Giving regular Thiamine HCl / B1 another go, stopping Sublingual B1.

[bassofspades]

Hi Friends! Just thought I'd bounce this off you.

I used to take Thiamine HCl B1 as directed by the master, Dr Costantini via email. I was on a daily dose of 4000mg, divided into 2 even doses. I felt amazing, and had hardly any progression of the disease for years. The only problem was my blood pressure went into the hypertension zone. I had to take 2 medications to control it. At the time I didnt realize that the high blood pressure was from the B1 regimen.

At one point, I learned about Sublingual B1 and gave that a try. I cut down to 100mg twice per week. My blood pressure went back to normal and I got off the medications. Thats how I figured out it was the Thiamine that was causing it. But after a while, I noticed my symptoms were changing. On the days that I took the sublingual, my tremors were terribly worse. I tried tweaking the dose to half a pill, or 50mg twice a week. Still bad. Down to 50mg once a week, still just as bad. 25mg once a week, still bad! It made me come to the conclusion that with the higher efficiency of absorption that sublingual gives you, I was bombarding my system with B1 (B1 bomber?) and this was the reaction. After 2 or three days, the terrible tremors would die down. I stuck with this for a long time, hoping my system would adjust. I spent a year and a half playing with different doses, but it wasnt working out.

I took a few weeks off and ordered another bottle of Vitacost Thiamine HCl. This time, Im going to start really low. I am trying 500mg per day, every day. I took my BP and it was on the high side of normal.l I will continue to monitor. Too soon to say if my symptoms are getting better. I dont get the terrible tremors when I take it though, like I did with the sublingual. I'll take the 500mg a day for 6 weeks, then reevaluate. If my pressure is good and my symptoms still look like they need improvement, I'll go to 1000mg . My goal is obviously to see what the maximum amount of B1 is that my pressure can handle safely, and stay at that level.

Hope everybody is doing well! Happy Halloween!

[rsacdoolittle]

BassOfSpades, happy to hear you are in touch with your body and symptoms and trying this again!

[bassofspades]

A few days on 500mg and my pressure was 140/74 today. So disappointing!

[STEWBABY in reply to bassofspades]

NOT THAT BAD!! BOTTOM LINE EXCELLENT. TOP LINE A TAD HIGH BUT WORTH STICKING WITH! PERSONALLY I'D TRADE AN IMPROVEMENT IN PD AGAINST HIGH B P. AT LEAST THERE'S MEDICATION OR EVEN NATURAL REMEDIES OUT THERE TO SORT HIGH B P.

[bassofspades in reply to STEWBABY]

Trying a few different things, like doubling up on magnesium and increasing my walking regimen.

[Erniediaz1018 in reply to bassofspades]

drink at least 3 L of water a day

[Gallowglass]

This sounds a lot like me! Parkinson’s changes over time. Maybe it’s time for Carbidopa/Levodopa? B1 is not a substitute for C/L. Do you have a good neurologist or doctor who knows Parkinson’s? If not, it’s worth a long drive to see a good one. So do research before making an appointment. Will be praying for you to get this figured out.

[bassofspades in reply to Gallowglass]

Im on cL already and plenty of it

[Gcf51]

My GP Changed my HBP Meds and I started walking. I have dropped 30 points on BP. My sweet spot is 1000mg B1hcl oral. I tried Sublingual, for me holding in mouth 45 minutes was too much of a hassle....

[Kat343]

Hi Bass. I am wondering if you could point me in the right direction for resources on B1 and high BP. My husband recently in the pats few months has incredible swings in BP at times. I do have him on sublingual B1 every other day, and have been varying that dosage to maybe 2x a week, but does not make any difference. I can't find anything on B1 and high BP, in fact, what I did find what the a B complex vitamin may be overall good for hypertension. I'd sure like to know, I am taking him off it and wanted to start the HCL after a couple of weeks. Thanks of your post!

[bassofspades in reply to Kat343]

To tell you the truth, I don't have any resources that I can cite. Only what I am experiencing through trial and error. It's been a week since I have taken any B1 and my pressure is all over the map, from 145/80 to 110/75 yesterday. Im really not sure what is going on. All I know is that when I was on a consistent high dose every day, I felt great but my pressure was consistently elevated to the point that I was required to take meds to correct it. When I switched to the lower dose sublingual, my pressure was stable without meds but my Parkinson's symptoms, especially tremors, were much, much worse. Suffice to say, I don't know what the heck is going on. I'm still working on it, and, unfortunately my doctor has no clue how to handle this either. I guess I am in uncharted territory. Good luck!

[Ob6842 in reply to bassofspades]

My suggestion would be is to join the Facebook group Parkinson’s B1 Therapy, the author of the book started, and ask them. Sergio might be able to help! Good luck! I’ve only been on B1 for 6 weeks, and have already seen improvements! I’m a believer!

[bassofspades in reply to Ob6842]

Good for you! Ok I joined. Thanks friend!

[Gioc in reply to bassofspades]

😊

[Kat343 in reply to bassofspades]

HI Bass, have been away... one thing you may try to lower BP is called Box Breathing. It works about 60% of the time for hubby. Imagine drawing a box with your finger. As you move your finger along the first side, breathe in for a count of 4 seconds. Now hold it for a count of 4 as you make the second side. Now for the third side of the box, breathe out for a count of 4. Last side of the box, hold it for 4 counts and repeat the box. The finger motion is just a reminder aide, but helps with the focus. Do 7 to 9 cycles each time, calm and relaxed. Wait a few minutes and take your BP. If it does not work the first time, just do it again. Try it! It may be a helpful aide to your meds. And yes, we all need good luck!

[Gcf51]

By blood pressure went sky high with TTFD... Went to hospital a couple of time with over 200.

I walk now, 3 to 5 days a day. Went from average of 145/80 to 115/60 and dropped one of my BP meds...

[bassofspades in reply to Gcf51]

Ttfd? I think the recommended is thiamine HCl.

[Gcf51 in reply to bassofspades]

TTFD was not recommended in the book "Parkinson's and the B1 Therapy" or Dr. Costantini's work.

[chartist]

Bass,

You might consider boosting your potassium level and I am not talking about 99 mgs, but significantly more to try and get better control on the blood pressure while using HDT.

Art

[bassofspades in reply to chartist]

couldnt hurt, right? I already take it with Magnesium

[chartist in reply to bassofspades]

I think it is the amount that will make the difference.

Art

[bassofspades in reply to chartist]

I just started looking into this and I am seeing dosages in the 4 grams range. You weren’t kidding! Thank you my very smart friend!

[chartist in reply to bassofspades]

Yeah, I don't think your doctor will be mentioning the kind of dosing needed to alter blood pressure and the fact that manufacturers are limited to 99 mg pills and capsules just confuses the issue further.

Art

[Erniediaz1018 in reply to bassofspades]

the recommended daily allowance for potassium. Is over 4500 mg.

[bassofspades in reply to Erniediaz1018]

“I’ll have a dozen bananas, please!”

[Mandoblast in reply to bassofspades]

I just use the fake salt. Also I'm a hybrid b-1'er: dissolve regular oral tabs sublingually. a quarter-tablet (25mg) is mostly gone in 10-15 min. Not much of a saliva puddle.

[chartist]

That's a whole lot of spinach and bananas that someone is going to have to eat to get there everyday!! Is it true that RDAs are often lower than they should be?????

And btw, my doctor never told me this :

ods.od.nih.gov/factsheets/P...

A relevant quote from the article :

' Higher potassium intakes have been associated with a decreased risk of stroke and possibly other cardiovascular diseases (CVDs) [16,49]. A meta-analysis of 11 prospective cohort studies in 247,510 adults found that a 1,640 mg per day higher potassium intake was associated with a significant 21% lower risk of stroke as well as nonsignificant lower risks of coronary heart disease and total CVD [39]. Similarly, the authors of a meta-analysis of nine cohort studies reported a significant 24% lower risk of stroke with higher potassium intakes and a nonsignificant reduction in coronary heart disease and CVD risk [50]. '

This might be information a doctor would want to share with a PwP patient as they are at increased risk for stroke as discussed here :

movementdisorders.onlinelib....

A relevant quote from the link :

' Parkinson's disease (PD) is associated with an increased stroke risk, '

Art

[bassofspades in reply to chartist]

Thanks Art, that is great! I basically am my doctor. The guy i see for checkups and ordering labs just wants to refer me to specialists for everything and put me on multiple bp meds for 140/80. Ugh.

Hey, check this out - I go to the gym 4 or 5 days a week and when I go, I take a supplement that has ginseng, ginkgo and beet root powder. I often go to the supermarket on my way home from the gym and check my pressure on their machine. When I took it today it was 119/83. And I started taking my thiamine and mag at lunchtime together instead of the thiamine in the morning with coffee, which I heard negates it, and the mag at night. Going to keep monitoring closely and be mindful of my potassium .

One more thing, to all you readers out there who have kidney issues- please don’t take too much potassium, or “K” as I like to call it!

[bassofspades in reply to bassofspades]

Hey I just remembered, I used to see this amazing young chiropractor when I lived in Ohio, and she had this concoction that she recommended as a pick me up drink. It was orange juice, sea salt and CREAM OF TARTAR (for potassium)! Cream of tartar has about 500mg potassium per teaspoon! Lemon meringue pie, anyone? facebook.com/hartchiro/vide...

[bassofspades in reply to bassofspades]

Here’s Dr Hart talking about the subject of potassium and bp! facebook.com/18876864914503...

[chartist in reply to bassofspades]

It can help with kidney stones and is generally only a problem when too high or too low. Staying near the RDA for intake should be safe, but many people do not get to the RDA on anything resembling a regular basis.

massgeneral.org/children/ki....

A relevant quote :

' Have high amounts of potassium (more than 350g per serving). Eating foods rich in potassium helps prevent kidney stones from forming. Some foods that are high in potassium are bananas, cantaloupe, honeydew melon, orange juice and papaya. Some foods with medium amounts of potassium include raisins, strawberries, watermelon, peaches and grapefruit. '

everydayhealth.com/kidney-s...

A relevant article quote :

' People who eat a diet low in calcium and potassium may be more likely to develop first time and recurrent kidney stones, according to a new Mayo Clinic study. '

kidneystones.uchicago.edu/2...

A relevant quote from the article :

' Diets high in potassium or relative abundance of potassium compared with animal protein could represent a means of stone prevention '

Art

[bassofspades in reply to chartist]

I was actually referring to renal insufficiency but good to know!

[bassofspades]

update for those who are following -

I recently increased from 500mg Thiamine HCl to 1000mg daily at the same time as a Magnesium supplement and my pressure has been stable. I have been checking it daily. I take this around noon with food. I am being mindful of how much "greens" Im eating in an effort to increase my Potassium intake, so Im eating at least 2 big handfulls of Aldi supermarket brand Simply Nature Organic Spring Mix. Probably the equivalent of 4 -6 cups. A huge box of this is about $4 and its awesome (if you like lawn clippings!) Also have been trying to get in an Avocado a day. Small one.

Without even trying, I am down to a few sips of coffee in the morning. I never finish my cup, and I am experiencing a dramatic boost in energy. Also, since I stopped taking the sublingual B1 and went back to the regular oral capsules, my tremor situation is improving a great deal. I am also finding that I am in need of less sleep, since Ive been falling asleep easily and waking up an hour or more, sometimes 3 hours early - and still making it to the gym 5x a week and doing all the housework and errands, running around.

[Lovemycat5871]

Are you still taking 1000 mg Thiamine HCL daily at noon-ish? I am interested in what amount of magnesium (and type) you take with it, as well.

[bassofspades in reply to Lovemycat5871]

Now I take 500mg 3x a week. I’m always tweaking it. My pressure was creeping up again. For the magnesium I take this Vitalitown Magnesium Complex, Magnesium Glycinate, Malate, Taurate & Citrate, Chelated Forms, High Absorption, Bone, Heart, Muscle, Immune, Energy, Sleep & Digestion, Non-GMO a.co/d/0Gxe9T8

[Lovemycat5871 in reply to bassofspades]

Thank you for the info.