Parkinson's Disease Tulip


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Old 11-06-2014, 03:17 PM #11
joanne721 joanne721 is offline
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Default Tremor

Quote:
Originally Posted by Tupelo3 View Post
Sorry, I can't offer any information about mucuna or sinemet, as I've never used either. However, as soccertese stated, tremor is typically the most difficult symptom to control with meds. My tremor isn't as bad as you describe, but I've been able to get some mild control with Amantadine (and have had no side effects from it). I've also had some PWP tell me they get some relief from Artane (trihexyphenidyl), but it does have more side effects (I've never tried it). Finally, you may want to try Propranolol, which is a hypertension drug that has been used quite successfully for controlling tremor with Essential Tremor. It doesn't usually work as well with PD, but it may be worth trying it. Of course, I'm assuming you discuss all of these thoughts with your MDS and not try anything on your own.

Regarding exercise, it does tend to make the tremor worse right afterwards, but then it helps me a lot for the rest of the day. This is very common with most PWP who have tremor. Anything that will get your adrenaline flowing will typically increase tremor short term.

Good luck,

Gary
Thanks, Gary. I have an appointment in about a month with my MDS and will ask her what she suggests -- she prescribed Requip with no results. I decided on my own to try the mucuna.

J
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Old 11-08-2014, 03:33 AM #12
HeartSong HeartSong is offline
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Default Does mucana cause nausea

Does mucana alone (with no carbidopa) cause nausea like levodopa alone (with no carbidiopa)?
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Old 11-08-2014, 12:26 PM #13
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Originally Posted by HeartSong View Post
Does mucana alone (with no carbidopa) cause nausea like levodopa alone (with no carbidiopa)?
Yes, it does
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"Thanks for this!" says:
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Old 11-09-2014, 08:22 AM #14
joanne721 joanne721 is offline
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Default No side effects

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Originally Posted by HeartSong View Post
Does mucana alone (with no carbidopa) cause nausea like levodopa alone (with no carbidiopa)?
Hi HeartSong,

I can only report on my own experience with mucuna of course but I have been taking 1 tsp of organic mucuna powder 2-3 times a day for several weeks. I stir it into juice, applesauce or yogurt. I do not take sinemet or any other drug containing carbidopa and I have not been nauseous or noticed any adverse side effects at all.

Since my worst symptom is tremor and neither the levodopa in sinemet nor in mucuna seems to help that, I stopped taking it for the last two days. I noticed I am a bit slower without the mucuna so maybe it helps with bradykinesia.

Hope this helps,

Joanne
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Old 11-10-2014, 09:00 AM #15
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Originally Posted by bubblyshar View Post
Hi there,

So my Dad just started taking Sinemet 5 months back. This is 4 months into his diagnosis. His main symptom is bothersome tremor (now in both hands). He is taking 100/25 mg 3X a day. He says he feels some ease but I don't see that much of an improvement. His MDS wants him to continue with this dosage for now. He has soming mucuna pills which are by the brand solaray and called dopabean. I am wondering if he could add that to his daily dose. There isn't much ldopa in the pills. But just wondering if that would make a difference.

Any advice would be much appreciated!

Sharmila
I have exactly the same question pertaining to my dad... he has been prescribed the exact same dosage of the same drug the same number of times per day...????????? Anyone with any knowledge on this topic, I would love to have some input as well. Thank you very much... My dad is 89 years old and has been suffering with Parkinson's Disease now for a year and eleven months....
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Old 11-10-2014, 09:57 AM #16
soccertese soccertese is offline
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Quote:
Originally Posted by beeks3010 View Post
I have exactly the same question pertaining to my dad... he has been prescribed the exact same dosage of the same drug the same number of times per day...????????? Anyone with any knowledge on this topic, I would love to have some input as well. Thank you very much... My dad is 89 years old and has been suffering with Parkinson's Disease now for a year and eleven months....
YOU CAN use the search function to find all previous messages about mucana. some people say they like it better than sinemet but think about it, in the age of the internet, if it was truly a useful supplement, don't you think it would be in much wider use? it's been known before l-dopa was synthesized. i've seen posts where people are taking grams of it in lieu of a 100mg tab of sinemet which is manufactured to a certain standard vs a herb where you have no idea what the quality control is, i believe all mucana is grown overseas and in south america.

talk to your MDS, get a book on pd, and keep in mind that at 89 the side affects of any drug are greater than at 60, hallucinations being one of them so your MDS might be reluctant to up the sinemet doseage, especially since tremor doesn't appear to be reduced. i suggest you purchase "The Parkinson's Disease Treatment Book: Partnering with Your Doctor to Get the Most from Your Medications
Aug 1, 2005
by J. Eric Ahlskog" it's an older book but a good starting point since concentrates on how to treat the disease from when first diagnosed and as you progress and gives tables on what are normal dosages at different stages so when you talk to your MDS you'll be able to bring up other choices if you feel he/she left out other options. it doesn't cover alternative treatments.

Last edited by soccertese; 11-10-2014 at 10:42 AM.
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Old 11-10-2014, 10:00 AM #17
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Quote:
Originally Posted by HeartSong View Post
Does mucana alone (with no carbidopa) cause nausea like levodopa alone (with no carbidiopa)?
It varies person to person.
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Old 04-24-2016, 08:32 AM #18
schwad01 schwad01 is offline
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Default thanks and a ?

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Originally Posted by lurkingforacure View Post
We have been taking powdered mucuna for over a year in addition to our regular sinemet dosage. It definitely crosses the BBB, and faster. It also can be taken even if you have eaten, a huge plus for us. We take mucuna several times a day, beginning first thing in the morning to get going.

We do not take a pill, mucuna, we take the organic mucuna powder from a couple of places from which we buy it in bulk one pound bags. One place is Banyan Botanicals, the other I can't remember since it is new for us. Both seem reputable and we don't have any commercial ties to either, just sharing where we get ours.

Sometimes we skip the sinemet because the mucuna has hit so well. Again, not recommending anyone else do that, just sharing what we've done.

A one pound bad of mucuna powder is about $23.00 and we buy several at a time and freeze all but the one we open and use. At 1.5 teaspoons per "dose", one pound lasts a long time
thankyou for the information-to be honest i've read the threads on mucuna and I'm definitely still confused about "dose"--to be specific--I take Stalevo 100/25 6x/day---I bought )oth the Solaray product (333 mg per capsule) and the Banyan mucuna powder will arrive in 2 days--I would to try this but dont want to drastically underdose and, more importantly, don't want to overdose--do you have a suggestion on how i could try the capsule --and when the powder comes--where I might start in terms of dosing and interaction with Stalevo-- I realize this is not a straightforward question!
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