The title says it all, after any meal of Smakk to medium portion i seem to lose the effect of my cocareladopa with symptoms coming on or should I say being in a off state. If I eat a large meal it can be hrs (3sometimes 4 hrs)before my medication will work again. No particular type of food can be pinpointed it seems that any food can cause this. I have been offered a apamorphine pump to bypass my digestive system but at 40 yrs old diagnosed a week before my 35 birthday I don’t really want to have a pump strapped to me as being a joiner (carpenter) it doesn’t really suite my lifestyle and having tried this before I know it just gets in the way. I have lost weight being around 12.5 to 13 stone before diagnosis down to 11 stone probably some of this due to muscle loss as I’m not as active I.e. no longer mountain bike or weight train. Any feedback or suggestions would be massively appreciated
Thanks guys
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Todd-pw
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Tom Isaacs who co founded Cure Parkinson’s suggested that taking drugs 45 mins or so before eating and with lots of water plus trying to reduce protein input during the day can help. Manage digestion to reduce constipation is important
Hi. I am gaining weight. I tried to use energy powder and my brain went off. Another time I tried to eat meat , carnivore, and it took all levodopa. LCHF made me shake, rattle and roll.Now I just eat and continue gaining weight... I am happy to have a body 💃🏻
Hi. I have a similar challenge. Early onset from mid 30s. I've had to adjust my eating habits to skip breakfast, take meds at least 20mins before any food, and certainly avoid protein during the day. Even a handful of seeds or nuts can stop meds working for 3-4 hours.Do you have any skin issues or cramps? I got these badly and discovered they were caused by food allergies that I developed 3 years ago. The same food sensitivities also make my PD symptoms worse and cause meds not to work.
A pharmacologist explained to be that this is likely because intestinal inflammation from food sensitivities can effect medication efficacy and neurological symptoms.
Hi thanks for the reply,Yes I have skin issues on my shins mainly with hair loss on shins and dry skin on shins. I am currently trying to work out which foods cause it cutting out gluten and dairy I’ve only just started so will have to see how it goes. Funny how you develop these food allergies when I could seemingly eat almost anything up until around 18 months ago.
Good luck. Took me the last 2 years to figure out which foods are problematic. The varying delay between eating and symptoms makes it complicated (8 hours after some foods,18 hours after others.) Finally figured out these are my triggers: dairy, gluten (including gluten-free oats - be careful, to the immune system the protein can look the same as wheat,) soy, some nuts (mainly cashews), eggs, some types of beans, some types of fish. Similarly, before 3 years ago I could eat everything no problem. It seems that the immune system kept finding a new food every month to react to. Even one particular brand of canola oil that had certain additives caused severe tremors and itching skin.
I finally began to reverse the process bit by bit when I went gluten and oat free, then completely grain free for 2 months (all grains actually have gluten, just different from the wheat type) and strictly dairy and soy free.
Now I can handle the other foods a lot better, without skin and other reactions.
Really wish you the best figuring it out, and get in touch if you'd like to compare notes anytime.
Wow sounds like a lot of foods are a no no, I think I’m getting some where then a food I think Is ok will trigger me. Would you mind sharing a typical day your meal plan. It would be much appreciated. Just had some jasmine rice and feel crap meds not working.
About rice - for PD and gut issues, recommended to avoid rice except for white Basmati (due to arsenic pollution in most rice.)
Meals... I feel best (meds work) when I have an 8 hour eating window from about 11am to 7pm, with 2 main meals.
My go-to grain-free brunch is soaked chia seeds, pumpkin/sunflower seeds, nuts if no allergy to them, with fresh/dried fruits and coconut cream/yogurt. Or vegetable stew leftovers from the day before (low protein.)
I make my own grain-free bread maker loaf from buckwheat+tapioca+chia seeds and throw in lots of spices and seeds too.
Dinner is often stew or soup (sometimes with lentils or chickpeas), lots of fresh fruit and at least an avocado/day.
Was also contemplating red meat only but worried about further weight loss and digestive issues. It’s very tricky like you said reacting hours or even the next day to foods makes it so difficult to pin point allergens
Yes - I would strongly advise first figuring out the delay between eating and symptoms. The best way to do that is to only eat once a day for a few days while you are doing food trials. Dunno if that sounds challenging to you or not, but believe me, making that effort can save months of false results and progression in symptoms.
I wasted a year and a half trying different diets and food restrictions, becoming more and more confused and frustrated because I was basing my results on the assumption of a few hours delay in reaction time. In reality, the reaction was up to 20 hours later, and was a bit food specific. Some things caused itchy skin, others flaking and psoriasis, nuts caused leg cramps, soy caused growth of breast tissue... really weird stuff!)
If your health issues (and I include PD in this) are immune system and digestive-related, then remember, if you're pulling your hair out, organic veggies and fruits are likely to be the safest options because their proteins are unlikely to trigger false alerts with your immune system.
This immunologist explains things well in his videos. They may help you. He recommends Cyrix Labs for food sensitivity testing - unfortunately as I live in NZ I don't have access to do them myself.
Wow your symptoms sound exactly the same as mine even the breast tissue I’ve had a hard lump under nipple on off for years. Thank you so much for sharing this. Today I started on fruit and veg only. I can and will do the 1 meal per day as yes I have struggled for months now trying to figure out what food type causes it. Thank you again this is very much appreciated
I really hope it helps. Let me know how it goes down the track. For your info it took about 3 months for my breast lump to gradually go away after removing soy.
there's a blood test the test for food allergies and environmental allergies. I had the test done at Medical Wellness in Jeannette Pennsylvania several years ago.
Sometimes I joke that I can either eat or be medicated but not both! The trick is to eat around your meds, not the other way around. I take my first dose on an empty stomach and then only eat once it has kicked in . Same with subsequent doses, dose first eat once working. As others say, minimise protein helps in the day.
Animal proteins, heavy carbohydrates and heavy sugars are a med killer for sure.Drinking orange juice when you take your meds speeds up absorbency of the meds.
Watch your lunchtime meal or try fasting till 12 lunchtime
Add me as having the same challenge. I actually have to over-medicate myself (with C-L) 20 minutes before I eat ANYthing with protein, so my meds don't bottom out after I eat.
I take C-L every 2 hrs 15 minutes so prepping to eat protein during a 'food window' takes planning. My hard rule is NO food for 30 min BEFORE OR AFTER my dose.
If I plan to eat a portion of protein during my upcoming food window, I add up to half an additional dose during the 30 minutes I wait after a dose before eating. I may need to supplement my meds again during the next 2 doses (4.5 hrs) to keep my symptoms in the tolerable range.
This sounds like my struggle exactly, you seem to take your meds same as me to around every 2 hrs. I find it hard to plan around meals as I need dosage so often my meals will interfere no matter what time I eat
It is best to take your c/l one hour before or two hours after you eat. I know this is more difficult for those taking more frequent doses. Speak to your MDS about a different delivery system of your c/l if you have a problem spacing your doses.
Thank you for replying, I was wondering about a different delivery system it seems a bit Stone Age depending on tablets digesting for a condition that varies so much from each person especially when I want a smooth continuous dosage not extreme dyskenetic hour then off for nxt 2 hours until nxt dose
I would like to thank everyone who posted. It is so good to know that I am not alone. I have concluded that everyone is different and that it is important to keep. experimenting to find what is best for you. I am not there yet but will keep trying. Thank you.
Hello Todd, I have similar difficulties, I try to eat once or twice each day. My preferences are rice, chicken and vegetables, most other food types will make life difficult to say the least. Thank you
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