My most significant symptom is the tremor of RH as the other were relived by B1 HCL. I'm trying C/L for about month and half (2x100/25 a day) but it does not seem to help much with the tremors. I stopped it for a week and I did not noticed any difference with any symptoms but still I resumed it anyhow. Depending of the momentary stress my tremors are almost nonexistent or more intense sometimes noticeable. If I stay in a fully relaxed state it seems the tremors lower in intensity or they stop if my focus goes away making some doctors to think I have ET. But ET is a symmetrical tremor , mostly when initiating a motion; my tremors start when not in motion or in very slow motion, actually when the hand is "in gear". They almost stop when in fully relaxed state - hand not in gear or in park mode - or when moving a little faster. I noticed slow exercising helps with the tremors while intense exercising is exacerbating them.
I would like to know how other people are controlling the tremors and what means they use like medicine, devices, supplements, acupuncture, exercising, massage etc.
Thank you everyone!
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What you have described is the Parkinson's tremor as I know it.
Mine seemed to get better slowly over some months which I attribute to taking high-dose thiamine.
My tremor is controlled with C/L ER 50/200mg three times a day. With night time, around 4am, my tremor would keep me awake. Last night I took another dose 2am. I slept well through the remaining morning. Dr.Fahn youtube about l-dopa suggests higher doses missed by most doctors/pwp. Doc. Costantini tells me no dyskinesia will result as long as one is also on high daily dose thiamine hcl.
Thiamine hcl? Minimal effect but before I started hcl my tremor was so terrible one night I went to hospital ER in desperate search for relief. I cast my vote for the combo CL with thcl.
I remember when that happened. What did ER do for you? I begged my husband to take me to ER about a month ago thinking I needed a sedative or something, but after a couple of hrs he got it calmed down by walking me around the house & massaging. We're thinking it might be more stress related rather than the PD. My internist's PA gave me some Xanax & it seems to be helping. Can't get in to see my neurologist until Mar 14th.
People with Parkinson's should not go to the ER for medication or medication adjustment because they have no idea what to do about it. The purpose of the ER is to treat people with life-threatening emergencies. Parkinson's might seem that way sometimes, but is not on their agenda. I have heard of people with out-of-control Parkinson's going to the ER, getting worked up for stroke, and then simply sent home.
I wish that were true but it has not been my experience. I have become completely intolerant of levodopa during the day since starting high dose thiamine. If I take any levodopa at all during the day it makes my leg on the affected side jerky. I am willing to accept this restriction on taking levodopa because I am so much better overall with the high dose thiamine.
I am doing okay, no need to feel sorry for me. I take one generic Sinemet CR in the evening and an MAO–B inhibitor in the morning. I only have mild intermittent tremor and some motor impairment.
I think (and I may be wrong) that Dr. C has indicated that PWP who start early on HDT have a better chance of not developing dyskinesia. When I was emailing back and forth with him he never said that HDT would eliminate my dyskinesia. I am skeptical of claims that "you'll never" have dyskinesia if taking HDT. I think it's more nuanced than that.
I take nutrivita 100% ldopa from Mucuna pruriens with 2 grams of B1 twice a day, and that gives me complete tremor relief for four hours. I take sinemet once in a while when I'm out and about but that doesn't really work although it brings some relief. I had dyskinesia at one point but about a month into using B1 it disappeared.
I was prescribed Amantadine for my tremors along with Selegiline and Ropinerol all of which did nothing for my tremors and gave me awful side effects. The doctor wanted to prescribe more medications to treat the side effects rather than discontinue medications causing the side effects. Sinemet 25/100 caused dyskinesia of my unaffected left leg within two weeks. I no longer take any prescribed medications. I have been taking high dose of vitamin B1 since July 2018 and have found that my tremor has diminished significantly. I take 1 gram twice a day.
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