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.
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Dpeachey
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Please note: I'm not a medic. So, make of this what you will.
Rather than try to find the best regimen for the whole day in just one step, I would try to find an improvement for just one part of the day.
For instance, you write:
" 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."
This suggests that you're under-medicated from, perhaps, 0900 to 1100. What happens if you take the second dose earlier at 0830? This neatly avoids the impact of your breakfast.
If you find something that works, you trial this for a few days. Of course, if you bring a dose earlier, you may create a problem later in the day. Then, go on to the next time at which there is a problem. Continue in this way until you have completed the day.
You may also like to look at "dynamic dosing", of which there are a number of posts on the forum.
With three and a half hour dosing, using extended release you are likely to run into stacking, where the doses add up over the course of the day. Also extended release takes longer to get started. As an experiment you could try changing just a single pill from IR to ER at one of your doses to see the effect.
To switch over entirely to ER you could try 3 x C/L ER 25/100 at 5 or 6 hour intervals. Alternatively you could just take the immediate release a bit more frequently.
My husband feels best if he has doses closer together at the beginning of the day then less at the end of the day when he has the benefit of the tails of the previous doses of the day overlapping.
Try taking one when you first wake up at about 5.30 then your one at 7 and then one at 8.30 then carry on your normal regime. Ie juggle the existing doses to be more frequent. Maybe halve the last dose too and take the other half at 8.30.
That sets a series of offset peaks which keeps the blood level more steady. This is my theory only, not doctor advice, that we have found works.
Also he did try the ER which made him very sick after about a week of it. I think it was way too strong for him as he takes the 50/12.5 madopar still. It may work ok for people who are already on a much higher dose.
I have experienced similar story to yours and experimented a lot. I first tried taking my C/L every 3 hours to try extending on time. Worked somewhat but then very difficult to add food and other supplements into the remaining hours. So I have now settled for CR at 10.30pm which usually gets me through to 4.00am so first dose at 4.00am followed by next at 8.00am next at 12 noon then 4.00pm then Mucuna at 8.00pm and finally another CR at 10.30pm then bed. Working very well just now
I am also trying to adjust to CR. Your schedule looks promising but can you share how you integrate meals (what food and when) around this schedule? Thanks for any help you can be.
Hi I take levodopa 8am breakfast 9am. Levodopa 12noon lunch 1pm Levodopa 4pm dinner 5.30pm no further food until breakfast next day. I fit in my other supplements like b1, magnesium and others throughout the day. It’s a challenge.
I was diagnosed in 2015 after 7 years of being misdiagnosed with an essential tremor, I tried the extended release, carbidopa levodopa, and did not do well. It made all my symptoms worse. We continued my current dose of two immediate release carbidopa levodopa 25/100 every four hours during the day., and Amantadine twice daily, with off periods occurring one hour before the next dose. Eventually, Gocovri was added to my collection of medication‘s. It is very effective! Little or no off times more energy, & clarity, especially no dyskinesia! During off times I had a lot of pain in my shoulders and upper back, and bradykinesia which is gone now with Gocovri. It has been a wonderful addition to treating the symptoms.
when immediate release was no longer lasting enough and my days felt like a roller coaster, I started combining 1 IR and 1CR every four hours. That worked for a while, until it still didn’t last. And food interfered so much that I was eating only twice a day and losing weight. So then I switched to Rytary, now I can eat 3 meals a day, it’s better, not perfect, but I’ve gained back a few pounds and I’m exercising more.
My extended family are all insomniacs. At family reunions we all stand around talking about our sleep meds. When I was young and strong I never bothered with sleep meds- I just got a heap of work done, and read lots of books when I couldn’t sleep. Not so anymore. I take my hat off to you, Ifallis for working with no sleep with Parkinson’s. Most prescription sleep meds are quite cheap here in Canada. The Trazadone I currently take works most of the time and I feel very wide awake days. I used to have terrible trouble driving sleepy when I was young.
I am also struggling with delayed on time; I share my story .
Diagnosed 11 years ago at 28 years; honeymooned with pramipexole ER BD for seven years, then got pregnant and switched to levodopa 125 mg IR. Maintained dosage of 2-3 tabs per day (breaking in two pieces) with pramipexole. Lately since a year or so, feeling on time delayed and effectiveness decreasing. I will be 40 this year, working full time in a client facing job with a four year old. Delayed on time very depressing for me but trying different stuff
1. Taking c/l in divided doses; I break 125 mg into four pieces - taking one piece every two-3 hourly with one lemon juice/ orange to facilitate absorption - I feel that when I was breaking c/l into two pieces, I was still taking it 2.5 -3 hourly and now with 1/4 , it’s the same. But at least my medication has reduced. Struggling with delays in on time.
2. Also tried entacapone- no increase in on time at all. Not taking any more.
3. Have reduced taking pramipexole ER BD to one tab every two days
4. On HDT although dunno how much it’s helped
5. Trying to stimulate vagus nerve during off time with massage gun
6. Struggling with sleep and constipation ; drinking more water n switched to millets. Sometimes take magnesium. Sometimes c/l.
We’re all unique in terms of our disease journey, progression and symptoms ; so , I can just advice and you can consider experimenting-
1. Less is more - unlike our expert neurologists’ who believe in increasing the dose is the only solution, I have realized that taking small but freq doses and finding the sweet spot where we are neither underdosed (frozen) or overdosed (dyskinesia) is important. It’s challenging and I am nowhere close but my only win so far is reducing c/l from 4 to 2 pills a day and pramipex from 2 per day to once in two days. Never ever fall in the trap of ‘more medication - more relief’
2. Up the vit C; try taking with pure lemon juice or orange juice - good that you can grow them in ur garden
3. I’d advise against remaining underdosed or in discomfort- my suggestion would be to take c/l as soon as u get up- even one tab ok rather than taking 2 tabs at 7 am. Similarly, if you’re feeling off at 9, don’t wait till 10.30.
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