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Old 08-21-2008, 10:30 PM #1
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Default Mucuna and dyskinesia

Does mucuna cause dyskinesia?
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Old 08-22-2008, 01:58 AM #2
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Mucuna and Dyskinesia

In my experience with taking mucuna for the past two years is yes, you can experience dyskinesia, if you take to much.
My symptoms are: To much body movement, especially when I'm trying to talk. I end up talking to fast. I get antsy and a bit hyper. I even find myself passing people when I'm walking.
This usually happens, if I don't wait long enough for the last dose to wear off (minimum 2 hours) or if I've added a bit more because I've thought that I've didn't take enough.
Mucuna isn't perfect: It sometimes vary from batch to batch, but like sinemet; What you eat, how active you are, stress, etc. all effects the effectiveness of mucuna or pd meds.
Overall I'm still pleased using mucuna. But I'm still trying to keep my herbs/meds to a minimum and not take anything in the evening till morning (sometimes I can go 16 hours totally unmedicated). I believe it's important to give your body a break off herbs/meds.
I truely believe that we are capable to recover from PD. Only if we body a chance.

Max
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Old 08-22-2008, 02:34 PM #3
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Default my thoughts

dyskinesia is a very odd thing....I don't think anyone really understands it. It is a form of Irritation to our systems, brought on by levodopa...but what is it about the levodopa that causes us to start to move so bizzaarly. It seems to effect our muscles, tendons and it's as if some evil puppeteer has control of our strings. I experience less of it if I eat a lot of veg and carbs in small increments as a compliment to my medication. I've also found that sometimes we just need a good drink of water. Does that wash out some of the whatever it is thats irritating our system. Is it a byproduct of the use of levodopa that our bodies get overloaded with. There are way more questions than answers.
Because mucuna is a naturally occurring form of levodopa, it's only logical to assume that it can create dyskinesia but the why, and how are just speculation. because its in its naturally occcuring form with no additives (not Zandopa) it should be less likely to cause dyskinesia. I'm just dabbling in mucuna for the moment. The one big plus so faris I sleep really well at night. However it doesn't seem to help much with my tremor, my most stubborn symptom.
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Old 08-22-2008, 05:06 PM #4
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Default oddities

When I first started with mucuna, just a little too much set me to wiggling. After a few weeks I realized that the DK had disappeared. Over the last couple of weeks, I have been phasing out the mucuna as part of my testing. I restarted it at a low dose yesterday and the DK was back. Just more data for the heap.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 09-02-2008, 06:02 PM #5
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Rick, I feel like a lab rat, always testing to get off all drugs. After using Zandopa for approx. two months I found when I was getting close to the next dose time my body would start getting anxious, eventually it shot my nervous system to hell, what I have left of one, that is. I am ramping down 1/3 every 3 days. I was going to just stop taking it period, cold turkey, but I know that was stupid thinking. It is when you put a drug close to your mouth and your brain is telling you in some way NO I figure there is a reason for this. For me Zandopa proved to be highly addictive and very dangerous. It caused me to re-experience some former pd symptoms, I lost my confidence and more strength. I need to exercise to try and prevent the necessity of having to have neck and back surgery. I am seriously de-conditioned and weak as a kitten. I'll figure something out.

Bonnie
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Old 09-02-2008, 09:18 PM #6
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Lightbulb I am praying for you -

dear one,
I am sorry you feel so weak, you are in my thoughts -sending you light,
and strength...
tena

Quote:
Originally Posted by smithclayriley View Post
Rick, I feel like a lab rat, always testing to get off all drugs. After using Zandopa for approx. two months I found when I was getting close to the next dose time my body would start getting anxious, eventually it shot my nervous system to hell, what I have left of one, that is. I am ramping down 1/3 every 3 days. I was going to just stop taking it period, cold turkey, but I know that was stupid thinking. It is when you put a drug close to your mouth and your brain is telling you in some way NO I figure there is a reason for this. For me Zandopa proved to be highly addictive and very dangerous. It caused me to re-experience some former pd symptoms, I lost my confidence and more strength. I need to exercise to try and prevent the necessity of having to have neck and back surgery. I am seriously de-conditioned and weak as a kitten. I'll figure something out.

Bonnie
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Old 09-03-2008, 05:28 AM #7
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Quote:
Originally Posted by CTenaLouise View Post
dear one,
I am sorry you feel so weak, you are in my thoughts -sending you light,
and strength...
tena
Thanks Tina, I understand the concept of the light much more these days, my own personal light.....not to sound hippie trippy or a new ager. YIKES, heaven forbid. Have you read 'Eat, Pray, Love' yet? I send you the same back to you.

Bonnie
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Last edited by smithclayriley; 09-03-2008 at 05:30 AM. Reason: grammer
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Old 09-03-2008, 09:25 PM #8
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Default mucuna..

is not quantifiable as to how much l-dopa you are taking and it has no peripheral decarboxylase inhibitor. We have gone over this many times in the past, but it is never too often to stress the importance of certain subjects, because new people are coming here with the same questions, all the time.
Back when L-dopa was discovered, it worked well for a short time, then side effects such as dyskinesia came on rapidly. This was because the dose became too high to continue working as it did at the onset of treatment. Without Carbidopa (or Benserazide in the UK), too much of the dopa molecule is converted to dopamine outside the brain. Dopamine itself does not get into the brain to do it's work; it is the L-Dopa that gets into the brain and is transformed into dopamine by the same enzyme that converts L-Dopa into dopamine outside the brain. This enzyme removes the carboxyl group on the dopa molecule , converting it to dopamine. This dopamine outside the brain is worse than useless, it does not have the same effect as dopamine in the correct amount in the right brain compartments. Instead, it acts directly on muscle tissue, causing exacerbated movement disorder effects, ie., dyskinesias. It seems questionable why dyskinesias develop with time, even though you are taking a preparation of L-Dopa, that contains carbidopa (sinemet);but that happens with time, probably due to the efficiency of conversion from L-dopa to dopamine in the brain. The ever increasing doses needed for the same effect, without increasing the peripheral decarboxylase inhibitor, is probably responsible for dyskinesias that show up after a few months to years on a regular dose of dopa. Correct with me if i'm wrong.cs
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Old 09-04-2008, 05:02 AM #9
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Default ol'cs: pls substanciate

quote "This dopamine outside the brain is worse than useless, it does not have the same effect as dopamine in the correct amount in the right brain compartments. Instead, it acts directly on muscle tissue, causing exacerbated movement disorder effects, ie., dyskinesias"
I am very concerned about this because I am taking mucuna. I have followed up most of the research and documents on mucuna and this is first time I read that l-dopa outside the brain has effects on the muscles , ie dyskinesias.
Is this your own opinion ? can you pls substanciate?
I grant you that that the l-dopa of the mucuna which reaches the brain may eventually cause dyskinesias.
thank you
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Old 09-04-2008, 07:28 AM #10
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Default not so sure

Isn't dopamine produced in various areas of the body? The gut in particular?

More to the point, though, with the mucuna I found very little DK if I did not mix it with sinemet.

It may be the cardopa, but there is another possibility besides dopamine excess - increased sensitivity to the dopamine in the brain.

I'm still taking mucuna but at a much lower dose ( 2 to 3 grams ). Based on the published studies I started out in the 30 to 50 gram range. There were DK problems but not in a direct dose relationship (i.e. I would have been nearly non-functional had there been.)

Definite room for research here.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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