My husband started Mannitol about five months ago. He has had PD since 2006, and the past 2 years has suspected dementia. He has stiffness, postural instability, gait issues, but no tremor. As a result of Mannitol, he no longer needs his Dopamine meds.
Here is his current daily regime:
20mg numenda
150mg Effexor
1 probiotic
1 tsp mannitol (bulksupplements) in Diet Coke
1 mag citrate (bedtime)
Prior to Mannitol he was taking:
4 mg Neupro patch
3 Rytary 23.75-95
20 mg numenda
150 mg Effexor
1 cap miralax
1 probiotic
1g thiamine
1 mag citrate (bedtime)
Getting the dosing right has been very challenging over the past months as he goes into a psychotic state with slight changes to his dopamine levels. The whole process was gradual, where after 2 months, he clearly needed only half a Neupro patch for awhile and then he only needed one daily Rytary for a few weeks. And the only way to know he had too much was by his anxiety levels and hallucinations. (I wouldn’t recommend going through this alone.) The breakthrough came at the first of this year when I realized that even 1 Rytary in a week was causing anxiety and hallucinations and he stopped it completely. He is now functioning as well as he did last summer when he was on all the meds. Stopping the meds prior to mannitol BTW would have left him completely immobile, stiff and stuttering.
There are very clear improvements in a couple of areas:
He’s having regular bowel movements for the first time in years
He can sleep a solid 6 hours without waking at all. This is huge as he often would wake every hour through the night.
Both eyes stay open now when he wants them to. One eye was closing all the time prior to mannitol.
He is awake and energetic more hours of the day.
His mood is better.
His balance is improved, but thiamine also did that for him.
He is trying to learn how to use things again like cell phones and remote controls. He made toast for himself the other day! It’s not all sticking yet, but he can operate his lift chair by himself again, sometimes.
I have all my fingers and toes crossed that he will see more improvement over time, especially with his speech (he keeps flipping back to his first language and I can’t get him to speak English sometimes) and cognitive function (exec function, spatial awareness, etc).
We’re in a much better place with at least a glimmer of hope again, thanks to everyone on this site who shared their experiences and especially Gwendolinej who recommend mannitol for him specifically!
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LeharLover62
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Excellent information, LeharLover. I would just have one suggestion for you. Biofinest Mannitol is definitely better than anything else in the USA market.
May I ask you as to when you purchased the bulksupplements Mannitol? Reason that I ask is that they completely ran out of their Mannitol inventory and were not able to fill orders for over 6 months. I believe that they just got in a new batch from China. I took their product for several months with no response and when I switched to Biofinest, the results were dramatic and overnight.
I wish your husband all the best for continued improvement.
Thanks for the warning! He is almost out of the Bulksupplements, and I checked, we ordered it almost a year ago. Maybe we’ll try the Biofinest as well.
Less constipation, enormous feeling of well being and much less anxiety. Little or no effect on tremors. However, I took a brief holiday from Mannitol and was shocked by the intensity of the amplification of my tremor that was controlled by other meds. Either I missed noticing the tremor benefits while taking Mannitol or the withdrawal symptoms are worse.
Biofinest Mannitol is more crystalline and dense than bulksupplements and a tad sweeter.
@grandmabug, as I said elsewhere in this discussion, 4 to 5 tablespoons per day. In coffee, tea or yogurt. The rationale for the choice of dosage is explained in my reply to @rebtar below.
The dose suggested with the research in Israel and checked by our pharmacist suggested 1tbs a day in coffee. It is what my husband takes. Some say 1ts.works. It can upset the stomach badly, so less is better. In fact, the research suggested that more than the 1tbs. is detrimental. Have a look at the Syncolein site. The video on the site is also very interesting. It shows how the research started and progressed. A member put it on this site initially and I went from there...a life saver for us. Good luck.
@rebtar, good question. I am diabetic and therefore I consulted with my care team before deciding to try my mannitol. I presented my case that it's a good sugar substitute for diabetics. We referred to the FDA statement regarding mannitol and the rather weak warning that consumption exceeding 20 grams could have a laxative effect. We agreed that I could take the soft maximum of 20 grams approximately and if I did experience a laxative effect, it would be a good thing because I am constantly constipated. 😂
Now, there is 4.2 grams of sugar roughly in a tablespoon. Mannitol has roughly the same physical properties as sugar and therefore it is safe to say that using the same amounts of equivalency, 4.2 X 5 tablespoons is approximately 20 grams.
Now, it's not settled, mainstream research whether mannitol is beneficial to Parkinson's and at what dosages. So, the amount that I have settled on as described above is based simply a consensus agreement between me and my care team. The objective was to find the max dose that my care team could "document" under the limitations of medical practice. After all, they were looking at this as an OTC supplement that I was "voluntarily taking on my own volition."
I remember reading somewhere that with mannitol, more isn’t necessarily better. It might have been Clinicrowd, but I’m not sure. Do you have their dosage recommendation? I had it at one time, but can’t find it and they don’t seem to be answering online inquiries.
Sure. Here you go. More may or may not be better, but after all this is a food supplement and the only "harm" is the likelihood of a laxative effect. That is the case for all polyols. I use it as a sugar substitute and it has worked great so far.
The only issue I have observed is the unexpected worsening of my tremors where I suddenly stopped mannitol which were otherwise controlled. However, I didn't notice a corresponding decrease in my tremors when I started taking mannitol. I found this one thing strange.
@rebtar, the "more is probably not better" comment was from Gwendolyn who was quoting her doctor in Australia.
You know how the doctors in the USA are 🙄. I am surprised that they even entertained my question. Their comments were more along the lines of "it appears to be a better option than sugar free or sweet and low"
My initial information came from the Syncolein site. It was put on his site by a member. We went from there. It gives you the history of the research and the dose and as you say, 1 tbs. daily in coffee is the recommended dose.
I was going to give Mannitol another try. Last time when I was on it for a while I got it from the bulk supplements. It never did anything for me except give me some gas.
I went on the biofinest site and they are out at the moment. They say they're going to have the product soon. So I'm going to have to wait till they are able to get it in.
I am really hoping that this time it's going to work.
I bought some other bulk items and I was not happy with the product from bulk supplements.
Hi @parkie13, if you haven't already noticed, biofinest is manufactured in the USA and shipped from Oregon. The difference in quality is quite striking. The biofinest product is crystalline and heavier than the one from bulksupplements and therefore it is about half the volume.
I wrote to bulksupplements last year and asked where their mannitol was manufactured. They told me that the product was sourced from China and because it came in bulk and was subject to local lab testing and repackaged into the standard sizes that they sell, they had the right to claim that it was "USA sourced".
BTW, the "gassy" issue still remains a bother and doesn't go away. 😊
All it did was give me gas when I tried taking a single dose in the morning. I am trying again dividing the dose and taking it 3 times a day. One gram at a time is okay so far. Plan on working my way up to 2.5 g per dose.
Very good to hear of your and your husband's success with mannitol! Always great to hear a great success story!Please uncross those fingers and toes though or you may need some mag oil to get the cramps out!!! 😁😁😁
Mannitol is a diuretic so he is def going to have more action within his waste (endocrine system) as for the rest of the symptoms, sugar is obviously a stimulant so his body is getting a hit of basically concentrated sugar.
Best wishes for your hubby though, he sounds quite advanced in his PD so its nice to get a boost and a smile in somewhere extra
Very interesting. It would be good to know how many benefit from this and other supplements and also those who have seen no benefit. I have a survey on this and the more common medications/supplements at crowdwisdomsurveys.com. First 50 people to rate at least supplement or medication will be entered into a draw to win £100 for themselves, or if they prefer, the charity of their choice.
I take one heaping teaspoon of mannitol in my morning green tea and find it helps with bowel movements. I'm not aware of any other effects (of course, that one would be enough!) but have not tried to stop it, so don't know what ugly demons might rear their heads if I did. I'm going to try Biofinest next time I order.
Thank you! In the past melatonin has given him leg cramps/spasms all night, so it did not help his sleep. We haven’t tried the sublingual version though.
I’ve not heard of Lithium Ornate, I’ll look into it.
I enjoyed hearing your experience! I also have a lot of trouble when I have any dosing changes. When I went off Mirapex I ended up with dopamine agonist withdrawal syndrome and have been battling that for the second time since my PD diagnosis in 2011. First time it took me two years to get my mind and body back, this last time I’m still working on it and I’m going on three years. I’ve been on Rytary but Every time they change my dose I also get psychotic as well as extremely emotional
I think because of the extended release of Rytary, it builds up more through the day and can cause ‘trouble’. He always had to stop taking it in the afternoon because it would stack up and cause a ‘dopamine rush’ otherwise.
By any chance, has your husband had his ferritin levels checked? I'm wondering if degree of response to mannitol could be correlated to ferritin levels.
Serum iron is all the iron, ferritin is a particular form that is used to indicate stored iron levels. Low ferritin indicates anemia so I expect that your husband's ferritin was probably low.
Actually, I'm not sure if your husband's ferritin would have been low or not - it depends on what was exactly was happening to the iron. I definitely need to read & think more on this.
He took iron supplements for a few weeks to recover. The working theory was that the anemia was cause by a colon polyp, as it stopped after the polyp was removed, but we were never sure.
Thank you for sharing this uplifting news! I have YOPD in the early stage. I started Mannitol just a few weeks ago. I was skeptical at best. But, it has helped me! I hope you don’t mind my saying but the Diet Coke is very detrimental to the gut biome and if he stopped drinking it he would likely feel an improvement. Dr. Perlmutter, Dr. Bredeson, and Dr. Mark Hyman all are great gut biome information sources.
It's interesting to see this because I was diagnosed with PD in 2008 and went down a different route. Here's my story.I worked for another 4 years after being diagnosed. During that time I was given several different meds to try, but they all ended up either not doing anything or making things worse, so I would stop taking them almost immediately. Even small doses of C/L (seretin), made me violently ill.
Finally, in 2012, I retired because my PD symptoms were becoming much more severe. So at that time, I literally could take no medicine for my Parkinson's. 2013 was my year from hell in which I got worse and worse and experienced quite advanced PD. In 2014, I switched neurologists, and the new one prescribed Rytari. I immediately experienced great relief and improvements in nearly all my symptoms. I have taken nothing else for PD since then, including mannitol. I have rarely taken even pain relievers and take no other prescription drugs, I take some supplements but nothing too unusual. I do exercise regularly and am a firm believer in that. I also changed my diet. My symptoms are very manageable. I sleep quite well, have some shakes but B1 helps, no constipation, and no hallucinations or any other of mental issues you mentioned.
My theory is that the extra medicines (Effexor, miralax?) are what caused the hallucinations and perhaps some of the other mental issues for your husband.
Before 2013, I had tried several perhaps similar meds and they had given me hallucinations, paranoia etc. I have taken nothing but Rytari since 2014 and have had no serious problems,
Your husband has now stopped taking those medicines and he is now taking a natural form of Levadopa. From what you say, many of these issues are better now.
I might be wrong, but that seems to suggest that it may be the extra meds that were causing at least some of the mental issues.
I take significantly more Rytari than your husband used to take. He's probably getting more levadopa than he used to. Both of these approaches might be allowing us to avoid those extra meds. That's my theory I'm sticking to it.
Glad it’s working for you. It may be that the Neupro was a cause of the cognitive impairment...it’s hard to know. He always said sinemet and Rytary made him feel sick and could never tolerate much.
I am especially interested in getting him off of Effexor as well which he’s been taking for probably 10 years, but there are so many horror stories of stopping this ....not really sure how to start!
Basically you reduce a maximum of 10% of the previous dose every 1-2 weeks (timing is flexible depending on discontinuation symptoms he may have). If he gets strong symptoms, do not decrease dose any further until they subside. Try not to return to the previous dose, but if you have to, then wait until stable and reduce by a smaller percentage each time. Note that the reduction is a percentage of the PREVIOUS dose, so the first reduction is 10% of the current dose, and the second reduction is 10% of the previous reduced dose...
This has worked for me. It's slow, but better slow and successful than fast, traumatic and unable to sustain.
I've done it with a couple different meds, it's different each time. The important thing isn't how long, but doing it successfully. Ideally you can work with a psychiatrist or other doc who will be supportive. Most docs will offer a much more rapid reduction schedule that often fails due to discontinuation symptoms. The longest it took me to completely eliminate one of my meds was over a year.
Since you mention that he has psychological/emotional reactions to med changes, you will want to be very careful. He may need an anti depressant. Depression is a symptom of PD and often needs pharmaceutical treatment. For me it came before any of my motor symptoms by many years. I would not think of entirely eliminating my anti-depressants, although in my case, C\L improved my mood substantially. He may do better on a different one. It is best if you can do this with the support of a capable doc. You can and should insist on doing it at a speed that you think is right for your husband. A doc can usually have the med compounded into a liquid so that you can make very small reductions.
You can look for and read the ashton manual online. There are also websites where people share their experiences, as well as specific methods of tapering for different meds. I believe one is called "surviving antidepressants" or something like that. There are a couple of these websites.
It's interesting what works for who and what side effects there are. My husband was initially diagnosed with Lewy Body dementia back in 2012. Levadopa did nothing. In fact it was the Neupro patch that turned him around. He was the. Rediagnosed with PD. He actually had extreme apathy. The patch returned him to his old self. It worked well till 2019. He returned to his bed for most of the day. Then mannitol changed that and we have a life again. 👍
My neurologist tried to get me to start using neuropro patches, but I didn't want to risk the side effects. I've been extremely cautious about taking anything other than rytari over the years and I think it's better that way, least for me. Course everyone's PD is different so it's hard to draw any conclusions.
Thanks for sharing your story! So happy you’re having success! When I tried mannitol I felt it interfered with my sleep. Had sort of a caffeine like affect. Perhaps I will give it another go.
Just back from an appointment with his movement disorder specialist. His motor exam showed only slight worsening since last year. He was pretty surprised hubby was no longer on dopamine meds since starting mannitol. Said something like not everyone fits the textbooks! Anyway, things are still going well.
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