Shakes: My doctor started me on a low dose... - Cure Parkinson's

Cure Parkinson's

25,550 members26,870 posts

Shakes

34 Replies

My doctor started me on a low dose of Sinamet and I would say my tremors are out of control, and tonight at work, my legs feel like they want to shake to o!. At first dose, I felt a difference but for the last four or five days they have gotten horrible. I think it's s side effect and not a good one. I would rather have my old tremor back than this. Will call Dr. In morning, suggestions?

34 Replies
laglag profile image
laglag

Yes, you're smart to call your doctor. Hope it helps!

Grumpy77 profile image
Grumpy77

"I would rather have my old tremor back than this"

This must be the quote of the month :)

turkeypud profile image
turkeypud in reply to Grumpy77

Hate my hard tremors. Although will take tremors as opposed to dyskinesia. That is horrible.

ion_ion profile image
ion_ion

Maybe the low dose is not low enough. For how long you have PD and what that low dose is?

in reply to ion_ion

I prob have had it for two years, diagnosed two weeks ago. 25mg

Juliegrace profile image
Juliegrace

It could be early dyskinesia. It can happen right away, contrary to "common wisdom." Talking to your doctor is the best course.

in reply to Juliegrace

What is that?

Juliegrace profile image
Juliegrace in reply to

It is a side effect of l-dopa.

in reply to Juliegrace

Thank you. I called my Dr., Left a message that it was out of control and I wouldn't be taking that any more. I had an appt scheduled for next week anyway. I have had my tremors for about two years, just got the meds and the whatever's started about two days later. The first couple of doses seemed to help and then wham!

Xenos profile image
Xenos in reply to

If you withdraw, do it as gradually as possible. It's safer.

ramondo4 profile image
ramondo4

A low dose of Sinemet ( 25/100) is the only med I have taken for

five years, still only got slight hand tremors, now getting a lot more

freezing and more of a shuffle than a nice walk.

in reply to ramondo4

That is what I was given but apparently not what was good for me. Horrible, I didn't take my doses for today and already much better. Have appt the ninth, hopefully let the dose of possible or find something else.

Eliza-Jane profile image
Eliza-Jane

I went down that road. I lost 6 months of my life. I was literally trembling to my next hit of medication. Life was hell. I had walked into my Neurologist's office with a tremor and now I was a quivering mess with no energy. I asked to go off medication which I did slowly. I was off all medication for 2 weeks when I visited my Neurologist again. He couldn't believe how good I was. I told him I wanted a little bit of something. I am now on 1mg of Azilect per day, apparently the only thing proven to slow the progress, and 50mg of Madopar 3 times per day. I was on 1000 mg of Stalevo/day after initially being on Sinemet. Trust your own instincts. Good luck.

ddmagee1 profile image
ddmagee1

The neurologist will have to, probably, figure out what medicine and dosage would work best for you. When I first went to my neurologist, I went every 2 to 3 weeks for about 4 times, until my doctor was pleased that the tremors were reduced enough that they weren't affecting my daily life too much. It takes a while, and each patient is different. You are right in contacting your Dr. if you seem to have problems, after a few days of medical treatment. When I felt my medicine wasn't working well, I called the neurologist, and he got me in, right away.

in reply to ddmagee1

I haven't had the chance to go to neurologist yet, have be referred and I have no insurance! I had no relied from the tremors except at home resting, still felt pins and needles tho. I would say that from yesterday to today 60 precent better. Still have my tremors and they have progressed this year, I just know that want the meds for me.

Thanks 😀

in reply to

Sorry about the grammar! I hope you can decipher it

ddmagee1 profile image
ddmagee1 in reply to

That's always a problem-no insurance. So sorry to hear that! After I retired, my employer dropped all my insurance, so I know what you mean. My insurance premiums are high. I have no dental insurance and recently had to have $12,000 worth of dental work done. I understand what you mean. I get pins and needles in both feet and hands, but at least the right dosage of Sinemet has gotten my testing and essential tremors under control. I hope you can get a referral and get the help you need. Perhaps the doctor would know of a way you could get financial aid for insurance. My doctor was able to get me huge discounts on prescriptions.

in reply to ddmagee1

I get a discount on my meds! I have my daughter and grandkids in town this week, so after they go back, I will make appt at clinic with an insurance helper lady! Lol

Thank you so much for your help. It's all a bit overwhelming and then when my body started freaking out, and I didn't do anything, just kept on taking it. Last night at work was it, I was done.. I don't have dental either and had work done a few years ago that I am still paying off.

ddmagee1 profile image
ddmagee1 in reply to

Looks like we both have had lots of problems. I'll be paying on that dental bill for a while, because I had to take out a loan. Working with tremors is a real bummer, for sure! Wishing you the best!!

in reply to

You need to be diagnosed by a movement disorder neurologist. If your tremors get better when your limbs are at rest then it may be that you do not have PD but essential tremor. The tremors that are indicative of OD are resting tremors.

JohnPepper profile image
JohnPepper

I would come off the Sinamet straight away. It does nothing to slow down the progression of your Pd and if it made the shakes worse then stop taking it!

Look at my PROFILE and see what I did to overcome most of my Pd symptoms. It hasn't taken my tremors away but I have now lived a normal life, medication-free since 2002.

Look at me website reverseparkinsons.net and contact me for more information, which will be provided, at no charge.

Jocee profile image
Jocee

What do you mean by low dose? It sounds like you are taking too much or more than your body needs. The amount may need to be adjusted.

in reply to Jocee

The Dr put me on the lowest dose. 25/100. This all new to me and so I didn't read all the side effects.

Joynb profile image
Joynb in reply to

How many of these do you take each day?

in reply to Joynb

3

Jocee profile image
Jocee in reply to

3 whole pills is a lot 3 times a day.

partnercare profile image
partnercare in reply to Jocee

it was one pill 3 times a day the way I read it. Minimum dose for efficacy as I hear it.

in reply to Jocee

My nose is numb, I dislike this process.

Natlp2 profile image
Natlp2

It's important that you know whether you're dealing with dyskinesia or tremor. See this article everydayhealth.com/hs/parki...

ktbate profile image
ktbate

Regarding Sinemet, I still take it but for me "the more I take the more I shake!" Got dyskinesia from it so I cut back. I STARTED TAKING CBD (HEMP) OIL for the first time today. I am hoping for some positive results with my leg pain, anxiety and depression.

Anybody else trying it?

in reply to ktbate

Let me know how it goes, hope it works!

Danasr profile image
Danasr in reply to ktbate

Tried it, it didn’t work for me but I only used it for thirty days...my son says I should have tried it a little longer but it’s expensive so o stopped. I hope it works for you.

Kwinholt profile image
Kwinholt in reply to ktbate

I use a spray of cbd/THC 4:1 ratio. Dr said if your using it for pain you need a little THC to help . 2 sprays under my tongue 1-2 times a day. There are several different ratios as well. You not getting “high” you just easing you body pain .

partnercare profile image
partnercare

My wife going through exactly the same thing. Doctors in denial. This response is not in their cookbook of treatment. Don't feel alone.

You may also like...

Whole-body shaking

regarding whole-body shaking and would be grateful for any information you could give me. Five...

I AM HAVING TERRIBLE NON- STOP SHAKING OF LEGS, HANDS, LIMBS, HEAD, NECK OVERALL BODY PARTS , REUEST HLP /A DVISE

DURING OFF PERIOD ,I AM EXPERIENCING,NON STOP SHAKING OF ALL BODY PARTS, WITH OUTMOST PA IN. THIS...

How long into your PD before you had visible tremors? Hand/foot movement?

eyelid tremors, sensation something is in my eye, foot and leg cramps, 1000s of internal tremors...

Is it tremor or dyskinesia?

Is it tremor or dyskinesia? Healthline says: “The main difference is that tremor is rhythmic in its

Diagnosis and Acupuncture

much difference. Then we increased the dosage to see if it would have any effect on the tremor. It...