B1...... tremor has worsened with only 2 weeks of starting hdt therapy...

[Chicafromchitown]

But I am only taking 1 500mg capsule 1xday. I need advice on what to do, should I stop? If so for how long? I don’t know 🤷‍♀️ what to do, I don’t want to give up, it’s that normal that your pd symptoms worsen instead of improvement? Or that’s how it starts, from worst to better? If I was to increase dosage, to what milligrams? Thanks

[Hidden]

B1 has no affect on tremor

[Juliegrace in reply to Hidden]

But it is known to cause agitation, so that could possibly affect tremor.

[park_bear in reply to Hidden]

It improved my tremor after some months.

Every PWP is different.

[KERRINGTON in reply to Hidden]

In some way, when the stars are aligned, and my B1 is working well, my tremors are reduced.

[Farooqji]

it causes increase in tremor if dose is not correct

[Chicafromchitown in reply to Farooqji]

So should increase dosage or stop taking it?

[Farooqji in reply to Chicafromchitown]

tremors increase normally at higher than required dose. you should take a few days break and then restart with lower dose

[Farooqji in reply to Farooqji]

for further information search for the easily's posts on the subject

[JohnPepper]

Hi Chiafromchitown. To the best of my knowledge there is no supplement that has been scientifically proven to have any effect on the progression of Pd. No medication was ever designed to slow down the progression of Pd either. So, what are you left with?

The answer is EXERCISE and specifically FAST WALKING. I was diagnosed in 1992 and was prescribed Sinemet, with did nothing to slow down the progression. In 1994 I changed over to Selegiline and I stated doing fast walking. By 2002 I was able to come off the medication and at the age of 84 I have lived a normal life since then.

Look at my website - reverseparkinsons.net and contact me. I am sure I will be able to help you get better as well. It costs nothing!

[Chicafromchitown in reply to JohnPepper]

Thanks I will take a look at your website.

[sharoncrayn in reply to JohnPepper]

John, Why don't you give some of those people who want to try "fast walking" some specifics of what exactly you mean. IOW, 4 miles per hour? slower? faster?

[JohnPepper in reply to sharoncrayn]

Hi sharoncrayn. I thought that the statement, "As fast as you can" is the only thing that is correct for everybody. Whether you are male or female, young or old, short or tall, handicapped or not, you will be able to walk as fast as you are able, because you cannot go any faster.

BUT! if you are able to still speak more than two or three words to somebody, then you are obviously capable of walking faster.

If you cannot speak at all, then you are going too fast for the purpose, then slow down a tad and hold it at that level until you run out of steam.

To begin with, everybody has a limit to how long you are able to walk at that rate. It will vary from less than a minute up to the maximum of one hour.

The longer you do fast walking the sooner you get fit enough to walk fast for one hour.

When you are walking at your fastest the 'Fight or Flight' condition clicks in and your brain thinks you are in danger and produces GDNF and BINGO! You start the process of getting better. THAT IS WHAT WE NEED TO PUT TO A SCIENTIFIC TEST!

IF IT IS WRONG, THEN WHAT DID WE LOOSE? NOTHING!!!

IF IT IS CORRECT THEN WE WILL ALL KNOW THAT IT WORKS.

Whether you, as a Pd patient, are prepared to put the effort into doing the fast walking is YOUR CHOICE!

If not, then stick to the well worn current method of taking medication that does nothing to slow down the progression of your Pd!

[sharoncrayn in reply to JohnPepper]

John, many thanks for your input. I'm not a PD patient, but I do work with 2 PD support groups as an advisor. A few people are interested in your approach, but when someone hasn't done much physical fitness in their lifetime, it is somewhat difficult to begin. I have come up with a couple of strategies (like buy a dog and walk it every day). "Fast as you can" is the issue. I'll keep pushing it.

[JohnPepper in reply to sharoncrayn]

Hi sharoncrayn. It is never too late to start doing exercise. Surely the mere thought of soon heading to become bedridden should be enough incentive to start doing as much as any of us can to get fit again. I had to d that way back in 1960, when I sat on the curb of the pavement, unable to walk any further, because of exhaustion and pain, on my way to my doctor. I got there eventually and had a jab to relieve the pain caused by the back injury. I stayed like that for the next seven years, unable to avoid the sciatic pain and trying to do my job and live my life.

From there on I started to go to the gym and build up my strength and fitness again. Nothing is easy in this world!

First and foremost we have to believe that it is POSSIBLE! If we believe it is possible, WHICH IT IS. then we can go for it and give it everything we have.

[sharoncrayn in reply to JohnPepper]

John: my experience going back some 7-8 years with the 2 PD support groups I work with as a Ph.d. biochemist/neurology is that relatively few PD patients are really interested in doing any type of physical exercise. I have found this particularly true of those who are in their 70s and 80s. If they are, they seldom follow through.

I did go back and search my files on PD/exercise and found the VA study done in 2014 on the impact of moderate walking and PD which provides a parameter for moderate walking, which is... "The walking sessions met the definition of moderate intensity aerobic exercise, with the average walking speed approximately 2.9 miles per hour and with participants exercising at 47% of their heart rate reserve. " (47% of max HR would probably equal 90-100 HR). So I would assume anything more intense would fall within your "fast walking". Notably, this study was short lived but did show modest improvements across the board.

Can't find a citation on the 2005-2006 (was it published in 2004?) study you discuss elsewhere. Perhaps you can provide it when you have time.

[JohnPepper in reply to sharoncrayn]

Hi sharoncrayn. I would refer to give you all I can find by email. Won't you please contact me via my website - reverseparkinsons.net and I will send you everything I can lay my hands on.

[ddmagee1]

Exercise to elevate sustained heart rate, 5 times a week, for about 30 minutes, according to a well respected neurologist, in California, has been proven to be beneficial to Parkinson's patients, in that, it helps to slow down the progression of Parkinson's Disease.

[Chicafromchitown in reply to ddmagee1]

ddmagee1

I have to confess, that I’ve lived a sedentary life, I was too comfortable being a couch potato, up until yesterday that I got up to get my mail, upon closing the door I don’t what 😮 or how it happened but the next thing I know I was on the floor I felt backwards!!! the only thing I remember is feeling dizzy 😵 and that I couldn’t control my balance and felt. Later I checked my blood pressure it was very low, I attributed to b1 because this is not the first time that I’ve had my bp low

since I’ve started b1. Has anyone had this problem upon starting b1?

[Movingnow in reply to Chicafromchitown]

I think blood pressure problems can be a part of Parkinson's for some people.

[Goldencbc in reply to Chicafromchitown]

I have low blood pressure and B1 did not seem to make it worse. Perhaps you and your doctor should look at all your meds but your B1 sounds too high for you. B1 improved my balance.

[1953bullard]

My tremor has almost gone completely away. I think it’s the b1

[Chicafromchitown in reply to 1953bullard]

You’re one of the lucky ones👍

[KERRINGTON in reply to 1953bullard]

Hi..Can you tell me your dose, and if you are taking anything else ? Thank you

[KERRINGTON]

What's your dose, and what else are you on ? Thanks !

[Chicafromchitown in reply to KERRINGTON]

I am on: lorezapn, buspirone and Wellbutrin all antidepressants

PD Meds: 1 25/100 c/l 3x/day 1 Mirapex 2x/day and sometimes 1or 2 amantadine a day.

supplements: 1 500mg b1 hdt a day and a combo of magnesium, calcium and zinc every night and once in a while hemp CBD oil it used to help with sleep, but not anymore.

[KERRINGTON in reply to Chicafromchitown]

Hi CFCHT :} I think you meant to reply to someone else ?

[Chicafromchitown in reply to KERRINGTON]

I was replying to your question about my dosage and what other medications I was on. Unless you replied to someone else. But thanks anyway 🙏🏽

[KERRINGTON in reply to Chicafromchitown]

Ooh, thought I was asking 1953bullard that question ! Guess I'll try again. Thanks

[janers]

I definitely get internal tremors from too much B1 . And also I have suffered from serious pain in my arm which goes away when I eliminate the B1. People are swearing by it though so once the tremors stop and the pain goes away for a few days, I add the one 500 mg B1 back to my daily supplements. Here’s hoping for the best! May you find relief.

[Chicafromchitown in reply to janers]

Thank you 🙏🏽

[Grvarley]

Please read my post. I was told over and over again that my husbands dystonia was not due to his medication. After 10 years it was discovered that it can cause dystonia. My point is that medication can have a completely opposite affect than they are intended to.

[Grvarley in reply to Grvarley]

I'm a nurse and am so damn mad I didn't push for the removal of his med. I see the same of the carba levadopa for his tremor causing problems.

[Chicafromchitown in reply to Grvarley]

I was on Requip for almost 7 yrs upon stopping cold turkey my hell began, temporary I lost my mobility, became depressed up to the point where I can’t no longer live without antidepressants lost some of my strength on my right side I can’t clap or pat with my right hand I can’t get up from a chair without holding on to something, and all these troubles happened after stopping Requip. Or maybe it’s pd I don’t know 🤷‍♀️ but I am glad your husband is doing better. Thank you 🙏🏽

[Grvarley in reply to Chicafromchitown]

See you are the complete opposite of my husband because he had a reaction that was not to be expected. Why are off of it.

[Grvarley in reply to Grvarley]

I know that requip is going mostly generic

[Chicafromchitown in reply to Grvarley]

My old neurologist took me off it, but he didn’t educated me as to how to do it. Boy i’ll tell you some doctors just don’t even know what medications they give you God helps us.

[Chicafromchitown in reply to Grvarley]

Pardon my ignorance, but what is dystonia? What are the symptoms? and what med caused this?

[Grvarley in reply to Chicafromchitown]

Severe muscle contraction which caused my husband to bend his neck to wher his chin sits on his chest. It's a nightmare. The point is a medication can cause the cmpletly opposite affect of what it is it need to do. His medication, requip, is given to relax muscles and it caused severe tension and tightening. Listen to your gut if you ar not satisfied and look up the different things that can happen after taking a medication if you have doubts. Our lack of eduction at the time caused 10 years of irreversible damage

[ddmagee1 in reply to Grvarley]

Sounds like a nightmare for you and your husband. Sorry to hear that. I'm glad that you shared this, though, because I had a problem, with severe spasm in my jaw, that really hurt, and brought my chin down. It would come at the most inopportune of times. My Doc adjusted medicine doses, and I am mindful of exact timing and taking Parkinson's medicines. I haven't had the spasms, for about a year now, so I hope it is cleared up.

[Millbrook]

When my husband was taking 500 mg B1 it was still too much. Stopped 5 days and just restarted on 100 mg . Will stay at this dose for at least 3 weeks before increasing another 100 mg.

[Chicafromchitown in reply to Millbrook]

Millbrook

Do they sell in 100mg?

[Millbrook in reply to Chicafromchitown]

Yes they do on iherb.com

NOW brand

[BlondeButtercup]

healthunlocked.com/parkinso...

I found this site through this article. It should answer any questions you might have about taking Thiamine/ B-1 for Parkinson's. It does state that if starting this protocol and symptoms worsen you are taking to high a dose. It also gives a dosage amount that these doctors have used with their patients. I found it to be highly educating. I wish you the best.

[Astra7]

That high a dose makes me feel awful- really jittery and agitated. Just stop taking it and maybe start with just 100 mg a day building up a bit each week until you get a result.

I’m finding just 100 mg seems to help extend the on time and reduce dystonia.

Everyone seems to have very different responses.

[Goldencbc in reply to Astra7]

Astra, I also seem to respond best to 100 mg of B1. I keep thinking I should try to increase it because others are on such high doses but when I do, I don’t feel good...either jittery or joint pain. I’m glad to know that 100 mg is working for others as well. Thanks. Carol

[st8farm]

3-4 grams is my effective dose. Anything less and it might as well be candy. And yes, it did reduce my tremor significantly, along with several other markers (stumbling, falling, drooling, stiffness, bowel problems, etc.) Yes, that is 8 X 500mg capsules per day.

[Erniediaz1018]

Hi Chica, I take 4 grams B1 a day since August 2018. For me the B1 doesn't stop the tremors, the Mucuna pruriens does, but the B1 extends and enhances the relief 😌. Its a big balancing act though, you must get the dosage right. Stop for three days and start at a lower dose.

[Chicafromchitown in reply to Erniediaz1018]

Erniediaz1018I started taking same dosage (500mg) but every other day and it looks like it’s working (keep my fingers crossed) how long is this therapy for? Also do you stil take c/l with the mucuna? Thank you 😊

[Erniediaz1018 in reply to Chicafromchitown]

The B1 therapy is for life😁. No side effects that we know of yet. No I don't take c/l the Mucuna I use is 99% extract powder from nutrivita so in reality that's my levadopa.