I am currently taking C/L 25/100 every 2 to 2 and a half hours to total 500 mg from 9 AM to 6 PM. It has been recommended that I take C/L 50/200 CR at 9 PM when I go to bed to help me sleep, and also to provide L-Dopa during the long stretch of time at night when I am not taking the C/L IR. The reason given is that your body does need some l-dopa even when sleeping so it can carry out efficiently what it needs to while you’re asleep. Anyone else taking C/L CR at night for similar reasons?
C/L CR recommended for overnight treatment - Cure Parkinson's
C/L CR recommended for overnight treatment
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Spottedtowhee
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42 Replies
•
Yes
Spottedtowhee• in reply to
RoyProp, do you find it helps you sleep longer? I wake up after three or four hours and that’s it for the night. I also understand it can help with anxiety during the night when you’re lying awake.
• in reply toSpottedtowhee
Like clockwork I awake at 4am and then my tremor kicks in. Sometimes I do go back to sleep for two hours.
Toogood• in reply to
Same...
froome• in reply to
Exactly the same.
I take only the CR version night or day.
Do you find it helps you sleep longer through the night?j
Yes. My sleep is not interrupted due to a lack of dopamine.
I currently do not take any c/l when I am in bed for sleep. I typically do not experience much pd symptoms when I am sleeping (or they are so minor that the don’t disturb my sleep). Do you experience pd systems that disturb your sleep? If so, a CR dose at bed time may be helpful.
Btw I don’t know your history but you may be able to increase your inter dose interval by taking CR during the day... for example, I can achieve a 4 hr inter dose interval with a combination of CR and IR...
Spottedtowhee• in reply to
I don’t have symptoms that disturb my sleep. I wake up abruptly 3 to 4 hours after going to sleep and I can experience anxiety as I lie awake for the rest of the night. Otherwise I’m quite comfortable. The idea was that the l-dopa released by the CR formulation during the night would prevent me from waking up and relieve the anxiety. It was also to prevent going a long stretch at night without L-Dopa supplementation that your body/organs need to do what they do at night. I’m wondering about that theory, whether you need the extra L-Dopa even if you’re comfortable or whether it is better to go 12 hours without taking the extra drug.
• in reply toSpottedtowhee
Spottedtowhee, I understand your response, and it is a very interesting topic... One that has also been on my mind recently... I often wake up in the morning with a “Hangover” feeling (when not drinking alcohol)... one theory I had was that it was due to not taking c/l around the clock... ie a kind of response to flooding my body with dopamine (from the c/l) during the day, and them the hangover is some kind of physiological response to becoming depleted of dopamine at night... supporting this theory is a recent observation of high blood pressure upon waking that returns to normal after the first c/l dose of the day takes effect... but this does not necessarily suggest some type of causation...
Now as to your insomnia/anxiety... I have the exact same problem... I feel skeptical that staying medicated all night with c/l will cure this sleep issue, but I still need to run some c/l experiments... I am currently experimenting with melatonin. And have had some positive improvements, with 4.5 to 6 mg taken at bed time... I also am a long time sufferer of advanced phase sleep disorder (going to bed real early and waking up real early). I have had good results taking 3-7 mg of melatonin when I inevitably awaken in the middle of the night...
Lastly I recently got a fitbit Versa 2 which gives detailed sleep analysis, which provide a somewhat objective view of your sleep quality
Spottedtowhee• in reply to
pdinva, are you taking melatonin before you go to sleep and in the middle of night when you wake up? Is the melatonin sublingual so it will act quickly? Glad it’s working for you. I read a post by one of our fellow members who says he staggers his dose of melatonin dividing it and taking the first dose at 3 hrs, then another at 2 hrs and lastly at 1 hr before going to sleep. My GP recommended something similar today that you need to take it at least 2 to 3 hours before you go to sleep, not right at bedtime.
I’m going to try it.
That’s interesting about your blood pressure. Glad it normalizes with your first dose.
I wonder what subtle physiological abnormalities are occurring while we sleep with low dopamine levels.
Let us know how the trial you mention goes, Spottedtowhee.
• in reply toSpottedtowhee
>pdinva, are you taking melatonin before you go to sleep and in the middle of night when you wake up?
yes
>Is the melatonin sublingual so it will act quickly?
I have two types of melatonin I have been trying - Vitafusion and Solimo. The Vitafusion is a chewable gummy. It also includes a few other "sleep support" ingredients like passion flower. The Solimo is a tablet and contains only melatonin. I think both are considered "instantaneous release".
Note that I often have no problem initiating sleep and will often sleep quite nicely for several hours, at which point I awaken, and will not be able to get back to sleep then, due to anxiety/ruminating...
FYI, I was also told by a nurse practitioner to take the melatonin several hours before bedtime, but I have tried both this, and also taking it immediately before bedtime, and have not noticed any difference...
I suppose that since my problem is not always the initiation of sleep , the timing of this first melatonin dose is less important for me.
Toogood• in reply to
What’s CR please...
Controlled release, dispersed over time. Also referred to as ER, extended release.
Enidah• in reply to
I am also trying to take C/L control release during the day as well as at night using immediate release as needed. It seems to me that it increases my dyskinesia. I wonder if anyone else is found that to be true.
Take Rytary (Extended release C/L) at 10pm and 3 other times a day along with Mucuna Pruriens capsules throughout day plus B-1, LDN, CBD and others.
I take the slow release cl25/100 to help with turning etc during the night
Does that dose help you all through the night?
Usually. Until 6a m
i take SR 25/100 at bedtime. Not enough in my view but told docs and nothing done or said. I feel shit when I wake up , usually around 4am shaking and feeling I'm going to die! My first day dose is 8am two 25/100 normal tabs. but I won't feel well till my second dose at 12md. My regime is crazy.
I don’t see that there is much reason for suffering any more than we have to. Why not take your morning dose early and do what somebody call dynamic dosing, simply take your meds when you need them. If I didn’t do that I would be spending most of the time off and miserable.
Well if this can help any one great. I take carbidopa 37.5 and Levdopa 37.6/Entacaone 200(Slalevo)every 4 hours starting abut 1to2 hours After
Waking.I do not take any c/l to sleep. Seems to control symptoms pretty good. Have been on this dosage for about 5 years . Sleep is another issue. I take 10 mg melatonin .5 Zantac and a 50 mg Tramadol at bedtime sleeping 7 to 9 hours. (beautiful) Before this 3to4 hours top. These are my recipes I have concocted last 5 years .i have been a Parkinson’s patient 15 years.
I was initially prescribed CR for all doses but once I was introduced to a Parkinson’s Nurse she suggested that I asked my Consultant to try me on Sinemet Plus during the day but keep taking CR at night time. The other issue she addressed was the fact that I often wake up at roughly 4 am which she said was likely to be caused by a Dopamine drop and for which she suggested taking a Madopar dispersible which is absorbed quickly.
This is the routine I’ve followed for some years now. Hope this is helpful.
Do you find the Madopar taken at four a.m. helps you get back to sleep again?
There seems to be two types of PwP: those who wake up in the morning barely able to function until their first dose of the day kicks in; and those who wake up in the morning able to perform well, often for several hours, before taking their morning meds. Presumably, this second group still have some dopamine being produced naturally (endogenously). 14 years post diagnosis I am in this group. I feel that if I take a delayed first dose, to begin with, my symptoms worsen for a while until the first kicks in.
John
Do you find your email symptoms suddenly worsen minutes before you take the first morning dose after you’ve been ok for a few hours after waking up?
You write: "email symptoms"?
For me the symptoms typically get worse after I take the first dose.
See the graph on my web-site. This shows my side-to-side tap test score (high is good) taken both before and after my first dose of the day.
Yes and working well for me
Yes, I am trying that again and it seems to be working better this time than last. I am very conscious of the fact that what doesn’t work at one point may work later on. My wake up time every night is 2 AM. I quite often have to take a low dose of Xanax in order to get back to sleep. Also C/L as being off causes intense pain in my upper arms and shoulders and general discomfort.
Hi Spottedtowhee,
I thought I’d share my experience in case it helps in some way .
What happens to me is I get awoken from a restlessness and often an internal tremor at 2-3 AM (which is strange because I don’t have a tremor dominant type of Parkinson’s. I have more a PIGD type.)
Anyway, it’s annoying to have ones sleep disrupted and I’m aware of how sleep is VERY important for the brain, so it distresses me not to get a full night’s sleep.
A few years ago, my neurologist suggested I take a double dose CR Sinemet pill at bedtime, but when I tried it,I had really crazy scary dreams.
What I do now that works better is I take my usual Sinemet C/L pill when my body wakes me up (2:00ish) plus I add a third of a yellow Sinemet (immediate release )pill so I can get back to sleep sooner. I try to sit up and take 6 ounces of water with them to help speed the meds down the chute where they will do their job.
It’s still a disruption, but if I can squeeze three more hours of sleep it helps me function my next day.
By the way,I tried melatonin once but it made me feel both sleepy and at the same time buzzed as if I’d had 2 espressos! I have no idea why I would react that way… anyone else experience that ?
I may give it another try ....things are always changing with me, so you never know, maybe it’ll work next time . I will take the advice to take melatonin three hours before I go to bed instead, as someone here suggested.
Whats PIGD?
Postural instability gait disorder
I think that’s what I am. my neurologist says it’s hard to know but it’s looking that way.
It’s a non-tremor dominant subtype.
Sorry hit send early..... I put three 25/100 at my bedside table and either take as soon as I wake up or I set my alarm one hour before I get up and take them then
What happens if you get behind your regular schedule of taking levodopa?
I have found getting behind on levodopa similar to getting dehydrated from lack of water.
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