I recently started taking Mannitol based on anecdotal evidence presented in this forum. Thanks to the posters for creating awareness about this option. I am yet to see benefit after 10 days but I believe it takes a few months to give results.
Disclaimer: I am taking Mannitol as a supplement at my own risk and any information provided here is only informational.
Please check with your Pharmacist in terms of checking drug interactions.
Mannitol is an FDA approved food additive. Here’re the articles that are supportive of the supplement as a possible option for helping deal with Parkinson’s
Hi Sweetc05. I have been at it for about a month. Hard to tell because the doctor has changed my meds and also added Cymbalta for anxiety. I feel good overall with just some gait issues.
I take 4 tablespoons a day with coffee. The Israeli guy who swears by it says it took him several months to see great results.
Yes. I am also taking CL in the form of Rytary. It is a slow release version of CL.
Are you newly diagnosed? If YES, you need to work closely with your doctor to slowly titrate up to the right dose. I also take Requip XL and Amantadine.
8 years since diagnosis. Panicked at first, but slowly accepted slowly through time. I am glad to be alive.
You are most welcome. That's what we're here for. To support, encourage and motivate each other.
Most important thing to remember is to always keep hope, understand that this is a very slow progressive disease and you are likely to be at more risk due to other Health conditions rather than Parkinson's.
So, rather take the diagnosis as a sign to take great care of yourself and continue to enjoy life as it is given to you.
Pd, do you like Rytary? I started it a month or so ago and it just seems so inconsistent. Some days I'm good; other days my feet are clenched most uncomfortably. The doctor also had to add Gocovri because I was so twitchy, but I can't seem to lessen the Rytary to remedy that. I hate piling drug on top of drug, argh.
Godiv, Rytary and Nourianz work better together. I had very bad results with monotherapy. I now have a complicated drug cocktail. Doctor refused Gocovri because he said that the combination is very difficult to balance and I would most likely end up with more dyskinesia.
BTW, drug cocktails aren't so bad after all. For most well controlled PwPs, drug cocktails/aka combos are the only way.
Thanks so much for responding. Again LOL. I keep asking you questions! I'll ask about Nourianz. That's a good point about cocktails: I do need to look at it as a multi-layered approach, not "Oh, no, more meds!"
Godiv, Nourianz is a new drug from Japan. It has been used in Japan for a few years with good results. The drug had a very hard time getting approval and it took more than one vtry. It's target is different from the usual ones for most of the drugs out there for Parkinson's. Meaning that it's target is not dopamine. It's adenosine.
I am doing substantially better than before except for my speech. I think that will also resolve itself soon.
I’m glad it’s working well for you. And I’m sorry about your speech; perhaps physical therapy for that if it doesn’t resolve? The only thing I was a little confused about was Nourianz is listed for off times. The other one is listed for dyskinesia, but supposedly it helps a little bit with the off times. And I’m sure I didn’t really go too deep into it. I just skipped over the Internet real quick to look it up before I mentioned it to the doctor. But you’re using it for dyskinesia right? I’m sorry I keep asking you questions. If you want me to stop I will LOL.
Godiv, yes indeed it is very confusing. Off times manifests differently for different people. For some it is dystonia, from some it's dyskinesia and first some like me, it's both.
Amantadine, called Gocovri for the 24 hour long acting version actually acts differently by targeting dopamine. Too much dopamine produces dyskinesia or in my case, dystonic dyskinesia.
In general, PwP's are supposed to experience only one or the other condition during OFF PEAK & ON PEAK. Tremors that are identical to Parkinson's tremors can occur to people like me at BOTH ON PEAK & OFF PEAK. The doctor called it biphasic dyskinesia.
So, the condition that I have been diagnosed with is called biphasic dystonic dyskinesia!!!
I think I am the lucky one. The way this Parkinson's thing is going, I might even have a good shot at winning the lottery.
Oh my goodness! You definitely need to win the lottery. You could be like one of those people who is struck by lightning, a once in a lifetime occurrence that results in some kind of fabulous good luck. That’s interesting. I will have to look it over again; thank you for the info. It’s a little confusing. But wow, it makes sense to treat with a cocktail of medications with conditions like that. It’s quite an amazing balance to to get that correct. I have to re-read and think about this.
Godiv, please don't stop. It's absolutely not a bother. Keep it going. By engaging with me through these good questions, you and others keep my creative juices flowing. I might even finish my book faster😇
Oh good, thank you. Everyone on the forum is always so helpful, but I also appreciate the extra information as a mull this all over. Thank you— What is your book about? Fiction or nonfiction? We on the forum would like to know because we can say we knew you win before you became world famous. It’s not about vampires is it?😀 kidding
Pdpatient, just saw this while looking up Mannitol. Do you like Cymbalta for the anxiety? I have a hard time with any anti-depressant that's stimulating but I wasn't sure where Cymbalta is on the spectrum. I take Zoloft and I believe it has pooped out on me. And I thought I read that Cymbalta might help some PD motor symptoms ...? Thanks!
Has Cymbalta affected your sleep? My Nero is recommending it but the pharmacy warnings about side effects states severe sleeping problems and tremors” both of which I am battling.
Hi Mogul. Cymbalta is stimulating and I take it first thing in the morning. My mornings have actually been much better than before with Zoloft. My doctor told me never to take it after noon..
PDpatient , I am a mannitol fan. However, I am also on Sinemet so it is hard to know which is doing the trick. I’m definitely better and more stable. I’m also stage 1 Honeymoon. Mannitol is a good sweetener if nothing else. My shipments 🚚 have been delayed the past 2 months though- maybe it’s getting popular?
Amylindy, I learned the hard way. I ran out of Mannitol and after a couple of weeks, my tremors, dyskinesia and dystonia camera back with a vengeance.
I was able to return back to my default state after going back on Mannitol.
Mind you, we can never tell which component of the medication cocktail is responsible for the improvement. I personally think that the Mannitol just helps the other meds work better. I also take Levodopa in the form of Rytary, plus other meds.
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Mannitol and bacteria
