Can you please indicate if when you wake up you need a dose of levodopa to be able to move, and who feels best first thing before a dose?
I just found this picture. Ignore the schitzophrenia references, I just found it interesting how dopamine levels fluctuate during the day naturally in a normal person. Lowest at midday, highest at midnight. I’m not sure how this changes for a pwp. And layering the drugs on top whether allowance has to be made for time of the day, or is natural rhythm so affected a PWP has a nearly zero baseline?
I often wondered why pills have to be regularly spaced during the day but he can go overnight with none and wake up feeling better than for the rest of the day. Is it the natural dopamine being produced? Does that mean he is actually making some dopamine on his own?
And also interesting how a lack of sleep affects levels for a schizophrenic person pushing them into a psychotic state.
Also I kind of feel the strength of the madopar tablets is pushing hubby into this psychosis phase at the peak of every dose (unrelated to schitzophrenia, just seems a similar response.) Maybe his symptoms aren’t psychosis , just agitation . He complains of the pills poisoning him , is suicidal, can smell strong chemical smell.
Thoughts please?
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I usually wake up between 4:30 and 5. My next dose of Carbidopa levodopa is at 6:30. I have difficulty falling back asleep tremors and fear that I'll miss the next dose on time. Once I take that six 30 dose I'm able to go back to sleep after about 1/2 hour.
Interesting so maybe natural dopamine levels are dropping off leaving you in that too little phase which wakes you up? Can you move alright when you go to take the 6.30 dose or are you freezing up then?
Doesn't seem to affect the movement I just got really anxious I'm afraid I'll miss a dose at the right time. Tremors tend to get worse around the time I wake up then settle down about a half hour later when I'm able to fall back to sleep. I also notice when I'm constipated seems to exacerbate the situation
He has rigidity rather than cramping but it is painful so I think they are similar, at least caused by same thing. This looks like an MS drug. Interesting
Are you taking Magnesium? Have you tried magnesium oil, spraying and rubbing it wherever you have cramps? Both have kept my husband's cramps at bay. Don't remember when was the last time he had any cramps.
I do take magnesium. Is magnesium in my multivitamin plus I also take Magnesium Complex before I go to bed at night. The Baclofen is more for rigidity. It's a low dose. I was having issues with not being able to sit 4 more than 5 or 10 minutes without severe cramping and dystonia of my big toe. Since starting the Baclofen I'm able to sit for longer periods of time without cramping. When I do have camping I add an extra mineral for an extra magnesium. So far this pretty much helped. I think baclofen is also used 4 seizures
Thank you for your kindness. Besides Magnesium oil, there is Theraworx which is very good for cramps. You can find it at Walmart. Magnesium Glycinate is very good for sleep.
Instant release, 6 a.m. 2 p.m. 10 p.m. 1 pill 25 mg to 100 mg 5mg baclofen twice a day 12 hrs apart usually 10AM, 10 PM problem times 2-3 hrs after morning and afternoon doses some involuntary movements.
I don’t use pd medication, I naturally feel better in the evening, while I’m sleeping and when I awaken as long as a I don’t need to hurry. Later morning and afternoon are high symptoms times
My worst 3 symptoms are frozen shoulder, terrible toe/ foot cramps, and anxiety. Always in a different order. Also my affected hand is very weak. I have serious cognitive issues that come and go
I have used baclofen, not super helpful for me, I stay active and take intermittent rests. I use cannabis, especially at night. I usually get 2 four hour sleeps between dark and light. I turn off lights and electronics ( including internet ) at night
>"wake up feeling better than for the rest of the day. Is it the natural dopamine being produced? Does that mean he is actually making some dopamine on his own?"
Rarely do I wake up on but then again I never have😉 I find I get toe cramps which is irritating I have to get up early as I have a teenage son to get to college I find once I'm on I'm sorted for the day
I was diagnosed 7 years ago. When wake up in the morning I have very little tremors. Sometimes I forget to take my sinemet. After noon the tremors cone back again. I take 3 doses of sinemet per day and 1 to 2 grams of B1. I need 4 to 5 hours between doses of Sinemet.
Interesting post, it reminds me the excellent document written by J.C. Prevost entitled
THE DOPAMINE CYCLE
Why the contribution of the L-Dopa at the end of the evening and in the morning as soon as you wake up?
I wake around 7am and let the chickens out, do my yoga and breathing exercises, have a cold shower, organise the house, my day etc and by 9.30 have breakfast and take meds. I know I’m lucky! That’s after having had PD for 12 years.
It depends on how much sleep I’ve had. If I sleep for 5 hours plus I wake up on. Anything less than that I need to take Madopar to be able to function. I was diagnosed 15 months ago and don’t think I’ve really got a handle yet on timing of meds. At present I take it when I need it which is every 3 to 4 hours until I go to bed. I frequently take Melatonin to help me get off to sleep.
My experience is very similar to yours Cathavi - been diagnosed five years and I have about an hour in the morning when I feel really good (before my morning dose of Carbidopa/Levodopa) and am able to function quite nicely if I get decent sleep.
This ties in quite well I think with how I function (or fail to function).
I normally get the first hour out of bed as a freebie, not fully on but enough to function. This is fairly regardless of how well I slept (normally poorly) or what time I get up. On the rare occasion I had too much alcohol the night before I can feel even better (a sort of reverse hangover, but see below before you try it).
In the evening my balance and bradykinesia are improved when unmedicated as I often go to bed 6-7 hours after last meds despite having off periods after approx. 3 hours normally (150/37.5 Sinemet).
However, I don't normally drink much as even 2 large glasses of wine throw this out and I physically shut down even though mentally still clear. That does not make the improvement the next day worthwhile. Alcohol is well known for throwing off the circadian rhythm so maybe at least part to blame for why alcohol has an amplified effect these days? That, or I'm just a cheap date.
15 years in, mornings are hardest for me. Sleep 4-5 hours(12:45-5:45) usually mostly dopamine depleted on waking, but hold off until 6:30 to take smallest dose of day in case need bit more sleep or low level activity, ✔financial news, rehab stretch, etc... If I happen to sleep until 6:30 or 7:30, totally depleted and much shakier with lousy toe dystonia.
I have been diagnosed two years ago and take Modopar. ( 200mg per day)I feel the best when I wake up and can go without a pill for a very long time. Even tried to live withoiut meds for a week...I also take B1.Don't really understand what is going on!!
Interesting. I’m wondering if people like you make nearly enough over night but maybe if there is a dopamine sapping task to be done or something stressful it isn’t quite enough to cope.
You say ‘you take B1’ as a side comment, but B1 makes a huge difference. I also take 200mg and also could go for a long time before I take any madopar, and also take B1. I was diagnosed 12 years ago! You say you don’t know what’s going on. I believe B1 is doing it for you, like it is for me. You may be interested in my Facebook group facebook.com/groups/parkins...
First, I don’t appreciate HU’s attempt at mind control. If you keep this up, I will be signing out, permanently. Free speech is a Constitutional right in American society. One of our most sacred values. So… Please get with our program…Or reread your 1984 paperback.
As for my PDP reply, I’m 8 years in. My motto is “I have PD, but PD does not have me.”
For the record, I wake up each morning energized and clear headed, usually after a night of 7-8 hours of sleep that is interrupted a couple times. After that things become more variable depending on how I manage my c/l doses and engage in activities and gym time ( fast walking, resistance training, etc. I engage in the latter 5-6 days a week).
I also still have most of my marbles. I just completed career-spanning book to be released next month by the world’s leading professional/reference publishing house.
PD certainly ain’t great, but it’s workable for me and wife of 56 years.
"First, I don’t appreciate HU’s attempt at mind control. If you keep this up, I will be signing out, permanently. Free speech is a Constitutional right in American society. One of our most sacred values. So… Please get with our program…Or reread your 1984 paperback."
You may also PM them and address your complaint. I have done it. . .
Wow! Very interesting! Hubby wakes up on, and often in some level of psychosis yet. I’m experimenting with more melotonin to try to reduce the morning crazies…usually last night’s dreams seem real to him.
Sometimes , first thing in the morning he can still walk without falling or using a walker.
Are you able to share the source of this chart? It seems to suggest that sleep is crucial to avoid psychosis during the day (adjusts the threshold) which is limiting hubbies dopamine intake…he can’t take much at all anymore without anxiety or psychosis.
I should perhaps add that he sleeps a lot! These days usually 8 hours before waking and then he’ll often nap again another 2-3. It used to be horrible at night…waking every few hours.
I think psychosis bit of the chart is from study on what happens when a schitzophrenic misses sleep so I don’t know how much that applies to non schitzophenics but I was wondering if that natural build up of dopamine over night on top of any drugs taken before bed might push some people up to that level of dopamine so they have the psychosis type symptoms. It’s just a thought as I hadn’t realised how much natural rhythms might underlie any doses depending on the time of day. And I was wondering how hubby can sleep all night without having to get up to take one when in the day he needs to be on a regular schedule. The problem is though quantifying this natural boost.
Going on 7 yrs since diagnosis. wake up with no symptoms. I take an 50/100 at night but no doubt it's all gone by 7 when I get up. I also need meds quickly if my sleep has not been good. I will get tremor and foot dystonia if I start to exercise, if I don't take a dose soon after waking. Worst time, most likely to have breakthrough symptoms, fatigue and low mood/anxiety in the afternoon.
My husbands last dose of Madopar is 6 30pm and nothing else til 8 am. Sleeps ok only waking for bathroom which he manages ok. He often doesn’t feel the need for his meds in the morning but he does get slower if he doesn’t and some tremors. Your graph does seem to correlate with how he is after a nights sleep.He’s experimenting with his doses at the moment too much gives dyskinesias, too little he slows up. Half doses are seemingly the least problematic with dyskinesia but taking them frequently is a pain and even with phone alarms he forgets. Takes 330 mgs Madopar a day plus Rasagaline.
Hallucinations have ceased for quite a while now - could be Red Light Hat he hasn't changed anything else.
Interesting. We have the same issues with hubby. So I’m wondering if gap between doses should be varied according to time of day. Ie middle of the day closer together but later in the day further apart. (He is trialling the slow release madopar). Equally spaced he is going through hell every 2 hours at the top and bottom of each dose cycle.
I think the slow release Madopar would be a good idea. My husband has requested it from our Neuro but he’s not keen on it. Maybe he ll relent. It can’t hurt to trial it.
Hubby is finding it too strong. He is over medicated at the peak but it wears off faster than it is supposed to and we have been on a roller coaster of ups and downs since he started trying it. And he said it can’t be worse but now says it is much worse.
Oh dear sounds a very fine balance with the dosing it’s so difficult to get it right. I think that’s why the Neuro isn’t keen on it. A bit of an unpredictable outcome. The only doses that work with my husband - without dyskinesia or overdosing are the IR Madopar 50 mgs which are taken every couple of hours. They sometimes aren’t enough but at least the side effects are manageable, just remembering to take them on time.
Yes if he is taking that low dose I think it could be too much for him. I think that’s what we will need to try next. It seems hubby chews through the slow release too fast so he gets a bigger hit than he should then it runs out faster than it should, at least that’s what it feels like. Also first does of the day is off an empty tank so to speak so is ok. Second dose is building off the down tail of the last dose so it is starting form a higher base and that pushes it up out of the comfort zone when it peaks. Then the next goes even higher. We are trying greater spacing today by 15 minute but the problem is the end of the dose is already too low.
Yes the mid morning dose seems problematic as a build up must occur. Hope the increased timing is helping. These dosing issues are so difficult and seems each day can be so different . I wish you well.
I think the phenomenon you are referring to is called "Morning Benefit", where PD symptoms tend to diminish after just waking up. Fortunately, I enjoy about 2 hours of "on time" in the morning before taking meds. Even when I take a short nap while being "off", I experience diminished symptoms for a short while. It is an interesting phenomenon, but not all PwP experience it and there is very little data on the mechanisms. I thought it may have something to do with the brain as it enters the sleep phase, so I had a hypnotist put me in a trance, but there was no improvement with symptoms.
I’m wondering if it to do with the natural dopamine cycle shown in graph above. It peaks at midnight and is at a low at mid day for a normal person. . If you add the drugs onto that graph it might be why different amount and timing is needed depending on the time of the day. I’m wondering if some people are still on a normal but subdued dopamine cycle with no drugs they are still then making some dopamine. Others might have a more flat line natural cycle so will run out over night if their last dose was the previous evening.
Good points. I usually stop my meds around 5pm, so I assume I am accumulating naturally produced dopamine in storage vesicles during sleep at night, while the dopamine is not being diverted to other activities. I traveled to a time zone 5 hours ahead and had an awful time trying to maintain "on time" during the day. There are a few articles on PD and circadian rhythm. My "morning benefits" are not as pronounced as they once were (so are a lot of other things when getting older), so I could be "flat lining" dopamine levels as the disease progresses.
Diagnosed 10 years ago at 28; I take 3 sinemet 25/100 in divided doses. Before sleeping at 9.30 pm, I take sinemet, pramipexole 0.375 ER, magnesium and b1 but good night sleep not guaranteed. If I skip sinemet, I get up around 2 am with cramps. Take sinemet soon after getting up else can not do anything. Working full time; so, sleep is important but no way it restores any dopamine in me
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Who here has a bad neck?
The MRIgFUS lesion shrinks. Who knew? 
Slow release cardopa/levodopa 
