just had some ice cream and not feeling good - think i will try and drop milk products. never eaten tuna since a certain tuna-ella sandwich many years ago but will try salmon. i really think some scientist needs to investigate this.
Hi everyone, I'm a newie to the Forum, but I've been diagnosed with pd since 2005 after 2 years of investigations. I've been on Pramipexole since 2005 and Madopar not long after, I've tried other drugs inbetween but overall I've been more settled on these two drugs, and am now on the maximum maintenance dose for both. I feel I can cope with my days, even though I have some problems, but my nights are horrendous. I can't tollerate any of the drugs I've tried for during the night, so when I go to bed my leg starts shaking so I have to put a cushion inbetween my knees to try and stop it as it affects my knees and hip, with all the shaking I'm doing. So all night long I keep waking up with a shaking left leg and lathered in sweat, I get where I can't move around in bed or turn over, when I need to get out of bed I can't walk so I have to use a walking frame to get me to the bathroom, or until I get enough movement back in my legs. This has been going on for over a year and has gradually got worse until I am really desperate. I have changed my neurologist, but am waiting to go for scans. Has anyone out there had any problems like this?
Hi poolie, welcome to to the forum!
I was having similar experiences during the night due to meds wearing off. I introduced Sinemet CR and now sleep through the night. What meds have you tried and what time do you take your meds prior to going to bed?
I was having similar experiences during the night due to meds wearing off. I introduced Sinemet CR and now sleep through the night. What meds have you tried and what time do you take your meds prior to going to bed?
Hi Cutie pie, thank you for your reply. I have my last Pramipexole & Madopar meds. at about 9 p.m. but I don't go to bed until about 1 a.m. I have tried Madopar CR, about four times over a few years, but had to give up because that was causing a tremor during the night. Its strange, because my tremor is controlled quite well during the day. I've been on several other drugs during the night, but it seems that I cannot tollerate a lot of meds. I have tried Sinemet CR but that had the same reaction as Madopar CR. I asked the PDN if I could give it another time, but she said it was a waste of time because it was just the same as the Madopar CR. I thought that perhaps I hadn't given it long enough before I gave up. There was talk about me going on Apomorphine but I wasn't keen on that, because I don't want my day meds changing yet. What are you on during the day? My new doctor wants me to have a MRI and DAT Scans before he gives me any more meds. I'm getting very little sleep, so its getting me down waiting for things to happen. I've had blood tests done, but I don't know anything else yet. During the day, I'm on 0.7 mg Pramipexole 3 times a day, also 0.35 3 times a day. I'm also on 1 Madopar 125 caps. 4 times a day, also Madopar 62.5 4 times a day. I take 1 - 2 Clonazapam to help with my sleep, but its not that good. Thanks, Poolie.
Hi
Haven't posted for a long time but am always interested to read about levadopa absorption and protein. All protein dramatically effects my absorption of sinemet and I think dairy products are probably worse than meat products for me. I try to have the biggest intake of protein for my evening meal. Cutiepie, like you I now take Sinemet CR at night - it works well although I do have to wake up about 3 or 4 am for a second dose. Have you tried a CR tablet during the day? Also have you tried the patches (rotgiotine - sorry for spelling?!) at all. I have avoided them todate as they contain an agonist i believe, and I had a very bad experience with ropinirole. However, the lowest dose patch may just smooth out my symptoms during the day, especially because protein/meals are becoming so difficult to negotiate. A bit long-winded! Sorry! Sally
Haven't posted for a long time but am always interested to read about levadopa absorption and protein. All protein dramatically effects my absorption of sinemet and I think dairy products are probably worse than meat products for me. I try to have the biggest intake of protein for my evening meal. Cutiepie, like you I now take Sinemet CR at night - it works well although I do have to wake up about 3 or 4 am for a second dose. Have you tried a CR tablet during the day? Also have you tried the patches (rotgiotine - sorry for spelling?!) at all. I have avoided them todate as they contain an agonist i believe, and I had a very bad experience with ropinirole. However, the lowest dose patch may just smooth out my symptoms during the day, especially because protein/meals are becoming so difficult to negotiate. A bit long-winded! Sorry! Sally
hi Turnip
I have just read your post and the following one with interest. Very few people I talk to seem to find problems with protein/slow gastric emptying but it is something which has a huge effect on me. These days if there is much of any sort of food in my stomach my Sinemet has absolutely no effect.I was diagnosed almost 16 years ago and am now 59.I didnt run into problems with diet/slow empying of my stomach until about 5 years ago and the effects have gradually become more pronounced. Protein is the worst culprit and of all the different protein rich foods I'd say I find lentils the worst. Also, homemade or heavy brown bread, scones etc..At first I only noticed the problem with protein but now any food in any quantity seems to interfere with the uptake of my Sinemet (but not the Mirapexin or the Tolcapone)I read an an article by an American Pk nurse which described and explained the problem very well. If you are interested I will try and find it again.
As for how to help yourself.........I have found this tricky. Obviously avoid protein rich foods during the day-the dietician suggested I leave out protein altogether during the day but eat a double portion at night. I find timing my Sinemet around meals is the best way. I take the Sinemet about 20 mins before I eat (and if I dont feel hungry I dont eat as this is a sure sign my stomach is still working on the last meal!) This leaves the max. time possible for whatever I've eaten to move along before the next dose is due.During the day I find I can really only eat very small quantities.
I do hope this helps. I'm sure you're not imagining it. But I reckon it is only a problem for some people. Try experimenting with the time lapse between meals/doses of Sinemet as well as what you eat.
germander
I have just read your post and the following one with interest. Very few people I talk to seem to find problems with protein/slow gastric emptying but it is something which has a huge effect on me. These days if there is much of any sort of food in my stomach my Sinemet has absolutely no effect.I was diagnosed almost 16 years ago and am now 59.I didnt run into problems with diet/slow empying of my stomach until about 5 years ago and the effects have gradually become more pronounced. Protein is the worst culprit and of all the different protein rich foods I'd say I find lentils the worst. Also, homemade or heavy brown bread, scones etc..At first I only noticed the problem with protein but now any food in any quantity seems to interfere with the uptake of my Sinemet (but not the Mirapexin or the Tolcapone)I read an an article by an American Pk nurse which described and explained the problem very well. If you are interested I will try and find it again.
As for how to help yourself.........I have found this tricky. Obviously avoid protein rich foods during the day-the dietician suggested I leave out protein altogether during the day but eat a double portion at night. I find timing my Sinemet around meals is the best way. I take the Sinemet about 20 mins before I eat (and if I dont feel hungry I dont eat as this is a sure sign my stomach is still working on the last meal!) This leaves the max. time possible for whatever I've eaten to move along before the next dose is due.During the day I find I can really only eat very small quantities.
I do hope this helps. I'm sure you're not imagining it. But I reckon it is only a problem for some people. Try experimenting with the time lapse between meals/doses of Sinemet as well as what you eat.
germander
thanks.won't have any trouble avoiding lentils! dried fruit seems ok at breakfast, think may cut down more on milk. also seem to find fizzy drinks help as cutiepie pointed out. drugs cause dehydration but need liquid to work, so i'm told.
ps interested in that article if you can find it
Does it effect people hours after eating protein or can it effect your meds working the next day?
might depend on how quickly you digest food and how much.
I will try not giving my husband less dairy food . he also likes ice cream My husband takes sinemet cr 250 about 9 30 pm but he has nights when he gets dreadful drenching sweats . It can be difficult regulating the meal drug combination it takes over . How long do you think the Cr lasts .
He has only ever taken sinemet and rotigotine patch but he isnt doing too well . Spends most of the day in his armchair unless going to the toilet his balance is a big problem .
He has only ever taken sinemet and rotigotine patch but he isnt doing too well . Spends most of the day in his armchair unless going to the toilet his balance is a big problem .
I have had some bad episodes with certain foods, some of which grind me to a halt. Like eggs, synthetic gravy (yeast extract).
Maybe I should start by declaring my meds 1st. Cocarlevadopa (sinimet+), Entacapone and rasagiline...
The entacapone leaflet tells you to avoid alchohol, yeast and malt extracts.
So anyway. Foods that affect me are
eggs, chicken, anything with yeast/malt extract, breakfast cereals fortified with vitamins, beans
Maybe psychosomatc, I wouldn't be surprised.
Foods that should affect me but dont are
fish, pork, peas, beef, sausages (lips, eyelids and cereal), haggis, blackpudding, chocolate milkshake
Foods that appear to help with absorbtion
red wine, water, irn bru, marshmallows, wagon wheels
This is not an exhaustive list of my complete diet, I'm just picking things out.
Being from Glasgow my staple diet is deep fried mars bars and salad Glasgownoise, (similar to salad nicoise, although more like potato dauphinoise without the cream and chipping rather than slicing and frying rather than baking).
Maybe I should start by declaring my meds 1st. Cocarlevadopa (sinimet+), Entacapone and rasagiline...
The entacapone leaflet tells you to avoid alchohol, yeast and malt extracts.
So anyway. Foods that affect me are
eggs, chicken, anything with yeast/malt extract, breakfast cereals fortified with vitamins, beans
Maybe psychosomatc, I wouldn't be surprised.
Foods that should affect me but dont are
fish, pork, peas, beef, sausages (lips, eyelids and cereal), haggis, blackpudding, chocolate milkshake
Foods that appear to help with absorbtion
red wine, water, irn bru, marshmallows, wagon wheels
This is not an exhaustive list of my complete diet, I'm just picking things out.
Being from Glasgow my staple diet is deep fried mars bars and salad Glasgownoise, (similar to salad nicoise, although more like potato dauphinoise without the cream and chipping rather than slicing and frying rather than baking).