Do I have to stop eating altogether?

[PDFree]

I have "off" time it seems any time I eat anything, no matter if it's protein, fat, carbs. If I don't eat I'm fine. But I'm losing weight and always starving.

I take 3 x 25/100 C/L and mucuna in between. Same thing happens with both.

[limcheeese22]

same thing as me, I eat before I sleep at night

[Boscoejean in reply to limcheeese22]

Are you able to maintain your weight with this limited meal schedule?

[limcheeese22 in reply to Boscoejean]

not loosing much

[park_bear in reply to limcheeese22]

Consider using the extended-release/controlled release version of levodopa instead of the immediate release version because, regarding food, according to the Sinemet CR label: dailymed.nlm.nih.gov/dailym... "The extent of availability and peak concentrations of levodopa after a single dose of SINEMET CR 50-200 increased by about 50% and 25%, respectively, when administered with food." [emphasis added]

For this reason I usually take my generic C/L ER with food. I do not worry about eating protein either - I eat whatever I feel like whenever I feel like it.

Further discussion of extended release here: healthunlocked.com/cure-par...

[Grey_Area in reply to park_bear]

Damn that could explain a lot about why, contrary to my doctor's insistence, I find the CR more effective than the normal release... because I tend to graze...so often have food with pills, just not a full meal.

[JayPwP in reply to park_bear]

You don't feel any drain or off? What type of food? Carbohydrates?

I must try the CR with food!!!

[park_bear in reply to JayPwP]

I adhere to a low carb high fat diet. Not full Keto, but I take it easy on the carbs. I make sure I get plenty of fat in the form of fish oil and MCT oil. The bear diet - nuts, berries, and salmon.

[JayPwP in reply to park_bear]

Oh how I wish I was a bear!!!

[Jjm0zx in reply to JayPwP]

What's the difference between between CR and ER, I don't know. Help me know.

[JayPwP in reply to Jjm0zx]

Controlled Release vs. Extended Release

I have no idea about the difference. Sorry 😔

[Esperanto in reply to Jjm0zx]

Carbidopa/levodopa Controlled Release (CR) Tablets: These tablets provide sustained release over 4 to 6 hours, with a bioavailability of 70% to 75% compared to immediate-release (IR) formulations. They reach peak concentration in 1.5 to 2 hours, and some patients may take an IR dose in the morning. Due to lower systemic bioavailability, higher daily doses may be needed for the same symptom relief, with doses over 800 mg divided every 4 to 8 hours. The CR formulation offers similar therapeutic benefits as IR but with less frequent dosing. Patients should not crush or chew CR tablets.

Carbidopa/levodopa Extended Release (ER) Formulations: These have a bioavailability of 70% and an initial peak at 1 hour. The ER formulation uses time-release beads, with one-third being IR for immediate action and two-thirds ER for sustained effect lasting up to 5 hours. ER can be dosed 3 to 5 times a day. It is not interchangeable with other formulations due to dosage and pharmacokinetic differences. Capsules can be opened for patients who have difficulty swallowing, allowing the contents to be mixed with applesauce for easier consumption.

pharmacytimes.com/view/unde...

[JayPwP in reply to park_bear]

So I took a CR 250 3 hours ago with rice rotis and it is kicking in now.😆😆😆

[park_bear in reply to JayPwP]

Yes, it takes about 3 hours. I do not have distinct on and off times, which I regard as a plus. Glad it is working for you!

[Boscoejean]

Do you take supplements? Some supplements can interfere

Iron supplements and magnesium oxide can interfere with Sinemet (levodopa/carbidopa).

[Squarepushr in reply to Boscoejean]

Interesting -anything else?

[Boscoejean in reply to Squarepushr]

multivitamins that contain iron was mentioned but that is probably due to the iron

[park_bear in reply to Boscoejean]

Vitamin B6 big time. For details see here: healthunlocked.com/cure-par...

[Buckholt]

I got myself into a bit of a mess about 18 months ago when my condition dipped and I kept increasing my dose to counter the effects. To make sure the meds worked I spaced out eating more and more and I got to a stage where I became a bit paranoid and began to fast much of the day.

I came to the conclusion that more drugs was not the answer and that by not eating I believed that my meds became more and more sensitive to food. (not scientific but my conclusion). So I bit by bit reintroduced food and over months regained the ground lost. Now I don’t skip meals, (although in the day I stick to salads, vegetable soup, toast and cram protein in the evening), and I leave adequate spacing.

[PD_Investigator]

I don’t know how long you’ve been on medication, but I went through something similar around six months after starting carbidopa-levodopa. I also felt like whatever I ate made me feel unwell. Eventually, I realized that I had actually developed a kind of food phobia. I don’t really know why, and no one could explain it to me either, but after some time, it went away.

Now, I’ve found a balance that works for me: I take my meals at very specific times, which isn’t difficult at all, and this way, the levodopa works well for me without any strange sensations. My routine is: I take my first dose as soon as I wake up. The next dose is about an hour before lunch, and my last dose of the day (I only take three) is a couple of hours before dinner. After each dose of levodopa, I wait 40 minutes before having my next meal.

One thing I’ve learned for sure is that I avoid protein during the day and have good-quality protein at dinner. Many people avoid protein completely because it interferes with levodopa absorption, but in my experience, eating enough protein is important. If you have it at dinner—when you’re not taking any more Sinemet—you’ll likely feel much better.

And another thing I’ve discovered over time is that water is super important for my Sinemet to work well. On days when I drink less water, I notice that it has less effect. I need to drink at least 8 glasses of water a day—around 2 liters—to make sure it works properly.

[cookies61]

That sounds familiar...... If I don't eat I feel pretty good but then, hunger comes along and I have to eat, now I try to fast until 6:00 pm. Food with gluten is definitely more trouble than it's worth and I am trying to eliminate it altogether (which is easier said than done). I avoid fried food, processed food, alcohol, fish and sugar. During the day, I take half a tablet of MADOPAR every 2 hours and a full tablet during the night. It seems to be tolerated better than taking a full tablet every 4 hours. PS. I have not seen a Neurologist since 2018.

[PD_Investigator in reply to cookies61]

And you don’t have dyskinesias? Do you take anything other than MADOPAR?

[cookies61 in reply to PD_Investigator]

During my 'off time' I feel quite dizzy and need to rest until it subsides, sometimes I will also have restless legs and occasionally a tremor. The last time I had dyskinesia was a couple of years ago.

I also take LEVOPAR but only after 7:00pm (I don't feel so good taking it during the day).

[Squarepushr]

Try 5-6 small meals a day instead of 3 big ones. The culprits are the fats and protein, not the carbs. In particular, consider eliminating dairy sources of fat: my meds don't work after eating cheese. And my meds don't work after eating deep-fried food.

The more "pre-digested" a protein is, the faster you will adsorb it. Think vegan protein powder. The more digestion a protein requires, the longer is stays in the gut blocking C/L: think deep dried chicken wings

[Boscoejean in reply to Squarepushr]

dieticians generally recommend increasing fat and protein for weight gain however since there are often digestive issues with Parkinson's it almost seems like the fat and protein may be THE things that are most difficult to digest. Okay so..

"Fat and protein digestion can be problematic in Parkinson's disease because the neurological damage affecting the gut muscles, particularly those controlling movement in the digestive tract, can lead to delayed gastric emptying (gastroparesis), meaning food moves slowly through the stomach, potentially impacting the absorption of nutrients like protein and fat, and causing symptoms like bloating, nausea, and early satiety; additionally, taking certain Parkinson's medications like levodopa can be impacted by protein intake, where consuming protein alongside the medication can interfere with its absorption. "

There are some motility aids and some of them contain ginger or artichoke or both and there are prescription motility aids as well but I have not looked up the side effects:

"When discussing motility medications for Parkinson's disease, the most commonly mentioned options are domperidone and prucalopride which are considered "prokinetic" drugs, helping to improve stomach emptying and bowel motility by stimulating the gut's natural movement mechanisms, often used to manage constipation associated with Parkinson's; however, it's important to note that some medications like metoclopramide can worsen Parkinson's symptoms due to their impact on dopamine receptors, so careful selection based on individual needs is crucial"

domperidone side effects:

nhs.uk/medicines/domperidon...

Prucalopride side effects

Get emergency medical help if you have signs of an allergic reaction: hives; difficult breathing; swelling of your face, lips, tongue, or throat.

Prucalopride may cause serious side effects. Stop using prucalopride and call your doctor at once if you have:

unusual changes in mood or behavior;

ongoing or worsening depression;

thoughts about suicide or hurting yourself; or

if you feel sad or hopeless.

Common side effects of prucalopride may include:

nausea, vomiting, diarrhea;

stomach pain, bloating, gas;

headache;

dizziness; or

feeling tired.

[kaypeeoh]

My 'off time' is when I develop double vision. I take Rytary and the double vision subsides. My big problem is the opposite of what I see here; I can't lose weight. Before the Dx I weighed 165#. Now I weigh 210#. I try not to eat more than twice a day. Maybe I eat too much in those two meals. Or more likely, I spend all day in front of the tv so I don't burn calories much. I have a treadmill but have difficulty taking the first step, especially when it's 20 degrees or less outside. Maybe things will improve with Spring.

[DogsWoode in reply to kaypeeoh]

Same here kaypeeoh. I gained and can't shake it. Agghhhh. So annoying....and for me, not healthy. On top of everything else. 😐 Anyway, you're not alone.

[JewelryGal in reply to kaypeeoh]

Same here! Ii take Rytary and don't eat much. Just bought a walking pad/treadmill to keep my legs mobile... hoping t lose some weight that has been gained due to difficulty exercising and walking.

[michelagvolpe]

In my personal experience I take Sinemet at least 30 minutes before each meal (it would be better 45 minutes or 1 hour before meals), then I take the other doses at least 2 hours after meals. In short, in any case always away from light meals. When I eat meat proteins or dairy products Sinemet has less effect than when I eat gluten-free pasta.

[realk]

the same.. some apples , oranges, maybe bananas in low quantities are ok..

[limcheeese22]

you may consider inbrija.absorb through lung no need to care about to care what you eat

[dan1000]

I think the C/L has to reach the small intestine before absorption happens, so if your stomach is slow to empty (gastropareisis - a known correlate of PD), perhaps that's why you don't feel the effect.

May be worth looking into Inbrija (inhaled, as rescue) or some of the Levodopa pumps that bypass the stomach.

This disease is so individual. For me, the times where the meds "don't work" are the times when my tummy feels full for hours after eating. Movement and exercise, along with digestion-oriented massage of tummy helps somewhat. Also, bowel-emptying helps me, so I'm careful to include bowel-motility foods such as prunes, in my diet.

I wish you relief. ParkiBot.com (my attempt to bring an AI tool to the PD community) may suggest some other ways of approaching it too. Best of luck. Looking forward to the day we wake up and take no pills.

[PDFree in reply to dan1000]

Thank you dan1000, I do think that part of my problem is slow emptying of my stomach and I think besides the PD effect on motility, I have a disrupted gut microbiome that is in need of a microbe rebalance which I think could also help.

Have you tried Imbrija? I have not researched that at all. Side effects? I prefer non-or least invasive solutions, as well as root cause discoveries that can be remedied and hopefully help as well. As few Rx's as possible also.

Had a scheduled visit to my nurse practitioner yesterday, and after asking (telling her actually) about the extended release C/L, she wrote me a script for 30 days to try it. I have a neuro appt later this month, so I will be able to report if this helps.

I'll check out your AI, and I too, look forward to the day of waking to no pills! Keeping the faith!

[dan1000 in reply to PDFree]

Yes, I have tried it. And I am a . It seems to lift my dark mood within a minute or two, and bring some, but not full, relief to my other symptoms within about 10 minutes. Most notably, the movement oriented symptoms. So, mood left right away, motor benefits, 10 minutes later.

[PDFree]

Thank you everyone for all the suggestions!! I will sift through them and see which might be helpful. I love this community!

[koshca]

Same with me. No matter what to eat, it doesn't work (sinemet). Only can eat protein in the evenings, before going to bed.