Hi all, recently diagnosed, 65, overweight, but active. I started 4 weeks ago with 25/100 Carbidopa-Levodopa , 3 pills a day. I am taking them every 8 hours without side effects. I am disappointed that my right hand tremors (main motor problem) are still constantly there. They have never disappeared .
I am afraid that the MDS Dr will decide on an increase in dose or another medication and I was reluctant to start C/L in the first place.
Can you share your experience? How long did it take for your tremors to stop after you started the medicine?
Thank you!
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Patitou
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My tremor does not disappear due to C/L medication, but is under control by lifestyle change. I think that's where you also could have the profit. By overweight, there is work to be done: diet and exercise, exercise and exercise. But there is more. For this I repeat the advice to Camomi to read the book by Dr. Raphael Gonzalez Maldonado:
“Ecological therapy for Parkinson's disease: Medication, late and little”
Ecological treatment of PD includes all for this lifestyle change: exercise (hiking, brisk walking, swimming and strength training), pleasure, regulating sleep, taking care of the microbiota and diet (MIND diet) adding some supplements and only when levodopa is needed, starting with C/L medication or mucuna at the lowest possible dose. 🍀
My experience is similar. On MIND diet, plenty of exercise, microbiome care. On C/L 1.5pills 3x/day (and Amantadine). Tremor has not been affected at all. What does seem to help is Yoga Nidra. It is a form of guided meditation during which my tremor stops completely for some to most of the time. It is a blessed relief! Unfortunately, to this point , (been doing it mostly every day) it has not had lasting effect on the tremor. It is a great form of dealing with anxiety, though.
May I ask how long have you been diagnosed? Was C/L 1.5 pills 3x/day your original dose instead of 1pill 3x/day? Why do you take Amantadine? Do you have dyskinesia?
My first medication was Amantadine and it helped with my stiffness, but not the tremor.. After about 18 months on just that, the C/L 1 tab 3x/day was added. After about a year it went up to 1.5. But nothing has touched my tremor. No dyskinesia. Also I don't take every 8 hrs.I take at 8A-2P-7P(if i haven't eaten too close to those times) . Diagnosed 4.5 yrs ago after 2 years of misdiagnosis.
With Yoga Nidra you can indeed benefit from tremors due to physical and mental relaxation. Seems like a must! This is also the case with my Qi Gong during the relaxation practises. The slightly more intensive exercises that help improve PD problems with balance, coordination and concentration may activate my essential tremor, but that's temporary.
So indeed 3 x exercise! 😉I recommend trying especially outdoor intensive activities such as brisk walking. I probably don't need to introduce you to John Pepper...
Try inderal beta blockers (propranolol). It helps my tremor far more than levadopa. (And to confirm i have Parkinson’s with dat scan confirmed, left side tremor and more than just tremor).
Yes but it also helps in general with tremors and anxiety. Its known to be a drug that helps calm the nervous system down . I had terrible nausea on madopar and nothing with propranolol. It’s known to be completely safe and normal people take it to help with stressful situations. Btw diet also has a massive effect on my tremors and symptoms. Check out Laurie Mischleys advice. It’s working miracles for me.
I have PD for over 2 years. C/L and Amantidine didn't help with tremors. Propananol does help. My main symptom is right hand tremors. Doctor gave me Artane for tremors. I just started and will see if helps.
my story is well documented on this site so I will be short, I am tremor dominent and was diagnosed 6 yrs ago, I learned very early that nothing you put in your mouth will stop tremors so I dumped the meds. Still off them and have my tremors, why take Meds to treat other symptoms you dont have yet that will not sto the tremors? I was 106 Kilos, now 88.5. Keto diet and regular exorcise
This may be a sinemet challenge to see if you response to dopamine. Yes he will probably increase it, but without any side effects don't worry. He may also try a dopamine agonist. If you see no response or just a partial response, you may be dealing with a Parkinsonism.
do you know about food interaction with c/l? Especially protein? C/l works better on an empty stomach and many hours away from protein. It’s recommended to eat the protein only after the last dose has kicked in to make sure there is no protein in the stomach. Maybe give it a try and see if it works.
I think you need a bit of perspective . You have been prescribed (3 ) x 100 mg Levodopa = 300mg.
I am taking ( 2 ) X 100 mg x 7 times a day (7am, 10am, 1 pm, 4pm , 7pm, 10 pm , 3 am ) that totals 1400 mg a day.
The doctor has prescribed basicly the smallest dose , in most cases if it helps than you have PD and he may prescribe a slightly larger dose to reduce the symptoms. It is very unlikely that the symptoms will disappear completely, and a slight tremor in one hand is one of the first minor indications. If you continue to not gain benefit from the increased amount of Levodopa then you probably do not have PD but something elses.
The something else could be Familar Tremour which can be treated easily with other drugs and is not a severe condition or it could be what they call the Parkinsons Plus diseases . This would not be good news and I hope it is not your situation. Look up Parkinson's plus diseases. I hope the Levodopa works.
C/L medication alone never got rid of my tremor. I t wasn't until I added Mucuna Pruiens extract made by Ketter Wellness (sold on Amazon) that I got relief. I have NO tremor now, as long as I keep popping the Mucuna extract.
Each Keter Wellness Mucuna capsule holds 700 mg. of mucuna extract with a minimum of 20% natural L-Dopa (or 140 mgs. of natural L-Dopa per capsule.) I take 5-6 capsules a day, thus getting between 700-840 mgs. of natural L-Dopa per day. This is what works for me and keeps my tremor away.
My neurologist prescribes C/L (25/100) 3-4 times a day but I only take one/half of a c/l pill when I take it, which is usually 3-5 times a day (equalling 2-2.5 c/l pills a day.)
I would like to eventually get to the point of dropping the c/l pills completely.
If you experiment with mucuna, do so slowly as too much too soon (especially if combined with synthetic c/l pills) can cause an unpleasant reaction, usually in the form of some sort of digestive distubance... i.e., mild dizziness, nausea, belching, hiccups, bloating etc..
And keep in mind that all mucuna is NOT equal in terms of manufacturing quality, strength, form (powder vs extract) and so forth. I've tried several brands and get the most bang for my buck from Keter Wellness.
I started with the shakes in my left hand, which now has gone to my right, but not as frequent as my left- I started with 1 Tab 3x/day .
My tremors increased after a few years- so the neurologist suggested 1.5 tab x 3 per day- I take this dose but not sure it really does much.
The most important thing is Exercise daily cardio/walks and use weights or resistance training to strengthen arms and hands.. I also take lots of various vitamins/supplements.
Lack of sleep and stress def make tremors worse, including other symptoms.
Recently I've been doing Parkinsons video exercises on YouTube with my wife-who also has Parkinsons- the co-ordination helps..
As for the tremors I'm kind of learning to live with them- I'm going to start reducing my C/L soon, gradually.
Usually, in addition to your visible motor symptoms, you also have an iceberg of non-visible symptoms such as concentration, decision-making, memory, sleep, mood swings, constipation, stress sensitivity, starting problems, etc. Does the C/L medication show any improvement there?
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