I am wondering if non-tremor dominant members experience benefit from B1.
If so, taken alone or taken with PD medication?
What are your benefits?
Thank you
Non-tremor dominant PWP: is B1 working... - Cure Parkinson's
Non-tremor dominant PWP: is B1 working for you?
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Great question, I’ve often thought of posting it. I think from all the posts I’ve read from the very beginning it appears to me that those that are tremor dominant have the best results and the almost miraculous responses. I am not tremor dominant and have been up and down the B1 dosing from quite high to now at a low level. I have only taken the oral B1 hcl and maybe the results would be better with the injections. I couldn’t really tell if it was ever helping me much but I would reach a point of feeling worse, higher anxiety, greater stiffness. I persevered and continued to try and find that perfect dose but never seemed to. I think it’s wise to take some even if only to help slow or stop progression. There have been members who feel benefits at rather low levels. Dr. C said the lowest level he had seen to be effective was 300mg orally per day. I should add at higher levels Dyskinesia became much worse too. Connie
Hello Connie
Thank you for your reply.
I pretty much experienced the same as you with high, and then low doses. I also got injections but same response...
If you ever do start to get improvement from B1, can you please post (telling how long it took before it worked)?
Thank you !
Absolutely! Are you taking a small dose now?
Yes. I had stopped entirely for months. Then I read a post about great results on stiffness with 100mg a day for 6 months. I started again 200mg in the beginning of Feb, but this time I am also taking Levodopa Cabidopa, because according to recent posts, it seems to work better than b1 alone.
Unfortunately, I had to reduce to 100mg this morning as my stiffness is worsening every day lately. However, it may be due to Levodopa which I started at the same time as B1 in Feb. I took Levodopa in 2017 for 1 month and a half and had to stop due to increased stiffness...
I stopped taking it for about a Week and felt better. I had been taking it for months without skipping a day. I know Dr.C has some people skip a day each week. This might be a good approach, since I think it may build up in our bodies. I do take cd/ld too.
Does cd/ld help you or do you feel it makes you worse?
I’ve had PD for at least 7 years and cd/ld helps with my rigidity/stiffness. I’ve taken cd/ld for the last 4 years
Hi Connie,
Thank you for your contributions. Your PWP journey has a lot of similarities to mine.
I feel like I have been living the life of a PWP guinea pig, trying anything and everything!
We have chatted about our experiences with C/L and Rytary and I have some updates to describe that I am kind of excited about.
I had been taking generic C/L 50/200 produced by Mylan Pharma. They stopped supplying my local pharmacy and I noticed this because the pills were a different color (beige instead of light blue). There was a difference in quality. I based this on an increase in off time during my day.
That was when my neurologist suggested I try Rytary. I switched to Rytary last March (2018) and had a number of bumps in the road. That is when I learned about “Stacking”, a characteristic of time release meds that I described as “stock piling” which was an accumulation of Time release meds that haven’t released.
This would happen at the end of the work day, and the effect was feeling amped up, aggressive, and inclined to crank up the music in my car and speed home like a mad man. This was scaring my wife and l knew it was happening, usually because a part of me was watching all this as if it was a movie. It was beginning to jeopardize our marriage.
So I switched back to generic C/L in December. We were going to Kauai, where I proposed, and at this stage, my behavior was scaring me!
No way to start a romantic vacation.
When I picked up my C/L prescription I discovered it was manufactured by Sun. It’s poor performance was extremely disappointing. It would wear off in less than 4 hours dropping me like a rock, and taking forever for new dose to kick in. I called all the pharmacies in the vicinity and discovered the only C/L available was made by Sun.
All this time I have been taking Azilect and B1 thiamin in pill form2-3 grams per day.
Didn’t consult Dr. C (but I am praying for him now.). Started up taking too much B1 then backed off like you did and settled on 3 grams Hoping to minimize PD progression. No dramatic results from B1, but I have found that many of the changes have been gradual and subtle as opposed to immediate and dramatic.
So I gave Rytary another try even though I think I was afraid of it, but I realized that I was taking too much. Originally, I was taking 4 caps 3 times a day. Now it’s 3 caps 3 times per day with the idea that I can taper to 2 It’s working on 5 hour increments.
Oops gotta go. To be contd.
I would definitely like to hear the rest of your story when you have time, thanks!
Hi Connie,
My apologies for the interruption. It turned into a busy Sunday.
So, as I mentioned, I decided to go back to Rytary. My neurologist and I came up with a reduced dosage and different time intervals. Basically 7AM, Noon and 5PM assuming I get up at 7AM. If I sleep in I adjust to maintain 5 hour increments.
So far, so good. Accuracy is important time-wisè and Rytary can be inconsistent and a bit uncooperative. It has stopped working 30 to 45 minutes before my 5 hour alarm goes off. Frustrating! But I have had a couple busy days with no drop off, no off time. Nice surprise. My timing is designed for doses to overlap to avoid off time. Not perfect, but not bad. Way better than generic.
So, my understanding of Rytary was gained with difficulty, but once gained through my experience I have been able to fine tune it. I taper down to two instead of three in the evening and have only experienced some stacking once in the last 4 weeks.
I do not expect this to be a formula for everyone. In my case I started out taking too much. Glad I figured that out Ann hope this helps anyone else who takes it. Easy does it.
Interesting what dosage do you take? How has your dyskinesia been? Do you take anantadine too?
3 capsules 48.75/195mg 3 times a day in 5 hour increments. Designed to overlap to avoid off time. Although I have had a dose fade out prior to 5 hours a few times, I also went close to 7 hours between afternoon and evening dose unintentionally with no drop off. Go figure! It can be less than accurate. Fatigue/lack of sleep can definitely be the cause of the inconsistency.
Thank you Mogul maybe I should give it another try. Our journeys have been similar. Am I correct in remembering that you also sometimes have dyskinesia? How has that been since you resumed Rytary? Also do you use Amantadine? Finally what are your thoughts on B1. Does it have any impact on your dyskinesia or rigidity. Thank you for reaching out it can be a confusing journey for sure and although I don’t like the stacking, I’m not getting as much on time as I’d like!
Happy to report “on” time up, dyskinesia down. Dyskinesia acts as an overdose indicator for me.
No, I don’t take Anantadine. Dyskinesia generally related to stacking. Meaning if I have too much Rytary in my system. Much more of a problem on first go round.
Hi
My husband has non tremor pd.He started taking 3 g a day and although that gave him strength to work, he suffered from exteme slowness.Wrote to Dr C after 2 months. Was asked to stop and tried again at 150g . It seemed to work initially but now hes become very stiff .Was told by Dr C he should take with CL. But he hasnt. Went to hospital.Was given requip but did not take it as there has been many bad reviews.Was asked to try neupro patch. Cant even do his trousers properly so i am wondering if he should lower his dosage and by how much.Somebody please help us.
• in reply toMogul1
Mogul1,
Your post has very useful information in it because it illustrates well how slowly or gradually some people respond to HDT while others like Ernie saw results on his very first dose of HDT and his results kept improving fairly quickly while others are even slower to respond to HDT with it taking three or more months before they see their first symptom improvement, but I don't think even with the lag time it took to see their first benefit, most will ever consider stopping HDT completely.
I am going to copy and paste your post to the "HDT Dosing" thread so others can benefit from your experience!
Thank you for posting it!
Art
Mogul1• in reply to
Thank you Art I finished my reply to Connie and would like you to read it.
Yes my husband has no tremor but terrible stiffness. He had a great improvement after taking b1. It really has made a huge difference. He is on 4 gs a day
Does he have dyskinesia? Thank you
• in reply tomunchybunch
munchybunch,
If you don't mind me asking, how much does your husband weigh?
Thank you!
Art
ConnieD• in reply to
Hi Art!!
You are the most knowledgeable about B1 on this forum, do you agree that at least here on HU it seems mostly to help those that are tremor dominant? Thanks, Connie 😊and Happy St. Patrick’s Day!☘️
• in reply toConnieD
I would say that we do not have enough information on this forum to draw a conclusion as I'm pretty sure I have seen posts that have shown HDT working for both variants, but whether it works for one better than the other, I can't say. While Dr. C could have answered that question for us, we will have to wait for his return to get that particular answer which I will add to the HDT FAQ page at that time.
Art
ConnieD• in reply to
Thank you Art!
munchybunch• in reply to
85 kilos
• in reply tomunchybunch
Thank you for that munchybunch! That 85 kilos = 188 pounds and using 4 grams of HDT per day. Roy is weighing in around 190 pounds which is fairly close to the 188 pounds that your husband weighs and they are both at 4 grams as their dose. I will add this information to the HDT Dosing page.
Thank you again for this dosing information!
Art
Hello munchy,
Thank you for your response.
Is he taking PD medication with his B1
How long did he take B1 before he got this huge improvement
Thank you !
It took 3 months to see a difference. He takes l dopa 3 Times a day but is convinced madopar makes no difference
Hi, my Parkinson's is not too severe just yet but I have found that the B1 had helped with my moods and anxiety and also my weight has stabilised since starting, prior to taking it I was steadily losing weight. I haven't noticed any improvement with my stiffness though. I am taking pd medication ( Kinson) as well as B1 which I am taking 1g of in the morning.
I have non tremor PD I don't see any benefits taken B1. I've tried since Aug
last year.
Hello Guy
Thank you for your reply.
If you ever start to get improvement on B1, can you please post (telling how long it took before it worked)?
For us few non-tremor dominant, this info would be precious!
Thank you !
I was tremor dominant, but thanks to thiamine tremor has improved so motor impairment is at least as much of an issue now. Not that motor impairment is gotten worse, it is improved too.
I am much less tolerant of levodopa due to dyskinesia, but that is okay because I need less. I take that to mean that my internal production of dopamine is improved.
I am non tremor dominant and have been taking high dose thiamine since last May -- within weeks of being diagnosed. I think it has helped with arm swing while walking, general rigidity, anxiety, and just having a sense of normalcy. My only tremor occurs occasionally when I intentionally try to point with my right thumb or index finger. I was just on vacation in Mazatlan and thought I'd be smart and take an extra 500 mg for a couple days because I was drinking more alcohol than normal. It could be coincidental, but my tremor and sense of well being worsened. I'm convinced I respond well and that 1.5 grams daily works best for me. I don't take medication, but do take several other supplements and vitamins.
If I may ask what supplements and vitamins you take
Hi Jim. What supplements have you taken? Are you on mannitol?
Hi, Millbrook. Take a look at my profile for the list of supplements. If I had to list the four cornerstones of my regimen, it would be exercise, intermittent fasting, high dose thiamine, and TruNiagen, but it's all just an educated guess. 😊 I do not take Mannitol.
Hi Jim, What made you decide not to take mannitol which I am on, but considering abandoning due to its powerful affect on the brain.
I'm skeptical because so many people dropped out of the ClinicCrowd Mannitol study. I know there were technical difficulties, but I believe people would have stuck with the study if they were benefitting. I tried it briefly, but it negatively affected my stomach....gas, etc. I may try it again, but I take so many vitamins and supplements now and I feel good so I'm not inclined to add anything. I hope you are doing well!
What are the powerful effects on the brain? Hubby takes it but I am not sure if it has any effect.
I think it works best in the earliest stages
I do wonder if where B1isn’t as effective it is because other nutrients are also missing. As the body starts to repair it may run into new road blocks once it has enough B1. Taking a multi like Hardy’s daily essential nutrients might help. It helped my husband.
Very interesting thought, ive read some of your posts about Hardy’s and it sounds great! Which product does your husband use? Thanks
The daily essential nutrients, greens and probiotics and Inositol. See my profile for the full list of other things he is taking, but big change occurred 3 days after starting Hardy’s. Worth a try!
He had DNA testing done and it said he had a great need for b2 and b6 too so that’s why I think some people might need other things too.
Thank you that’s important information. I will check your profile!
What were the changes that occurred after using Hardy’s for 3 days? Thanks!
His anxiety which had made him suicidal over the Christmas period and for for months vanished, he started smiling, became motivated, less fatigued, stronger, and not apathetic any more. Started doing chores around the house, working in the garden. Became interested in things where he had not wanted to join in anything with the family or do any activities that he had previously enjoyed.
He has handled the terrorist attack in christchurch much better than I would have expected. A bit down but then we all are and I think that is normal.
You are very wise my friend!! My difficulty is the dyskinesia high levels of B1 seem to increase the dyskinesia. I then drop my cd/ld down and for awhile things seem improved then I hit the wall of feeling worse so I drop the level of B1 again all initially with dr C’s advice only to go through the same thing initially improved then dyskinesia worsens as well as other symptoms drop my sinemet dose and feel better for a bit with less dyskinesia and it all starts all over again. That’s why I only take a small amount of B1. I’m so sensitive to sinemet and started dyskinesia practically the first time I tried it. Maybe injections Is better idk 😐
I have tremor dominant Parkinson's, and B1 has worked wonders for me. But I've heard some talk about streching out the dosage which I've been doing lately and I think I'm noticing better results. I take 4 grams a day, 2 grams in the morning, 1 gram four hours later, and another four hours. I weigh 200 lbs and 6'2" height.
Ernie,
I believe weight, age, and stage of PD should be taken in consideration when on HDT. Perhaps, when and if Dr. C. fully recovers and wishes to continue his email consultations, he will let us know if all these factors are relevant to improvements.
Art, your insight? 
My husband has been taking his dissolved in a bottle , with mannitol, extra b2, d-ribose, b3, inositol and some unsweetened black currant juice. He sips on it all day.
He doesn’t take as much though. He has 750 mg in the bottle and there is 60 mg in the Hardy’s daily essential nutrients. It might be too bitter to put as much as you do in it.
I think I should seek out the injections if I can find someone to prescribe it, also making sure as LAJ12345 points out that I should be sure I’m not lacking other nutrients as well. The fact that by taking higher doses of B1 allows me to substantially reduce my sinemet makes me think it must be doing something, I should also mention that taking all these supplements has started to be hard on my stomach. I’ve even given up Mannitol for now. Thank you Gio for your advice😊🌷
IMO sometimes with vitamins and minerals success does not depend on quantity but on completeness and synergy. In my case a packet of emegensC (but also the Hardy’s multi looks good, I still have to try it) more calcium magnesium sometimes makes a lot of difference, without exaggerating. Plus the b1 and honey because I feel the need (it contains minerals). Little expense so much yield!
Amantadine was a game-changer for my hubby’s stiffness and rigidity. (Dx with tremor-dominant PD 6 years ago.)
He takes HDT 2gms plus c/l 25/100mg three times a day and no dyskensia.
I would encourage anyone with rigidity resulting in pain or discomfort to discuss Amantadine with your physician.
It is underused in the treatment of PD.
It’s not just for dyskensia!
Good luck!
Hello Kattripp
Thank you for your reply.
I took Amandine for 3 months in 2017. It seemed to help a little with walking but adverse affects were such that they outweighted benefits. I had nausea that caused major weight loss, insomnia (sleeping about 3 - 4 hrs a night) and horrible constipation.
But I am glad it is working for him.
Thank you!
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