Anyone have positive results while using Thiamine that has foot dystonia

[Softballman]

I’ve on this site for 2 weeks and I have found it very helpful. Close to 6 years with PD and for some reason avoided PD forums. Now I’m all in. Now I’m looking into Thiamine and wondering if anyone has had positive results with foot dystonia (mostly toes cramping curling). It first started about a year ago with toes cramping in the morning and now sometimes between L/dopa doses. Usually on the days the L/dopa doesn’t seem to be performing well which is about 30% of the time. Thanks

[Dehlia]

I’ve had good results with the toe curling problem. I take 500 mgs. B1 twice a day and quit C/L. Instead I take Mucuna 500 mgs. Twice a day. My toes will still act up occasionally and my tremor is more noticeable but I’m not in the stupor C/L had me in for 3 years.

[TL500 in reply to Dehlia]

Hi Dehlia, so overall you still feel better with manuca than with c/L?

[Dehlia in reply to TL500]

Glad you asked. I’m back with C/L but only 1/2 or 1 25/100mg in the morning.

I find it’s the only thing that stops the tremor. The rest of the day Mucuna unless I start shaking at work, (usually stress related), then another 1/2. Of course I’m taking B1 but I’m one of those that can’t realize if B1 is beneficial.

I keep the c/l dose low so it doesn’t curl my toes.

[TL500 in reply to Dehlia]

Thanks.

Is 500mg Mucuna average dose?

[Dehlia in reply to TL500]

I’d say good for starters. Not to high or low. If it exasperates things stop start in one week with 250 2X Daily

[TL500 in reply to Dehlia]

Thanks. I'm onC/L (Kinson) 100/25 at the moment. Haven't tried Mucuna.

[etterus]

I have been on 2-3 gms/day for six months. Recently I read that it would be wise to take a 48 hr break from b1. I did so and regretted it. On the second night I had virtually no sleep due to foot dystonia and nocturnal “uringency “. I’m still having constipation issues a week later.

I am thinking about upping the dosage. I’m a 71 yo male with nontremor PIGD 20 years duration, and DBS 5 years ago.

[ConnieD in reply to etterus]

How helpful was dbs? Thank you 😊

[etterus in reply to etterus]

I don’t think I would want to be alive today with out it. My quality of life was dismal.... crawling to the bathroom 5 times a night sitting for 15+ minutes to pee and crawling back.

If you’re interested find the best surgeon and rehab plus programmer team you can

[Softballman in reply to etterus]

Thanks for you reply. Not sure if you indicated that Thiamine was beneficial for dystonia.

[etterus in reply to Softballman]

I think it is helpful but it’s a multifaceted issue.