Dyskinesia getting bad big movements

[akgirlsrock]

I've tried mucuna early on, don't know if it helped , Symptoms were not bad. How to slowly switch back to l- ,dopa mucuna prions HOW TO GET IT ACROSS THE NLOOD BRAIN BARRIER. I TOOK GREEN TEA DECAF GOLD 50% EGCG which suposible gets it across blood brain barrier. Anyone take Alpha GPC INCREASES CHOLINE, DOPAMINE, SEROTONIN. ALSO I TAKE 2 SINEMET EVERY 3 HOURS, CAN I REPLACE ONE WITH MUCUNA, WILL THE SINEMET HELP GET MUCUNA TO THE BRAIN, TO HELP THE DYSKINESIA. DONT LIKE AMANTADINE. SINEMET IS THE CAUSE

[Juliegrace]

If you are prone to dyskinesia a dose of MP with l-dopa comparable to Sinemet will likely also cause dyskinesia. Which MP are you thinking to try?

[Chicafromchitown in reply to Juliegrace]

Juliegrace

So.....is mucuna to replace one of my three doses of 25/100 C/L .... totally confused 🤷‍♀️ look this is my regime 1 c/l at 1pm 1 c/l at 4pm and the last one at 7 or 8pm

(at 8pm only if I am going to be out) so take mucuna let’s say at 1pm instead of c/l or together with the c/l? Or ......in between 1pm and 4pm? The point in taking mucuna is to take less c/l am I right? Do you think I’m taking too much c/l (3 a day) Ive been on it for three years dx 10yrs ago was on requip for 9 yrs stop taking it, bad very bad situation I went through!!!! serious withdrawal symptoms I don’t even want to remember..... now my neurologist started me on amantadine, she said it was going to help with dyskinesi, but I only get it when I’m under pressure, but I haven’t taken it yet 😜 since I was reading that it belongs to the same family as requip. Going back to mucuna I would really appreciate any advice on this matter..... please, please...... do you know if vitacost has mucuna in capsules I don’t like in powder. I’m also taking the HDT 1 500mg capsule a day. Thank you 😊 I hope I get some responses bless all 🙏🏽

[Juliegrace in reply to Chicafromchitown]

How are you in the morning since you do not take your first dose until 1 pm? My experience with mucuna is that if I take enough to be fully "on" I still have dyskinesia. Recently, though, I have been taking a relatively small dose of 20% l-dopa mucuna to help me sleep and I think it works. I take 10/100 c/l rather than 25/100. I find my dyskinesia is more manageable on it.

[Chicafromchitown in reply to Juliegrace]

Juliegrace

I’m assuming you take it at night, since you have trouble sleeping right? so maybe I should take mucuna in the morning, since I don’t take anything till 1pm what is l-dopa? any suggestions for a good brand? Thanks for replying 😊

[Erniediaz1018]

Julie grace is right, she's the one that made me aware that I should reduce my ldopa in the form of pure Mucuna 99% extract. Get the right dose of Mucuna with b1 and it will stop dyskinesia

[akgirlsrock in reply to Erniediaz1018]

It's been awhile since I used mucuna which one do you like, also isn't their a liquid form, Would that work faster, or does it still have to be absorbed in our lower intestine, isn't that where the amino acid magic happens. I read mucuna doesn't cross the blood brain barrier.

Thank for your advice, Maria

[Erniediaz1018 in reply to akgirlsrock]

I use nutrivita powder, I capsulate it into 500 mg and take it with b1.

[trishjaustin in reply to Erniediaz1018]

How often do you take MP?

[Erniediaz1018 in reply to trishjaustin]

Every four to five hours.

[reedboat2 in reply to akgirlsrock]

I use Barlowe’s 40%, one capsule every 6 hours. I have found that substance and dosage to be quite reliable. Good luck and hope you find something that works for you, - JG

[MBAnderson in reply to Erniediaz1018]

Ernie, Do you mean you've reduced your dose of 99% pure or you reduced Sinemet because you're now taking 99%?

[Erniediaz1018 in reply to MBAnderson]

I reduced the initial dose of 99% Mucuna because it was too much. I use to take sinemet occasionally because I was using powder form Mucuna and b1 so it was difficult to carry around and mix when I went out. Now I capsulate my own so I don't use the sinemet.

[MBAnderson in reply to Erniediaz1018]

So you don't take Sinemet, but you're taking pure levodopa, is that right?

What do you feel is the advantage of taking pure levodopa over Sinemet?

[Erniediaz1018 in reply to MBAnderson]

Yes that's right. The Mucuna stops the tremor, the sinemet does not.

[MBAnderson in reply to Erniediaz1018]

Thank you, Ernie, now I'm clear.

I'm glad it's working so well.

[Erniediaz1018 in reply to MBAnderson]

Trial and error. Today was a good day 😊. I enjoy sharing with those that can identify.

[TSonmez in reply to Erniediaz1018]

My mom doesn't have a tremor. She gets very bad dyskinesia from her sinemet but she literally cannot move without it. Should I try mucuna with a little less sinemet for her to reduce dyskinesia?

[reedboat2]

You could try Mucuna with Sinemet using a lower dose of each. For example if you’re prescribed 2-Sinemet 25/100’s, take 1 with a 100mg equivalent dose of Mucuna. You could also try taking smaller doses of one or the other more frequently. I have a friend who takes L-dopa every 2 hours. Good luck and I hope you find what works for you- JG

[akgirlsrock in reply to reedboat2]

I've tried 1, 1half it just doesn't give me full control , right hand weak and left foot will turn inward. 2 seems to work best.

[MarionP]

It's important to understand that whatever source you use, unless it is manufactured by a pharmaceutical company to pharmaceutical grade standards of material and quantity, there is no way at all to truly compare dosages among different chemicals/substances, so don't worry about that. Instead, you do what doctors call 'titration,' which is just adjusting what you are using from where you are to where, by seeing what happens, to where you need to be.

Now, very important to know the neurochemistry of dopamine, just a little bit: that the amount of l-dopa in your synapses, regardless of whatever dose of whatever standard or non-standard source you use, has to be within a range, like Goldilocks, not too much and not too little. Too much creates the dyskinesia...too little of course we know what that does. Every person is different, so you have to find your own range that works for you. So you want to adjust, up or down as is your situation, according to how your side effects are going, in the proper direction. How fast or how far you do naturally will relate to how bad the side effect or lack of main effect is going.

So, if you were ever at a point where things were in good balance and you were happy with the results, if that was recent and went with the changes you did on the substance, try to "walk" your way back to that golden mean and see whether that helps. And always communicate with your treating professionals about this, especially if there is a context of other issues, substances you are taking and what for and whether there may be some interaction of them all, maybe they know more about other things going on or switching substances or sources.

[Kwinholt in reply to MarionP]

That was so eloquently put. I love to hear what is working for others. Ive tried different things , some didn’t work for me and some do. My nervousness is i am so active and busy , and to think of cutting back on something and add something new to see how they work together , scares the heck out of me. I know if I get behind on my meds , I can’t move and things get difficult all way around . I am so regimented for the most part I am always on top of it all. But it does get exhausting always trying to be in control. We will see. I appreciate everyone’s in put. Karen