Retired 14 years ago. 2024 was a rough year. 28 radiation treatments to cure prostate cancer (all clear in July) total knee replacement Sept 10, mild concussion Nov. Feb diag for Parkinson.
Severe nausea. Lost 30 lbs. Meds making... - Cure Parkinson's
Severe nausea. Lost 30 lbs. Meds making brain fog. Recommendation? Retired male. Thinking about stopping meds.
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Husband2025
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with regard to going off medication it is important to taper off slowly because just stopping completely is dangerous
" Do not stop taking levodopa and carbidopa without talking to your doctor. If you suddenly stop taking levodopa and carbidopa, you could develop a serious syndrome that causes fever, rigid muscles, unusual body movements, and confusion"
I agree completely. Slowly reducing over weeks or months is safest and you might then find a sweet spot on the way down where you feel a bit better
try keto
The PD diagnosis was Fev 2024? What PD meds are you taking? Are you taking meds for the cancer or knee replacement or concussion? When did the weight loss begin? Yes, 2024 was indeed a TERRIBLE year. Difficult series of events and any one could affect weight and brain fog. Plus the unfortunate medication counteractions like antibiotics.
I had to persevere with extreme nausea after starting Sinemet. The key is to start with small doses and work up to full doses in time. It took me almost 6 months to feel less nauseous after a dose. Taking it with carbs also helped
Need to know more about you. Are you working with a neurologist or movement disorder specialist? Why do you think the medication should be stopped? What are your symptoms and dosage of CL? Other meds? How did you get the concussion ?
PD meds can cause many issues especially if the dose is too high for your needs, and you have been newly diagnosed. it's possible you could be hijacking your existing working Dopa neurons with excess dopamine. You may not need the amount they are prescribing. you could taper off slowly and while doing so take Mucuna from NOW which supplies a much smaller dose of L-dopa and take with Quercetin which is a comt inhibitor helping it to cross the Blood Brain Barrier. there are Less side effects with the Mucuna seed and more benefits as it's also neuroprotective and improves immunity. Can get both products on Amazon or another store. Maybe you can taper off entirely the c/l and see if you can manage well enough with just Mucuna/Quercetin. I tapered off Sinemet and Rytary and now exclusively on Mucuna/Quercetin. Feel so much better. Thinking clearly. No constipation. I'm also fairly newly diagnosed (3yrs). Exercise, cardio +, as soon as you are able to, like a Mad Man!
Can I ask please your regimen and dosage for mucuna and quercetin? You titrated slowly off C/L ....about how long? How lovely to be feeling so much better! Did you have the help of an understanding neurologist or undertake this on your own? Thank you.
I take NOW Mucuna 1 capsule in the morning + 1 quercetin. I take as needed throughout the day this combo. Probably no more than 3-4 capsules a day for my current needs. Keep in mind, I am female, 67 years old and my metabolism will be different than yours. I recommend that you find your own optimum dosage that meets your needs. There is a Mucuna group on Facebook called Mucuna Puriens Parkinson's. Lots of information there and documents on dosages and conversion from c/l to Macuna. I highly recommend. Plus Dr. Maldonado's books on Mucuna which you can find on Amazon or another book seller. He is a neurologist from Spain and highly recommends for newly diagnosed Mucuna to start with. He also recommends to do under medical supervision. I do have a neurologist who is quite supportive of my tapering off and using Mucuna. He also felt that I have been on too much Levodopa. He's cheering me on!
I had a skin biopsy to diagnosis Parkinson's. They took 3 punches and sent to a lab CND Life Science - cervical, thigh and ankle. It came back positive for misfolding of alpha syn in the thigh and ankle 'only'. Not the cervical area, it was normal. Positive for small fiber neuropathy. I've had symptoms of neuropathy before symptoms of PD. But, it's possible all of my symptoms are related to neuropathy and not PD - there is a lot of overlap between the two. The theory in Parkinson's, from what I've been reading, is that the misfolding spreads from distal to proximal. My personal theory is that since there is no sign of the misfolding in my cervical area it possibly has not spread to my brain, yet. I feel I have an opportunity to keep it at bay and either stop or hold off the progression. I'm treating the small fiber neuropathy as well with red light therapy, PEMF, and I take Gabapention (300 mg) for the pain.
Fast walking, boxing, cardio, stretching, eating healthier, some supplements and taking minuscule amounts of Mucuna. That's my cocktail for beating Parkinson's. Good Luck to you!
Thank you for your thorough response. Much much appreciated. You've really done well for yourself and grand your neurologist is on board too, cheering you on. I see mine in April and will broach the topic. I only wish they were proactive in these alternatives....no discussion whatsoever. For B1 therapy either. For the novitiate hard to know which direction to pursue. Am thankful for alternatives as have not been able to tolerate more Levo.
P.s, I wasn't even aware there were options for determining PD by skin biopsy. That seems to be a well kept secret.
Thanks BeedieBird!
P.S. I did taper off by myself as I was out of state and my neurologist couldn't treat me due to license restrictions. I had made 3 visits to ER with severe symptoms the doctors thought was a progression of PD. I didn't believe it. So I tapered off on my own. This is my 2nd time to taper off a Levodopa drug that was causing me severe side effects. My belief is I have too many working dopa neurons and I've been flooding them with dopamine they can't use. This can have serious toxic effects on those healthy neurons. So yes, I did it on my own after doing tons of research.
Sorry, we cannot effectively help you with the minimal description. At the very least you need to tell us your Parkinson's medication regimen. The more details you give, the better we can help.
