Today I visited my new neurologist. Recommendations:
Melatonin for sleep.
C/L, 25/100mg, instant release, 4 times daily. Low dose more frequently best approach. Avoid high dose controlled release except at bedtime.
Expressed surprise, after tests, how well I am. She is open to learning more about B1-thiamine.
Hi Roy, I'm very happy for you. Did you find the right new dose of B1?
I have returned to the original dose, 4g daily
How long did it take to work up to 4 gm/day?
Started at 4g
I remember reading your older posts and saw that you started with Benfotiamine and then went to HCL with Dr.C and then after a while on HCL you mentioned thinking about going back to Benfotiamine and later combining TTFD+HCL. Could you explain the difference, if any, throughout your experience and why you eventually settled on HCL?
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Hi Roy! I take 10 mg fast dissolve melatonin for sleep & 1ea c/l 25/100 reg release & 1 ea 25/100 cR at 6,9,12,3 & 6...seems to work except when I eat bread, rice or protein within an hour of meds. Diagnosed in 2013. How long have u had PD?
Dx 2012
Following in your footsteps, Roy, that’s terrific!
Ken has not tried c/ l CR for bedtime yet, but uses immediate release c/l.
Thiamine HCL has been a game-changer!
Our MDS was open to reading info about HDT that we gave him and was also surprised at how well he was doing. But can not recommend it as not the “standard of care.”
So it’s up to us to spread the word!
What is your daily dose of B1 and how long did it take to build up to it?
Ken takes 1000mg before breakfast and 1000 mg one hour after lunch with his c/l 25/100 so total Thiamine HCL is 2000mg.
He started at 3000mg but tremors seemed worse, so settled on 2000mg and over 2 weeks, saw much improvement. Smile improved, gait improved and arm swing returned.
Voice was stronger. Improvements have been sustained and his total c/l 25/100 three times a day has not increased.
His only other PD med is Amantadine 100mg twice a day (Bionpharma Inc is the manufacturer that does not lead to side effects for him but prevents nearly all rigidity.)
He was diagnosed 7 years ago, and has been on Thiamine HCL for 1.5 years.
Good luck! Left foot, right foot...
Melatonin, I have crazy tremors f I use it.
Dr. Mischley makes similar recommendations.
Well done to you...
Hi, I'm still wandering : how is constant and instant release indicated on the box ???
(if you use of course the brand : "Madopar")
For Melatonine I use at evening : a suppository from "Zetpil"
Slow release can be listed as CR controlled release or in france Long Duree. Says on box
Roy why are you to avoid long acting levadopa except at nght? Did he give a reason?
Avoid hi and lows
Okso that suggests that with immediate actiing you avoid highs and lows and I struggle to see that. Park bear wpuld say the opposite, that long acting avoids highsand lows. I am trying to see why long acting is not favoured over shortacting meds. Im not trying to putyou on the spot, just to make sense of it all.
I don't think it is possible to go wrong with melatonin, any way you use or combine it.
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