Hello all. Do any of you have a similar experience to my current challenge? I often really struggle to get reasonable symptomatic relief in the morning. My night time regime consists of a single Madopar 100g (controlled release) so my system hasn't been depleted of levadopa during the night. I ensure that my breakfasts have minimal amount of protein. However, I take 200mg of Madopar at 7 and I don't come 'on' for maybe 50 minutes. I then have about an hour of 'on' time before I go off at 9. Im just amazed that 200 mg only gets me 1 hr and 10 minutes. I then have another 200mg which again takes 50 mins to give me relief and then lasts for an hour and a half. Subsequent dosings in the after are 100 mg rather than the 200 and seem to work much better. I kmow some of you would imagine 200mg to be an unusually large dose but - as far as the mornings go - 100mg is (after 7 years) a dead loss, and even 200 appears to be failing to generate substantial relief. So I'm just wondering why mornings seem to offer the greatest challenge to symptom control.
Thanks very much to anybody who can provide some explanation.
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jeeves19
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This is laglag. I’m just the opposite. I function better in the morning. Have you ever tried Amantadine or Entacapone? Amantadine extends my time to about 3 - 3.5 hrs. Entacapone messed with my mind too much & my dyskinesia got worse. I don’t know too much about Madapor. I’ve thought for quite awhile that “less is more “ It’s a fine line but I believe with C/L that is the best solution. 🥊
Can you elaborate on the Entacapone messing with your mind? My husband takes it and I think he has gotten cognitively worse and is also now seeing little people (AKA hallucinations). Many thanks.
Thank you SO MUCH. So glad you had the wisdom to stop it.
It may be time to stop this as well. His MDS has been pushing him to add another pill per day. And, he's on an insanely high amount of Rytary. I'm looking for another neurologist.
I was going to suggest rytary has less of a peak and should last longer. Compared to immediate release carbi levodopa its usually twice the mgs to start or even a bit more.
Not sure how to deal with other side effects. Ammantadine and entacapone were helpful for a while but I got off them with rytary. And had trouble le restarting them due to digestion issues. I think they added to gastroparesis
Forum member jimcaster reported that after a few months + or - of taking high dose melatonin, he had improved "on time" upon awakening and was able to delay his C/L dose by about 2 hours.
I’m very similar at 45mins, but it is predictable. There’s a threshold to get over and half of the first tablet is used up getting to that point. The 2nd tablet then just has to keep you above the on/off threshold and below your dyskinesia ceiling.
I put your tablet timings into this graph app and it looks like at 9am when you go off your blood has around 150mg left, so you’re on time has only come from the other 50mg. I’d take an extra 100mg at 7am, then drop back to the 200’s after that or shorten your usual gap by 50mins.
Het jeeves, it seems that your required minimum Plasma (LED mg) = 120 This allows you to make the ideal curve and thereby ensure that you avoid too high maximums. What are the rest of the day the times of intakes 100mg Madopar?
For you, the first 150mg in your blood is just the ticket to the game, it’s just a base level that gives no noticeable benefit in itself. It’s the dose from 150 up that you notice.
The first 150mg of tablet 1 gets you from nothing to on, you then get the benefit of the other 50mg until your blood drops back down to 150, then tablet 2 takes you up from 150 to 350 at the max and then you drop back down again and so on.
It’s like playing keepieuppie with a balloon where you have to get it over the counter top to see it, but avoid hitting too high and hit the ceiling where it turns to dyskinesia.
Thanks very much for that. What do you feel about food? Sometimes I think that food is blocking the drugs from working and then sometimes I can take the Madopar following food and it works. This ambiguity puzzles me. And as I said in the initial post above, my ‘protein less’ breakfast made no difference, so I don’t actually think protein is quite the culprit that I imagined it to be.
Imagine if all the money that was wasted on blind alley therapies, had been directed at better Levodopa delivery? Levodopa works well for most people but problems of reliability, absorption, half life etc really make it troublesome to use.
The forthcoming subcutaneous version offers hope , let’s hope they end up with something really good
so very true Buckholt. Thanks for posting. Where is information on this new product? Mind you I can’t even get to see my neurologist these days. The hysteria over covid is still giving every organisation in the land permission to be pants seemingly.
Good addition! It works as I have seen my husband's need for Sinemet and or MP. He takes 1/2 t Sinemet with 40% MP. He then takes magnesium threonate, B1, B12, and Citicholine. The combination is fantastic. Five hours after that and he is still on!
That’s extraordinary Despe. Truly. I’d give my right arm for that kind of ‘on’. Was there ever a time when he was experiencing very little ON time? If so, what sort of period? Are these ingredients in tablet or powder form?
Never complained about "ON" or "OFF." Go figure. I can tell when he needs medication. He frowns his face and becomes irritable. He basically takes PD meds (Sinemet + MP) three times a day.
Hi, I too function better in the morning, I’m usually up around 4:30- 5 and I don’t eat anything until I’ve had my first dose of sinemet which is at 6:30 and even then I don’t eat any protein, I save all my protein intake for the end of the day. I have done this since my dx which was 13 years ago and it has made a difference I believe. Protein really interferes with the sinemet, at least for me. I stay away from dairy as well. In the beginning it was a bit of trial and error until I figured it out, I remember one time I had eggs for breakfast with my meds and boy, did that throw off my day! So after that I just stopped eating protein till dinner time.
I hear you Mimi but I was pretty surprised as I said to find that even when I planned a non protein breakfast, the meds still lost their power. I’m actually of the view that my gut is so compromised , it’s just overwhelming the medication?
No prebiotic. I have recently discovered and he started taking Sugar Shift Biotiquest which is an excellent probiotic. For the first time he told me "I am hungry." He takes one before every meal.
yes, it’s true, your gut may have a lot to do with it. I try very hard to keep my gut flowing properly, so to speak, I eat a fiber focused diet, lots fruits and veggies throughout the day, I take miralax and other helpful things and I do find when I go regularly I feel better and my meds seem to work more efficiently and there’s a lot of data indicating that pd and the gut are very much connected so that being said, really try and eat with your gut health in mind and most importantly, drink your water, lots of it. It’s also recommended to drink a full glass of water with each dose of your meds and vitamin c is also very helpful for gut health and it, for me, helps my sinemet to work better. As for what I eat for breakfast, I eat about a half an hour or 45 minutes after I take my meds and I usually have a bowl of mixed fruits and maybe a little broccoli and brown rice or fruit and avocado toast. Avocado is also good for keeping you regular and broccoli is great for gut health too. Smoothies are great too, you can put a lot of different things in them. I pretty much stay away from protein till dinner then I eat a good amount then. Some people can eat protein during the day and it doesn’t affect their meds but for me it does so I wait until later in the day.
that’s great Mimi. Thanks. One thing though that has always irked/puzzled/got my goat is that I’m rarely constipated. When you have gut issues there’s meant to be wind, discomfort, tummy noise. I get none of that and am always curious as to why people who suffer from IBS don’t suffer from PD whilst I do! 🤔
sorry I assumed you were suffering from constipation, a lot of PWPs do but nonetheless eating a diet with keeping your gut healthy is still a very good idea, your meds will work better if you do. Best to you.
Sorry to jump in, but there are Keto cereals (not from wheat). You may also add wild blueberries or any organic fruit. Do you use coconut or almond milk? If you do this is what you should use instead of milk. To that mixture, you may also add cinnamon and mannitol. Hubby adds to this mixture Lion's Mane and Ginkgo Biloba powders. Before you start your breakfast or any meal, take Betaine and probiotics, or digestive enzymes.
Bananas are also a must, which you may add to your Keto cereal. One piece of Sourdough bread with plenty of ghee also are good to have. A good sourdough bread should only have three ingedients, if there is a big list of ingredients don't get it. Ghee is excellent for the brain health.
John has been diagnosed for 16 years now and we have had ups and downs but at the moment he is doing well. I’ll tell you his regime . He’s medicated with Stelevo every two hours starting when he wakes at 6am. He waits in bed about 15 mins then is ‘on’ enough to go downstairs and make a cup of tea. 6.45am breakfast - wholewheat cereal banana and oat milk. Around 7.15 he has a madopar dispersible, we found he was having a dip before his next tablet was due at 8am so added the dispersible and he no longer has a dip. 8am,Stelevo 125mg and a slice of toast, he also takes a sachet of CosmoCol to prevent constipation.10am - Stelevo 125mg, around 10.30am a piece of flapjack or similar. 12pm stelevo 125mg. 12.45pm lunch - something light, Soup, something on toast, sandwich and fruit/crisps. 2pm Stelevo 125mg , 2.45 Rice pudding/ banana custard. 4pm Stelevo 125mg. 4.45pm evening meal - home made cottage pie/ lasagne/ curry/ casserole etc. 6pm Stelevo 125mg. 7pm hot chocolate and biscuits. 8pm Stelevo 75mg ( doesn’t need as much in the evening) 10pm Co careldopa 50mg slow release to help with movement in the night.
The consultant John is under for his dementia is always checking John is not constipated hence the cosmoCol, she talks about any of his medication not working well if he isn’t regular, he is also on an antidepressant and anxiety medication as well as Riverstigmine for his dementia, we have noticed they all have reduced effectiveness if he is constipated.
Diet for John is so important,meals small and often. Since we have got into a very regular exercise regime things have definitely improved. Mon - Friday an activity every day, just walking at the weekends. Badminton, Boxing, Personal Trainer, Golf In Society and a PD gym class - lots of variety. A sleep after lunch also helps.
We have support from different medical teams, if things are not going well they are on the end of an email for advice and are open to our suggestions. We always record what we have done so we can look back if necessary.
I’m assuming that the lovely flapjacks are courtesy of your good self Christine?! Thanks for such a generous and detailed post. It’s great that you have such good back up from the clinicians. Here in Brum things aren’t quite as good: my nurse seems to have gone awol as has my neurologist. One good bit of news is that I’ll be having DBS at Bristol hopefully before the year is out. Regards to John eh?
Ps am finding exercise quite hard as the meds run out pretty soon upon starting. I have Entacapone available but daren’t use it as I’ve heard so many nightmares about it’s effects on PWP?
It’s PD dementia, diagnosed when the dopamine agonists were causing hallucinations delusions, it was horrendous. Weaned off them over a period of three months, he had been on them for 12 + years. Very early stage PD dementia then diagnosed which after 12+ years is not unusual. John was first prescribed Stelevo so not sure about the entacapone.
Seamus, I’m go freaking jealous! There’s a Smiths song entitled (I think!) ‘We hate it when our friends become successful’ .😂
How on Earth have you achieved this? I’ll probably own up to the fact that I’ve really taken my eye off the ball over the last couple of years ( eaten lots of crap, exercised less etc), but still. I suppose that if I really had to, I could leave off the meds for the morning, but I’d have to do sedentary things like read a book. How in hell’s name are you able to do exercise with no dopamine after 6 years? It’s pretty amazing.
Hi Jeeves,Don't get me wrong first thing in the morning is not a barrel of laughs!
I can just about muster up a coffee ☕ but don't ask me to open an envelope 🤣
But after a few stretches I'm able to get my trainers on and get out for a fast walk/run for a couple of miles.
I can't exercise with meds - it just feels weird and I worry about them wearing off halfway.
I'm fortunate to have a neurologist who encourages me to 'flex'my meds. Effectively he says "here are six Sinemet per day - take them in a way that works best"
Someone posted on here awhile back about the effect of fat on levadopa absorption. He said that the "area under the curve" is the same, but that if you have eaten fat around the time of the dose, then the peak will be lower.
Also, Dr. Ahlskog, in his book "The New Parkinson's Disease Treatment Book" says that medicine should be taken:
- at least 1 hour before meals
- at least 2 hours after the end of meals
Unfortunately, if you have to take a dose every 2 hours, I'm not sure the best way to balance that with the above guidelines.
One other warning is that levadopa should not be taken with aspartame, the sweetener used in diet sodas and many foods. This is because aspartame is metabolized into phenylalanine, which competes with levodopa for transport into the brain. (This is also from Dr. Ahlskog's book.)
With a filled stomach, it takes longer for the levodopa to enter the small intestine where it is absorbed. In addition, part of the levodopa is already broken down in the stomach. Ahlskog has taken a fairly wide margin for this, but if you use the general guideline of half an hour before meals and an hour after, there is half an hour left for your meal. That should work even with such a short period of time.
Make sure you eat foods that trigger release of dopamine at breakfast like berries, bananas, oats. nuts like almonds or pistachios, seeds like pumpkin or sunflower, apple, avocados , eggs and old cheese etc
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