B1, tremor, dose: Att: chartist Not to... - Cure Parkinson's

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B1, tremor, dose

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Att: chartist

Not to cause further confusion I share today’s experience. All night and all morning my tremors were bothersome. For example it was very difficult to type on my cellphone. For my noon dose of B1 I increased from two grams to three grams. Within the hour my tremors under control and typing possible. Was it dose or simply normal fluctuations.

20 Replies
chartist profile image
chartist

That's a tough one, Roy.

People have reported fluctuations like that, but usually mainly when starting out on B-1 and you have been taking it for years.

Dr. C always felt that after many months of regular use, you should be able to take a mini vacation from B-1 at anytime because there should be enough of a reserve as well as a certain degree of cellular repair that should be able to carry you for awhile. At a minimum, he had mentioned three days with no problems, but as much as a week or two and with someone who has been on it as long as you, he talked about a month or more with no B-1 and no problem. He said in other neurodegenerative disorders, he used higher dosing, but I never heard him say more than 4 grams for PD, so you are at the very top of his PD dosing range. Didn't you once test at higher than 4,000 mg / day? How did you react to that dose?

For someone on B-1 for years, Dr. C felt that it was no problem at all to miss a dose or two

Art

in reply tochartist

Today’s experience was very temporary

chartist profile image
chartist in reply to

Roy, recently you went off B-1, but I didn't see if you said how long you did that for. If it was long enough for all of your symptoms to return to their pre-B-1 levels, do you feel that those base symptoms were worse than or equal to when you started on B-1?

Art

in reply tochartist

I do not remember. Maybe a month. No symptoms returned.

chartist profile image
chartist in reply to

Interesting and pretty much in line with what Dr. C had maintained!

Art

laglag profile image
laglag in reply to

Roy, how are you feeling today?

in reply tolaglag

Feeling good. Except for lingering edema. Which I will discuss with my neurologist next week. Got more sleep in last night after I took capsule 25mg THC

Tempest22 profile image
Tempest22 in reply to

Edima brings to mind a book about Emanuel Revici Md . “ The Doctor Who Cures Cancer“ He talked of being in an Anabolic or Catabolic state. I can’t find my book right now. But it has a chapter on what you can do with what Revici learned treating cancer patients. Evening primrose oil has an anabolic effect. codliver oil has a catabolic effect. I think flax seed oil has a catabolic effect. I had a client who had bad edima. Taking and massaging in Flaxseed oil reduced her Edima.

I’ll try to find my copy of the book.

ParlePark profile image
ParlePark

B1 has never been beneficial for tremors to me. My tremors are very random. Some days much worse or better than others. I’ve been from 500-4000 mg testing. Settled on 500 mg. Dr C wrote to me stating could take off weekends or similar and would not effect dosage

Gioc profile image
Gioc in reply toParlePark

I agree , IMHO tremore are matter of LDopa use.

LuckyLuke profile image
LuckyLuke in reply toParlePark

Mee too. Tremors is related to L-dopa fluctuations not B1

Kattripp profile image
Kattripp

Roy, I have noticed that the “ end of the bottle” of B1 does not seem as effective as a fresh new bottle. Ken uses Vitacost brand which has 300 capsules. At four capsules a day, it lasts a long time. Started thinking that opening the bottle daily x 75 days might be degrading the vitamin!

Now I put a limited amount in a separate container and work off that, refilling only when needed.

Doing the same with his c/l and Amantadine.

Not sure if this has anything to do with your situation but it is something to be aware of, especially as we fill RX for 90 days. and B1 bottle lasts a long time.

Heat and humidity can degrade any medication.

Be well!

Gioc profile image
Gioc in reply toKattripp

This is true, I find many old and poor vitamins on the market that are not as effective as others.

Pa-zzi69 profile image
Pa-zzi69 in reply toKattripp

I use a pillbox container for one week, so I only open the B1 Vitacost bottle once per week...

bassofspades profile image
bassofspades

A rescue dose of B1 could not work that fast. Honestly, i suspect it was the placebo effect , which pwp are very much susceptible to . Feel better Roy!

ion_ion profile image
ion_ion

I stopped B1 for the last four days and my tremor is almost gone. But I know I have to restart it and probably I'll go 500mg/day for a while. I started 2g/day two years ago, cut to 1g/day an year later and now I'll go with 0.5g/day to see what happens.

chartist profile image
chartist in reply toion_ion

ion_ion,

I remember when I wrote the post about forum members having to reduce their dose after 6 to 18 months on HDT/B-1, I speculated that it was possible for that same situation to happen again somewhere down the line and now here you are! Here is a link to that post :

healthunlocked.com/parkinso...

Please keep us posted on how your new dose goes!

Art

ion_ion profile image
ion_ion in reply tochartist

At this moment I'm at 0.5 g/day and everything looks very good but it is only for about a week. I need to see after 4 weeks how things are.

BlueHawaii profile image
BlueHawaii

I am confused by the widespread statements about tremors. How could people go unmedicated for 2 weeks, and others are effected by missing one dose?

Ronshere profile image
Ronshere

Any thoughts to reporting approximate body weight to B1 doses? I am imagining a rough relationship, which would then be a bit of a guide for all of us...for instance I am male and do 1gm B1 daily and weigh about 145 lbs...Along with sinemet and lots of other vitamins, I am doing pretty well.

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