I am 47 years old. Tremors started in my right hand about 3 years ago. I was diagnosed with essential tremors by neurologist. He old me that it is genetic as my mom has it. But after a few months the tremors progressed and he diagnosed it as PD. He tried C/L and amatdine but both didn't work. So I was referred to MDS. After two years waiting finally I got appointment with MDS ( I am in Canada and health system is broken here). MDS diagnosed it as PD. I have right hand tremors and they have progressed for last three years. I don't have any other significant symptoms. MDS noticed bradykenisia on right side. Although I don't feel anything other than tremors. He put me on L/C again although I told him that it didn't work. He said that it should work with high dose. He started with half a tablet three times of 25/100 mg and increasing to 3 tablets three times a day over next few weeks. I am wondering if C/L works for your tremors? Or any other medication work for anyone?
I am relieved that finally I got diagnosed but also worried about my future and my feelings. I am in a prime of my career in software engineering and worried about my job. I haven't told at work. Not sure how it will impact my career if I share with employer. How did you do it? Please share your experience.
Thanks for your help.
I am doing a quite bit of running (3-4 days a week for 5-6 km).
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Astronomer90
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I'm not a doctor, but in my experience as someone with PD, a dosage of 3 tablets three times a day for an early stage patient is wretched excess. See here for the potential downside of high doses of levodopa: healthunlocked.com/cure-par...
Don't get me wrong - I am a believer in levodopa medication and it is my mainstay medication. With that said it has never been terribly effective for my Parkinson's tremors. Speaking of tremors - are your tremors resting tremor or action tremor?
Excess levodopa can cause dyskinesia (involuntary movement) and dystonia (muscle tightness). Dystonia is also a Parkinson's symptom. See the link I gave above for further detail.
Hopefully other members here will have something helpful to say about the tremor.
In the beginning of your diagnosis you want to be as conservative as possible with the medication. You are very young. Some people try try mucana first.
As far as I know, CL might not help hand tremor, you need to find your own dose, there is no such thing as must take 3x per day. Stay strong, good luck
Whether you have PD or not, start to do FAST WALKING, NOW.!
It will do you the world of good, physically and mentally. Walk as fast as you can for up to one hour, every second day
I was diagnoseD with PD in 1992 and, having tried all the meds available, with no improvement in my condition, only the continual deteriation.
My late wife begged me to start doing FAST WALKING, which I did and withinn three years, all my PD movement symptoms had disappeared and have remained that way ever since.
In 1994 I started doing FAST WALKING and coninued up until three years ago, when I had other health problems. I now feel the tremors in my right side again, but at 89 years of age, I am unable to walk without a walker, without falling. I have to put my pride in my pocket and walk with a walker now and, get rid of some of my PD movement symptoms again.
It has taken me quite a while to type this out because of typing errors, due to tremors.
I am now going to start the FAST WALKING again, with a walker to prevent me from falling.
I had one bad fall a few months ago and broke my right hand little finger in half. Only the tendon stopped it from falling right off.
Swallow any pride you have and keep on walking as fast as you can, every second day, for no longer than an hour.
I have been all over the English-speaking world to demonstrate to other PD patients HOW TO WALK FAST. by CONSCIOUSLY CONTROLLING THEIR MOVEMENTS!
NOBODY HAS BEEN UNABLE TO DO THIS, IMMEDIATELY!
TRY IT NOW. EVEN IF YOU DO NOT HAVE PD, IT WILL DO YOU THE WORLD OF GOOD.
I’m 23 years diagnosed with pd. Took C/L for years. Past two years take Rytary., which is basically the same thing. Even though I now have dyskinesia, CL has always worked for my tremors. Trying now to reduce my Rytary to see if I can reduce my dyskinesia.
I am also from Canada and understand your frustration with the system. Please try to get on the waiting list at Toronto Western's MDC. L/C definitely helps my tremor. I am 4 years since diagnoses, and never really had "on" and "offs" but outside of being anxious or excited, I can feel the meds work when my tremor starts.
You are on the right track questioning his recommendation, I was diagnosed one year ago , a slight left hand tremor and I was classified as mild PD. For ten years I was dealing with health issues . I knew something wasn't right but the docs couldn't put a finger on it. Finally the diagnosis. The neurologist said no drugs since I'm still making dopamine. The biggest thing I deal with is the insomnia, low back pain and constipation. Always ask questions and look for answers, doctors are not gods, plenty of errors from that profession have harmed many. Stay true to your exercise, find out the health policies from your employer without blowing the whistle on your condition . I'm a 72 year old female Canadian living in the corrupt province of Ontario. Keep your head up and learn as much as you can.
keep running. I am going into my 20th year and am taking the C/L quick release yellow pills 2and1half 4 times a day and slow release at bed time to get me through the night. I try to get out for a 45 minute walk every day . I am at a point of needing help with to get up and down some throughout the day but for the most part I am able to function ok with current medication amounts . The walking is very important to me so as I said , keep running. I wish I could run but my balance is not so good that I can do that. I use walking poles when I go walking and need someone to go with me . I have been blessed with doing as well as I am doing now for someone having advanced Parkinson’s. Come on Parkinson’s cure !!!!!
I would talk to a neurologist that specializes in Parkinsons. There are other meds out there that may help with your tremor. Some may be in place of CL and some may augment. Start researching online too. Ask about rasagline and mirapex, propanolol and even mirtazapine. Stay positive and dig into it and be persistent.
If you find your work stressful, you should seriously consider working less or even quitting. Stress and PD do not go well together. But if that's not the case, then keep working!
My situation was somewhat similar, although I am 20 years older. My clients thought I had PD because of the tremor, and I had to explain every time that according to my doctor, it was an inherited essential tremor. That's why I decided to visit a neurologist, and it turned out that I did indeed have also a resting tremor as a symptom of PD. I went through the same medication pattern, but the difference was that I actually noticed a difference. However, the dosage had to be constantly increased, which should raise alarm bells! In my case, it turned out to be a severe vitamin B deficiency, particularly B6. After finding my B balance, the C/L medication suddenly started working again and it has since been reduced to 0 to 2 half tablets of Sinemet 10/100 per day. Of course also thanks to a better lifestyle: diet (MIND), stress reduction (retirement and QiGong), exercise (hikes), and outdoor activities.
A vitamin B deficiency is often related to PD, but also to chronic stress. Therefore, I strongly advise you to get all your B levels tested, especially B6 if you haven't already done so!
My husband started chewing nicotine gum, one piece a day with his Lev/Carb. It helps his tremor, brain fog and motor functioning. Saved his job in I.T.
I am a tremor dominant parkie. My tremors in my left arm & hand are very pronounced during "off" times. It was so bad prior to taking C/L, I could barely type. The C/L worked a bit but I found that mucuna works better for the tremors. I take Z-Naturals mucuna with my C/L. znaturalfoods.com/products/...
I find the second option to be very strong and have a hard time getting the right dose. I take less than 1/16 teaspoon. That's the smallest measuring spoon I could find. 1/16 teaspoon is too much for me.
im 45 diagnosed 1.5 years ago with left side tremor and dat scan. I tried madopar 3 times a day for 6 months but it also didn’t help my tremor but other symptoms that were mild so stopped. I found going hard into an anti inflammatory diet, running and meditation helped. Also propranolol seems to help my tremors more than macuna or madopar. If you find something let me know!
Thanks for sharing. I am trying the dose suggested by MDS for levedopa which is 2 tablets 100/25 mg three times a day. It is not helping with tremors at all. I don't have any other significant movement symptoms. So not sure if it helps at all. Propanol definitely helps. It reduces tremors by about 20%-30%. The other medication which helps is the Artane. It reduces tremors by 30-40% but there are terrible side effects such as near vision problems, dizziness, feel very thirsty and sometimes short term memory problems. These side effects are temporary and goes away after a few hours.
haven’t tried artsne. Should i or are you not recommending it? I was reading alot about chemicals that cause tremors and they seem to be dopamine, gaba, glutamate, serotonin, acetylcholine, norepinephrine. I think these are out of balance causing tremors. Propranolol effects norepinephrine. Glutamate you can use glutathione but it doesn’t seem to help me. Im looking into acetylcholine which can be blocked with anyi histamines. Trying it now and think it might be helpful a bit. Told my dietitian and she suggested trying Lecithin granual which is my next plan
Thanks for sharing. I only takes Artane when I have to go to the office meeting as I work from home most of the time. For me, regular use of Artane is not possible due to side effects. But not sure if it cause side effects for everyone.
I was DX 2 yrs ago when I was 47 yrs old, was on .75mg Mirapex. Switched to CL 2 months ago taking about 2 pills /day and do experiencing little more hand tremor. Mirapex does works better on tremor but need to watch out for compulsive behavior. I felt some but still under my control.
Started Madopar (Prolopa in Canada) at 50/12 mg 3x/day. No positive effects - including on resting tremor. But in a mere one month it did cause me to lose 3 kg (I was already very thin) and gave me low blood pressure (my BP has always been on the lowish but healthy side).
I went on to try higher dosing. Nothing good happened.
I have since tried "Levodopa Challenges" several times. (Have you tried these?) No effects observed. I am actually glad to be fully done with that damned drug.
Trihex was terrible, as reported by many here. No positive effects.
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