I have only mentioned Mannitol when replying to a number of members posts, but I thought I should share our story generally.
My husband was diagnosed with Lewy Body Dementia in 2012. Levadopa appeared to do nothing for him. At this stage his main symptom was severe apathy...misdiagnosed as depression and then LBD. Our first success was when one of the neurologists at the Movement Disorder Clinic he was attending suggested the Neupro Patch. After a few weeks, he was off the bed and functioning, with a new diagnosis of PD.
All was well in that area (non motor) until about 18 months ago, when the apathy reappeared. (We now see one of the neurologists from the Movement Disorder Clinic privately, although he likes us to attend the Clinic periodically, to get a second opinion ). He was starting to think dementia again.
My husband was put on Xadago, with only a slight improvement. At that time, we also tried the B1 protocol, with the neurologist’s approval. Unfortunately, the high dose sent his blood pressure thru the ceiling. He’s now taking 250mg. (We may increase it slowly at some stage).
After reading about Mannitol on this site and following the link to the Israeli research, and then asking our wonderful pharmacist to double check it, we sourced it and my husband started on the recommended dose in January this year.
Mannitol generally is known as a diabetic sweetener.
Within days he started to improve mentally. (At that stage, he was on the bed nearly all day).
He was off the bed, his dizziness and fogginess in the morning disappeared. He started reading the newspapers, chatting and discussing current affairs. Before the lockdown, we went to our friends’ house for dinner, where he chatted all night, till quite late. (We hadn’t been out together with friends for a long time. He wasn’t up to it). He’s now doing crosswords and even 1000 piece jigsaws.
As he is no longer dizzy or foggy, he is able to go to PD exercise classes locally twice a week. He is also using his little peddle bike 4 times a day x 15 minutes each...two with his legs and two on the table with his arms.
Physically, he is still very unstable on his feet. He doesn’t have a tremor. It’s hard to measure any improvement, as we are not out and about because of covid19. His posture is certainly better and his facial mask has almost disappeared.
We are still hoping for more improvements. (Other members say it took longer to see results, but they didn’t have the apathy problem). He has lost to a great extent his sense of taste. We are still hoping in that regard.
When we visited the neurologist a few months ago (before covid19), he was amazed at what he saw. A few days later, he sent us information from the International Parkinson and Movement Disorder Society, on a large trial now taking place. Till then, he had no knowledge of Mannitol.
The fact that it’s been used since at least the 1960’s for brain surgery and brain injuries in major hospitals seems to have slipped below the radar. No research had been done since then because, I guess, there’s no money in it for the pharmaceutical companies. To see the history of this current research see the Syncolein website.
Syncolein has produced a product specifically for PD. I have sourced mannitol from a supplier here in Australia who brings it into Australia from Europe as a sweetener for the manufacture of diabetic foods. It’s very cheap. Initially, I ordered it from Amazon, to discover it was coming out of China. Fortunately it didn’t arrive.
I hope our story helps others and gives them hope that there are lots of alternatives that may work with or without the current PD medications.
Besides this site, the other important fact is that we have a good team of medical professionals around us. Our neurologist is very caring and doesn’t think he knows everything. We can ring him anytime. We also have a great GP and pharmacist.
Gwendoline
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gwendolinej
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The dose is 1tbs. daily, preferably in coffee. If you look on the Syncolein site, you'll see a very good explanation of the research, including a video. Any more than that amount does nothing apparently.
I just googled mannitol Australia and got a wholesaler here . Lucky, I think. I think Blackburn Distributions has it in the UK. Syncolein in the US has it. I know they ship to New Zealand.
The supplier here in Australia is Eustralis Food. They have offices in a few States. The product itself is from Spain. That company there is called Sosa, sosa.cat
I had to have an ABN and open an account with Eustralis Food. They are very easy to deal with.
Thank you for sharing this remarkable recovery. I am glad to hear that the mannitol is working well for you. I checked with my neurologist and she advised against it, (no surprise there), without giving a convincing reason.
My wife has been home for 7 weeks now after rehab and the LBD diagnosis. I am starting to doubt the diagnosis as she has made a remarkable recovery thus far.
Except for her extreme fatigue most of the time, some stiffness in her arms when she sleeps and an occasional stooping, she does not have many of the LBD trademarks, hallucinations, short term memory loss etc . She sleeps well at night even if she naps a few times during the day. Of course, her Dr thinks that the Aricept alone is responsible for the recovery, not her diet, the B1, or the other supplements that she has been taking. Time will tell.
Question for you. Does the mannitol improves your husband’s stamina?
How does it help. Did you see any immediate improvement as we did, or more slowly, as some members report. I’m still hoping for more improvements physically and, in particular an improvement in my husband’s sense of taste.
Yes it can. My husband takes levadopa. he's also on Xadago, which improved him a little when he started on it last year, but not enough to get him off the bed. We've just reduced the levadopa to see if it makes any difference. It hasn't so far.
Hi! So nice to read your post. I'm in Canada and recently ordered Mannitol online from Canada, although it is a US product. ($76. kg.) The first thing I'm noticing is apathy has receded so much it's noticeable in just a week with just 2 tsp., and working up to 3 tsp. daily but can't use it in coffee. I've had this apathy for years and it was worse than any non-motor symptoms. I didn't feel like visiting people or talking to anyone for very long. I could spend the day in bed which is so unlike the normal me. Thanks so much for letting everyone know who has this.
Have recently read a research post on Mannitol and PD which showed that less was best. It also kills off the proteins that cause clumping in the brain such as alpha synuclein. Took it from one of Gwendoline's posts.
The brand is Royal Command 1957- from Etobicoke ON qualifirst.com
I went off it lately and started on Taurine. I'm finding the same results with the amino acids I take and I think Taurine is a big factor. I will start on mannitol again but wanted to see if I could achieve the same results with something less expensive and it seems to work.
Yes, that is the one I bought too. My husband is the one with PD. His apathy is bad, but so are his other non-motor symptoms. We started with 1/2 tsp, and increased it to 1tbsp a couple of weeks ago. It's been about 2 months. So far no noticeable effects.
I still have apathy as a daily battle but now I can overcome it and get motivated to do things and feeling a bit happier with accomplishment, although still not feeling a whole lot of pleasure in what I do. Its strange because I have a sense of humor that hasn't really disappeared. Odd mix of feelings those are. 😐 No one really knows what goes on inside do they?
I don't know if it's the tyrosine working but when I started taking it I discontinued mannitol. I decided that since I saw change without mannitol I should add it again and see if it improves even more. I haven't seen any other changes from it. I take other amino acids for sleep too. Hope this helps.
Sorry ! I meant TAURINE. I had it but wasn't using it much and started using it more a few months ago after reading of the benefits someone else posted information (links) about. Other amino acids helped me sleep but I was still feeling unmotivated and fatigued during the day. Using powder I was only taking about 1/8th teaspoon or 500 mg. Upping it to 1000mg. really made the differences which were happier mood, more motivation and less fatigue. Maybe it's just me....I don't know.... but I wanted to share it since others have read good things about it too.
I still have a lot of apathy but seem to get moving more now. If it's good for PTSD type stress and the brain needs more Taurine because of that then I'd say my stress levels require more of it now.
I wish I could find some help for my memory too. I also get very confused lately. I put a piece of meat in a container destined for the freezer and it only made it to the cupboard above the freezer door. Had to throw it out since it was there for a couple of days. First time for everything. ....Scary. So hope you see the reason for my mistake.
Hi Art, my husband takes LifeExtension Neuro-Mag Magnesium L-Threonate. I’m thinking maybe we should introduce Magnesium Taurate as well. He is doing so well since we introduced Mannitol. In fact, cognitively I think he is still improving. Maybe we shouldn’t change anything.
I am one of those, "if it ain't broke guys", so I would lean toward that angle. Your husband is currently in a position that many PwPs can only dream about, so yes, I wouldn't want to mess with that at all!
Thanks, I am trying taurine too. It's been about a month of 500 mg daily for anxiety. So far I haven't noticed improvement. I didn't realize it may help with fatigue too. I have plenty of that and I had noticed a slight improvement there...Maybe I'll try upping my dose for the month and see how it goes.
Upping it won't hurt because a dose on my bottle says 1/2 tsp. is 2000 mg. as recommended although I've not tried that much. Anxiety is still a big problem for me too but at least sleep isn't too bad since starting melatonin and amino acids at night.
The new MDS neurologist told me to go off mucuna and small dose lithium (2.5 mg.) until he sees the MRI in December. I'm still functioning, stiff as a board and a bit unsteady but moving. Walking or physical work daily sure helps improve sleep. Take care! 🌞🌻🌷
The way you explained your apathy really was so relatable. I’m the one with the sense of humor that can make others laugh but I sit there with a flat expression unable to laugh. I fake it as best I can for my kids sake.
Hi CC...I can still laugh about things but too much stimulation for my brain confuses my mind so I keep smiling although I don't know what I'm smiling about sometimes 🤔. I'm with a happy crowd on Zoom so what else can I do? Besides isolation is not healthy.
I found out I don't have PD but do have Cerebellar Ataxia and not sure where it stems from. It's interesting that so many diseases are linked by similar signs and symptoms. Ataxia is not a disease but a sign of ?? Apathy is a constant but is relieved a bit by Taurine, B 1 and possibly mannitol. I make sure I take
B vitamins and other ones and can see a definite decline in mood without that combination. Now that I found a source for B1, since its not available in Canada, I think I may increase the dose. Your response is somewhat comforting to me and many others. Thanks for caring and sharing and smile inside if not outside.
Mannitol is not particularly expensive, unless you are buying it from Syncolein. I know members have bought it in the US cheaply, can't tell you where from, or maybe from Amazon. We get ours in Australia from an importer. It's used for diabetic foods. It costs us $17 for 500grams, a month's supply. It's the Sosa brand out of Spain.
Thank you, for sharing your experiences, I think I too have trouble with apathy and would be willing to give Mannitol a go. Unlike you I have a neurologist who thinks he knows it all and consequently has a negative attitude outside his own conventional experience.
If you are game 😅, you could print off and show your neurologist the research on the International Parkinson and Movement Disorder Society website and information on the current clinical trial from NIH US National Library of Medicine. These are what our neurologist sent us after he'd seen my husband's improvement. You could ask him if he knows that mannitol is used in major hospitals for brain injuries. I'm assuming it reduces inflammation.
How can these neurologists be so "smart arsed", when they know so little about the brain really.
A question for the mannitol users - would you say mannitol works on predominately non motor symptoms? Or have you also noticed an effect on motor symptoms also. My husband is interested to try it , he is tremor dominant with only motor symptoms so far.
Despe and LAJ12345 I remember reading that your partners also use it, what if any changes have you noticed from using it?
I use MCT as one of the supplement add ons that has relieved me of brain fog and am now thinking about Mannitol as well. Is I don't have it for 2 days I notice my thinking is not what it was when I had a constant dose per day.
He started using the syncolein well over a year ago but also other things at the same time like thiamine, plus we reduced his mirtazapine right down and the apathy did disappear. Also his face became more normal. He still had bad anxiety and Hardy’s daily essential nutrients seemed to fix that within 3 days of taking it.
Over lock down the mannitol ran out as my order didn’t arrive in time. The Australian source had run out and didn’t deliver to NZ either so he was off it about a month. In that time his anxiety has returned badly and he has got very clingy, OCD, forever worrying about keys etc. the order arrived about a week ago so he has been taking it since then but so far still anxious and pacing. Movement has suddenly got a lot worse. I am not sure if it is the effect of stopping the mannitol Or to do with lock down stopping him going to play bridge and having social contact with friends, plus having teenagers home all day Being generally untidy and thoughtless. Too many variables to tell.
I believe it helps with mental clarity - I found I wasn’t stumbling as much to find the right word. It also improved my sense of smell. Unfortunately however the gas is such a problem that I’ve stopped for a while.
I buy the 1kg bag from Blackburn, but I’ll give the syncoelin brand a go if they ship to Australia, see if it helps.
Try taking apple cider vinegar instead because I read somewhere that omeprazole can cause dementia. My husband used to get heart burn and reflux after too much alcohol. He would wake up in middle of night and take a nexium or omeprazole. After reading about omeprazole I gave him 2 tablespoons of apple cider vinegar (braggs) mixed in some water and it solved the problem.
I just took 1/16 of a teaspoon today to see. My main issue is fatigue. I did not lay down all day today and I'm just realizing that right now. Yeah! I will continue with it and see. I don't know if mine comes from China....I will have to check it out. Thanks for the post!
That’s great. I don’t think it matters if it’s out of China in the real sense. It’s just that we don’t know anything about it’s source and quality controls. If is working, then that’s a good start. The daily dose from the Israeli research says 1tbs, and no more. Our pharmacist checked it out for me and reinforced the fact that you shouldn’t take anymore, as it’s in fact detrimental. If less is working for you, that’s good.
We started with 1tbs., as that’s what they said to do, but as it can upset your stomach, particularly if you are not using the Syncolein purpose manufactured brand (which we aren’t), start with less and see what happens. My husband takes Aximax (alprazolam) for his stomach, so he has no”gas” problems. It’s so much trial and error. 🤔
As a Veterinarian I've used mannitol to treat HBC (hit by car) intracranial pressure cases and to treat acute glaucoma. I don't understand how it would effect PD but it's something to mention when I next see the neurologist. I still don't know whether I have PD. But I take Sinemet twice daily and Ropinerole once before bedtime.
I guess if there's inflammation in the brain it could help. Let's face it, we know so little really about the brain. Ask a researcher that question and that's what they tell you. You wouldn't think so when you see the reactions mentioned here from some neurologists to patients wanting to try a vitamin or supplement.
If you saw my husband before and after mannitol, you'd see what I mean.
It will be interesting to see your neurologist's reaction. He could certainly look at the current trial being held. See U.S National Library of Medicine.
Here's a simple description that you'd understand better than me....mannitol appears to prevent or reduce the clumping of proteins in the brain, including
alpha -synuclein. It has the ability to cross the blood-brain barrier. Clumping proteins are a hallmark characteristic of Parkinson's Disease.
Sauna bathing and exercise can also increase production of Hsp70. Sauna bathing may not be appropriate for people with autonomic dysfunction (problems sweating, vasodilation - problems regulating body temperature).
Thank you for that. Our neurologist sent us the most recent trial information (after he’d seen my husband’s amazing improvement), but it was pretty hard to absorb. This is easier reading.
Thank you for sharing your story of hope. My mum was excited to hear it helped dizziness for your husband which she is finding unabating. She too has found neurologist prescribed drugs ineffective and also has no tremor. I have ordered the Sosa brand via a chocolate making company here in the UK. Over 500g for about 15pounds delivered. We have our fingers crossed for some respite
It was interesting, the night she first took it her stiff arm was in some pain and she was excited because she thought it might be releasing but in the end it seemed that it didn't help and she thought perhaps it was making things worse. As such she didn't try it for too long before abandoning. I still appreciate having the opportunity to try something that might have helped.
Hi there, yes the supplier is Eustralis Food . They have a Queensland office..Eustralis Food Queensland. They are wholesalers, so you need to open an account and need an ABN (I used my daughter’s). It’s called Sosa Mannitol Powder500g. Cost $16.79. I’m sure they would post it to you. If you have a problem,let me know.
I got quite a few, in case they couldn’t get any more. It’s out of Spain.
I hope it works for you. Be patient. I wish we’d known about it and the HealthUnlocked site years ago. I’m not sure it’s going to undo all the damage. My husband is still improving. I noticed very recently that his Parkinson’s Mask has gone. It had reduced, but I think it’s actually gone.
What is the minimum order? I do have an ABN but it has never been used commercially. I did ring them up and spoke to a pleasant lady who didn't give me much hope as I did admit to not having a shop. (Silly of me). I thought I might try again via email and if the minimum amount is reasonable I'll just hang on to it.
Hi there, my husband started on mannitol late 2019. He now weighs 75kg (was less before mannitol 68kg).
We just started on the suggested dose of 1 tbs. a day, as shown in the research, which we read on the Syncolein site. We had our pharmacist check it out. Maybe less would work though, but not more apparently.
The customer service guy I deal with in Melbourne has been very helpful. He knows exactly who I am and why I'm ordering Mannitol. Leave it with me. I will ring him tomorrow and get back to you. I doubt the minimum order is the problem, but I'll find out.
Hi again, I’ve rung Eustralis here. Technically they don’t supply the public. Guy in customer service said he’d get their sales manager here to ring theirs. Suggested you leave it for a few days and try again. I usually order 4x500gr. Costs about $68.00.
If push comes to shove, I’ll get it here and send it to you.
Hi Gwendolyn, for some reason I didn't get notified of your reply but have now read it.. I shall try again on Monday and have my ABN ready. I appreciate your offer and your assistance and will let you know how I go. Good luck with your move.
Hi Gwendoline, is it OK to take mannitol in a smoothie. I tried it first with a cup of green tea but wasn't overly impressed. I took two teaspoons this morning in my smoothie and didn't even taste it or its powdery effect on my tongue.
im excited to give this a go ! just ordered some for my dad ! his apathy, brain fog, dizzyness, weakness etc is soo bad its tough to watch at times. thanks for replying at the thiamine hcl facebook group, i will update
Great. We saw a difference within a few days. I hope it works that quickly for your dad too. Others have said it’s taken longer. We are still seeing improvements after 10 months. My husband was coughing often when eating, which worried me. That has only recently massively improved.
Oops, I thought I’d replied, sorry. We use the Sosa brand out of Spain, accessed through a wholesaler here in Australia. Some members have sourced it direct.
Hi friends I started using Mannitol from Synoclein about 10 days ago. 1 scoop in coffee as reccomended in the instructions. I experienced some really bad panic attacks and am not sure if it is a coincidence. Has anyone else had a similar reaction?Otherwise less apathy, better sense of smell and taste.
Hi That is tremendous news. My husband has been on mannitol too and has some of his sense of smell back and he is so grateful for that! I am in Australia too and I am curious about your supplier, would they sell to me as well? I source mine on ebay, but if the one your are using is esp for PD I would rather use that! Thank you kindly for for sharing your story and I look fwd to hearing back from you.Cheers
Oh, I just saw it was the sosa brand, I think I may have asked you before and I did have trouble sourcing it for some reason. I will try again and thanks again for the info 😊
Where are you in Australia. I have a couple of contacts.
Another interesting thing is that a member recently reported that he got his sense of smell back and when he changed brands, he lost it again. SO I ordered some off eBay (very expensive) to see if it might work to restore my husband’s sense of taste. It hasn’t yet. The person I got it from was in Eltham, in Melbourne. Where was your’s from. Might be worth a try for us.
My husband is very upset that he has lost his sense of taste to a great degree. He now eats to live rather than “lives to eat”.
I can’t find the conversation now, but MarionP (who is very astute and well informed), suggested that there is a different base/fungi which could change the Mannitol. So I guess if you change your source, it may change your husband’s sense of smell. Who knows.
The reason I haven’t replied sooner is that I’ve been trying to find the above mentioned conversations.
Anyway, let me know which State you are in and I’ll give you my contacts.
Thank you for getting back to me and I am located in Sydney and would be very appreciative for any contacts you have for sourcing the sosa mannitol. The one my husband uses is from a seller on ebay named vicplastics. He really likes it and says it's helping him, but I still want to try the sosa brand and hopefully its cheaper too.
The company I sourced the mannitol from is called Eustralis Food. They are wholesalers, so you need an ABN. My daughter has one They have offices in each State that seem to operate independently to a degree. I had no trouble opening account in Melbourne. Fellow member in Queensland Getz had a bit of trouble with the Brisbane office.. I contacted Melbourne and they fixed it. I got an email from their Brisbane Sales Manager and when I explained what we wanted the Mannitol for, she fixed it with her customer service staff.
If you need to, you can explain all of this. Any real problems, let me know.
Their mannitol is only $16.79 for 500grams.
I still may try your eBay supplier, just in case it helps with my husband's sense of taste. It's worth a try.
Oh ok thank you so much for that! I don't have an ABN and I will have to look into that if I am to proceed. If you go with the ebay seller, it is pretty expensive, so just keep that in mind. Thank you again and have a wonderful Day!Cheers
A couple of orders I picked up and paid. I’ve also had it delivered and paid over the phone on ordering. I just quoted my daughter’s ABN, so the account was in her name. If my daughter didn’t have an ABN I would have got it sorted and then told them XYZ company (of friends) would place the order. Hope that helps.
The stuff I got from eBay was also expensive and didn’t work any better, only in regard to restoring my husband’s sense of taste.
Cheers,
Gwendoline
The reason for the ABN is that they are wholesalers. So you don’t pay GST, as that gets charged at the retail level. They don’t normally sell to the public.
Ok, well hopefully I can figure something out and let me know how it goes if you end up buying the ebay one I suggested. It’s always trial and error with everything to do with PD sadly. I just want a magic wand to make it all go away. Cheers
Mel
Hi Gwendoline, Thank you so much for sharing your mannitol experience! I am in the US but perhaps I could access the reputable source you have in Australia instead of the sketchy Amazon product I presently have? If you wouldn’t mind sharing your resource, I would be very grateful. I am also writing to share that I have recently messaged with Dr. Dale Bredeson who is the neuro scientific researcher who wrote The End of Alzheimer’s. I wrote to ask if his diet and protocol would also be affective for Lewy Body Dementia and he said that yes, it is helpful for Lewy Body dementia. Since you expressed concern about Lewy Body dementia I just wanted to share this information resource with you. I hope I am not overstepping by doing this, giving unsolicited advice is generally ground upon for good reason but I hope to help.
My father has PD and Lewy Body dementia and I have early onset PD.
Hi, of course you are not overstepping the mark. We are in this together and need to help when we feel we can.
I get the mannitol from a wholesale importer, who gets it from Spain. Other members have been able to get it direct from the company. It's pretty cheap. The brand is Sosa. It's sosa@sosa.cat / sosa.cat.
Syncolein sells it in the US. It's purpose made. If you haven't seen their website, it's worth a look. It's where it all started for us, after a member referred us to it. It pretty expensive compared to Sosa. It does have something in it to cope with the gas problem that a lot of people have to varying degrees.
My husband was thought to have had dementia twice. First at the beginning, when it turned out to be extreme apathy and was remedied with the Neupro patch. The second was in 2019, when the apathy returned and our neurologist wondered whether my husband might have dementia. Again, turned around. This time, as you know, by mannitol.
He has been on the mannitol since 2019 and is still improving, mostly now because he is getting fitter I reckon. Fingers crossed it keeps going. The only thing that hasn't improved is his sense of taste.
Hello Gwendolinej. Since you first wrote this post ten months ago, have your husband's symptoms continued to improve? Most importantly, has his PD/LB dementia continued to undergo a reversal of sorts?
If anyone else on here has experienced recent improvements, please do not hesitate to post them as well. Thank you!
Hi again,Yes, he did continue to improve and stabilise until recently. Over the past few weeks I thought I detected a couple of changes. He seems a bit forgetful at times and has now mentioned it himself. I think the facial mask is a bit stronger. Still no dizziness or fogginess, still doing crosswords, still going out with friends. But I'm a bit concerned. He started using mannitol late 2019.
He started using the Red Light Hat today, so I'm hoping that will give him boost. I'll certainly report any good news.
Hello Gwendolinej, I just saw your post from 10 mos ago and wanted to know how your husband is doing? Did he continue to see improvement on Mannitol? I hope so.
Could you send me information on the study that's being done with the Mannitol. I'm not currently taking it. I take Carbidopa levodopa 1 pill 25 mg to 100 mg over 8 hours and 1 5mg baclofen twice a day. I have tremors I have just started to experience some dyskinesia. What are your thoughts? Thank you
If you google The Science Behind Mannitol, you’ll get a number of articles that explain it. If I was doing it again, I’d start with a teaspoon, instead of a tablespoon (which was the dose suggested in the research), because of the gas problem, which quite a few members experienced. This problem was mentioned in the research. My husband had taken Amimax (Omeprazole) previously for reflux ( probably caused by too much red wine). So we reintroduced it and he had no problem with gas.
Incredible story gwendolinej! Thank you so much for sharing. We just went to the neurologist at OHSU for his 6 month checkup and were told not to take Mannitol because it is toxic to the liver. This was so upsetting because everything I’ve read about it never mentioned liver toxicity. I’ve been searching but can’t find anything. Mannitol has given his sense of smell back and improved his handwriting a great deal. I don’t trust the neurologists at OHSU at all though. They have discouraged us from trying any supplements and keep trying to convince him to take more and more Sinemet even though it has a terrible effect on him. Years ago we told them we were thinking about going to Switzerland for FUS PTT and were strongly advised not to pursue this as they had never heard of it. Now there is a brochure on the check-in desk for their new FUS PTT procedure! But they only will do one side saying slurred speech can result from treating both sides. He was not a candidate for Switzerland, Anyway, sorry for the long rant. Just want to say how fortunate you are to have a team that supports you that you can trust. Best wishes for continued success!
What a reaction from your neurologists. They sound plain arrogant and maybe more. That was the word my husband’s neurologist used when I told him what some of our members here reported when they suggested something to their neurologists. We are very lucky, as you said.
If you’ve googled mannitol and the liver, you’ll have seen that it’s been investigated in relation to using it for liver transplants and more. It’s also been used since the 1960s at least, for the kidneys. It’s an osmotic diuretic. And, as I mentioned in my post, it’s still used in hospitals for brain injuries and surgery. It may have side affects, but what about the side affects of the PD drugs they are advocating so vigorously.
There have been a number of members having had FUS PTT in Switzerland with great success. Haven’t they had one side at a time. No one has had the side affects mentioned.
My husband is now using the Infrared coronet from Wellred, as well as their Therapad, which sits on the gut. A number of our neurologist’s patients have told him they are using the coronet with great success. We only started the Therapad more recently, and it seems to be helping with the jerking of his legs in bed. We need more time to confirm it…another week maybe. That particular issue was mentioned by a trial participant in a newspaper article recently on the research done here in Australia.
It’s okay to rant. You have just cause. Maybe a member here might be able to recommend a neurologist in your area.
Good luck, keep in touch. We are all in this together
I’m not promoting it. It’s like so many possible treatments, it works for some, and not others . As long as it doesn’t make you worse.
We are now about to cut down on mannitol. My husband has been in hospital with what was diagnosed as delirium. It’s been a nightmare, particularly as we don’t know what caused it. Mentally, he’s now fantastic. Physically, well he’s full of gas and is constipated. He’s on 2 antidepressants, which have side affects. Maybe combined with mannitol……??? It’s all trial and error. Our doctors are working on it. It only dawned on me today that mannitol might be contributing. 🤔🤔
Well I think in the case of the link I provided, the lady was worse off afterwards. Just concerned about PTT being characterised as all upside and no risk.
Thanks very much for your comment. I felt so angry at being wrongly advised again by the neurologists at OHSU- especially after going through all the trouble of dragging him in there. I feel like writing them a letter and sharing the studies But it would make me so upset and it’s their job to educate us- not the other way around. Would love to find a supportive neuro in Portland OR if anyone can recommend!
Oh, just saw your post about your husband having delirium and sorry for the chaos you are going through! For what it’s worth, having worked in nursing homes, my first thought is to rule out a UTI because it doesn’t present the telltale symptoms the younger generation gets, but can cause delirium. Good luck gwendolinej!
Thanks for your advice. My husband was in hospital, including rehab, for 2 months and had every test under the sun, including UTI. He has an Overactive Bladder and was to have a Botox treatment before he shut down and was admitted to hospital. He was on a medication for his OAB. One of the side effects listed was confusion. Most side effects never happen, of course.
Another possibility is toxins, caused by not drinking enough fluids. I was battling with that. The first sign of trouble was confusion and it went down hill from there over a few weeks.
If you can bring yourself to, you should send that letter . They are very busy ( too busy probably) to keep up with all studies. I have told our neurologist about some studies, including mannitol, when we tried it. He followed it up and then sent us a more detailed document on the study.
I sent a very emotional email to the private hospital my husband was admitted to. A hospital with a very good reputation, but obviously struggling with Covid rules. They allowed no visitors, so I was struggling to cope. I couldn’t talk to him, as he wasn’t communicating. I should have been in there, as I could have helped the staff handle him, which is what happened when he went to a Rehabilitation hospital. I was the only visitor in that hospital.
I found out too late that the Covid instructions from our Health Department was..no visitors unless there’s a mental health issue. I was very upset and very angry, So I wrote a very emotional letter setting out my grievances and accusing them of taking the easy way out. I also copied it to our State Health Minister and our Federal Health Minister. I got an immediate response from the hospital and an apology. The Health Department also contacted me and followed up with the hospital. The Health Minister obviously forwarded my email to them for action. It was a good result, as it may help someone else in a similar position.
I doubt that your neurologists would admit being wrong, as they sound too arrogant, but they may learn something from it.
Glad your husband is improving. Overactive bladder goes with the PD territory. I was given drugs for it which helped but in the long term Levadopa has been effective. When I did take meds they made me have a dry mouth and as they were anticholinergic they helped control tremor but messed with my head. I avoid them.
Thanks Hilo, My husband was given Betmiga, which isn’t a anticholinergic drug. Initially I thought it may have caused his delirium, as that’s one of the possible side affects in older people of anticholinergic drugs. So we still don’t really know what caused it. All I can say though is that it was so scary.
We still have to solve the problem of his constipation and the gas in his bowel maybe causing the swelling in his legs and stomach. We are stopping the Mannitol, in case it’s contributing. Who knows what’s causing what 🤔🤔
He is on 2 new antidepressants. Are they helping his mental state, which is so good now. Or is it the clearing of toxins...nobody knows.
Can you give us an update on your husband. In this conversation (3years ago) you mentioned that he was also taking B1 at 250mg. So, therefore, he was taking the B1 at the same time he added the mannitol? The reason I am asking these questions is because my husband recently started taking mannitol and though we previously knew about B1 therapy we had not really tried it. Now we wish we had as it appears to have had a greater success with a larger number of individuals than the mannitol. I wondered how it turned out for your husband and curious if you know what helped the most B1 or the mannitol? And does he still take both, etc.? Thanks, Diane Sperber
Hi there. The Vitamin B1 therapy didn’t work because it sent my husband Alan’s already high blood pressure through the ceiling.
I’m wondering if mannitol works better for people with non motor symptoms, although that wasn’t the case with the initial research in Israel.
Mannitol worked for about 2 1/2 years. We decided to stop it recently, as we were about to try the Coranase (as an addition to the the infrared coronet we were already using).
I also wanted to try B1 again because Alan’s blood pressure has stabilised, due I’m thinking to the introduction of high dose Vitamin C for his constipation and/or a diuretic for his heart problems. Recent research stated that Vit.C lowered blood pressure in people with high blood pressure (but had no effect on the people in the trial who already had normal blood pressure).
Alan has got his sense of taste and smell back since starting on the CoroNase. He lost them many years ago, so he is delighted that he can enjoy his food again.
Alan’s health has deteriorated over the past year with 3 episodes of delirium. And just to add to his problems, he fell and broke his wrist. A week in hospital and too many pain killers later, we are now trying to get rid of his severe constipation.
Alan’s mood is particularly good at the moment, so I’m hoping 🤞that we have put the delirium behind us.
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