Mannitol: I have been reading posts... - Parkinson's Movement

Parkinson's Movement
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Mannitol

Icequeen10
Icequeen10

I have been reading posts from a year ago on personal/subjective experiences taking Mannitol.....I would like to hear if you still use Mannitol and benefits, also, if you stopped ,. Why you stopped,? I have been taking 1 tsp am and 1 tsp in evening and although I don't have any clear positive results., My attitude has improved...not as. Cranky etc. I am not finding any contraindications. Except might have to cut my dose in half,,,,,cuz of not enough constipation¡!!¡

32 Replies
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I also would like feedback on user experience.

I only take Mannitol when needed. This might be 2-3 times a week about one tablespoon. I do not take it if not needed. My diet includes prunes and prune juice. Not sure this is good strategy for all.

Hidden
Hidden

Icequeen10,

If you take your full daily dose and dissolve it in a 500ml bottle of water and sip throughout the day, you may be able to stay at your current dose or possibly higher using this "home made controlled release" method, because your body never has to deal with so much mannitol at one time! Failing that, adding alpha-galactosidase, as found in the Syncolein mannitol product should also help.

Art

Icequeen10
Icequeen10
in reply to Hidden

Thanks for the helpful information.i will start tomorrow!

park_bear
park_bear
in reply to Hidden

Alpha-galactosidase is also available separately as "Beano".

I did not know that is what BEANO is¡Thanks!

Hidden
Hidden
in reply to Icequeen10

Yes, the alpha galactosidase has helped some people with using mannitol and is the same as Beano, but if you buy the house brand of alpha galactosidase at Walmart, it is roughly half the price of Beano and twice as strong per pill.

walmart.com/ip/Equate-Gas-R...

Compared to :

walmart.com/ip/Gas-Relief-B...

You can also buy it in bulk powder form and add it to your mannitol in the proper proportion to make a Syncolein like product.

Art

ParlePark
ParlePark
in reply to Hidden

Art, do you know what that proportion might be?

Hidden
Hidden
in reply to ParlePark

I thought Syncolein used to have that information on their website, but I just checked and it is not there. Perhaps they removed it, but in any case you should be able to determine the correct ratio by taking a separate alpha golactosidase supplement along with your mannitol until you get the benefit of no gas. That dose will be the correct dose per serving of mannitol. For the purpose of this experiment, it may be easier if you experiment with the Beano product over the Walmart product because Beano comes in a smaller amount per pill and should make adjusting the dose precisely a little easier.

As an example if it takes you two pills to achieve your desired effect, then it will take 300 GALU of alpha galactosidase per serving of mannitol. If it takes you three pills to achieve the effect then it will take 450 GALU per mannitol serving.

Lastly, it may be relatively easy and less expensive to just use the Walmart house brand once you find the correct dose. Not all of the bulk powder suppliers carry alpha-galactosidase, so I am not sure on availability of the bulk powder.

Art

ParlePark
ParlePark
in reply to Hidden

Thanks Art. Makes sense.

Rhyothemis
Rhyothemis
in reply to Hidden

I was wondering about that type of dosing vs. a bolus (big glob at once). My question is, would a bolus cause plasma levels to spike and would that get more mannitol into the brain? It seems as though with street drugs, a lot of effort is put into delivery methods that will cause a spike in whatever it is with the goal of getting as much into the CNS as possible. OTOH, your reasoning on the low, continuous dosing also makes sense.

Hidden
Hidden
in reply to Rhyothemis

Taking the full daily dose all at once has resulted in excessive gas in most people. Diluting the daily dose in a bottle of water and sipping throughout the day will likely reduce the gas output and keep a steadier state of mannitol in your system and likely give a more steady state of butyrate production which PWPs can definitely use as opposed to a sudden spike which will have a much shorter effect. The addition of alpha galactosidase should eliminate any remaining gas.

Art

I put a tbsp in my coffee every morning. I have been doing it for a year.

I feel it has had a positive effect on my overall being, i.e, thinking clearer, symptoms lessened. I have had no negative side effects.

re constipation, i also have been taking a probiotic - a glass of Kevita most every day for the last few months and have become relatively normal - a vast improvement from before. Tastes good too.

I have been ingesting two teaspoons of Mannitol daily for 3 1/2 years and have no adverse effects. I do not take any Parkinson's medications as I found all of them had little positive affects but significant side effects. I was diagnosed 8 1/2 years ago and my Parkinson's symptoms have been pretty much stable and some have even improved such as the stiffness and slowness of movement. July 2018 I added the high dose B1 protocol, I noticed some very subtle effects after a couple of months. Recently I've added licorice root as an MOA inhibitor. I feel I'm doing pretty well but I continue to have a persistent tremor of the right hand mostly with a mild tremor of the left but even the tremor is better than what it was.

I am more disabled from chronic low back pain with severe stenosis causing severe sciatica. Unfortunately the B1, Mannitol and Licorice do little to help the pain.

Hidden
Hidden
in reply to Shaky-hand

Shaky-hand,

Some people have found benefit for back pain with topical mag oil application.

Art

Shaky-hand
Shaky-hand
in reply to Hidden

Thank you Art for your reply. Topical magnesium oil does help with pain relief but only for 30 - 45 minutes. It's the sciatica that is worse from severe stenosis.

Hidden
Hidden
in reply to Shaky-hand

Okay, that is the shortest length of effect I have heard of for mag oil, but sciatica can be tough!. I am going to chat you a message for something else that may last longer for your sciatica. One other that I have found helpful for sciatica is the higher quality soft ice packs. Icing is a very potent anti inflammatory. Two ice packs that I can use sequentially is best for me. A combination of icing and mag oil should be very potent for getting the sciatica back under control!

Art

Bode22
Bode22
in reply to Hidden

Is sciatica part of pd symptoms?

Hidden
Hidden
in reply to Bode22

I've never heard that said, but spinal stenosis does seem to be common with PD and back pain in general as well as DDD, so I can see how sciatica could easily be considered as a symptom of PD. Several forum members have reported sciatica, but given that PWPs often are senior citizens and sciatica seems to become more prominent with age, I'm not sure how you could be certain that it is or isn't??? Either way, if you have it, you have to figure out a way to deal with it in order to improve your quality of life regardless of if it is related to the PD or not.

Art

Bode22
Bode22
in reply to Hidden

Thanks

Bode22

Astra7
Astra7
in reply to Shaky-hand

Always good to hear of someone doing well without meds after many years. Very uplifting!

I've found that CBD oil - both oral and topical (base of spine) - is very helpful for my sciatica and plantar fasciitis. If I take it at night, when I get up I can walk without pain. It's expensive, so I'm looking into trying TENS.

Thanks for reporting your experience with mannitol.

Thank you Rhyothemis,

I have tried numerous CBD brands and formulas without much success and even tried THC and CBD brands but did not like how the THC made me feel. I know CBD helps a lot of people and wished it did help me.

Elya7
Elya7
in reply to Shaky-hand

Hi, many thanks for sharing. Re Licorice could you provide some guidance on where you order it. There are many forms available: powder, tablets. Thanks again

Have a try at using lidocaine pain patches on your back.. you can put on more than one. It is best if you have help

I tape mine down with paper tape.

No I have not tried Lidocaine patches. My doctor refused to prescribe. I know you can buy weaker ones OTC. Thank you, I will give them a try. I am presently trying DMSO but so far not much success. Trying hard not to give up hope, some days it is just all too much.

Hikoi
Hikoi
in reply to Shaky-hand

Levadopa took my lower back pain away. I think dopamine agonist drugs helped too. It returned when I lowered my agonist.

Parsa
Parsa
in reply to Shaky-hand

It is great to hear that your condition is stable for that long. May I ask if you do any exercise or anything else ?

Still taking 1 tsp each morning with coffee. I think it helps my mental state, but can cause a bit of wind. Didn’t find beano helpful at all unfortunately.

Here I am replying to my own post. I realized several days ago that my sense if taste/smell is back! I was eating some raspberries and thinking to myself,. " These taste like summer". It's for sure the Mannitol!

Good for you:)))

My Dad using Mannitol Balance as well. We see improvement in his motor skills and he's sleeping a little better too!

Are you on HDT HCL concurrent w mannitol? I’m trying to decipher-> some folks seem to (now) credit HDT for regaining the their sense of smell. I always figured it was the Mannitol for me, but looking back, I was overlapping supplementation w HDT HCL; so, not a very well-controlled self-experiment! I use both, religiously, to this day.

ParlePark
ParlePark
in reply to AmyLindy

I use both religiously as well. Sense of smell has improved and have asked same question. Smell not great but feel it has improved as well as arm swing. MDS noticed as well recently. Tremors however have increased.

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