I recently posted a question about reducing Sinemet doses do you see if there was anybody else out there who had done this successfully. Maybe I am an anomaly but I’ve been able to reduce from 6 pills a day to less than 2 over the past 10 years and some days I can manage on 1 pill. It’s taken a lot of hard work and many different therapies but I feel much better not on all those pills. Anyone else done this? I’m willing to share what I’ve done if interested. I haven’t even seen my neurologist in almost 5 years.
Reducing Sinemet : I recently posted a... - Cure Parkinson's
Reducing Sinemet
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Kt088
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Yes, similar story here. Interested in your story.
Of course we would like to hear what you have done to get there. A few years ago I went from 5 a day to 4 a day, but because of a very stressful time in my life last year, I'm on 7.
When I was diagnosed 10 years ago I was on six pills a day around the clock beginning at 6 am but then I began to realize I did not need the dose at 2 am so I eliminated that one, and then I dropped the dose at 10 pm. I figured I did not need to be “on” while I was sleeping, I needed the medication to work the most for me during the daytime hours as I was caring for my grandkids and my husband who has a traumatic brain injury. As more time passed, I eliminated the dose at 6 PM as I was usually in bed by then. I did this gradually. I began researching everything I could about how to reverse this disease, slow it down, make it more manageable etc. and then I started cutting out very small amounts of the Sinemet, 1/4 to 1/2 a pill every ten weeks, all the while adding into my regimen different supplements, vitamins, foods and exercises recommended for PWP’s. I am currently on 1 to 2 Sinemet pills a day. It has taken time to do this but it has been worth it in my case, I feel much better now not on so much Sinemet. It seems like the more of this medication I took, the more I would have to take. Sinemet is not a cure it’s just a bandaid of sorts. I take a wide variety of supplements, eat really organically healthy, exercise every day and play lots of brain games and do lots of research. Qigong has proven to be especially helpful and you can find the routines online. My rest tremor that presented itself at diagnosis is practically unnoticeable today. I sleep well for the most part and my balance, gait, and arm swing is much improved. Please be advised, check with your doctor before reducing your medication. The only reason I haven’t seen my doctor in almost 5 years is because all she wanted to do was have me take more and more pills and I just wasn’t going to do that. I am in the process of getting a new doctor. I’ve even questioned if I even have Parkinson’s because I’ve been able to reduce my meds the way I’ve done but a dat scan years ago confirmed it, so I don’t know why I’ve been able to but there are many stories online from others who have also been able to change the status of their condition. Hope this helps. Let me know if you have any questions.
in reply to Kt088
I suggest that you were way over medicated or you don't have PD...
Thank you much for all the information. You have done very well getting to where you are. You haven't given up! I struggle with the nutrition part of it. I'm not overweight because I exercise but I don't eat the right things, too many sweets & carbs. I'm ok with fruit, but not veggies.
If you have time, can you list your supplements? I take Emergen C, krill oil, D3 & Protandim.
I take tyrosine, an amino acid complex, selenium, B1, D3, cal/mag, lithium orotate, C0Q10, msm, creatine, turmeric with curcumin, iron, omega 3, alpha lipoic acid, vitamin E, B12, a probiotic. Periodically I get a B12 injection.
Gut health is critical, some studies have shown that Parkinson’s and gut health are connected. I use pysillum fiber daily also.
As for my diet, I eat as many dopamine increasing foods daily as I can such as, watermelon which is packed with B6, which can help boost dopamine levels, as well as, salmon, chicken, turkey, walnuts and almonds, cheese, apples, bananas, berries, papaya, green veggies, oatmeal, eggs, chocolate, coffee, yogurt, seaweed, avocado. I don’t eat anything processed or any sugar. Toxins in the diet are the enemy! Lots of water too. Absolutely no gluten, which the body senses as a toxin and can contribute to joint pain and brain fog. Smoothies are a great way to get multiple foods in your body at one time. I make all my foods and practically never eat out.
You are an inspiration. I'll try my best to follow your diet. Thanks again!
Hi, i am, a 2013 diagnosed PWPd, I have done similar looking to no great avail but occasionally there are gems! I found out that the homogenizing of milk does something to the fats and Lewy Bodies seem to have an affinity to Mis-folded proteins . I have pretty much gotten rid of the BRAIN FOG by switching to Organic WHOLE Milk, it's Pasteurized but no more than that. I also have an oat crackker with organic Tahinni for the selenium in the sesame seeds it is made from. This from a Nutritionist Researcher at the Honolulu Brain Clinic. I eat a half of an Avocado a day with Worcestershire Sauce for a different flavour and Hemp oil and 1 Tsp. of MCT oil or more. Look up MCT on YouTube and there is a doctor that treated her spouse who had Dementia, since deceased. Then start looking into the information in her videos, I am able to think MUCH more clearly and remember bits of knowledge that had faded from my mind. I also have fewer occurrences of forgetting a specific word just before I was about to say it... and I recently took up Pickle ball just to see how my balance is, better than before, in my mind, but I am having problems with what I have called MUSCLE MEMORY where I have the paddle on the right line to return the ball BUT not far enough from my body.... like a whoooopy cushion, whoosh, dang, missed again. BTW the hem[p oil deceased my leg CRAMPS substantially.
Was on Sinamet CR 5 times in 24 hrs in daylight until it was taken of the market,
now on a Generic version and it seems to be longer lasting.
Neuro visit next week so will likely change down.
More later.
forgot to post this above, her name is Doctor Newport
google.com/url?sa=t&rct=j&q...
and she has a blog too with videos
How much hemp oil do you take? I have severe toe cramping from clawing turning under. Any suggestions? Thank you.
I take 1 teaspoon a day. You could take up to 2 Tablespoons according to the label .
Also 1 Tsp of MCT oil, a refined Coconut oil, at the same time, good for the Brain FOG
My story is similar however I have not been diagnosed for as long as you, but I agree with different therapies and staying healthy and eating well (its easy to do that in Australia fortunately) im meant to be on 6 a day but can easily get by on 2 and a workout, ive been studying quigong thru youtube and can do it at home....just got to stop being lazy, i actuality overdosed last week on 1 day as i had a new job interview and i was so damn lethargic and my body felt like it just wanted to sleep, I didn't like it. I also present with no resting tremor if I'm at home with my wife and children anymore, add a margin of stress and my tremor says hello sometimes but otherwise it's not a big concern as it once was
What exercises of qi gong do you do, and what does it help?
Hi there sorry if I have misrepresented myself, I've been watching and studying quigong videos on YouTube but I haven't actually introduced it into my routine, but I found this video to start with,
hope this helps, the video and workout looks great
Tell me how you go , I'd love to hear 😁
Nice video. I do a similar Chi Gong workout from Jerry Alan Johnson.
May I ask how the chi gong has helped?
Fitness training, core strength, balance, flexibility, stress reduction. Overall symptom reduction and increased sense of well being. Mornings I typically wake up feeling shaky. I take Mucuna powder with a couple shots of grapefruit juice & drink some green tea and feel better. Then I do 1/2 hour Yi Jin Jing (Chi Gong) followed by 1/2 hour Jerry Alan Johnson’s Chi Gong Workout. Rather than writing about these I suggest you look them up on YouTube. At 5 PM I practice Tai Chi Chuan and Sword forms for about 1.5 hours. Northern Shaolin style taught by Sifu Scott Jensen. You can look him up on YouTube or Vimeo. Once again: core strength, flexibility, balance, and fitness training. Good luck and I hope this helps - John G
Aaron if you have problems getting Chi Gong workout DVD’s mailed to you in Australia, DM me on this forum. I’d be glad to help you out with that - JG
Hi There would be interested into what natural supplements you take. Thanks Jan
My husband has not taken the prescribed dosage of sinemet or ropinerol since shortly after being diagnosed. His first Doc. wanted to give more medicine every time we saw him the the one he has now is just about as bad. We do not tell him he is not taking the prescribed dose because he would insist he should. He was diagnosed over 8 years ago after open heart surgery. His tremor is less today than then and we attribute it to B1 and the fact that he stays busy on our land all the time . By all the time, I mean most days from daylight to sunset. We call him the energizer bunny because of this. We believe that many Parkinson's patients maybe over medicated.
Hi, I'm happy with what you've done with your health. I too am trying to reduce Sinemet but I think I have reached the limit because the tremor, although mild, reappears very often on the right. I was diagnosed two years ago and I am taking 0,50 mg. Sinemet h.8 - h.12 - h.16 (tot.150 mg.+25). I practice on alternate days, I take B, Mannitol, B, Cq10, Vinpocetine, Folic acid and Magnesium L-Threonate. Sometimes I have a feeling that the progression of the disease is coming forward and the temptation to increase Sinemet is strong.
You really need to keep a close watch on your jitters and what you ate and how long it takes for the shakes to start... ( PROTEIN is everywhere in our regular diet) , and, as well, you have to monitor the time from medication to when the jitters stop! if you medicate near your normal eating times you will have to wait till the protein has been through the stomach so that you Dopamine does NOT get second shrift and not properly/fully moved into the blood stream. Your gut has its own rhythm. If you can start medicating every day at the same time it is much easier to stay on track. I have an issue with stopping if I am i the middle of a project that i want to get done, like cutting the grass, and I will keep going and suddenly I'm an hour, or more, late.... My jitters are not severe so I pop an IR 25/100 Sinamet or a 1/2 tab if caught early enough... and then the CR version that takes 2 hours to peak..
My Neuro is all hepped up on gut health and if you suffer from constipation because the dopamine can be bound up and your body is not getting /utilizing all the drug you took that day.
I decided to lower my overnight dosage and the Neuro got me to take it as she explained just because you are not awake and expending energy doesn't mean your brain does not need less drug in the blood stream. Be cautious if you do. Keep complete records to support your impressions.
I've read all manner of best times to take Sinemet..."on an empty stomach, with meals, before eating, 1/2-1-2 hours after eating, etc." What works best for you?
I don't notice any issues right away as I have a 4 1/2 hr cycle in the day time and a bit longer overnight when I read, watch the tube and sleep for ~ 8 hours with 1 or 2 wakings. occasionally I have a lowering if I am cutting fire wood or something really strenuous like swimming a Km with no breaks. I just try to time it around the amount of protein I am having at that sitting, ie Whole milk. steak.
What does Mannitol help? And, are you only taking this Magnesium L-threonate and no other magnesium?
Mannitol is an artificial sweetener, it allows drugs to pass the brain bar and also seems to be able to prevent the excessive development of the alpha-synuclein protein, forming accumulations that damage the mitochondria and neurons, triggering the typical symptons of the pathology. I take 10 gr. of mannitol in the morning for breakfast dissolved in my oat milk. You will find many posts about mannitol on this site, many members use it. I only use magnesium L-Threonate, I take three 600mg. tablets with meals every day,
what is your sinemet reduction schedule? have you tried b1? thanks!
Hi pdkid, i'm taking 100mg of B1 per injection every 10 days. The Levodopa that I take is limited to 150mg for day: 50mg in the morning at 8am half an hour before breakfast, 50mg at 12am before lunch and 50mg at 16pm half an hour before a snack. I also take many supplements.
I would love to know how to reduce , good to read that it is possible . Currently I take 3x 125 sinemet . And 3x 125 B1 . This combi e works perfect . But I would love to reduce the sinemet .
I would love to hear how you did that!!!!!!
Lovely to hear your success. I take slow release madopor and now that i have B1 dose optimised i have reduced my madopor to one 125 tablet per morning. I found that the evening tablet made me too wired to sleep and now i not taking it I back to 8 hours good sleep anight and my brain feels much better. I feel i getting shut down and rest time. Dr Costantini said B1 could lead to reduction in pharma meds.
Keep up with all u doing it obviously working
Yes please
I have tried too many times but I keep going back to taking it. When I wake up regardless of how good or bad my quality of sleep was I feel great “almost” normal. Very little symptoms. I walk my dog, I do tai chi and work out before I take my first dose. Then the craziness starts, my symptoms go away or I’m dyskinetic. It’s so unpredictable. One thing for sure my symptoms are exacerbated at the end of each dose. So that makes me take it. One time I didn’t take it all day but I made sure I was just home and my symptoms were manageable until it was almost bedtime when my tremors got real bad. I just hate the thought of being totally controlled by medication....and my daughter who is a medical professional scolded me. She said stopping my meds that I’ve been taking daily for a while can put my body in to shock. We just need to keep trying to do what works best for us....praying for cure ♥️
I have had PD for at least seven years. C/L just nauseated me and caused my blood pressure to drop. That led to me passing out, resulting in major head injuries and nine days in Trauma ICU. I will NEVER take C/L (Sinemet) again. I take Selegiline twice daily and that is it. Yes, I have the tremor, but would rather suffer with that than the effects of the C/L.
A goofy Neuroligist prescribed working up in 1/2 tablet steps to 2 1/2 three times daily from the one tablet I was taking. I got up to two and developed a twisting of my head. I cut back to 1 x 3 and it improved . Had to cut to 1/2 x 3 to completly get rid of it. Thinking about quiting alltogether. My blood dopamine is pretty high. Not sure I even have Parkinsons, I have an adrenal nodule/tumor but blood test shows it not active. In late summer my blood pressue and heart rate went crazy for a couple months and then stabilized.
I hope every one is aware of this site,
parkinsonsmeasurement.org/t...
It will show you in a graph how the various drugs release and then decay in your body. There is a lot of data towards the bottom of the page, it is long!
Don't forget to Register and then you can fill in the drug(s) you are taking
I am so much better on vit B1 and magnesium, but I have not reduced my medication. I am on 6 x 12.5 siminet, 1x rasagiline and 1 rotigotine patch a day. Could you give me your opinion and tell me how you reduced your medication and what alternative things you take.
Hi, If you feel better you should let the health professionals who look after you know. They should be be happy and interested to know what helps you. It might help other patients.
I take 1-2 Sinemet per day and supplement with Mucuna. I’m 3 years past diagnosis. Originally was prescribed 6 Sinemet per day. I’m doing much better since then.
Hi, How did you reduce your sinemet? My dad was on 1 sinemet and 2 barlowe 40% extract every 3 hours, but right at 3 hours, he would start to freeze for 20-30 minutes before the new dose kicked in. So as of yesterday he added one more barlowe pill, so now on 1 sinemet and 3 barlowe pills every 3.5 hours. it has reduced his freezing greatly, but obviously his dyskinesias has increased a bit. im thinking he should probably take half a sinemet off one of his doses . . . he was diagnosed 12 years go so sinemet doesnt really work for him anymore, but he still uses it for carbidopa, though he has been slowly weaning off of sinemet.
I’m very interested!
Well done.
can you send your experience or what you attribute for ur success?
Yes, a friend slowly weaned off sinemet completely doing liquid sinemet and depending on fava beans and mucuna
hi, how did your friend do this? we are trying to wean my dad off sinemet, but worried about negative effects since its been 10 years of taking sinemet. we have managed to reduce from 2.5 tablets every 3 hours, down to 1 tablet supplemented with mucuna. what was their liquid sinemet and what was their reduction schedule? thanks!
I am very interested. I am trying not to increase my sinnemet. Can you please provide some more info, how can I reach you?
I just titrated off sinamet. It wasn’t too bad.
Pat used a liter bottle of water (distilled) and a tablet of ascorbic acid C and shook with her total Sinemet pills for the day. Let stand 5 minutes and shake well again. We did this every day and she would sip on it every so often when her symptoms worsened. Each few days , she was drinking less and less. It took probably 6 months or maybe 8 months until she was totally on just using fava beans and mucuna powder.
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