Wondering if I should keep holding off on taking dopamine therapy. I've been avoiding taking it since my diagnosis a year ago due to an overall dislike of pharmaceuticals in general and in hopes of avoiding the side effects. Just watched a talk by Dr. Laurie Mischley (link below, at minute 26) where she said,
"“There is no good reason to delay dopamine. In fact it may be harmful.,,, When we give people dopamine, life expectancy is increased.”
Hi Smittybear, This link might get you started on your research into vitamin B1. If you search this forum you'll find many posts discussing how to go about it.
I'm very confused. My nutritionist I said 500 mg twice a day of b1. When I was on 500 mg once a day and the carbidopa-levodopa was increase by half a pill ,thats what causes involuntary movement. I cut the b1 involuntary movements stayed the same. Iv been off the extra C/l. since January should I have seen an elimination of the involuntary movements at this point? The involuntary movements fluctuate in intensity but usually occur within 2 - 3 hours after taking the pill. After that they seem to subside. Sometimes they last for a short time and sometimes they last longer. Trying to figure out the role that the dosage of c/l is playing is frustrating. Reintroducing b1 could complicate matters. Thanks for your help. if you have any other suggestions I would appreciate them. thank you again
Sorry, Smittybear. I have no ideas for you. My dyskinesia stopped immediately as soon as I cut my c/l dose in half. And, it returns if I increase the dose again. It's as much a mystery to me as it is to you. Good luck.
How would you suggest cutting back on the dosage? Should I start with just one time during the day take a half pill instead of a whole pill? And how many days would you suggest keeping it that level? I don't want to get worse by cutting too much at one time but I'm not familiar with lowering the dosage correctly .Neurologist suggested one half pill every 4 hours instead of 1 pill every 8 hours. Not sure how that would work. am I better off to just take a half pill one of the regular times ? If so which time should I start with, am, afternoon, night? My sleep is pretty good. Thanks for your kindness and help
I would recommend following your neurologist's advice, Smittybear. Their plan sounds pretty much like what I did. Just give it a try and see what happens.
As I see it, with the drugs that we have now, if there are no symptoms, there is no point in taking PD medications. If there are symptoms, the only point in not taking them is if the side effects outweigh the benefits. One point to note is that it often takes several months to find the best level of levodopa for you. For instance, consider this scenario: your PD is progressing and you now have symptoms, perhaps a slowness of movement and a tremor. You see a consultant who prescribes 100 mg of levodopa (with carbidopa) three times a day, and says come back in three months. You try to follow this regimen, but you have nausea and can't take the pills; or you take the pills but they have little effect (probably because the dose has not been enough to reach the therapeutic threshold). Unless you have access to the consultant you have to wait to the next appointment before getting this fixed. In the meantime you are deteriorating and the symptoms are getting worse.
Btw, if 'lbrussel' is in the US, his doctor or nurse practitioner can provide updated prescription advice at any time (e.g., take 1/2 tablet three times a day, or take with food, or whatever), or write a totally new/different prescription... At least that is the case with my doctor...
If you stick with the right doctor and are lucky enough to have the right health insurance policy, you won't have to suffer if you end up needing massive help like me.
My doctor is briefly seeing me almost every week because I was in terrible shape recently. Covid-19 ironically enough was a blessing for me as the United States government asked insurance to cover telemedicine. So, I lucked out and I am fortunate.
You are right though. We need to get serious about constant monitoring via wearables. That's the only way progress can happen. No doctor can realistically see each patient every week in the clinic. I lost my job a few weeks ago and it was get better or starve. My doctor recognized the urgency and hence the extreme care.
I have heard the pharmaceuticals work for awhile, where your symptoms lesson, only to come back later. We are doing alternative treatments.
when you eventually begin l-dopa you will most likely have to start titrating up immediately with a larger dose as you symptoms will have progressed during that time. cheers!
The downside of not taking levodopa is full-on symptoms, reducing quality of life, making you more fatigued, more aware of your PD, more obvious to others etc etc. Yes, some people have side effects, it's the same with any medicine but IMO the side effects from not taking the medicine are much, much worse.
There's also no reason to delay. In other words - "why look after your umbrella when it's raining?"
George has taken natural medications, that cause no harm, for years. He seemingly has not progressed. He is taking B1, recently, and is using a PEMF mat, ozone saunas, infrared saunas, and a near infrared nose applicator.
I don't like pharmaceuticals, which are, for the most part, foreign to the body. George has taken the Marty Hinz approach. He started with Dr. John's approach, and then we changed it gradually. George is very active, and is doing so well. I don't expect his condition to get worse. All he has is a right hand tremor.
I am also going the natural route, I take mucuna pruriens instead of pharms, Levodopa is an artificial version of l dopa, my understanding is that it causes nausea because it delivers a more concentrated dose of l dopa. There are many variations of natural therapies that can benefit your health, diet, exercise and less stress are advised for you to get on top of those immediately to lessen the progression of PD. Dr Laurie Mischley has an online PD class that can educate you and her main goal is to lessen the PD progression. I feel it is well worth the money myself. The more you educate yourself the better, double check anything you question. I take many supplements but weed through to those I feel are most beneficial.
You're absolutely right. Right now, the stress has been huge. I imagine most PD patients are quarranting themselves. It's very scary. I would imagine a lot of people would turn to alcohol in higher amounts. That has to be avoided.
According to one neurologist I saw if you don’t have enough dopamine your synapses pack up, so even when you take the meds there is nothing left to receive them. So, take the meds!! Enjoy life while you can......
Surely you need to see the neurologist when you need him. Your husband shouldn't be taking that drug if it affects him like that. There are alternatives .
Levadopa (Madapar) has never really worked for my husband. He wore the PKG watch to measure it's effect and they found that it worked for a short time after taking, and didn't work as well either ( as seen on a graph). The Neupro patch worked well for 5years. Now he takes Xadago, it helped a bit. The thing that has helped him is Mannitol (found on this site). See research on Google "Mannitol and PD"
Mannitol is a diabetic sweetener and in fact, has been used in hospitals since the 1950s for brain surgery and injuries, but no further research had been done since....no money in it, as it can't be patented.....Till recently, when a VIP in Israel, who has PD, helped raise funds to back the small research project at a university being done with the help of students. (See website syncolein.com. They supply a product made specifically for PD, but also have a video on the site relating to the research).
Our neurologist was amazed at my husband's improvement when we saw him recently, mentally and physically, including the fact that his Parkinsons mask has all but disappeared. So much so that a few days later he sent us the details (20 pages) on the trial, which will be completed in 2022. Our neurologist is very "hands on" and has an open mind. When I asked him about trying the B1 protocol, his reaction was "try it, there's no research on vitamins, as there no profit it it". B1 didn't work for my husband, as it raised his blood pressure, an unusual side effect apparently.
It's all trial and error with PD and we need a neurologist who realises this and we are lucky to have one. We can ring him anytime. Have you thought about changing yours. Maybe someone on this site could help if you asked for a recommendation, particularly if you happen to be in a big city somewhere, or even a support group where someone could recommend a caring, hands on neurologist. We are in Australia.
This site has given us a lot more confidence in managing the PD, and I'm very grateful for the discussions we can have.
Thanks, I think the reason he doesn’t see him more often is he is early stages and not that interesting apparently! He actually said that there are so many people like you I won’t see you for 18 months unless you have atypical which apparently Is way more interesting to him.
To be honest I didn’t find him much help anyway. He wasn’t interested in any natural treatments like exercise, diet or herbal remedies and it was straight on to L/C increasing over weeks to 2x 3 per day and if that doesn’t work take another thing which when I looked it up had side effects of compulsive addictive behaviour which he already has problems with so he didn’t want that. He is supposed to be the best neurologist there is around here. The nurse seems way over worked and is supposed to ring us but we never hear from her.
He is much better than he was after taking Hardys daily essential nutrients, thiamine, and mannitol plus other things ( see my profile). His face also his normal again and mood has been normal for over a year now. He is just struggling with winter this year and the kids being home in lockdown was difficult as they are noisy and disruptive. Hopefully now they are back to school and NZ seems to have dodged a bullet with the covid he will settle back into a rhythm again.
The L/ C he initially got up to 1x 3 per day for a week but it made no difference to symptoms and just made him sick. The neupro patch sounds interesting. Maybe I need to get proactive and try ringing the nurse.
I would certainly ring the nurse. Our last consultation by phone was a few weeks ago. We tend to dictate how often we see him. We have never had that long between visits. I guess if you are sailing along with no changes that's okay.
Not sure about the Neupro patch for your husband, as the main side effect can be addiction. That wasn't an issue for my husband, but I did see some research that suggested that maybe they could predict which patients may have this problem. I did ask the question of our neurologist, and he said yes, he's had to take people off it.
Mannitol can't really be called a natural therapy if it's been used in hospitals for brain operations and brain injuries in our hospitals (including The Austin Hospital, here in Melbourne since the 50s.
How long has he been on the Mannitol and were there specific changes you can contribute to it. A couple of times I got impatient and introduced more than one thing, and then didn't know what caused what. We tried B1 ( with our neurologist's blessing) and a new drug Xadago at the same time, and his blood pressure went through the ceiling. Turned out it was B1 (pity). We introduced Mannitol three months ago, so we know what affect it has had. Still hoping that it might restore his sense of taste.
Let's hope we are out of the woods. Time will tell. We are better than most though. Good government had a bit to do with it. We are oldies, so no stresses at home during this time. Three months ago would have been a different story, before Mannitol, for me anyway.
Nice talking to someone down under. Normally assume they are from up there somewhere 😅
He has been on mannitol since 26 July 2018. Thiamine from 8 June 2018. His frozen face improved after taking these a while. He seems to be able to smell some things better now too. I’m not sure which helped the most.
Also weaning down the mirtazapine helped I think as I’m am pretty sure it made all his symptoms worse.
His anxiety improved the most after starting Hardy’s daily essential nutrients. He always feels worse stress wise at this time of the year so at the moment I am trying to work on circadian rhythms. I am trying to get him to get up as soon as he can after it gets light around 7.00am. He was wearing tinted glasses outside so he is going to switch to non tinted on his daily walk. I’ve just put a blue light filter on his pc screen. Do you find winter is worse?
I'm not sure about winter. Alan's had a very bad time since the Neupro patch stopped working. His severe apathy returned and he took to his bed. We went to see the Physio at St Vincents Care Services today, where they have a number of PD programs. She was very impressed with his improvement since she last saw him. She reminded us that 12 months ago he was spending 20 hours a day in or on the bed. He hadn't really got going on their PD Warrior course because he just wasn't up to it. The biggest problem, besides the apathy, was that he suffered from dizziness and fogginess in the mornings, when the course was on. And then he had a fall and hurt his back. It's only been since he started on Mannitol about 14 weeks ago that it all changed...after a few days, no fogginess, no dizziness or apathy. It's been amazing. He's now booked into doing two sessions a week with the Physio and 2 other PD patients. He hadn't been out for dinner or visited our daughter and her family or anywhere else really for over a year. He just wasn't communicating. Our family visited us. He adores our grandchildren. He's now reading books and newspapers, doing crossword puzzles, discussing anything and everything, just finished 2x1000 piece jigsaws. We had dinner at our friends home just before covin 19. He sat and talked all night till 11pm, just like he used to. I hope it lasts and maybe there's still more improvement to be had.
I'll look at your supplements etc. He's taking quite a few, but I'll compare and see if there's anything we can add. Thank you.
Is he taking mirtazapine/ remeron? This is the cause of mine not wanting to get up. I have weaned him down to 1/100 (yes 1/100) of the amount e was prescribed, over a year and it is enough to help him sleep but not make him as dopey and apathetic. I also found horny goat weed and carnosine helped with apathy But I’m not sure if they are safe with large amounts of medication. That’s why he wantS to stay off things as long as possible so he can try natural products.
Maybe I should increase his mannitol. He is only having a tsp a day. How much does Alan take?
Hi again, Alan takes Madapar (levadopa) and the Neupro Patch still, as well as the Xadago. Of course we don't know what any of them are doing.
He is also on an antidepressant, Valdoxan. It's melatonin related, so helps him sleep...not that they told me that, and I suspect they didn't know. I discovered that fact when I couldn't work out why he was so sleepy in the mornings. The hospital put him on melatonin when he wasn't sleeping very well. They then changed his antidepressant to Valdaxon. When I went on line and checked the two drugs, I found the answer. We dropped the melatonin and the sleepiness went away, but he's still sleeping well.
As far as Mannitol is concerned, the dose mentioned in the research is 1tbs. a day in coffee. Our pharmacist confirmed this.
I've just been reading (again) some of the info sent to me by our neurologist on the mannitol research (13 pages). If you are interested, one part is from the International Parkinson and Movement Disorder Society. The other is from NIH. US National Library of Medicine...Google ClinicalTrials.gov and put in box PD-mannitol. Some light reading 😅 It's interesting in that it's being backed by the Hadassah Medical Organisation, which is The Hadassah University Hospital and University in Jerusalem, where I guess, it all started.
I'm not sure they are sure exactly what it's doing. Maybe it's helping some of A's meds to get through the BBB. I'm glad we are not waiting for the trial results, particularly with the covin 19 added. The neurologists couldn't recommend it at this stage, even if they wanted to.
Thanks. I think I started him on a tbs at first but with all the other things it was quite expensive and I was a bit worried that it might grow bacteria being a sugar so hedged my bets and cut it back. I will try increasing it again and see if it helps at all. I’ll read up in it again. It was a while back I read the research so it might be updated.
I was able to source Mannitol from a wholesaler here in Melbourne. It cost $17 for a 500gm container. All I needed was an ABN to open an account. I bought 6 containers as soon as it became obvious the virus was a problem.
Gosh that's cheap. I bought the synuclein one from the us. It was nearly $500 for 3 kg I think. But the last lot has lasted a year. Just bought another couple of kg but who knows when it will arrive
Would you like me to ring the company and ask if they would send mannitol to NZ. They may already do so. Mannitol is a small part of their business. They import it from Spain.
Not good news. The company doesn't ship to NZ. I then had a look at other suppliers, including The Melbourne Food Depot, e-bay and Amazon and wow.. anything from $15 for 100g, $60 for 200g. In fact, I've just ordered another 10 containers, as the company is reassessing, whatever that means. All their products come from Europe.
The thing that concerns me most is that if the "authorities" get wind of something being used for something medical when it's not approved for that purpose, they can make life very difficult for us to access it. Until the Trials into Mannitol and PD are completed ( which will be too late for my husband), it needs to be kept low key.
I did reply to your private message, but then it disappeared. Wasn’t sure I was doing it right anyway?? Der.... did you get. You might need to give me some instructions. Not good at navigating sites.
I might have asked before, but how much Mannitol do you give your husband a day? I have been taking two tablespoons a day for two months and I can't tell if I have any improvement.
No more than 1tbs. according to the research, anymore does nothing. Our pharmacist confirmed this. It can apparently several months before you see any improvements.
My husband's improvement started within a few days...no dizziness, no fogginess or apathy. His motor improvements are harder to measure, as he had a fall and hurt his back. But when he went to the Physio this week for assessment, before he starts the PD Warrior course, she commented that his walking speed had improved from 52% (which apparently is poor), to 67%. Was that mannitol and/ or the fact that, since his apathy disappeared and despite his sore back, he's been moving more?
I'm hoping there will be more improvements, including getting his sense of taste back.
Good luck with the mannitol. It's so hard to be patient, I know.
NZ is a great country, and we’ve done well with the covid, but that was fortunate as the medical system is underfunded, and there are long queues for procedures even with medical insurance. We don’t have access to drugs that they can get in Australia. We have too many rules and regulations slowing down progress.
But if you like stunning scenery, amazing food, wine and lots of open space you will love it!
A friend of mine had severe nausea and sleepiness after taking Mirapex and after just a couple days her doctor told her to stop taking it right away. Switched to Simenet with much better results.
It's been a number of years but as I recall I started very slowly taking half or less of what was recommended and slowly more until I was at the right dose. I also took it with a full stomach and since I was newly diagnosed it still was effective even with food in my stomach. It took patience and a number of months before it really started working at maximum efficiency but I saw some help immediately and then I was like a new person. Where I couldn't walk more than a few yards without incredible pain I could hike again to the top of the mountain near my home. I was in better shape than people my age without PD. I could ride my bike again for 10 miles at a go, I could write again, I could dance, I could go to work and do my job, I was no longer ruled by the anxiety...on and on. This is a chronic progressive disease without a cure at this point...so enjoy your life today!
I mainly do what I refer to as urban hiking now. It is much safer, as far as falling, because of the even ground. I count myself very lucky that where I live is lovely even in town.
We are so grateful where we live in the mountains. The woods and stream are in the backyard. The front yard has a wonderful view of Mt. Shasta, and our town, built in the late 1800's - early 1900's is a former mill town, with about 700 full time residents.
George is taking Mucuna. He had nausea too. He has to balance tyrosine and 5-htp, and time the first dose of mucuna with food. He hasn't been nauseus for years.
The problem is everyone is different. We worked it out on our own. George is taking Barlowe's 40% mucuna. Look at Dr. Marty Hinz's and Dr. John Gray's protocol. That's where we started. Also, so many on this site have had good luck with HighDose Thiamine, (B1)
Start with High Dose Vitamin B1. That may be all you need. If you Get started on the natural supplements before taking drugs. Message RoyProp. He knows all about B1. I wish we knew about it from the beginning. It's amazing.
When growing up, I have seen people with Parkinson's literally wither away and die because PD medicine was very scant and rare. Levodopa was widely available only in the 80's and was discovered in the 60's. Movement Disorders Specialist ( MDS) were unheard of. In those days, being diagnosed with Parkinson's was a death sentence.
Dr. Mischley is right. She probably speaks from observation and experience. The "no" medication route is the road to Parkinson's hell and beyond.
BTW, why avoid available and proven Western medicine when it's known to work? Side effect is a common feature of all medicines and everything else in nature and life. Sounds ridiculous? Two of the finest examples of nature are grapefruit and St. John's wort. There's a long list....
I have not heard of C/L being addictive. But, then again I am new to this maddening disease. But, I have heard that dopamine agonists, such as Mirapex can be addictive. They say it's harder to get off than opioids.
I assumed it would be like narcotics: Withdrawal has severe consequences. But maybe it's like caffeine; Withdrawal is painful but temporary. And not everyone is affected.
I stopped meds for 3 weeks. Talked to the neuro and she said to stay on it but reduce the dose. I felt no problems for the three weeks I was off meds. She doesn't give me reason for using it.
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