My husband was diagnosed with non motor PD 8 years ago
He is usually ok during the mornings but at
about 1500 a change takes place from
being calm and feeling Ok to being nervous and feeling ill.
At 1530 he takes the Sinomet and feels bad after that. This goes on for a couple of hours. ( He can feel ill before or after the pills)
At 1830 having felt ok for an hour or so he takes the next dose and within 15 minutes feels very fragile and quite ill and can’t do or want to do anything, other than sit or lie down till it passes. This may take from 2-3 hours but leaves him feeling weak and drained. His walking is bad during this time
His medication is as follows
2x Sinemet at 0830/1130/1530/ 1.5 pills at 1830/ half at 2230
Plus Nupatch 2mg/ Ongentys, melatonin and Clonazepam at night
( Sinemet CR does not suit him)
Does anyone else have this problem or can anyone give us any ideas as to what might be the cause or could help. Any suggestions will be gratefully received
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KenbrookLondon
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I think there's a good chance that the deterioration later in the day is caused by a shortage of levodopa at that time When you take levodopa, levels rise and fall during the dosage period. For each dose the time to reach maximum concentration is about a hour, and thereafter the half-life is about 90 minutes. These times may be affected by anything that is eaten. I have writen an app that aggregates the effect of the individual doses:
My husband takes his sinemet at regular three hour intervals during the day and he is not good if a dose is delayed/forgotten. Your husband has his second tablet after three hours but has to wait fours hours for his next one. Perhaps this is too long? I always understood that it is very important for sinemet to be taken at regular intervals, whatever interval that may be.
I will certainly try that. A very good suggestion. Thank you so much. One of the problems is always trying to work round the no protein for an hour before or two hours after a dose!
Ain't that a bugger. I took my first sinemet this am at 7.45 and was called to the breakfast table at 10 past 8 and could smell the bacon so I prevaricated for 5 mins. in the bathroom to make it a half hour before the protein entered my system. (therefore half an hour before food). The interesting thing in this comment which I have only just noticed - I could SMELL the bacon!!!!
That is very interesting. He tried B1 for about 6 months with no improvement so gave it up. I saw recently that sub lingual B1 was available rather than the large Solgar 500mg tablets. I am going to see if we can get some of this as it appears that as low as 100mg is enough. How long did you take it before noticing an improvement?
Is he sensitive to protein? Animal- based protein can interfere with his meds. Because his issues fall during the latter part of the day, perhaps it could be what he is eating and how much. His issues are similar to what happens to me if I eat eggs, butter, meat or other proteins. It is as if I had skipped my meds completely. I would be happy to go into this further if you are interested.
Thank you very much . It happens regardless of what he eats! We have tried going vegetarian and it makes no difference. It is also difficulty as taking pills every 3 hours, the one hour before and 2 hours after protein is a problem ! It does not seem to be the normal “0ff “ period either. It feels totally different. As if he has has had a very bad reaction or been poisoned by something. He can feel it coming on and when it is leaving him. Very strange. It definitely is not psycho somatic
I can have a hard time in the pm and feel unwell after medication for about an hour sometimes 2hrs. I’m not sure what it is but despite what we have all been told sometimes food settles me especially protein!
I think that the time before having meds is probably more important than the time after. Waiting 2hours after is not realistic. I really dont know anyone who does this. (I work on an hour before and about half an hour after, first thing in am i do wait an hour to eat and my meds can last until 1pm! Then its downhill from there!
Get him to try eating a little when he takes his meds to see if it helps. It certainly wont harm him. (In this situation I have heard this recommended by a specialist.)
The other thing to check out is whether his blood pressure has dropped. When i feel ill I take my sitting and standing BP and invariably the standing BP is around 94/60. No wonder i feel rotten.
Thank you so much . All these replies are really helpful and useful. I find also eating something g with or soon after the 3pm pill makes it a bit better. The BP is important. Three times my husband has passed out after breakfast when his BP dropped to below 100/60! Twice for 20 minutes .Fortunately no evidence of brain damage but 20 mins is a long time for what I think is called a syncope. For example this morning at 0830 it was 176/87/62 and now after breakfast it is 116/61/66. Time to get up and walk about otherwise it drops further! He also has atrial fibrillation which does not help !
That is a huge drop 70 systolic and 21 diastolic. I think a drop of 30 systolic is considered OH. I think you have found your problem and I suspect you are getting too much medication, it lowers BP. There is medication you can take to countersact this but I’d try taking less sinemet. The blood supply has gone to digest your food so none for the brain so you faint to correct that and get blood to the brain. Lying down is the best treatment. Also make sure you are drinking enough and increase your salt intake (crisps!)
Just to add, when I feel ill very like you have described I have to decide if this is overdose or underdose (they are very similar ). I take my meds on a more, shall we say, dynamic schedule. I may be wrong but i think its all to do with my gut and what I eat and that varies and so my tablet timing varies (within reason). I take Madopar 50/12.5 ( plus other things including Madopar long acting 100/25) so I can take one or two tabs depending what I need. ( i am right maybe half the time).
I agree with Abinet too and your husband should try that first but I think that for a few people that may not work as well as being a bit flexible. It also depends on years with pd, sleep, exercise…..
How is your husband bowel habits?Does he have panic attacks in the afternoon or evening? Does he take any SSRIs medications like Zoloft? Walking or any sort of exercises during the day? Sugar and carbohydrates intake? Gluten and dairy? Too much B6?
There was a problem and also his sodium level was too low but this has been resolved. It has taken 6 months to get it right! One Dulcolax at night now seems to keep everything under control . He does not have panic attacks nor does he take any SSRIs. He walks a bit during the day, not enough and very slowly using a walker, but we try to walk for half an hour a day. Sugar and carbohydrates, gluten and dairy not much but he does not avoid them. B6 ok in fact all his blood tests are 100%. The autonomic nervous system does not work well for people with PD generally,
There is no difference between too little or too much gluten. Even a bit can trigger the immune system. Dulcolax may treat bowel movement but to help microbiome you would need to find a natural way like prebiotics. We cannot rely on blood measurements for vitamins. I would not take more than 10 mg of B6 as p-5-p at bedtime. Magnesium glycinate also very helpful.
He takes Symprove probiotic for over a year and this has helped quite a bit. Also Magnesium at night as he had very bad periodic limb movements of the leg for some time - Not restless leg but similar.
No matter what I do or try, I always struggle in the afternoons between 3pm and 5pm,, and often feel wretched at that time of the day. Ive recently discovered that small amounts of probiotic yogurt eaten at this time, seem to help take the edge off my dyskinezia, which comes with each dose of meds.
That is very interesting and thank you so much. This is the first time we have heard of someone with the same problem. Will definitely try the probiotic yogurt . Also I have noticed recently that my husband tends to get dyskinesia after the 3 and 6 pm dose. Normally he does not have dyslexia at all. Also he can appear high after the 6pm dose so I have recently reduced those two doses to 1.5 tablets rather than 2. Yesterday there was an improvement! So much trial and error!
Yes, about a year ago he was taking half a tablet almost every hour but the neurologist changed it and to begin with there was a slight improvement. I don’t think there is an arbitrary ceiling on how much you take per day. My husband takes a total of 8 x 25/100 Sinemet in 24 hours.
I remember a conversation of PwP discussing when they were at their best am or pm. We all seem to have a downtime each day. 800mg isn't bad for someone 8 years on though he probably doesn't want more at his age (because of hallucinations). Azilect may help prolong the effect of the dopamine.
I can't take sinemet on an empty stomach. I take a quarter of a digestive biscuit immediately before the medication. I only take one tablet so maybe he needs to eat the whole bickie have something in his stomach. Think morning sickness. We take our sinemet before we get up.
After he eats, my husbands blood pressure drops ( postprandial hypotension). He feels pretty out of it and sick and usually has to lie back with elevated feet for awhile for it to pass. Often he also naps. Then the BP normalizes and he’s fine again.
It might be this? We’ve noticed that it improved with tweaking his meds, but so far have not been able to resolve it.
This post prandial hypotension only seems to happen after breakfast and this is when he has passed out. Heart etc has been thoroughly checked out. All ok apart from atrial fibrillation. He is 86 so some things are not going to be as good as they were at 30! If we could just get the feeling ill sorted out, he (we!) would not have too much to complain about! As skinnibean said this disease is definitely not for sissies
I have my main meal at midday, where I limit my protein intake and keep my portions small, midday meds wear off at 3pm and next dose it at 4pm, this is the most difficult period in the day for me. The tension builds and I shake and feel bad and out of control, now I nibble on probiotic yoghurt, and it definitely takes the edge of the unpleasantness, and somedays prevents the slide into dyskinezia. Next dose at 6pm . ' I've made it through another day' ! This condition aint for sissies . . .
I am sure you have tried bringing your medication forward rather than sticking to the exact perscribed timings? It seems awful to have to wait till the next dose is due at 4pm. I do think that there is a lot to be said to adjusting the timings to your needs.
I think a better strategy is to have your main meal (with protein) at supper, after your last dose of the day. If you do this your midday meds will last longer. And as KenbrookLondon suggested, don't be afraid to change your dose intervals, if you have to (but you may not need to if you have your main meal with protein at supper).
being calm and feeling Ok to being nervous and feeling ill. ' <<<
This could be "Sundowning". Although sundowning is normally associated with Alzheimer's disease and dementia, it is also seen in PD, PD-dementia and Lewy Body dementia.
>>> ' Sundowning refers to a group of neuropsychiatric symptoms which develop late afternoon or during the evening and night time ( periods of diminishing daylight). It is commonly seen in individuals diagnosed with dementia or neurocognitive decline due to parkinson's or alzheimer's disease and in elderly institutionalized patients[1].
Some of the common symptoms associated with sundowning include:[2]
Confusion,
Anxiety,
Aggression,
Irritability
Hallucination
Pacing
Changes in demeanor and affect
Motor changes like restlessness, dyskinesia
Sundowning can negatively impact patient safety and wellbeing and results in considerable caregiver burnout, it also poses increased demands on the health care providers especially the nursing staff.[3]
>>> ' REM sleep behavior disorder (RBD) is associated with cognitive dysfunctions and is a risk factor for development of mild cognitive impairment and dementia. ' <<<
You mentioned that he is taking Clonazepam and Melatonin and these are typically used for REM sleep behavior disorder (RBD) and RBD is sometimes seen as a risk factor for Lewy Body Dementia (LBD) or PD dementia. Does he have RBD?
Two things that have shown benefit is morning exposure to bright sunlight and an additional dose of melatonin in the afternoon to help align the circadian rhythm. Here is a study that discusses the use of melatonin for sundowning :
>>> ' Melatonin is an endogenously produced hormone in the brain and decreases during aging and in patients with AD. Data from clinical trials indicate that melatonin supplementation improves sleep, ameliorates sundowning and slows down the progression of cognitive impairment in AD patients. Melatonin efficiently protects neuronal cells from Aβ-mediated toxicity via antioxidant and anti-amyloid properties. It not only inhibits Aβ generation, but also arrests the formation of amyloid fibrils by a structure-dependent interaction with Aβ. ' <<<
Melatonin also decreases in PD in addition to the age related decline.
>>> ' Melatonin replacement has been shown effective to treat sundowning and other sleep wake disorders in AD patients. ' <<<
KL, if you think this applies to your husbands situation, it seems definitely worth discussing the extra afternoon dose at 3 to 4 pm, of melatonin with your husbands neurologist or MDS. Melatonin has an excellent safety profile.
On a related note there is a forum member who gave her husband a 4:00 pm dose of melatonin in addition to his nightly dose to effectively alleviate his sundowning symptoms. Her forum name is :
rhyspeace12
You might try chatting her up for details if your husband's doctor thinks that this is at least part of what your husband is experiencing. If memory serves me correctly she was a nurse?
Lastly, melatonin has shown benefit for PD as discussed here :
Thank you so much for your very helpful and informative post which I will go through and research carefully. I do not think it is sundowning as it can and has happened at other times of the day. We have found the following book very helpful. The New Parkinson’s Disease Treatment Book by J Eric Ahlskog, PhD, MD
He does not have tremors. I believe that about 20% of people with PD don’t. Symptoms are everything bar the tremors! Stoop, stiffness ,tiny handwriting, loss of voice etc etc
I don’t have tremors but it’s never been called non motor PD. I still have motor symptoms. About 40% of PWP don’t have a tremor. Did his doctor call it that?
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