Food and "off" times

[PDFree]

Hi Everyone!

Recently I've had frustrating issues with eating a meal followed by "off" times of a few hours. I know about keeping proteins away from sinemet as they compete for the same receptors in the gut. I can time my dose of sinemet (a generic, 25/100, 3 x day) an hour before eating a meal, feeling just fine. Then like clockwork, about a half an hour later my symptoms return. Mainly extreme weakness, fatigue and un-coordination, it's very uncomfortable. I'm pretty worthless when this happens and can't really do anything. What I do do requires extreme concentration and effort. Then for some reason, it magically resolves itself by 4-5 in the afternoon and then I feel fine again. It doesn't seem to matter what I've eaten, whether protein, fat or carbs, it just happens after eating.

I have to eat! And I have to take my medication! I also take a pure, clean, organic mucuna powder several times a day, have for years. This happens with either the Rx or the mucuna.

I don't know what to do? Anyone else have this issue and know a way around it?

Thank you!

[Enidah]

I have it, I sure don't know what to do about it. I found that crying in my living room wasn't a whole lot of help. I have been trying to go for a walk all day but silly me I chose to eat this morning. I've already lost 20 lb and I'm fighting to not lose anymore. I wish I had a solution for both of us.

[PDFree in reply to Enidah]

Well, at least you haven't lost your sense of humor! I agree, pity parties don't really help much! Sometimes though, we just need a good cry. I don't need to lose any more weight either. I'm thinking that maybe smaller meals more often instead of fewer meals once or twice a day? Kind of goes against the intermittent fasting keto diet and blood sugar management that are supposed to be therapeutic for PD and other neuro afflictions.

This is a very challenging "gift" to deal with isn't it? Exercise is good! I bought a "new" used hybrid bike today. My old bike is a moutain bike and I've been wanting a bike where I sit more upright so my hands don't go numb. Looking forward to riding it. I wish I lived by the beach, I love walking along it as the waves come and go. I started Qi Gong 2 weeks ago also. Never give up, keep trying and striving! There is a Parkinson's Summit with a lot of speakers, hosted by an MD neurologist that's also trained in functional medicine. Be prepared to take notes, it will be a lot of worthwhile information. It's coming up Nov 14-20th. It's free to watch each days talks, but you have to sign up with your first name and email. It's called The Parkinson's Solutions Summit. I'm not sure how to add the link here but you can go to DRTalks and enter Parkinson's and find the sign up link that way. Do not confuse this with The Parkinson's Solution by a Dr Koehler - stay far away from him!!

[Parkie1]

I join the party ! Because I metabolise cobeneldopa so quickly I have to take it every 2 hours except the second dose 90 minutes after 1st to avoid awful wear off ,so eating is a huge issue. I've lost over a stone in weight. I too find that any amount of food delays the meds. Protein is a "no no" during the day. I thought Neupro patches would be the answer but only help a little, but they might help others who do well with the DA drugs. The answer I think would be transdermal levadopa, but I understand that's a tall order. I take as much Protein as I can at night. ..fish and cottage cheese digest most easily for me , and fall into bed for a few hours. I too would welcome any suggestions!

[Buckholt in reply to Parkie1]

Awful problem and almost a sick joke, to compound the condition. Try toast, not too much butter. Salads work ok, no protein but well dressed. Salad sandwiches. Also mushrooms/tomatoes on toast, veg soups worth a try

[Parkie1 in reply to Buckholt]

Thank you. I do find these foods easier to digest. I will stick with that .

[PDFree in reply to Parkie1]

Salads w/o significant protein seem to work well for me also. No gluten so sandwiches aren’t a great option but one can get very creative with alternatives to bread. I get so hungry sometimes and then I have to chose which suffering I’m willing to endure: satiety and symptoms or hunger and peace!

[limcheeese22 in reply to Parkie1]

same as me! Med does not last more than 2 hours no matter how much I take. I am considering Imbrija

[Parkie1 in reply to limcheeese22]

I'd like to know how you get on with that

[Jaguarorbust]

I’m taking Sinemet too and have found that increasing my dosage before meals gives me a longer reach afterwards. Then 2hrs after eating I take Madopar, a dispersible LD, which seems to have a way of bypassing any remaining food to connect my doses without going off. I have to be careful to avoid dyskinesia, but by maxing my blood level I get a 3hr window to eat.

[PDFree in reply to Jaguarorbust]

Interesting, I might try the boost before eating, thank you for the idea. I only take sinemet (a generic) and mucuna.

[Parkie1 in reply to PDFree]

Thank you both.....worth trying

[Jaguarorbust in reply to PDFree]

I’m only adding an extra 1/4 tablet though - a normal dose of 100mg or 2x50mg would be at 2.5hrs intervals. I can only get away with adding an extra 25mg to get me a 3hr window.

[b5p10]

I was diagnosed with PD just over two years ago and have been doing well until the last couple of months on Levadopa with Co-benyldopa 100/25mg. x 4 daily. Most days now I have "fizzy" feelings which started initially in my lower legs and now in my whole body. At the same time I also have extreme fatigue and brain fog. I have not related them to food because they generally start mid morning and go on all day until about 7pm. I have heard about "off" periods but did not know what to expect. I am still not sure. Can anyone explain or is this it? We watch webinars from the Michael J. For foundation and will add the ones mentioned by PDFree although we are busy this week with our family. I hope if I sign up I can get a recording.

[PDFree in reply to b5p10]

You can purchase the summit. It’s quite cheap if you buy it right when you sign up. There is usually a replay of all episodes on a weekend following the end of the summit but it is hard to cram them all in, you’ll not do anything else that weekend!

For me, “off” periods are times when the medication doesn’t work. It’s as if I didn’t take it. Symptoms return. My body gets very uncomfortable. It’s difficult to describe how it feels. It’s sort of like a whole body restless legs, like I am so full of energy but it has nowhere to go because I am so weak with no energy to do anything to let it out. It baffles me how extreme this is for me. When I’m “on” you wouldn’t know I have Parkinson’s, everything functions as it should. When I’m off, I’m un-coordinated, walk with a limp, shuffle, or freezing ( feet feel stuck to the floor), can’t think well making it hard to make decisions, do math, read, write, anything. My body and brain both feel so incredibly exhausted. I feel the need to move almost constantly, at the same time dreading having to perform the smallest movement, like lifting a glass of water to take a drink, because it feels so monumentally impossible. Tremors are only a minor issue for me.

[Parkie1 in reply to PDFree]

Exactly like me too🫥

[pdpatient]

Thank you for sharing your dilemma. I have the same problem with food and I am amazed at how unaware doctors and dieticians are about this particular issue. I have two solutions, both of which are uncomfortable.

1. Take micro portions of mostly carbohydrate (fruits and vegetables are best), For some reason breads and rice are bad. This means having no more than a handful of food to take. I am / used to be a "foodie" as the younger gen calls themselves these days so its always very difficult to stop at a handful.

2. Abstain from all food for the whole day and especially when traveling. It's pure torture but totally worth it and I thank Levodopa for being nice to me, Lol.

I know that I will sound clichéd, but I am genuinely grateful for getting into the mess that I am in because I don't have self control over my food and I am forced to choose a lifestyle that has made me lose absolutely a lot of weight and brought my diabetes under control. Maybe without this, I might not be able to write this note 🤔

[debmorris1]

I am my wife’s caregiver. We have the same problem. We use Imbrija, a Levodopa inhalation powder. This is absorbed through the lungs, so it bypasses the stomach and does not interfere with proteins. We usually take it right after eating and sometimes before eating, which keeps her from going into an off episode We are lucky enough to get this free through our insurance. It does take some getting used to. It will make you cough and gag at first. She can now inhale it without coughing. This has been a real game changer.

[limcheeese22 in reply to debmorris1]

ho long does it last? How fast to make yo on? Any failed dose episode? Thx

[debmorris1 in reply to limcheeese22]

I believe they claim it last about an hour and a half and that seems to be about right. It takes on average around 10 to 20 minutes to kick in sometimes it can take longer and sometimes it doesn’t kick in. It took my wife quite a while to get where she could inhale it effectively because when she was off she is much weaker and not in a very good condition to strongly inhale a powder that can make you cough. We found that the stronger and deeper you inhale, the better it works. It really helps to be able to anticipate the off times like right after eating when you know your going to be off soon, so do the imbrija then before going off so you are in better condition to be able to inhale deeply without coughing.

[debmorris1 in reply to debmorris1]

Also, the dose is two inhalation capsules per episode and can be taken up to five times a day.

[wrnosek]

This was happening with my husband and most afternoons he could not move very well at all and then suddenly at 4 or 5 was okay. At his appointment in July, I mentioned this issue to the neurologist so we tried the Neupro patch. We did not find this helped but was a very low dose. At his last appointment a few weeks ago (which was in the afternoon so he was not moving), she recommended adding an extra Sinemet to the late morning dose and the next dose in the afternoon. This has helped tremendously. She did say a concern was exaggerated movements but he has never experienced this with the meds and is working so far.

[limcheeese22]

I can only take dinner in a day. Just need to get used to it