What Works for Tremor, if Sinemet Doesn't?
 

I finally broke down and started generic Sinemet a few months ago, 3 years after diagnosis. It didn't help my main symptom, a huge tremor in R. side, but did give me dystonia that made it nearly impossible to walk, esp. after dose was increased. Otherwise, I had been doing well. Has anyone else had this problem, and if so did you eventually find an acceptable way to control the tremor? (acceptable = no side effects that were worse than the tremor!). Any insights, experiences, advice much appreciated! I posted this same question on another forum; am eager to see all the responses. Thanks!

I have same problem
 

welcome Peony.
I have same problem. The only symptom which has been bothering me since diagnosis about 4 years ago, is tremor. I took Kamadrine (antichlonergic class of PD drugs) which worked fine for one year but not any more.
I saw a neurologist last June who put me on 8x100/25 sinemet per day. It did not improve my tremor but gave me a sinemet "very rare" side effect which is short breath. The neurologist insisted that I should continue with sinemet as perscribed by her. I am now scheduled to see another neurologist next month.
I googled drugs directly targeting tremor and found the following:
"Abstract
It is generally accepted that patients with a tremor-dominant type of idiopathic Parkinson's disease progress more slowly than the ones with the rigid-akinetic type. On the other hand successful treatment of Parkinsonian tremor is a challenge. German neurologists use anticholinergics, budipine, β-blockers, clozapine, dopaminergic substances and for most severe cases deep brain stimulation. Budipine is an enigma because its main mode of action is still unknown, although it is mostly listed under glutamate antagonists. There is however no other anti-Parkinsonian drug available with such a broad spectrum of action as shown for budipine. Budipine has been studied in open and double-blind studies as monotherapy and adjunct therapy. In both instances the drug showed beneficial effects to the patients. It may well be that the non-dopaminergic mode of action of budipine is helpful even for patients who are on stable medication. When 3 years ago reports on budipine-induced prolongation of the QT interval in the ECG emerged larger trials were stopped and nowadays there are strict rules on how to use budipine. Nonetheless, budipine in our hands is a most useful and safe drug to treat tremor and other main symptoms of Parkinson's disease.
"
The problem is how make the neurologist listen to us? I have founded it very hard or impossible to convince them that the pathway for tremor symptom may not pass through the dopaminic systetm.
Please let us know how you do.
cheers
Imad

Some of the medications used to control tremor are Amantadine, Artane, Remeron, and Clonazepam. There are a few others but I do not remember thier names now. I tried all of these at one time or another and none of them seemed to work for me. However, do not let that stop you from trying them. We are all diffrent and what doesn't work for me may very well work for you. Many people do find tremor relief with the Artane.

GregD

Tremors & Sinemet, con't.
 

Thank you, Imad and Greg. You've given me some things to think about. Right now I'm just going off the Sinemet & am now nearly PD meds-free! We'll see how that goes & then think about Plan B if it becomes necessary. So far, I'm definitely doing better in terms of the dystonia problem in my R. leg & foot. Of course, I'd rather live with the tremor, even as bad as it gets sometimes, than not be able to walk. I was surprised not to see many responses to my query. I was definitely hoping for more, but maybe most people respond well to the Sinemet, or something else like the agonists or one of the alternatives you mentioned. Thanks again. I'll let you know what happens.

resisting temptation
 

The more I read, the more I'm inclined to the conclusion that the meds cause more problems than they solve.
Both my neuros wanted to automatically start me on meds when I was dx a few months ago, but something made me say no, so I'm trying to co-exist with the tremor.

At the moment I take CQ10, vitamins B various, I've tried Isradapine, and just starting coconut oil and ginseng, and am waiting for a Haemotolgy appt to begin with Inosine. If I really have to, I will start meds with mucuna pruriens but I'll delay as long as possible, tempting though it sometimes is.

The posts on here are more valuable than any neuro I've spoken to : )

we are in this same particular boat !
 

So I hope to keep this thread updated by all of us who have tremor as main problem.
thanks all
Imad

my tremor
 

Peony,

I take: stalevo 100 + mirapex .25 4x a day.

When I am "on," this does stop my tremor - not sure if it is one med or the other or the combination.

Jean

dear one
 

dear one,
I use evening primrose oil...

reading this again...
 

...and thinking how hopeful you might have felt typing those questions. The only thing I can offer that may or may not have merit, is to look at the possibility that other neurotransmitters have a role in this illness and who knows for sure which is at play. Because there are meds that work - some already on the market like Benedryl. Drugs with anticholinergic properties. A strong one is cogentin, but it fogs the brain......we have to try to create something that resembles normal and that becomes your lifestyle.

You didn't get more answers because that problem hasn't been solved yet, unfortunately. But we try...and we talk about it, so tell us what you find please.

Tips and insights...
 

Peony,

I was like you with a wildly flapping hand most of the time, but sinemet really helped. Since it doesn't help you, here are some other thoughts:

My tremor is worse in tense situations and sometimes there's not much that can be done about those. But I have learned to take deep breaths with slow complete exhales and tell myself "calm" with each exhale. I also try to slow down my movements, no rushing around. If I rush, I not only tremor more, but I also start fumbling and dropping things. Try to focus on what you are doing, rather than the tremor.

Sometimes tremor is worse in certain positions, so experiment a little and move your arm/hand around to a position that gets a little less tremor or that is less obvious. If one hand tremors when you are holding a piece of paper to read something, try holding the paper in two hands. Put your fork down between bites rather than holding on to it and watching it dance around.

I have noticed that it gets worse when there are other physical problems such as a urinary tract infection or other illness. All PD symptoms are generally worse then. So if you suspect an infection or your tremor kicks up much more than usual, check it out with your doctor.

One other note, the most helpful thing you or anyone else can do is not to make a big deal of it. My husband often doesn't notice or doesn't get upset when I tremor and that helps me. His acceptance makes it easier for me to accept that it is just part of me so that I don't focus on it so much.

Humor sometimes helps. A friend gave a speech the other day and after introducing himself said, "I don't need anyone to shake my hand. It's shaking just fine all by itself."

Just some thoughts. Take what is useful, if anything, and discard the rest.

- J