My meds is Mucuna P. (Zandopa) and half a Sinement 25/100 x 5 a day, feeling very fatigued and sleepy.

[Drevy]

Tried MOA inhibitors and they make me weaker.. Doctor wants to talk to me about DBS...PLEASE HELP.

[Hidden]

Sorry but Zandopa in not a med !

[muragod in reply to Hidden]

It is ayurvedic (Indian) medicine.works well.not much side effect

[ldq1997 in reply to Hidden]

If Zandopa is not a medicine, then what do you consider it to be?

[export]

HALF Sinement you shouldn't be taking 5 a day . IN FAXT I DON'T BELIEVE YOU .Looking at your past post.

yours EXPORT>

[Hikoi]

Drevy

You are 15 years PD right? Is that since diagnosis? If so i would guess you are very undermedicated and do not have enough dopamine to function well. I'm not surprised you are tired. I do wish you well, and hope you get the medication you need before long.

[Pete-1 in reply to Hikoi]

Also I expect there is no Carbidopa or Benseraside in Zandopa so most of the Levodopa in the Zandopa wil be absorbed by body tissues apart from the brain and so completely misses the target. So waste of money too.

[Drevy in reply to Hikoi]

I was Dx on March 2008. My original meds was Azilect 1mg, Requip XL 8mg, and Sinemet 25/100 3x a day. My symptoms were, had trouble move in bed, muscle weakness, shuffling, body rigidity, freezing, etc.

[Hikoi in reply to Drevy]

Apologies Drevy, i thought i read 15 years on your profile but don't see it there when i looked just now.

Tiredness is a PD symptom and is often relieved by being medicated adequately however I also know people who have extreme tiredness as part of PD and they haven't found a solution to it.

Personally I'd be wary of having DBS after only 5 years. Also if its being recommended for tiredness then I'd want to know it worked for that, i've never read or heard it does.

[Norton1]

Hello Drevy,

You do not mention how much mucuna pruriens you take each dose. That you'll be helpful to know.

Secondly, the sweetener in Zandopa is refined sugar (I emailed the question to the manufacturer on the container). Are you diabetic too? If so, you know better than I about sugar. Please clarify the situation, for there is an organic MP alternative without the sweetener you can take, but as Zandopa is an 'extract' you will probably need to adjust the quantity you take each dose.

Norton

[Drevy in reply to Norton1]

I'm taking 5x day 7.5gm (1 red scoop). No I'm not a diabetic. What does it mean an herb is extracted. Is there can organic mucuna p. you can recommend?

[Norton1 in reply to Drevy]

Hello Drevy,

From my understanding Zandopa contains the main ingredients of Mucuna Pruriens, but not them all (ie. an extraction). This is supposed to make the resultant powder more potent. I personally can not take it because of the sweetener which is refined sugar (I emailed the manufactuer to find this information). You say, you are taking 5 X 7.5mg scoop per day together with a half of a Sinemet tablet each dose. That seems a lot to me and wonder if you are over medicating yourself. I take less than that (there's no point in me telling you my dose size, because I have a strict daily routine and only take my mucuna pruriens to give me an 'on time' when I achieve my social and domestic tasks. What I will say is that I take X 3 doses a day). I presume you live in the USA which I do not. I think that there is a company which sells quality mucuna pruriens called BanYan Botanicals.

The bottom line is though that it appears to me that it would be better for you to work with an Ayurvedic practitioner to get your doses right rather than doing what you are right now.

Norton

[Drevy in reply to Norton1]

Hello Norton,

If I don't take that dosage of Zanopa, I can't walk, I shuffle, and I'm stiff , rigidity, and shortness of breath. I also think that it is a big dosage. I don't know what other meds or supplement to use.

[Norton1 in reply to Drevy]

Hello Drevy,

You appear to fear undergoing DBS as a treatment to address your symptoms which are different to mine. I just think that given your PD medication history it might be the right time, as your doctor suggests, to consider DBS. I understand your fear, but I believe this can be addressed by researching the undoubted success stories of those who have undergone such surgery. I joined this forum several months ago and found myself being agreeably surprised at just how many PwP's lives have been changed for the better having had DBS. Judging by the numbers it seems that whilst it is a major operation, it is almost routine in some hospitals. Why not start by reading the DBS threads on this forum, then finding out the best hospitals and surgeons who carry out this treatment. I think that by doing this, you will allay many of your fears.

Kind regards

Norton

[Lolitalola]

I take stalevo 75 5

Stalevo 100 at night

Requip 5 4x

And works fine unless I get a uti , flu etc it messed up

It's not an exact science but it can be adjusted temp.

[JohnPepper]

Hi Drevy

Have you actually tried to work your way through the feelings of fatigue? You will probably find, as others have, that you get throgh it and can exercise the same as you always have. I believe it to be a "Mind' thing and not reality.

John

[Drevy in reply to JohnPepper]

I've tried to walk more when I'm off meds, and my legs don't work. They become stiff, and rigid.

[PatV]

my neuro recommends having an espresso with a snack after meds. Helps me absorb it. Can't overdo though because then up all night!

[Drevy in reply to PatV]

Expresso and a snack, what is that supposed to help?

[srarndt]

"Please help" - what would you like help with? To get or avoid having DBS? I'm sorry, i just do not understand your question...

Steve

Bisbee, AZ

[maryalice]

Drevy,

I've had PD for a little more then 15 years too. Are you getting enough sleep at night?

If you're not then I recommend 5-HTP. I've been taking it for years and I sleep through 7-8 hours most nights. Check with your doctor or pharmacist first because you can't take it with some medications. It's all natural. CoQ10 seems to give me more energy too. I know that you tried alot of different treatments and I admire your courage. Don't give up. Blessings

[onewithnature]

Zandopa is mucuna and is a form of dopamine and has helped many. I take about 1/4 of a scoop with 1/2 sinemet twice a day. I feel much better taking it with sinemet vs. taking sinemet alone without it. I bought it online, directly from India from an ayurvedic web store. They shipped it via express delivery which took less than a week to get here in the USA. Here is the link to their web page if anyone is interested -

ayurvedabay.com/zandu-zando...