How much levodopa are you on?

greeneyes1994 · 08-23-2012, 07:01 PM

Quote:

Originally Posted by aftermathman

I am interested in what can be done for dystonia. Any hints ?

Neil

Hi, do you have Dystonia? I do, I'm 17 and take Sinemet Plus.

Conductor71 · 08-23-2012, 07:06 PM

Quote:

Originally Posted by Jim091866

800 is that it? we're at 800 (aside from a few binges). Do I hear anyone for 1,000 mg? 1,000 a day or more...

Until I added Comtan, I was at 1200 mg a day. I don't freak out about it anymore. I have a three year old who needs me, so couldn't care less on the amount. I am lucky in that I don't have much dsykinesia. I am now at 800-900 on a good day. Some days I am right up there with Madamlash. I cannot tolerate more than the bare minimum agonists- what is the point if throw up my dosage each morning? I do take the ER of Requip but find it is very easy to over medicate and not even know it. My liver will probably give up on me some day, but oh well.

I am asymptomatic when on for the most part and prefer that to the yoyo effect on on - off. Also, I started taking Sinemet three times daily but despite also being on Mirapex, I never saw longer than a three hour benefit from the gate.

Bear in mind, prior to add on of carbidopa, people took and tolerated up to 9000 mg a day!

We all have different metabolisms....

Laura

aftermathman · 08-24-2012, 02:17 AM

Quote:

Originally Posted by greeneyes1994

Hi, do you have Dystonia? I do, I'm 17 and take Sinemet Plus.

I have Parkinson's, and unfortunately a common side effect of pd is dystonia. Mine occurs almost exclusively when I wake up so I am assuming it is due to low levels of levodopa. It only occurs in one foot.

I haven't spoken to my neurologist much about dystonia, I think he believes it to be a drug timing thing and unfortunately I have no cure for it other than immobilise the foot and grab it and attempt to straighten it out.

I am sorry you have dystonia at such a young age, from the little I know dopamine responsive dystonia affects younger people quite frequently.

Stick around as dystonia is dystonia whether pd related or not and with luck you may get some hints.

Take care,
Neil

reverett123 · 08-24-2012, 02:56 AM

Greeneyes-
(lovely name, BTW)
Dystonia in left foot most mornings about 3 AM. Lasts about 30 minutes then gone. Nothing seems to hasten its passing. However, forcing it is usually a bad idea - sometimes a real bad idea as muscles knot up.

My own theory is that it is tied in to two things. Time of morning as day begins and levels of B-vitamins and electrolytes. All are water soluble so monitor urine output to know when to take extra.

Nice to have you stop by. You are welcome here.
-Rick

paddy · 08-24-2012, 05:51 PM

Hi Greeneyes

I don't know if you have come across the PD Junction site in the UK. There are a one or two younger people on there, at least one in his twenties. Just thought I'd mention it

All the best

Aunt Bean · 08-25-2012, 06:32 AM

I take approx -45 mg natural l-dopa from fava top tincture )or from fava sprout tincture broken up into about 5 doses a day. Plus a couple fava sprout balls (about 3 mg each) and an occasional mucuna powder ball, if I need extra quickness and energy (like pulling cord to start a weedeater (can't do that without a mucuna). I think that the fermented papaya that I take helps too and the supplements...especially B comlex 100/ turmeric/
lecithin/ memory enhancer/ calcium, magnesium &zinc liquid. Lots of sunshine and hard work........singing and playing music , also. God Bless. Have a great day

imark3000 · 08-26-2012, 05:55 PM

Quote:

Originally Posted by Aunt Bean

I take approx -45 mg natural l-dopa from fava top tincture )or from fava sprout tincture broken up into about 5 doses a day. Plus a couple fava sprout balls (about 3 mg each) and an occasional mucuna powder ball, if I need extra quickness and energy (like pulling cord to start a weedeater (can't do that without a mucuna). I think that the fermented papaya that I take helps too and the supplements...especially B comlex 100/ turmeric/
lecithin/ memory enhancer/ calcium, magnesium &zinc liquid. Lots of sunshine and hard work........singing and playing music , also. God Bless. Have a great day

Thank you so much for your inspiring posts that radiate contagious happiness and sunshine.
I would very much appreciate you telling us if you take any chemical drugs such as sinemet. Also how long ago you were diagnosed with PD.
Imad

Happyguy · 08-27-2012, 11:02 PM

About 1000 - 1200 mg per day. 4-5 times spread out in the day.

Quote:

Originally Posted by reverett123

I take 600 mg per day. The following caught my eye recently and makes such good sense that I thought I'd pass it on.

1: Rinsho Shinkeigaku. 1994 Mar;34(3):264-6.

[Gastric acid secretion and absorption of levodopa in patients with Parkinson's
disease--the effect of supplement therapy to gastric acid]

[Article in Japanese]

Yazawa I, Terao Y, Sai I, Hashimoto K, Sakuta M.

Department of Neurology, Japanese Red Cross Medical Center.

Since an oral regimen of levodopa has been instituted for treatment of
Parkinson's disease, its absorption and metabolism has been well demonstrated.
However, its chemical characteristics of high solubility in acid solution and low
solubility in water have not been well known. We paid attention to this
characteristic and studied the relationship between its absorption and gastric
acid secretion in 38 patients with Parkinson's disease who became refractory to
therapy of levodopa. We measured the pH and amount of collected fasting gastric
juice. Gastric acid secretion was decreased in 22 patients (58%). In ten of these
22 patients, 30 ml of lemon juice was prescribed in every administration of
levodopa as a supplement to gastric acid for two weeks. Increases of L-dopa
concentration after 60 min. and 180 min. were observed after lemon juice
supplement therapy. Among the Parkinson symptoms, rigidity, akinesia, and small
step gait were improved in every case except one patient who showed decrease of
L-dopa concentration at 180 minutes. However, improvement of tremor was less
remarkable. We consider this supplement therapy to gastric acid is one of the
effective and useful methods in the management of Parkinson's disease.

PMID: 8200147 [PubMed - indexed for MEDLINE]

Chicory · 08-28-2012, 02:12 AM

I take 800 mg per day- 1 pill every 2 hours from 6 am to 8 pm. I cannot take 2 pills at a time because of dyskinesia and dyskinesic dystonia.

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