7 days with only 6 hours of down time.

[Bailey_Texas]

I have slept as much as 7 hours straight most nights i have slept 5 hours straight. only have had little depresion 1 night. Before during my down time i had a lot of pain. Now i have no pain just slow and hard to move. All in all i consider my PD under control after 12 years. You can improve i did. years ago i gave up now i can run rings around every one in my family except a couple of my grand kids. My 20 year old grand baby has a hard time keeping up with me.

MY meds now are

3 25/100 and 1 50/200 24 hour release c/l every 4 hours 24/7. One 6 mg Ropinirole in the morning 200 mg Gabapentin 3 times a day morning, noon, and bed time. and 2 or 3 12 oz Doctor Pepper a day. The cola helps keep me from being sleepy (caffeine and sugar). Gabapentin will knock you out till you get use to it. The second day on Gabapentin i sat down on the toilet and caught myself just before i fell off. I set back up and passed out again and almost hit the floor before i caught myself. The Gabapentin reliefs my foot pain and body pain and helps extend my up time. I have gone 7 hours on one dose. The Ropinirole stopped the stiffness. The c/l of course helps me move. i stopped each med to see what would happen. I do not have tremors so i can't say what this regiment would do for tremor.

I have been doing good for the last year but i had a lot o f off time.

[jeffreyn]

Hi Bailey,

If my maths is correct, you take 3000 mg of levodopa per day. Have I got that right?

Jeff

[Bailey_Texas in reply to jeffreyn]

yes ii take 3000 mg a day. I just kept upping my dose till i got what worked Told my DR he had no problem with it as long as i have no major side effects and i don't. That is what it takes to get 4.5 hours of relief. This way i have enough overlap so i have no down time. With the Ropinirole and Gabapentin i have very little Dyskinesia. All i do is rock back and forth a little when i am just sitting around.

[Greenday in reply to Bailey_Texas]

Mind dopamine agoninst such as Ropinirole & Pramipexole and may cause Sleepiness as a side effect. This effect may be exacerbated when taking with Gabapentin.

Sleep attacks in patients taking dopamine agonists: review

ncbi.nlm.nih.gov/pmc/articl...

[racerCP]

Hi Bailey,

I hope you take very good care of yourself. You are a warrior and we are honored to have you on this website. I am concerned about the Gabapentin interaction with some of the other drugs. It's my understanding Gabapentin is not particularly dangerous on its own but can be lethal combined with certain other drugs. I am sure your doctors are keeping track.

[Coot18 in reply to racerCP]

anyone on selegiline?

pay attention to interaction with alcohol

[Greenday]

Thank you for sharing your genuine account, you've done remarkably well so far.

Regarding the high dose of levodopa:

Some human studies suggest that Citicoline (CDP choline) could cut the levodopa dose in half.

* Citicoline in the treatment of Parkinson's disease *

researchgate.net/publicatio...

"Eighty-five (85) patients with an established diagnosis of primary Parkinson's disease were randomly assigned to receive their usual dose of levodopa (mean, 381 mg daily) plus 1,200 mg of citicoline daily or half their usual dose of levodopa (mean, 196 mg daily) plus the citicoline.

Results of the Webster Rating Scale, a pegboard test, drawing, writing, and walking tests, a test of emotional state, and an overall assessment, administered before and after four weeks of treatment, revealed no significant between-group differences.

* Improvements on the tests were shown by more patients who received half their levodopa dose plus citicoline than by those who continued to receive their usual levodopa dose plus the citicoline. *

It is concluded that the levodopa-saving effect of citicoline could be used to decrease the incidence of side effects and retard the loss of efficacy of levodopa in long-term treatment. "