Has your tremor resolved, stopped on its ... - Cure Parkinson's

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Has your tremor resolved, stopped on its own?

RoyProp profile image
RoyProp

Tremor In Parkinson’s

How long did you have Parkinson’s when tremors stopped for good?

“It also appears to be the case that tremor is the only symptom of Parkinson’s disease that may improve on its own — some who had severe tremors have seen them virtually disappear over the period of a decade. Tremors also rarely continue to worsen beyond a certain point — at some point the tremor will plateau.”

42 Replies

Roy, the tremor is the only symptom I have now after using HDT. The C/L 400 mg a day is partially helping. I'm taking 1g HDT now but I was on 3g and 2g. I noticed the higher the B1 dose the more intense the tremor is. I know you take a lot of B1 (6g before and 4g now). When I was taking 2g I noticed if I was taking a break for few days the tremor was going down. Did you try that experiment?

Roy, my tremor definitely gets worse if I take too much B1. I've been taking 1g/day (with slight variations now and then) since November of 2018. I can't take more than that. FYI, I currently weigh 105 lbs.

Tremor is my most significant symptom, and I've had no luck controlling it yet. Sinemet and mucuna haven't helped.

I did to for a while. What brought it under control was taking meds(C/L) 1 hour prior to eating (breakfast) and eating 2-2 1/2 hours after meds( other meals or snacks) with protein.

That's *exactly* what I was doing, and it helped my other symptoms (left hand/arm bradykinesia, rigidity, dystonia), but not tremor.

Sorry to hear. Did you discuss with your doc?

I have an appointment with him in April. I told him (via MyChart) that I was switching to mucuna, and he was ok with that. I'm hoping to make some progress with it before I see him. I'm still experimenting.

Patrickk profile image
Patrickk in reply to ParlePark

That's what anyone on C/L should do. Protein "jumps the line" on C/L and gets into your system first -- not sure if med all get there then. Best I can do is no protein an hour before or after eating.

ParlePark profile image
ParlePark in reply to Patrickk

I think we are all different regarding digestion of protein. If I wait at least 2 -2/12 hours after eating a noticeable difference. Over months.

Patrickk profile image
Patrickk in reply to Patrickk

Opps; that's no protein an hour before or after C/L.

I know what you mean. The tremor is debilitating and ruining my life. I take l/c with little success. Have tried many other meds in combination etc. with no luck. Such a feeling of gloom and doom.

hi ihateparkinsons:

I know some PWP don't respond to c/l for tremors, but I wonder if you took a "sufficient" dose? I think most people have a "therapeutic threshold" (of levodopa blood concentration), and if they don't reach this level, they won't get any relief from their PD symptoms...

RoyProp profile image
RoyProp in reply to Levod

I think that is true

Yes I have tried higher doses of C/L with and without combinations of other meds. CDB does nothing for me but THC does, but cannot use legally so I don’t. Legal in some states but not mine.

I will ask a slightly different question than Roy - what is the max mg of c/l you took for a single dose?

50/250 mg 4tad

2 tabs 4times daily

A 50/250 mg is a "high" single dose, and I suspect adding more would likely not benefit you... I presume this is what your doctor told you...

Anyway, I hope you can find some relief somehow.

RoyProp profile image
RoyProp in reply to Levod

I successfully resolved an issue (not tremor) when I moved from 700mg to 1400mg of l-dopa. This dose has a positive effect on my tremor issue.

Total mg day l-dopa?

25/250mg 4 times daily

2 tabs 4 times daily

Hi Roy,

I found your earlier post about tremors reducing over time interesting, because I think this is what I have experienced... But it is highly subjective and the only thing I can say is that I believe my tremor has reduced since I was diagnosed in 2015.

Note, I do not take HDT, just c/l/entacapone...

glenandgerry profile image
glenandgerry in reply to Levod

My husband was diagnosed in 2005. I think his tremor has reduced over time (also highly subjective). He has been taking HDT for a few years but never quite sure if we got the dose right. He has taken up to 3g per day, but too much definitely made his tremor worse. He’s presently on 500mg per day, he also takes 1 x Madopar twice a day plus Mucuna once a day

ParlePark profile image
ParlePark in reply to Levod

C/l and entacapone has made big positive difference regarding tremors

I used to tremor from my hands with the pill rolling motion, however they don't tremor any more, my shoulders are the weak points and any pain or stress they tremor and it projects thru my arms and then my hands, but I have Def seen my tremors lessen at rest to almost Bugger all, however if my body is under any physical strain from working out or being in the gym then I will get a little worse

Interesting to read people say too much B1 increases tremor . On all 3 occasions i have tried B1, i have stopped because of anxiety over tremor increasing. And tremor has been my most tiresome symptom.

I'm more than a little wary of saying this, but today I have been tremor free, and i have been weed killing which usually aggravates it. I am holding my smartphone unsupported in my left hand as I write this, and my left side is my affected one.

Red lights?

Zella23 profile image
Zella23 in reply to WinnieThePoo

You never know hope it’s the red lights! My husband has now been using the hat for about 7 months, still no tremor when drawing. Mostly appears if he’s cold or anxious or after doing physical work. Still variable as to when resting tremor appears. Sense of smell keeps coming back too! Much less restless legs and foot dystonia since red lights.

beccainnyc profile image
beccainnyc in reply to Zella23

Where can i get one of those hats please

Zella23 profile image
Zella23 in reply to beccainnyc

We purchased the hat from the Men’s shed in Tasmania and if you click on this link it tells you about my husband and red light therapyhealthunlocked.com/cure-par...

There are a few mentioned and purchased by people on this website. The coronet is another one, you can also make one if you are technically minded. These links show you more discussions about it.

healthunlocked.com/api/redi...

healthunlocked.com/parkinso...

beccainnyc profile image
beccainnyc in reply to Zella23

Doesn't seen to be able to purchase... anyone have any idea where to get one

Zella23 profile image
Zella23 in reply to beccainnyc

The Dorset men’s shed company in Tasmania this is their email addressmrc777@bigpond.com

Mervyn Chilcot is the coordinator. If you email him he will let you know how to order and pay for the Redlight helmet.

I m not sure about the red light coronet but if you search

well red.com.au

redlightsonthe brain.blog there is more info there.

beccainnyc profile image
beccainnyc in reply to Zella23

Undeliverable address i copied and pasted... please check the email address please

Zella23 profile image
Zella23 in reply to beccainnyc

I’ve just copied and pasted it to my email didn’t say it was incorrect I don’t have another sorry.mrc777@bigpond.com

I initially contacted Mervyn via Facebook messenger as they have a website there. He sent me the above email address.

This website is for the coronet.

well red.com.au

LondonPD profile image
LondonPD in reply to Zella23

Please tell us more about the red light and where to get it . Thank you

Zella23 profile image
Zella23 in reply to LondonPD

See post above where I ve posted links about the Redlight hat.

Kwonly1 profile image
Kwonly1 in reply to Zella23

My mom had really bad dystonia in the neck. Where and what doctors did you go to to do this? Thanks! We are at penn hospital.

Zella23 profile image
Zella23 in reply to Kwonly1

My husband had it in his feet, not neck and the red light therapy has helped with this. I don’t know if it would help with neck dystonia, that must be very distressing. Maybe your neurologist could help you. We live in the U.K. so not much help with specialist help I m afraid.

SELFMeder profile image
SELFMeder in reply to Zella23

Zella,

To what do you attribute the reduced systoms?

Zella23 profile image
Zella23 in reply to SELFMeder

My husband, with PD, would say that’s a really difficult question to answer. Two years ago he started taking B1, and still takes it. Along with vitamins, minerals, NAC, cinnamon, amongst others.Red light hat added in last August, apathy and mood improved.

Broccoli seed tea added in last October, an improvement in non motor symptoms noticed.

Been taking Terazzozin for a year.

Now you come to mention it my husbands tremor and pill rolling is much better must be since taking 1gm day of B1 he doesn’t take doctors meds

RoyProp profile image
RoyProp in reply to Dragona

Four months TRACKING improvement

FIRST STEP: a UPDRS test, a push test with video, a walking and turning test with video, a talking test with video and possibly a writing test, standing from seated on hard back chair video with your arms crossed. These videos are kept on file to be used for comparison with future videos. This is a fairly accurate means of documenting improvements over time as it is actually fairly easy for some people to not realize how much they have improved over time.

I’ve continued to have random tremors since I was first diagnosed about 6-1/2 years ago. Most nights I have difficulty falling asleep because of internal tremors which result in leg kicks or general anxiety which makes me overly BBB sensitive to bedsheets and to body positions.

Never heard anything about tremors abating over the life of the tremor with advancing age ...

Bob

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