feeling better than usual (dopamine is like an opiod but worse) thinking this PD isn't so bad, until it is, and by then we're pretty well hooked and the solution we're offered is more meds! I'm cynical about it...
You are smart and lucky! My neurologist lied to me, advising me to get onto a 300mg daily dose right after she'd' diagnosed me over a video screen during Covid. I've never been a big fan of meds so I asked her many questions and she assured me that the C/L was like a natural supplement and helped heal Parkinson's. No down sides.
I researched quite a bit online and could not find info about down sides. I didn't know where to look.
Unfortunately I found out too late about the sobering issues with the drug, but I'm working to get off of it.
I'm so glad you are working to get off it and so glad you found this info. There are some who find it and just are not able to accept that it might be true or correct. I'm not convinced in either direction. But I know I can't "untake" it so I wait and read and read and read and keep my mind as open as I can for as long as possible.
From what I understand, never starting it the best place to be. Then there may be actual "cures" available. Once the drug is started it causes irreversable damage to the brain. I'm ever the optamist so I hope getting off will help at the very least to avoid the side effects, or some of the side effects...
I came across an enlightening YouTube video featuring Dr. Jonathan Sackner-Bernstein (youtu.be/k703Shlgkhw?si=iuL..., prompting me to discontinue my use of LD medication.
I ceased taking Sinemet on November 15th, previously consuming 2 pills every six hours. Approximately six weeks before stopping, I had switched to the branded Sinemet due to issues with the generic version. I experienced severe right-sided mouth pain akin to TMJ (rated at 12 on a 10 scale) and facial swelling. It was revealed that the generic medication was ineffective due to my adverse reactions to the binders used.
Since discontinuing the medication, my down times are less severe than when I was on the drug. Additionally, a high B1 TTFD form of Thiamine regiment for the past six months , and has significantly alleviated my fatigue issues. I've crafted a program that suits me well.
In terms of Parkinson's therapies, be it drugs or devices, the focus within the "PD industry" is on augmenting dopamine or its effects. However, excess dopamine appears to induce toxicity, leading to neuron dysfunction and death, exacerbating the disease. Interestingly, dopamine levels inside neurons are already elevated in people with PD. Dr. Sackner-Bernstein proposes repurposing and testing a dopamine-reducing therapy in Phase 2 trials, having completed the pre-IND process. This drug, tested in three standard preclinical models, reversed pathology in all three.
While challenging established approaches in Parkinson's therapy may face resistance, the data speak for themselves. I'm am exploring the possibility of initiating a grassroots crowdfunding campaign to support Dr. Sackner-Bernstein's research. With the aim of collecting $1 to $10 donations, we're targeting $250,000 to encourage people to test the viability of his theory. Parkinson's affects many, and I believe this initiative could make a significant impact.
Thank you for your detailed account! Would you mind sharing which Super B complex you're taking so I can see the amount of each b vitamin in it? and sharing the brands of the other b vitamins that you're taking? I'm stretched right now between going down on my C/L and trying the B1 therapy. I may be dropping the C/L entirely, I've been on a very low dose (25mg/day) since August and barely taking it at alll since a bad experience this fall when I tried the mega B1 therapy, I think I overdosed on B1 and maybe C/L as well.
About six months ago, I undertook a B1 effort after watching you interview with Elliot Overton. In short, it has been very successful.
My pre-undertaking symptoms were:
1. Severe Fatigue
2. Severe right side TMJ style pain and swelling from my taking 8 generic levodopa tablets [4x2 every six hours/per day]. Note: this problem was later solved by changing to the branded LD – Sinemet. I believe that I was reacting t the binders used in the manufacturing of the generic LD, as the problem varied in scope based on which of the tree different manufacturers that the VA sent me.
3. Body aches, specifically across my shoulder blades.
4. Neck pain
5. Poor dexterity in both hands
6. Disturbed sleep
7. Increasing levels of freezing
8. Poor levels of concentration
Dosage size confusion was the biggest issue once, I began the B1 regiment. And frankly, I still am not sure what I am doing in this area. However, what I am currently taking appears to work. Whether there is a better mix would welcome any comments from the readers.
Currently I am taking the following daily dosage:
- At about 2am – one 100mg B1 sublingual tablet
- First thing in the morning:
o One 100mg TTFD-B1
o One 100mg B2 capsule
o One 400mg Magnesium capsule
o Three 375mg Vitamin C Gummies
o Three Kirkland Adult Vitamin Gummies
o One 1000mcg Vitamin B12
o One Super B-Complex
o Half tablet/100mg Blood Pressure Pill
o One Dulcolax
o One 50mcg D3
o Two Percogesic (optional)
- At noon:
o One 300MG Benfotiamine-B1 capsule
I had the Lonsdale’s ‘paradox reaction’ but expected it and pushed through it twice. During that period I was working on fine tuning my cocktail. However, the whole time I saw an improvement to my fatigue issues.
Most recently, I came across another enlightening YouTube video featuring Dr. Jonathan Sackner-Bernstein (youtu.be/k703Shlgkhw?si=iuL..., prompting me to discontinue my use of LD medication.
I ceased taking Sinemet on November 15th, previously consuming 2 pills every six hours.
Since discontinuing the medication, my down times are less severe than when I was on the drug. Additionally, the high B1 TTFD form of Thiamine regiment over the past six months, has significantly alleviated my fatigue issues and have a general better overall feeling. I still have some down days but nowhere at the level that I had after three hours of being on LD.
Based on Dr. Sackner-Bernstein that Parkinson's therapies, be it drugs or devices, the focus within the "PD industry" is on augmenting dopamine or its effects. However, excess dopamine appears to induce toxicity, leading to neuron dysfunction and death, exacerbating the disease. Interestingly, dopamine levels inside neurons are already elevated in people with PD. Dr. Sackner-Bernstein proposes repurposing and testing a dopamine-reducing therapy in Phase 2 trials, having completed the pre-IND process. This drug, tested in three standard preclinical models, reversed pathology in all three.
While challenging established approaches in Parkinson's therapy may face resistance, the data speak for themselves. I'm am exploring the possibility of initiating a grassroots crowdfunding campaign to support Dr. Sackner-Bernstein's research. With the aim of collecting $1 to $10 donations, we're targeting $250,000 to encourage people to test the viability of his theory. Parkinson's affects many, and I believe this initiative could make a significant impact.
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