I realize this comes up for discussion quite frequently, but I’m going to ask for some advice here for my particular situation. I was diagnosed January 14/ 2014 with idiopathic Parkinsons Disease, and purposefully avoided starting the C/L treatment as long as I felt I could. I don’t remember the exact date when I started taking 25/100 C/L 3x daily, but my best guess is about 5 years ago. Starting at this dose, I couldn’t tell any difference. Shortly after this I had my first consultation with a Neurologist. He immediately upped the dosage to 2 25/100 4x daily. That did the trick and I coasted along quite comfortably until I had a bad case of Covid-19 almost two years ago now. I’ve always been a light sleeper, but this bout with Covid sent me into a mad ride of insomnia and akathesia that was absolutely hellish. At about 1 week with no sleep I checked into emergency at the hospital, where the Doctor tried 3 sleeping pills before hitting on one that worked. So I went 2 weeks with barely 4 hours of sleep. When I finally slept 7 hours on a dose of Temazepam, I cried for joy when I woke up. But my troubles were not over. This is also when my 800 mg daily dose of C/L started becoming less effective. The next 6 month checkup with my Neurologist I told him if it has to be like this, I really don’t want to live very long.
Now 2 years later, I’m still on the same C/L dosage, with a slight change of schedule. I keep a quite rigid schedule and there are not many days that my symptoms vary much. Sometimes stressful activities can make my off periods longer, but I’ve gotten quite skilled at knowing when to add an extra pill to get me out of a bind when I’m in a public situation. So here is the breakdown of my daily experience with C/L and Parkinsons.
I wake often at around 4:00-5:00 feeling quite rested, but don’t get up until my wife’s alarm goes off at 6:00 AM. We get up and stretch a bit, use the toilet and get a drink, then crawl back in bed, and pray together for a few minutes. Then we get dressed and go out for a short bike ride, weather permitting. When we come back in, we read and browse a bit on our phones. At 7:00 I take my first dose of 2 25/100 C/L. Back to reading until breakfast is ready at 7:30. I usually take the early part of the morning fairly easy, because I start to go off at about 9:00. I endure feeling quite shitty as I take my second dose at 10:30 and it can take from 30 minutes to an hour before I feel good again. It does speed up the C/L effectiveness if I go for a brisk walk which I usually do, if at all possible. I often take off walking at around 10 o’clock and that improves how I feel. Lunch at 12:00 noon, and I lay down for a nap after for around an hour. I don’t experience much discomfort when napping. I usually don’t fall asleep, and spend most of the time reading. At 2:00 PM I drive to the post office for the mail, and take my third dose of the day. I find things to do, for the rest of the afternoon, especially in the huge garden that my wife and I plant each spring. It’s way too big, but we love to give away fresh, delicious vegetables, so we break our backs gardening. 5:30 I take my last dose of the day, and I have to retire early, or I start crashing at about 8:30 PM. My wife and I stay up in bed, usually catch a good movie. If we have visitors (which we often do- we have 12 kids, all but one living nearby, all married but one,) I have to bow out and my wife will stay up visiting with them till they go. They are very considerate of my condition, so they don’t usually stay late.
I should also add that when I mentioned the way the drugs are wearing off to my Neuro, and suggested controlled release he frowned on that and set me up with 200 mg Entacapone with each of the 4 daily doses of C/L. I couldn’t tell any difference except for more lightheadedness. Two months ago I stopped taking Entacapone, and again, I couldn’t tell any difference. I ran into opicapone, a.k.a. Ongentys, and it seemed to sound like a better option than Entacapone, so I ordered a three month supply of it. I’m now two months on Ongentys, and it’s no more effective than Entacapone. I’m kind of glad it doesn’t work, as it’s hard to come by in Canada, and very expensive. So now I hope someone on HU can give me some helpful advice on how best to lengthen out my “on” times, possibly with extended release C/L, or even some other drug entirely. I have always read with great interest what park_bear writes about extended release, or any subject for that matter, so I hope to find out something useful.
Is Dopamine produced, stored and then depleted or just produced and used at same time?
Extended Release Carbidopa Levodopa
Neurologist Examination
What concentration of Ketones may beneficial?
