Some days I can barely wait the four hours until I take the next dose of C/L. Then other days I’m doing so well I forget and don’t take it on time.
Does anyone know why that is that some days I am so anxious to have it and other days I could do without it? It doesn’t make any sense to me and I’m not sure what to do about it. Possibly, it’s time for another neurological appointment?
Thanks so much for your thoughts and I hope you’re enjoying the beautiful spring season.
Only the good Lord knows, and she ain't saying.
I think it's a mysterious synergistic blending in various degrees of how well I slept, what I ate, how hard I exercised, empty bowel status, and what my attitude/happiness/stress level was the previous day or two or three. When all those factors come together just right, I have a good day.
Thank you both for your ideas! MB Anderson thank you for making me smile as a bonus. Sounds like a food/activity diary is in order! I don’t eat protein for an hour on either side of my medication and I run a fairly regular schedule since I am still working. I am certainly grateful for the good days and wonderful folks like you who I can look to for solid advice.
If you can figure it out, let us know the recipe.
That happens to me too. Sometimes the weather makes the day weird, especially rainy days. I also have issues after I exercise.
Brilliantly put, Marc. I could not have said it better. You hit the nail exactly on its proverbial head either consciously or by force of experience and habit.
I think "experienced" or "veteran" PwP's will identify with your description which actually boils down to age old social "rules" that "required" one to eat healthy, sleep well, be active, be happy and kind to others and eat your vegetables.
How many of us are guilty of consciously ignoring the sum total of any or all of the above and therefore ruin our days? I will be the first to raise my naughty hand 😂
The good news is that every single future day is not destined or pre-ordained to be miserable. Let us count our blessings.
RKM
I agree 100% with that assessment. That seems to be the case for me also. I have thought about keeping a food / activity / stress diary to try to figure some of it out but just haven't gotten around to doing that yet.
if someone comes up with a good way to journal what goes on during the day, I would appreciate it.
Parkinson On app has that feature.
@justhavefun2, as we progress on in our disease journey, food plays an outsized role in the absorption of Levodopa. Doesn't matter if it's Sinemet or Rytary or any of the various types of synthetic levodopa that is out there. They are all affected by the type of food (protein competes for absorption) as well as the amount of it (large amount is bad).
So, please take a look at the days when I feel great and compare your food intake on those days compared to the days you feel bad.
RKM
Is organic plant protein drink ok as long as it is an hr after c/ l?
Stress and anxiety make such a difference, and seems to defeat the medication and shortens the effective time
All the above are factors, and more. But rather than waiting to take the next dose when you need it now, or taking a dose when you don't need it, you may wish to try "dynamic dosing". In dynamic dosing you read the body's signs (tremor, stiffness etc., whatever works for you) and use this to time your next dose. The tricky thing is that you've got to look ahead: you take a pill now when you're still "on", so that it becomes effective before you go "off".
Thanks so very much for the suggestion! 😁
I just take the next dose early. If it’s too early I just take half to spread it out. I chew it if I’m in a hurry to make it work.My neurologist does not approve!
Hummm... I wonder why? You’re taking the same amount of medication, but just in a slightly different way. I have done that a time or two myself, but I never bothered to ask. My bad!
He wants me to see him every time I want a change. $200 for less than 10 mins!!
If I had to pay $200 every time I changed my pharmaceutical dosing routine, I'd be in the poorhouse.
movement specialist suggested 1/2 pill every 4 hrs vs.1 pill every8 hrs
That’s what I’m now taking. Half a pill 5 times a day.
If you want to avoid "OFF" times, just take your next dose of Sinemet 30 minutes before your "OFF" period begins (or your "ON" time is up). In my case, my "ON" time is 3 hours , therefore I take Sinemet 100mg every 2.5 hours until I am home from work and don't need it as much. I'm 62 yrs old and was diagnosed with PD 12 years ago. My neurologist is confused by my regimen, but its been working for me for 8 yrs.
Wow! You are inspirational to me. I am 61 and was diagnosed in 2018. I keep wondering how much longer I can work, but if you can do it I can do it! Thanks for sharing!
Ah, the mystery of Parkinson's! My husband always feels good in the morning, about 8 hours without having taken any meds, but after the 1st morning dose, and throughout the day, the drop off times can fluctuate. We can't figure out why he can go so long at night symptom free!
I have exactly the same experience. It is called "Morning Benefit". There is a thread on that subject somewhere in this forum.
@deangreen, it is called the "sleep benefit" according to my Neurologist. If you have a sound 8 hours of sleep, your body produces enough dopamine to get you through the first few hours in the morning.
Not everyone is so lucky though. One of the great mysteries of the ailment.
RKM
Whatever it is called, it is indeed a mystery. I know that PD symptoms are different in different people. In my case, the length of time I sleep has little effect on my sleep benefit. Even when I get sleepy and about to fall asleep, my symptoms diminish greatly. I went to a hypnotist to see if he could put me into that sleepy state, but the symptoms did not change. There are of course certain changes in brain characteristics as you naturally fall asleep. I think there is a connection there somewhere.
I wish I had that benefit! I don’t take any medication (other than 1 tbsp of Mucuna) for about 12 hours. However, by the time I wake up in the morning I can’t roll over in bed and I’m moving pretty darned slow. I think in addition to keeping a journal I am going to talk to my neurologist about regulating medication.
Following I am interested in the response you got! Thanks
Hi Smitty! My post was from 3 years ago and lots of changes since then. I am currently taking Roprinerole 3 times a day, along with Rytary 4 times a day and 1 C/L ER before bed. MDS asked me to drop the Mucuna because it is difficult to regulate. (Mucuna was fantastic when I was first diagnosed though.) Since I started the new to me regime in December, 2023, I have fewer high/lows and more “good days”. I know that we are all so different with treatment of our specific symptoms. How are you doing?
On occasion I experience same. I think it may have to do with protein. If I eat protein in afternoon say at 1300, and I take my next dose at 1500-1530, sometimes it doesn’t work. I think some foods digest slower than others. And of course we are all different.
I .must agree if I haven't exercised and had a stressful day for whatever reason I do find my meds take longer to worki think the key is avoid stress and have a positive attitude
My PD mantra is....
The only thing consistently predictable about PD....
Is that it is always unpredictably inconsistent !
Hormones too, for me , reek havoc on the effectiveness of the meds .....
I have given up caffeine because it causes me to burn through my meds too fast. Also if I am outside in the cold weather I go through the medication. I was on a study drug for a while that was much better than Sinamet. But it is not on the market yet and when it does make it there I probably won’t be able to afford it.
Hi, my husband faces the same issue. He is on Rytary, which is time release C/L. I spoke to our doctor and he agreed that giving a quick actingC/L to tide over is fine. I give it to my husband during and within minutes he is better. This is on an as needed basis only.
Recently, he is being titrated for Kynmobi strips containing Apomorphine, which serves the same purpose. A more expensive proposition though, but worth looking into because Apomorphine is safer it seems.
Please talk to your neurologist and he may be able to suggest a way out of this. Good luck!
Thanks so very much for sharing!
What is apomorphine and what issues does it help? Is C/L 25-100 dangerous? I have been on it since October.
Apomorphine is a dopamine agonist. Kynmobi makes strips that that are used sublingually. My husband uses it along with Rytary when his 'down' phase is really bad.
What is rytary?
Wow! You are inspirational to me. I am 61 and was diagnosed in 2018. I keep wondering how much longer I can work, but if you can do it I can do it! Thanks for sharing!
I agree with all the above. I was diagnosed 18 yrs ago and stress and eating too much are bad and exercise is good, as well as mindfulness and stayed positive.
Keep fighting! 🥊
18 years!!?? Oh my goodness, lag lag! Another inspirational person on board. Thank you so much for your thoughts!
Saw my husband's neurologist last week and we asked why after 12 hours of no meds (night) one tablet is enough to get up and go, and then little by little, the tabs seem to have less and less effect so that by 4pm he sometimes literally can't put 1 foot in front of the other. He had no idea, and suggested going from 4 times a day to 5. Which we gaven't done as the actual taking of tab doesn't appear to help! Out on our walk to the local pharmacy at 3ish - trotted along perfectly. But on the way back that left foot was dragging terribly. Why? Uphill? Stressful situation in the paharmacy (possibly just going in = stressful). My husband wanted to pop another pill but I made him sit it out. Sat for 15 mins then started off on again. I'm wondering if it's a question of too much dopa. The side effects being the exact symptoms we're fighting against!
Hi Vik38:
You may want to try and experiment - eat no protein until 1 hour after your last dose (ie, supper), and see how your meds work throughout the day...
If you're feeling ambitious, also don't eat anything between your first and second doses.
And if you are really ambitious and motivated, eat nothing until 1 hour after your last dose (ie, supper).
Interesting... even mundane/non-stressful things seen to gobble up my dopamine. I never eat for the hour before or the hour after my medication, but even that doesn’t seem to make the difference I am hoping for. I keep thinking there has to be a better way or some solution that I just haven’t figured out yet.
Interested in a response. No two days are the same.Sometimes if I eat around the time I take my c/l , I feel great. Other times I feel awful. I also have osteoporosis and I’m supposed to eat lots of protein. Parkins and some medication is negatively affected by protein. Having trouble finding someone to design what I should eat and when to eat it. So frustrated! Thanks for any suggestions!
I am going to see a nutritionist April 30, 2024. I’m beyond frustrated. I can’t eat much protein without messing up my medication regardless of timing. I’m gaining weight to an unhealthy level because I eat too many carbs. Wish I had the answer… I wish I knew of a dietitian who specializes in Parkinson’s! I bet they would have a very profitable business!
i’m hoping the new functional medicine doctor I’m going to will be able to help with a nutrition. I’ll keep you posted. Please do the same.
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