I’m not a medical person but it seems to me after reading round the actions of HDT and Mannitol that in some respects their beneficial physiological actions are similar. (Please don’t ask me to elaborate! I’ve just got that general impression.) My question- Does anyone take both and have their dosage of one needed to be reduced when adding the other? I’ve done very well on B1 and am just adding Mannitol because ... erm ... I’m greedy for even more improvement?!!
Does anyone take B1 and Mannitol? - Cure Parkinson's
Nothing wrong with pursuing more improvement!
How many milligrams Of B -1 do you take?
Roughly 50mg of sublingual per day
Where do you buy the sublingual please? The supplier I bought from has been out of stock for months.
These each have some in stock...
Thanks Dap! Did you look at the prices? The ubuy link is 24 Euros for 2 bottles which then more than doubles to 55 Euros with postage and customs. Ouch!
I haven’t used either website. The ones I use were out of stock. Because of the problem, I keep eighteen months supply in reserve. Hopefully supplements will become more available soon. I’m assuming they might have been affected by Covid...?
Which companies did you use, if you don't mind telling me?
Health monthly and evitamins.
Thanks, that's who I was using. Health Monthly went into liquidation having taken customer's money but not fulfilling the orders.
Gosh I didn’t know that!
If you've got five minutes, look up Health Monthly on TrustPilot - there are some very angry customers on there. I felt angry for them, as could so easily have been caught myself.
Oh gosh! Yes, I could have lost out too! Thanks for the information about them. Any luck with the other leads I found on google? They might not deliver here of course. Or might be ridiculously expensive...
healthyplanetshopping.com will deliver to U.K. for about £20. It depends how much you value the product and/or how desperate you are!
I've decided I'm not that desperate! When I bought from evitamins a year ago, 2 pots plus postage came to £12.41. healthyplanetshopping will only let me buy 1 pot so it's not worth the hit on the postage. The Italian supplier was £47 for 2 pots. Far too much! Thanks for your help!
How do you know how much Mannitol to take?
I read it should be a total of one tablespoonful in tea or coffee drinks a day. I started on half a teaspoonful
Do you get gas from b1? I take 1000mg and am constipated. I think I read both b1 and mannitol cause gas. What relieves it?
Dap what's your daily medicine along with B1?
May I ask. How long you been dx for Parkinsons. My mom seems to have had it probably for 15 years. Working on B1 HCL but not sure if I know it is working.
She has PD Dementia.
Lately her blood pressure has been up and she's not drinking lots of water. (Ughh)
so I don't know if I need to stop the B1 she's only at 1 G / day right now.
I was diagnosed eleven years ago. I’m not sure what to suggest. For me, when I started taking B1, my rigidity reduced which could be seen by friends because my face was more expressive and I could smile right up to my eyes, and I had more energy. You need to identify your mothers symptoms and monitor them. Does she have movement problems as well as the dementia?
Thanks for replying.. Yes I believe she has Lewy Bodies Dementia along motor problems/tremor/anxiety/dystonia in the feet mostly toes.
#1 Took her to Neurologist for the first treatment for Botox shots for the toes and 1 week later no luck.
#2 Need to get mom's anxiety in check see #1 . Her pain is her main issue and makes matters anxiety worse.
#3, Not drinking enough Water 💧
Be watchful of your potassium (and sodium) level - both may tend to push your potassium level down over time. It might be a good idea to get bloodwork before the start and repeat in a few months, and proactively consider supplementing potassium citrate if you're running low.
I was surprised by your reply, so I searched google to find the connection between B1 and potassium and sodium. I found a reference to thiamine deficiency and reduced potassium and increased sodium, but I’m not taking thiamine because I’m deficient in it, and am not deficient in it so don’t see how it may apply. I’m willing to be educated...
Mannitol is osmotic diuretic so no explanation should be needed. As for thiamine, see the below video around the 6:40 mark for a quick explanation, and I've personally noticed the same with a high dose. With your <100mg sublingual B1, I doubt you'd need to worry but I was posting as a caution for others using mannitol in conjunction as well.
Thanks for the video. Interesting. I take magnesium but perhaps an extra banana might be in order!
Is potassium citrate better than potassium chloride ?
No, not better for strictly raising K level but the citrate form has the benefit of alkalinizing the urine and binding oxalates/preventing kidney stones. You can use either when eating potassium-rich foods don't help address the low K.
Hi...I've been on both for 2 + years, 1 tsp mannitol, currently 375 total B1. B1 helps, but so far not mannitol. I keep that one because of its great press.
Good morningI have been using mannitol AND B1 for about 8 months. I feel great. But I do not know if the huge improvements come from the thiamin or the mannitol. Unfortunately the clinicrowd site does not help with the answer. The only info I got from an interview with Pr Segal is that the mannitol process takes time: I have plenty of that!!
So I take both and enjoy life.
Starting Mannitol has coincided with my sleep becoming interrupted. It may not be the Mannitol but I’m suspecting it is because I feel a high when I take a herb tea with a teaspoon of Mannitol in it. So I’m giving it a break. I was sleeping so well and can’t risk losing that! Thank you each for your replies.
I have taken mannitol as syncolein for 4+ years and B1 for 3+ years. I only take approx200mg B1 5 day a week ( weekends off stops od). I feel great am able to live fairly normal life. I found mannitol great for mood lifting.
I wonder if what you find to be 'mood lifting' I find as too stimulating...
I was very apathetic before starting mannitol a real 'if i died least i get it over'. Know what u mean about stimulated- i refuse eve madopar as i find i can be so ultra awake at night- could write a book feeling. ( not sure if madopar but no eve meds n i sleep like a baby much to neuro's disbelif!)
My sleep had been like a baby. (My last 50 mg madopar at 5pm) I wasn’t happy to find I was waking every hour through the night, after just a teaspoon of mannitol late morning.
My husband has been taking B1 (now 750mg per day) and mannitol 1 tbs in coffee in the morning for a couple of years now. Also hardys daily essential nutrients which helped him a lot plus a whole lot of other things .
Also currently Red light helmet, apolloneuro stress device, bright light therapy, fish oil, ubiquinol, krill oil , help seed oil, pantothine, lithium orotate low dose, glutathione, citicoline, uridine, inositol, b2, melatonin, mucuna and restore gold. Digestive enzymes. Bottled water with high Silica.
This week he got off the last minute trace of the sertraline, and started rhodiola rosea.
He takes 4 Madopar 62.5 and 1/4 Kemadrin morning and night. And the tiniest little trace of mirtazapine which is going out also in a few weeks time if all goes well!
He is doing ok at the moment despite us heading into winter which is usually when he crashes and his anxiety is fairly under control. He is still struggling with the use of his right hand which I believe is due to lack of using it and sitting too long with hunched up shoulders at the computer but I can not get him to do any therapy on it. Yet!
I’m taking both. B-1 first by a couple of months. I added Mannitol about 3 weeks ago. I right away noticed an improvement in my voice which had been deteriorating quite a bit. As a person who loves to sing, that was causing me grief . The B-1 also gave immediate improvement in posture and gait as well as mood. I’m also sleeping better.
Since my first Pfizer shot last month, my balance has gone downhill and I am more fatigued than previously. Add to that a change of brand in my meds and I’m currently struggling .
Curiously the positive changes seem to be still mostly intact, if that makes any sense. If I could get the balance and fatigue fixed, I’d be in pretty good shape 😀
Let me know how that goes. I'm considering starting Mannitol to thanks
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