Don't know where to find info: I'm up to... - Cure Parkinson's

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Don't know where to find info

Judy78 profile image
22 Replies

I'm up to 27grams of mucuna and the doctor wants to continue to increase the dosages until the tremors quit but the tremors haven't got any better for the last several increases of mucuna; the last two doses of the day lasts up to 1 1/2 hours and sometimes not that long of up time. No sleep at night for about 7 weeks now, I have been reassured that when the dose gets high enough the sleep and being hot will go away. I'm not looking for some one guarantee just some ideas.

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Judy78 profile image
Judy78
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22 Replies
M_rosew profile image
M_rosew

Hello Judy. I can't see any mention of your diagnosis, or what sort of doctor you are seeing.

Judy78 profile image
Judy78 in reply to M_rosew

I have never had anyone to look into the right arm tremors. Some say it's PD but then I can go back to the same doctor and they say it's not PD. I just got out of the hospital not too long ago and had my gal bladder removed ( had gal stone 1/2 as big as gall bladder) and was told it had been bad for several decades. While in the hospital I had potassium continuous put into me by IV and the tremor was barely noticeable ( this was before mucuna) Got a test preformed and I have several mineral deficiencies. The doctor that put me on mucuna said he was just going to increase the dosages til I have no down time and I can sleep through the night. My entire body shakes inside and out between dosages most of the time and I never know how much up time I have with mucuna.

laglag profile image
laglag in reply to Judy78

What state do you live in? Have you seen a movement disorder specialist? Sounds like you need to see one & get a definite diagnosis.

M_rosew profile image
M_rosew

I don't know how health care works in USA. I agree with laglag that you should see a Neurologist who is also a Movement Disorder Specialist to get a proper diagnosis. S/he could then start you on an appropriate treatment if necessary.

Ramuu profile image
Ramuu

Please don't take mucana without proper diagnosis. Please visit neurologist immediately. Let me please inform you that mucana can only temporarily stop tremor, as long as it is working. Not advisable to take more than 10 grams per dosage.

SuperMNew profile image
SuperMNew in reply to Ramuu

Ramuu, tell us what you know about how Mucuna works. I am taking the extract at night to be able to sleep thru the RL attacks, but I want to be wise about it. I have just sent for the book by a neurologist on Mucuna. If this has been used in India for hundreds of years to treat the symptoms of PD, it seems to have some sort of safety record.

I am curious about your comments regarding dosage. Thanks in advance for the info.

Ramuu profile image
Ramuu in reply to SuperMNew

Indian Mucana, in Indian Sanskrit-Vedic Language it is called as "Kapi Kachu" . I have been taking since late 2012, 1 TBS ( 7.5 Grams) x 3 times daily. It has to be taken in empty stomach and one should not take food for 30 - 45 mins after that , it takes about 20 -30 mins to reach full action and it will give 2.5 to 3.00 hrs ON time depending on individuals condition. As per my Ayurvedic Doctor, it is not advisable to take more than 10 grams per dosage. I also take Ashwagandha (please google search for benefits ) after food 2x250 mg Tabs or 15 ml Syrup x 3 times daily. For more on Mucana , please see the following links.

mucunapruriens.net/

jonbarron.org/herbal-librar...

mucuna.in/aboutmucua.html

ayurvediccure.com/natural-s...

mall.coimbatore.com/bnh/vai... : I buy this product, they ship world wide.

Side Effects of Mucuna Pruriens

While it is generally considered safe and has helped many people with low dopamine levels, there are some mucuna pruriens precautions and side effects to be aware of.

People suffering from schizophrenia, manic-depression and other mental illnesses characterized by highly fluctuating levels of dopamine should avoid mucuna pruriens. It’s best to consult a specialist before using it if you have experienced any mental health issues previously.

While mucuna may have potential in treating depression and Parkinson’s disease its use should be supervised by a knowledgeable health care professional.

Due to its ability to reduce prolactin, needed for reproductive function and lactation, velvet bean extracts are not recommended for women who are pregnant or breast-feeding.

The L-dopa in mucuna pruriens can be used by the body to make melanin. This in itself is not harmful but there are some recommendations that people who have had melanoma or at high risk of skin cancer should avoid increasing L-dopa too high.

Due to the L-dopa in mucuna it is not recommended to be taken with MAO inhibitors or levodopa medications for Parkinson’s disease.

There’s some evidence that mucuna benefits include lowering blood sugar levels and taking it may help prevent diabetes. Those already taking diabetes medication or on prescription medicines for heart disease or low blood pressure should consult their doctor before taking mucuna pruriens.

Mucuna Dosage, Timing and Best Price

While it is considered much safer than taking isolated L-dopa, mucuna pruriens can be potent and it’s best to start off at a low dosage so you can monitor your results for the first few days.

After that time you can slowly increasing the dose if needed. Definitely don’t take a large dose on your first time taking the herb as some people can be sensitive to its effects.

Start off slow and never exceed the recommended dosage. It will last much longer and be likely to work more effectively used in small regular doses, rather than occasionally taken in excess.

Judy78 profile image
Judy78 in reply to Ramuu

Can I take 5 small doses. I'm taking 4 now.

If take mucuna on empty stomach, I throw up

I have had insomnia every since day 1 of taking mucuna, any suggestions

Ramuu profile image
Ramuu in reply to Judy78

Please take in empty stomach with half fresh lemon juice and also you can have big slice of water melon. I'm surprised in your case rather one gets better sleep with. Mucana

Judy78 profile image
Judy78 in reply to Ramuu

Mucuna kept me up when I started with the first day.

Can I just quit taking mucuna all at once. I have not found any information on this. I started May 16 2016

Ramuu profile image
Ramuu in reply to Judy78

Absolutely no problem in quitting Mucana , if you are not comfortable. Only thing is that you will have to sacrifice Quality of Life, unless you substitute with some other Dopa product. I myself have cut down from 1 TBS x 4 times to 1 TBS x1 time by dropping one dosage per 2 weeks interval. My QOL has suffered , but I am ready to face it, by determination / power of mind one can achieve to be "Free of Medication ",I am aiming for this, but one requires family /partner's support otherwise it would be difficult.

Wish you good luck !! God Bless you

Judy78 profile image
Judy78 in reply to Ramuu

If I take mucuna on empty stomach or if my stomach has not got plenty of food in it; I throw up

Judy78 profile image
Judy78 in reply to Ramuu

I did go to a dr. My husband found a dr. that followed "Marty Hinz protocol "

This protocol is nutriential but this dr. was in Texas ( I think) and he said to go to 1-800 national line to find a dr. closer to us. We found one in Ohio so we went and he stated that whether I had Parkinson's or not sinemet wasn't a good drug. He said " there is no reason why we can't get you normalized "

I ask him what about the nutriential, the dr. said lets get you relief on the tremor then we will.

Insomnia was from day one of taking mucuna, don't know if mucuna will give me any relief nor how much up time.

I could go on & on but I was on 450 pills a month of the sinemet. My skin was turning yellow, I had severe pain in my arm & everytime I went to a dr. The dr. would increase the sinemet, not looking into any other reason why my arm would be in pain. Yes I had MRI's that all came back normal. Specialist stated that even if I didn't have PD his recommendation of PD medicine would be the same.

We are not looking for a miracle drug nor a quick fix because for one thing it's too late for a quick anything .

Bailey_Texas profile image
Bailey_Texas in reply to Judy78

Get a correct DX . No Dr. worth anything would say "he stated that whether I had Parkinson's or not ". His first step would to be to DX. you. That way he would know what to treat you for. if 450 sinemet does nothing for you then you may have essential tremor and sinemet does not help it.

GET A DX.

Marty Hinz protocol sounds like a scam.

Judy78 profile image
Judy78 in reply to Bailey_Texas

PD is the diagnose

Judy78 profile image
Judy78 in reply to Bailey_Texas

if I went in to see a dr, if my arm has a tremor then that dr. would say that I had PD.

I had a pain specialist and my family dr. State that they didn't know what the problem was but didn't think it was PD

HeartSong profile image
HeartSong in reply to Ramuu

Ramuu, you say that it is not advisable to take more than 10 grams of Mucana per dosage. Can you tell us where you got that information? (I'm not challenging you, I just like to know the source of information.) Thanks.

Ramuu profile image
Ramuu in reply to HeartSong

This info is as per the advise of my Ayurvedic doctor. I am having PD since 2009, I started taking Kapi Kachu ( Indian Raw Mucana ) , since 2012. I am taking treatment at Vaidyaratnam Kerala India, they are growers and producers of Kapi Kachu ( Indian Raw Mucana ) and expert in treatment of many Neuro problems including PD ,please see link : vaidyaratnammooss.com/

Ramuu profile image
Ramuu in reply to Ramuu

I had no tremor before, but since 3 months I have little tremor in my left hand , vanishes when kapi kachu is in action and tremor returns back when kapi kachu weans out, Then I asked my Dr. whether I can increase kapi kachu dosage, his answer was not to go beyond 10 grams per dosage!!

Donzim profile image
Donzim

I'm all for alternatives but not until one gets an actual diagnosis..you might want to look up Hinz history on Google. Not that he's wrong but you should know as much as possible.

Get to a good doctor, then a naturopath, then figure out what to do.

Why would anyone give mucuna without a diagnosis?

stevie3 profile image
stevie3

I agree. Mucuna is an alternative. I'm surprised a doctor would 'prescribe' it. Nothing against it, in fact, I use it, but I'd be uncomfortable if my regular neurologist advised it as a first line treatment. And it doesn't seem to be working for you. I don't know how the US healthcare system works but I'd find a 'regular' neurologist' and take it from there.

laglag profile image
laglag

I'm having a problem understanding why most people are trying to avoid starting or continue taking C/L. I don't like taking any type of meds either, unless I really need them, because of the side effects, but it sounds like some of the "natural" methods can have some pretty bad side effects also??

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