Some questions for everyone.: Here we go... - Cure Parkinson's

Cure Parkinson's

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Some questions for everyone.

Bailey_Texas profile image
14 Replies

Here we go.

When i take carbidopa-levodopa alone at about the 3 hour point it starts to fade and my hands, feet,arms,legs start hurting. My legs get weak and i sometimes get depressed and i just feel like the world fell on me. I sweat on my back and my legs i have hot flashes. I am cold and hot at the same time.

When i add Ropinirole (Requip) i have very little or no problems at all.

I have been on Ropinirole for the last 5 years and i quit taking it about 5 weeks ago.

Now the question.

Did stop taken the Ropinirole cause the problems when the C/L stops working?

Or does taking the Ropininrole just help get through when the C/L is not working?

Are the things that are happening PD or withdrawal from the meds i am taking?

Has anyone here slowly reduced their meds till they were not taking any at all and how did you feel along the way?

The only reason i stopped the Ropinirole was because of the gambling when i am take it and the C/L i do great.

Any insight you can give me will be great.

Thanks

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Bailey_Texas profile image
Bailey_Texas
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14 Replies
racerCP profile image
racerCP

Hi Bailey

I have been following you for at least three years. I have faith in your strength and character. I know you will do what is best for your health and family because we are right behind you. Thanks for sharing your journey. do you remember Bob Raeburn?

Bailey_Texas profile image
Bailey_Texas in reply to racerCP

No i do not.

bassofspades profile image
bassofspades

You may want to consider thiamine at this point. What do you got to lose? All the info you need to get started is in the posts up here

wriga profile image
wriga

Hello Bailey,

C/L produces dopamine in the brain that is used to control nerve messages at the nerve synapses. These synapses need a constant flow of dopamine to function properly. Some dopamine is transferred from one nerve to the next in the nerve chain but any free dopamine is destroyed by enzymes. C/L provides excess free dopamine outside of the nerves until it is recycled, transferred or destroyed by enzymes. Ropinirole is a dopamine agonist, a synthetic molecule that copies dopamine in that it bonds to dopamine receptors and thus triggers the nerve messaging in the synapses. It is likely that the enzymes that destroy dopamine are less effective in removing free ropinirole since it is not a molecule they encounter naturally. This would explain its longer function period but maybe also its persistent side effects.

I would suggest that you consider trying thiamin that is believed stimulates the the natural and constant production of dopamine in the right regions of the brain. This may enable you to reduce the quantities of prescription medicines and have a more stable nerve function with less side effects.

attyj profile image
attyj in reply to wriga

What would be the recommended dosage for starting?

parkie13 profile image
parkie13

Hi, I think two and a half months ago we had a discussion about supplement called citicoline. One of the papers that I read on it was that it augments levodopa. So you can use the same amount and get a greater benefit like before. I have been taking it for about 2 months now. I started with three capsules a day each time after I took levodopa. Now I am down to one capsule in my first morning dose of sinemet CR. The reason I'm taking less because I am not sure if it's skyrocketing my blood pressure. I know that thiamine is definitely skyrocketing my blood pressure. It's something that maybe you want to look into. I'm sorry I haven't been able to find it post. Mary

gilesyassin profile image
gilesyassin

Hi Bailey,

What you describe sounds like a classic "Off" period with both motor and non-motor symptoms. Without the Ropinirole, when the C/L runs out what you see emerging are the stymptoms of your underlying PD.

I only take instant release C/L and cycle through similar off periods as well as periods of dyskinesia throughout the day. My "ON" time continues to shrink the longer I have PD.. The medicine only effective for a short time.

park_bear profile image
park_bear in reply to gilesyassin

You need to do a very slow taper on the ropinerole rather than try to quit cold turkey.

----------------

I am a securities trader which is a type of professional gambler. Know that whenever you place a bet in any venue you are wagering against highly experienced people who make a profitable business of it. Gambling is a highly competitive endeavor. To succeed takes a lot of dedication and study.

in reply to park_bear

park bear, that second part is sooooooooo true!

Art

Eliza-Jane profile image
Eliza-Jane

I was on Sinemet initially, had a bad time. I was then put on Stalevo, after about 3 hrs I was almost crawling around before my next "hit". I told my Neurologist I wanted off medication. He was shocked and wary, but recommended how I go about it. I took it much slower than he recommended. I waited until I felt ok before I dropped some more. I walked back into his office and he couldn't believe I had been off all medication for 2 weeks. I now take 3 X 50 mg Madopar per day plus 1mg Azilect. Going well. Going off all medication gives you the opportunity to assess your body. I'm not saying this would suit everyone, but it helped me.

Cbgs profile image
Cbgs

I have the same OFF symptoms

I would suggest going back on ropinirole or something like it

I hope that helps

Be well

C!

Bailey_Texas profile image
Bailey_Texas in reply to Cbgs

I did and the down time when away

Thanks

gingerj profile image
gingerj

Azilect may be useful to prolong the dopamine in the brain.

Bailey_Texas profile image
Bailey_Texas in reply to gingerj

I took azilect for 10 years and had stop because of bad side effects.

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