My experience with mannitol - Parkinson's Movement

Parkinson's Movement

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My experience with mannitol

1LittleWillow
1LittleWillow

FYI, I posted this on 2 PD Facebook groups yesterday:

I started taking mannitol 2 weeks ago. I purchased it in bulk from Amazon, and I add 1 tablespoon to a cup of hot organic decaf tea every night (I drink several different types and brands of tea). I've read that it's good to take it with coffee or tea that's caffeinated but haven't been doing that yet.

My sense of smell has been GONE for 2 years and was very disordered prior to that (problems began after a head injury in 2003). My sense of taste has also been extremely diminished as a result.

About 5 days ago my husband brought coffee into the bedroom in the morning while I was still asleep, and the smell of it woke me up.

Since then I've been smelling things off and on throughout the day. It's been so strange... I had almost forgotten how a lot of things smell. My 14 y.o. washed her hair, and when she walked near me in the kitchen, it smelled so good! We also made burgers on the grill for dinner, and I could actually taste them.

I don't know what to make of this. I keep thinking that maybe it's just psychosomatic, but because it happens so unexpectedly while I'm busy and not even thinking about it (or sleeping!), it doesn't seem like I could be imagining it. I thought that if I was going to see improvement of any sort from taking mannitol, it would take at least a few months.

The only negative side effect I've experienced so far is a slight bubbling/bloating feeling in my gut, but it's barely noticeable and goes away about an hour after I drink my tea. I've read that taking enzymes with the mannitol helps with that, so I'm probably going to try that soon.

FYI, I began having PD symptoms in 2015/2016 and was diagnosed in August of 2018. I'm 54 and 112 lbs. I take no Rx meds, just basic supplements and high-dose thiamine hcl since November of 2018 (1 gram/day, but I skip a day once a week).

UPDATE: LAST NIGHT

My husband bought a new brand of loose-leaf Earl Grey tea 3 weeks ago (about a week before I began taking mannitol). I opened the tin and put it right up to my nose and sniffed but couldn't smell anything at all. Last night (June 7) I decided to try again to see if I could smell it. I put my nose right up to the tin again and sniffed hard, not expecting to smell much of anything. The smell was so unbelievably strong that I started coughing and sneezed lol. I'm smelling so many things now that it's overwhelming after being "nose blind" for 2 years.

I also SLEPT last night without medical cannabis for the first time in nearly 2 years. Without THC, it takes me 4-5 hours to fall asleep, and I only sleep 4-5 hours before waking up again. Last night it took me less than an hour to fall asleep. I woke up briefly a few times but got a total of almost 8 hours.

30 Replies
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Thank you for posting this. Please keep us updated 😊

What brand do you order? Can you get it on Amazon?

I purchased it about 6 months ago from Amazon but didn't start taking it until 2 weeks ago. The brand I bought isn't currently available, but there are other brands of pure bulk mannitol on Amazon.

pdpatient
pdpatient in reply to Oceanflow

Ocean, please try:

Bulksupplements Mannitol Powder (1 Kilogram) smile.amazon.com/dp/B00QXQW...

Oceanflow
Oceanflow in reply to pdpatient

Thanks for that pdpatient

pdpatient
pdpatient in reply to Oceanflow

Hi Ocean, word of caution. though. Hang on a bit before you rush to buy. I just found out that this is made in China. Maybe it matters. Maybe it doesn't. I am going to look for other sources. I have been on it for two months and have seen no improvement.

I asked Bulksupplements, as to where it is manufactured. Here's the answer:

Jun 9, 2020, 10:29:40 AM PDT

Hello,

Thank you for your email. Please note that this product's Raw materials are sourced from China and we are a distributor of the product and can claim that it was "manufactured in the USA". Please reach out if you need additional assistance.

Thank you,

Nicole Q

Customer Service

Oceanflow
Oceanflow in reply to pdpatient

I order mine online but it comes from Israel and is pretty expensive.

pdpatient
pdpatient in reply to Oceanflow

Maybe you are getting the genuine stuff. How expensive? Would you make sharing the online link?

Despe
Despe in reply to pdpatient

amazon.com/NuSci-Pure-Manni...

This is what I get from Amazon. My husband's hyposmia is almost gone. He smells a lot of things he couldn't smell for years!

pdpatient
pdpatient in reply to Despe

Despe, this is also made in China!

Despe
Despe in reply to pdpatient

Oh no. What is the mannitol made in Israel? Thank you.

pdpatient
pdpatient in reply to Despe

Try:. mannitolbalance.com/product...

Despe
Despe in reply to pdpatient

Made in France? It will probably cost me an arm and a leg for postages. I believe the one I purchase was used in the clinical trial.

Despe
Despe in reply to pdpatient

I read the label and I didn't see anything suggesting it's made in China. How did you find out?

pdpatient
pdpatient in reply to Despe

One of the reviewers mentioned it. I then did extensive research into the manufacturer. Turns out that they are distributors and not manufacturers.

Their website says this:

This Mannitol pure powder in bulk complies with U.S. Pharmacopeia (USP) quality standards. There is not any additive or filler inside. Assayed > 99% with HPLC. It is new and fresh for use. There are 1 to 1.5 years shelf life available.

-------------------------

If it was indeed manufactured in the USA, they would not need third party lab verification.

Oceanflow
Oceanflow in reply to pdpatient

By the way , tried to find the product you asked me about:strangely the powder I got was from Israel and it’s not for sale anymore on Amazon!

pdpatient
pdpatient in reply to Oceanflow

mannitolbalance.com/product...

I finally found the one I bought:

biofinest.com/en/search?con...

LittleWillow, your experience is remarkable. I have been on it from two months and I have had no noticeable difference.

As with everything else we try, it seems to be so unique to each individual. It's very frustrating! For example, I've tried mucuna pruriens quite a few times now (hoping for tremor relief), but it makes no difference whatsoever in any of my symptoms.

how did you use mucuna? it has to be taken in different ways if you are using L/C meds or not.

I don't take any Rx meds yet. I'm still experimenting with mucuna, but still no positive results.

sorry for asking, but can you tell me what "Rx" stand for?

Rx = prescription

ok Thank you :)

Mucuna is effective (when effective) a long term. Rigidity and slow movements are generally easier to address while tremor take more time and generally requires ashwagandha to be effective.

Have you ever spoken with an Ayurveda Medicine expert?

Since you are still out of Rx meds, you may be interest to this links:

healthunlocked.com/parkinso...

healthunlocked.com/parkinso...

hope they may help you

rgds

Thanks for the information! :)

Thanks for your good info. It's so encouraging!

Very happy for you! Hope that your other symptoms go away too. It did not work for my mother - gave it to her for almost a year. But then I ordered from bulk supplements. So tempted to order from the site you posted.

I hesitated for quite some time before trying mannitol because it seems like many of the people who try it get little to no benefit. I was also concerned because I have pretty severe reactions to other sweeteners (e.g. sucralose, sorbitol, acesulfame k, etc.); however, I'm not having any problems so far. I'm beyond happy to have most of my sense of smell (and taste) back. If I experience any other improvements, I'll give another update. FYI, I also responded really well to thiamine hcl (vitamin B1).

How are you doing and what is your dosage?

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