Thanks and keep information coming - Cure Parkinson's

Cure Parkinson's

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Thanks and keep information coming

Annieartist profile image
14 Replies

Love hearing from you all. Can’t work out what’s happening- suddenly winter is here and I’m cold. Very excited planning second stage of proposal for this award. Don’t think I’ve overdosed on B1 but for 2-3 days I’m tremoring, shaking, stiff - haven’t been this bad for 2 years. Reminds me what PoD can be like - hideous

By suggestions?

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Annieartist profile image
Annieartist
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14 Replies
chartist profile image
chartist

Annieartist,

When I first started corresponding with Dr. Costantini and he explained his protocol to me so I could pass the information on to my friends with PD, I decided to experiment with B-1 myself to see how it would affect me. At that time, 4 grams was the highest dose he suggested to me for PD. Based on that, I experimented at doses ranging from 500 mg/day right on up to 4,000 mg/day for weeks at each dose level. What I found was that I started to develop tremor in my hands and fingers the higher the dose I took. At 4 grams/day, the tremor was worst and I also felt edgy or jittery and after a month at that dose, I stopped. I did this experiment because I felt that if I was going to recommend HDT to my friends with PD, then I wanted to have an idea of what they might experience at these high doses.

The point of this is that too much B-1, even in a non PWP, can potentially be a contributing factor to observable tremor. I don't know how long you have been on B-1, but a growing number of B-1 users on this forum are reporting a worsening of symptoms in the 6 month to 18 month range of constant B-1 use and Dr. Costantini's solution was a slight dose reduction after taking a one week or longer break from HDT. In the case of Kia17, he took a break from B-1 and then resumed at the same dose he had been taking, but he took one day off per week of the B-1 at Dr. Costantini's direction and that was all it took to get him back on track. Another suggestion that Dr. C offered was to take a few days to a week mini vacation from B-1 every three months or so and I think part of the purpose of these mini breaks was to help prevent excess B-1 and possibly prevent a worsening of symptoms from ever appearing in the first place.

Art

Annieartist profile image
Annieartist in reply tochartist

Thanks - its always so hard as there are so many variables and I often try too many new things within a short length of time. I wonder if it is too much B1 as I think I am quite jittery.

If I knew I could sort it out soon I wouldn't mind as occasionally I need to know what Im up against and I have been so well lately!

Grumpy77 profile image
Grumpy77 in reply tochartist

Since you don't have PD, I'm curious to know if the tremors you experienced induced by B1 is asymmetric OR symmetric ? Thanks

Annieartist profile image
Annieartist in reply toGrumpy77

Is that one sided or two? My tremor is right dominant but what I have now is affecting right side worse but I can feel it ( internally) both sides

Grumpy77 profile image
Grumpy77 in reply toAnnieartist

Apologies for the misunderstanding, but i was directing that question to chartist (Art), because he doesn't have PD and yet B1 induced tremor on him, so i'm interested in knowing if this induced tremor mimics essential tremor or pd tremor

chartist profile image
chartist in reply toGrumpy77

Grumpy,

I guess the correct way to say it is that I have never been diagnosed as having PD. The tremor I experienced seemed equal to both left and right hands and fingers and the edgy feeling was probably somewhat like a type of anxiety or nervous feeling like I could not relax or feel comfortable. The tremor was present whether I was moving or not moving my hands and seemed to be present all day, but I don't know about when I was sleeping. If it was present while I was sleeping, it was not strong enough to wake me up. I would describe it as a tremble instead of a tremor because my friends with PD have much more hand movement when their tremors are strong, I didn't have that strong of a tremor. The closest I have ever experienced to it would be when I was T-boned in my truck and several people stopped to give their information as witnesses and my hands were trembling enough so that I could not write down the information and they had to write for me. Generally a very uncomfortable feeling and though I had initially intended to go longer than a month at the 4 gram / day dose, one month was enough under those circumstances.

Art

Grumpy77 profile image
Grumpy77 in reply tochartist

Wow, hope you have fully recovered from the hand tremblings

That was very brave of you to be an experimental guinea pig on behalf of PwP

Kudos!

As a by-note there are other medications that could also produce tremors at some dosage level and it has been well documented in the past. One example is SSRI’s such as Zoloft. It is a case of damned if you do and dammed if you don’t.

park_bear profile image
park_bear in reply to

There are a number of psych meds that can cause tremor.

Grumpy77 profile image
Grumpy77 in reply topark_bear

Are these asymmetric tremors or symmetric tremors?

park_bear profile image
park_bear in reply toGrumpy77

Good point. I have not sought out reports at that level of detail. I would guess symmetric.

MBAnderson profile image
MBAnderson

Could be the stress and anxiety around the award plus the cold of winter is worsening the tremor and other stuff. It was 21° here this morning when I walked my dog and warmed up all the way to 34° this afternoon here in St. Paul, MN. The cold worsens all my symptoms.

Grumpy77 profile image
Grumpy77 in reply toMBAnderson

Are you talking here of Celsius or Fahrenheit?

rescuema profile image
rescuema

You might want to try p5p and b12 sublinguals to see if they have an immediate effect. Take b6 away from B1 and levodopa/carbidopa at least several hours. Tremor can be due to b12 or magnesium deficiency, and b6 is needed to absorb these while b1 overdose can also reduce b6.

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