The last couple days I have been taking small doses of Sinimet and mucuna intermittently and when I stop at the end of the day I go into what I can only describe as withdrawal .I start shaking and can't stay still or concentrate.My anxiety goes through the roof. Is this the on off effect ? It's !like being a drug addict and this terrifies me even more than the diagnosis.
Is this normal for Parkinson's meds / muc... - Cure Parkinson's
Is this normal for Parkinson's meds / mucuna ?
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Butterflygrandma
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Likewise. I lie down, elevate my legs, it passes about half to three quarter hour. Relaxing music helps.
The thing is I am increasingly getting shakey all day long and I don't know if it's the anxiety or the lack of dopamine or both. I can't function .
Neurologist should determine whether it's dopamine or psychological.
A neurologist who only saw me for 15 minutes prescribed clonazepam twice a day to see if it helps and deal with Sinimet later but another neurologist wanted me to go on Sinimet now slowly . I have used clonazepam a few times but not comfortable on a regular basis and being on it for the rest of my life as the neurologist said I probably would be.
My laymen's option is for the sinemet for the tremors and see if it also helps the anxiety. Be careful with the Mucuna since it complicates sinemet dosing.
Yesterday I took 3/4 of a Sinimet and some mucuna at different times. I still had severe anxiety.
My understanding is sinemet needs regular use after conditioning if dopamine replacement is what is required for your situation.
How often should I space them apart ? Every 4 hours?
consult neuro please
He just said 3- 4 x a day ..didn't explain anything
I have no clue how long the effects of an immediate release 100/ 25 should last
It is different for each person depending on degree of progression, so you will need to observe your own response. Here are charts of plasma levels of immediate release and controlled release C/L to give you a ballpark idea:
My husband uses 1 clonazapam 0.5mg cut into quarters over the day and it is helpful without causing symptoms. With most of these things the prescribed dose can be too high but at a much lower level can be useful.
I have just been prescribed conazapam at night for internal tremors but I’m scared to take it long term
What is the dose? I would start on a fraction of the prescription. It builds up to a steady concentration in your blood as it has a long half life, so it might take a week or so to reach equilibrium. Try a 1/4 for a week or so, then add another 1/4 for another few weeks. If you are feeling any better don’t keep increasing it. Better to be slightly under than over. The side effects start happening if you are on too much as it builds up in your system. I think each drug has a u shaped effect if you mapped symptoms. Too little = symptoms. Too high = symptoms , in the middle = sweet spot of reduced symptoms.
Thankyou for replying my prescribed dose is o.5mg and neurologist said take one every night. I appreciate what you suggest nd will try it
I take from starting 6 am till 10 pm every 2 hours 2 x levadopa and stopped with mucuna
Much more balans!
When do you eat ?
My hwp was on Dopa Mucuna (the supplement) at first for quite awhile and had to up it to something like 12 tablets. It still wasn’t really working. Finally decided to take the synthetic C/L (Sinemet). He takes 25mg -100mg, 3 times a day and is beginning to feel a little better.
He stopped the Mucuna to use the Sinemet. I don’t think you should be taking both; maybe that’s why you’re having that weird experience?
Are you seeing a neurologist? In reading the comments below, I really think that you should check with a movement disorder specialist…they know more about Parkinson’s than a regular neurologist.
This medicine Sinemet is suppose to be started very slowly at minimal levels (he breaks the pills now) then after a week you would add a little more. But this needs to be followed closely by a movement disorder specialist. Sounds like you need a better doctor.
To see a movement specialist here, there is a year long wait. I managed to take 1 full Sinimet yesterday without getting sick or falling asleep. Does that mean I could probably try doing it twice a day of just stick with one for now?
Oh, I really don’t know as I’m not a doctor and have no idea what stage or symptoms you’re experiencing. I would get on that wait list and call every day to see if there’s a cancellation. That’s what I’m doing for myself (I have AFib and need an ablation).
In the meantime look for another neurologist who can better guide you until then. Go to healthgrades.com to check on their ratings.
I have seen two neurologists . The second one was quite irritated that I already saw a neurologist and didn't really want to see me. Apparently it is frowned upon to take over from another . They have hundreds of patients and make you feel guilty for trying to find another Neuro .
I know all about that but you need to be an advocate for yourself and keep searching for a doctor that you feel comfortable with.
Unfortunately here in Canada you have to go through the "system" and there are no other channels. I only got the second Neuro because the first one was unavailable all summer and I literally begged a nurse at the movement disorder clinic to find me a neurologist who would see me.
Omg… that’s horrible. I’m so sorry. Not a lot better here in the U.S. After Covid things are really backed up…especially the medical community.
Did he slowly wean himself into C/L or go straight to 3x a day ?
He very slowly increased the amount over 2week period…cutting pills in half, .. 2 a day…taking am and pm. Then increasing to 3 and now on 3 full pills 3 times a day.
But remember everyone is unique, we’re all at different stages with different symptoms.
Thanks. It's so confusing. One Neuro told me to get used to the pills by just taking one at night before sleep, then follow the daily doses as usual once acclimated. Another told me to wean by slow doses each day . ( only if pills make me sleepy or nauseous )
Hi, there is such a huge learning curve because most of us are stuck with Neurologists that are wholly inadequate. They prescribe drugs and shoo you away to work out everything with no guidance.
We all react differently to the prescribed and unprescribed drugs. This is because we’re on a downhill ride and we don’t know where on the slide we are, different body types, different weights, and different constitutions all effect efficacy of meds. I also found protein really affected the meds. I only eat one big meal at around 6 with protein and I space my meds around that time.
I truly hope this helps and I hope you get some relief!
So true about the neurologist ! What about eggs ? Do you eat eggs for breakfast ? How are we supposed to produce our own dopamine without protein ? It's like these pills are made to make you completely reliant on synthetic dopamine.
Hi again, I do have eggs if I can time my meds with 2 hours either side. To be perfectly honest, it is extremely difficult! But my body screams at me when I mess my meds up with protein. This may not happen with everyone? I hope you get some relief!
I thought taking the meds 45 minutes before a meal was plenty enough time to get the protein out of the way.
I think this is the snowflake issue with PD. We are all so unique biologically, chemically, genetically that there are no easy answers. There is no “one size fits all” to the disease. Trial and error has been my method to find the most optimal combinations to take the edge off of the symptoms. I hope you find the relief you are looking for!
something not known by a lot of people. And I don’t understand the science. But dopamine is a precursor for adrenaline. That’s why when doses get higher, the “off” is accompanied by what feels like anxiety, which is actually the adrenaline rush. Of course Pd also creates stress and anxiety, but the chemical part of the equation is important. Often, less is more. The higher dose may help with movement but the anxiety comedown is pretty unbearable.
Neurologists don’t tell us about this!
If I’m wrong here, someone correct me, but I was told this by a biologist and it makes sense to me.
Lets have some appreciation for what our Neurologists have to go through
First they have to allow sick people who are mostly old to come into their office. God only knows where their hands have been.
To make matters worse the patient brings his care giver (wife ) who asks a lot of questions and writes every thing down and refers to things that she found on the internet (what ever that is ) and shows no respect for the 2 extra years that he had to go to school to get that diploma.
Then there are very little tools available for them to do anything with. L/C and a few other drugs and the patients keep asking for advise about things that have nothing to do with the brain and should be handled by a General Practitioner MD . Stuff like constipation and muscle pain and lack of sound sleep.
Then the Government or insurance company will only pay him $100.00 a visit so he has to keep the appointment short, so he can handle all the people who keep coming into his waiting room every 15 minutes in a reasonable 9am to 3:30 PM work day. It is his secretary who needs one and a half hours for lunch so he has to shut the office, what else can he do.
Thank goodness his secretary keeps the incoming telephone calls from going through to him or he would never be able to see his 2,000 patients every six months. But luckily COVID showed them how many more they can treat using internet conferencing. Much less stress when their office is empty of people and he does not have to wear pants.
There are no medications on the market that slow down or reverse the progression of PD symptoms.
The only scientifically proven way to reverse the symptoms of PD is to do FAST WALKING (FOR NO LONGER THAN 1 HOUR EVERY SECOND DAY). Normal walking does nothing for you. When you walk fast, it is not NATURAL! pou would normally run, if you were in a hurry.
SO. Walk as fast as you can, every second day and after each two weeks, you add five minutes onto your time until you reach one hour. Then continue to walk fast, every second day, for the rest of your life. If you do not exert yourself to your maximum effort, then you will be wasting your tiome.
I am now nearly 89 years old and was diagnosed with PD in 1992.. I have been tested by 3 other neurologists since then and, although I still have PD, I live a normal life. I still have many other symptoms, for whih I take normal, off the shelf medication.
Don't give in! Do your best because, only YOU CAN HELP YOURSELF!
Read my book!
Hi John, I am inspired by your book. Thank you for letting us know that living an active lifestyle is possible with PD! I have a silly question about fast walking. In your opinion, will jogging or running provide the same effect as fast walking? I'm asking because I barely can walk without walking stick, but surprisingly I can jog. I guess it's because of my posture.
Then it might be good to look at the remarkable results of Jenny Ann Ryan similar to JohnPepper. She combined a kind of fast walking with poles, without letting them hit the ground. Maybe you can take a look at it too John?
Hi. Absolutely not. Fast walking produces the most GDNF (Growth Factor) of any form of exerecise, by a very large margin. That growth factor reverses the PD.
I'm curious John what you think of (the first part) of Jenny's video above, what are the similarities / differences with your improvement (apart from faith) in her method?
Hi Esperanto. There is no difference between what Jenny did and wg=hat I doexcept she uses poles and I don't. We ar just walking as fast as we can!
To me this feels like an over dose reaction... mucuna can be quiet potent !
When I first tried mucuna, I had the jitters, so I stopped. I later found out I was taking the wrong mg dosage. I have tried the new dosage once or twice, but it does nothing for me. If you think about why people take narcotics, it's to get a dopamine hit. So of course you will get the DTs when it wears off.
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