Vitamin B1 dose for an early PD patient?

[sutensera]

I am an early PD patient (diagnosed 2019) with mild symptoms which are aggravating! My main symptoms are stiffness and rigidity of muscle, sluggishness in actions, gait freeze and difficulty in turning in bed. I have no tremors (except dyskensia induced by levadopa)

I started on B1 Therapy recently and took 100 mg sublingual tablet on alternate days as recommended by Daphne Bryan in her book Parkinson's and the B1 Therapy.

Though it's supposed to be very mild dose, it seems to be adversely impacting my balance with no significant improvements on other fronts. Also when I take the 100 mg tablet, it causes immediate discomfort in stomach (pain and bloating)

I would like know if people have tried a milder dose of B1 and seen improvements in PD? The reason I ask this is because all anecdotes in the book (except one) refer to a much higher oral does (1.5 gms or more per day).

Thanks in advance for sharing your experience.

[park_bear]

People have reported Improvement on lower doses. The appropriate dose is highly variable.

[Axter]

Be careful because B1 sublingual tablets contain lactose, and if you are intolerant to this it could cause gastric problems.

[Zyzygy]

I am on 100 mg oral B1 HCL am and pm with B12 1000 mcg because I had neuropathy. Also take magnesium and B-complex very low in B6, and Lion's Mane mushroom. It has been a huge improvement for me across the board. I did OD once and it took a little time to find my proper dose.

[gdineshnathan]

My mom has the exact same set of symptoms you had written in the post. She is your age and also diagnosed post COVID in 2019. She tried B1 oral and went upto 1500mg, but she never showed any significant improvement in symptoms. Then we started her with 25mg B1 sublingual thrice a week, alternate days Mon-Wed-Fri. Just after a week , her legs started twitching and showed classical B1 overdose symptoms - increased fatigue. We stopped it. It has been more than two months we stopped. These days she started developing mild left leg freezing, whenever she initiates movement after a still stop. We are planning to start her on 25mg per week sublingual B1 and hope to see some improvements as time goes by.

[Hikoi in reply to gdineshnathan]

Is your mother on any other meds? Lev/carb?

[gdineshnathan in reply to Hikoi]

Yes. She is on CR Levadopa/Carbidopa 180mg per day, Ropinirole CR 4 mg, Amantadine 100mg per day.

[sutensera in reply to gdineshnathan]

Thanks. This is very helpful. What are some of the B1 overdose symptoms? Would like to know more about it.

[gdineshnathan in reply to sutensera]

Twitching, elevated fatigue, more levodopa induced dyskinesia. One interesting thing is, after we stopped her with sublingual, correctly after 5 days of stopping she said, she feels really better. I think probably her required dose is low enough. Hence our idea to start on a very lower dosage of B1 to see as how she reacts. She takes Magnesium Citrate, magnesium Glycinate as well on alternate days and Vitamin D once per month as supplements. Hope it helps.

[sutensera in reply to gdineshnathan]

Thanks. I took last sublingual (25 mg) day before yesterday and I am still having adverse symptoms like twitching and improper balance. What does of Magnesium is she taking?

[Markbit]

I'm following a few people with some rate of sucess on low doses B1 HCL. Sublingual is way more powerful than oral. Check my posts.

[smv123]

Has she tried PS128?

[Manou38]

Il faut bien laisser fondre la B1 sous la langue, moi je prends la moitié d'un comprimé par jour et ça me suffit car lorsque je prenais un comprimé entier de 100mg je bouillonais de l'intérieur. Maintenant j'ai plus de tonus je prends également 1 comprimé de Rasagiline et un patch de Neupro 8mg.