I say normal because up until recently I’ve used a cocktail of normal (Rasagaline, Requip and Madopar) alongside Mucuna. The Mucuna was my go to stuff if I needed an immediate lift as it worked so quickly. But I promised my neuro that I’d leave it out: it’s difficult to measure and rationalise when he’s trying to present a case to a hospital on why a patient needs DBS. I get it.
But I’m astonished how slowly the world of ‘normal meds’ work?! When I take a single Madopar (100/25), it can take an hour at times to feel the effect. Is that right? So I seem to have a couple of hours on time and then have to sit around for ages waiting to come on again. This was why I was so wedded to my Mucuna.
Any observations/comment on the slow motion world of conventional meds welcome 🤗.
Thanks
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jeeves19
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so how do you time these Astra? I’ve recently started to get a bit dyskinetic so having lots in my system probably isn’t a great idea. But I’d love to hear your schedule and if food affects the drug as well for you.
Food is always an obstacle for me. I find it so hard to get the meds far-away enough to convince myself that they’ve got a fighting chance of working. It still astonished me that with all of the donations and sponsored runs they haven’t come up with a way to deliver the stuff directly to our brains and avoid the intestines altogether?
Talking about C/L, what works for me is "dynamic dosing". In this case, you take a pill when you get the get the inclines of a return to symptoms. This will vary from person to verson; it could be a return to tremor or difficulty typing.
To avoid overodose you need some controls such as never to take a dose less than 60 minutes after the last dose or to take more than the total daily dose except in exceptional circumstances (e.g do a 10 mile walk).
If my body tells me that I need a dose of C/L, I usually take it (subject to the constraints listed above). A loss of dose due to protein competition is partially made up for by an earler than expected next dose.
For a big formal meal, if there is a clash between the meal time and the expected time of the next dose, I would take my dose 30 minutes before.
I found that taking natural enzymes with meals helps breakdown carbs n protein more easily, meds have been absorbed a lot quicker since I started this. Enjoying food more as I’m not as daunted thinking about med absorption afterwards
Using a combination of 62.5 mg and 125mg Madopar can work quite well. I mix things up a fair bit and experiment. Sometimes I take a 125 first thing to get over the “ therapeutic” level, then try a top up using 62.5 capsules spaced out in half the time as a full dose. Can work quite well but eating is a problem as food defeats the strategy comprehensively! ( I don’t think neurologists like this approach and prefer a set regime).
truth is it’s not easy and whilst Levodopa works great for me, reliability and consistency are a problem . What I find odd is that when I meet people of similar age and disease state, our medication regimes are all different . I think basically everyone muddles through.
I’m in strict schedule of C/L 25/100 EXtended release at 8:30 am,11:30 am,2:30 am,5:30am 8:30 pm 11:30 pm and 4:45 am. I eat between 9-19, 12-1:00 , 3:00 and 4 and 6-7 pm. If I feel I’m starting to feel off (for me is my feet -legs ache or weird) I take an C/L 25/100. IMMEDIATE release and break into 4 pieces more or less and put one piece under my tongue and with in 10-15 min I feel the effects. It works best if you move a little bit. I improvised myself but Dr. Mischley gave me the ok. I hope it helps someone.
unfortunately not much other than what i described in my post. Recently i had severe right knee pain due to arthritis and when the rest of feet and leg chime in ,nothing helps. The 1/4 of 25/100 c/l under my tongue did the trick for the most part. I’m in the process of analyzing what might have change in diet and supplements. For example ,I used to drink celery juice every morning for a couple of years until 3 weeks ago. I had eliminated sugar until holidays.if i come up with some thing I’ll let you know. Hang in there my fellow sufferer. Greetings from Florida
that’s exactly what I mean. How can neurologists be so naïve as to think a drug that takes that long is acceptable to the PD community? That’s why many - me included - seek adjuncts and alternatives.
Gosh - that's a long time for Sinemet to kick in. It really shows how everyone is so different. For my husband it takes 30 mins for 100/25 Immediate Release Sinemet.
the digestive system is my main problem I think long-term use of meds adversely affected my gut Microbiome. as probably like most of us I was fine for the first couple of years I could eat anything and my medication would work fine. But after around 3years of PD and meds problems with meds not working same started at first I didn’t even think of digestive problems as I had never had any, but as time went on I soon noticed the link between eating and meds not working efficiently. I have seen a functional medicine practitioner and things have improved, mainly the natural enzymes before meals seems the biggest aid lately but also finding out about food allergies I DIDNT even know I had through blood test have helped too. Once you get a grip on your diet I found things start improving massively. Don’t get me wrong I have my moments of weakness n have the odd biscuits or other goodies but a healthy diet and finding out if you have any unknown allergies which u can then cut out helped me a lot. All my PD symptoms have improved quite a bit recently. Sometimes I forget about my problems with bad foods and slip back into old eating habits but I’m soon reminded why I can’t eat like this as all my symptoms get worse and takes me about a week or two to get things back under control. Good luck everyone don’t give up looking for answers, up until I saw the functional practitioner I’d say my movement and mood and overall well being has improved 60/70%
Hi Jeeves. Mucuna did work faster for me than Madopar. Unfortunately i couldt find a reliable source and the extract i was taking was too strong. I was put on Opicapone. This i take in the morning and makes my off times seem less off ish...dont know if this can be helpful in your part of the world.
Hi JeanieBeanie - sorry such a late question after 9 months. I'm interested why the Opicapone similar to Entacapone (Comtan) added complications to your husbands DBS My husbands Neuro had put him on Comtan and it's been great for lengthening of Sinemet to increase his On time. He had DBS in 2012, is 61 yrs old.
Honestly can't remember but he tried it twice. I think it was getting the right medication levels with DBS settings. He is 29 years diagnosed and gets confused at times so that does not help. He had tried Comtan years back and it made him aggressive. General opinion in UK now is that there are less side effects with Opicapone.
Interesting - thanks for that. My husband is 25 yrs dx, so similar. I agree though, getting right doses makes so much difference sometimes, it's a forever changing disease also. I'm quite interested in your comment re the aggression. As in hyper, speaking aggressively or forcefully or something different. I have noticed in the past year of like a personality change or hyperness when fully On. It certainly causes far more arguments as he is more bolshy and fixated but I'm not sure if it's Comtan or Sinemet.....thinking it may be the Comtan now?? Interesting.
Yes. He recently tried Stalevo and I saw the same thing happening. He decided to stop taking it himself because he thought it wasn't making a difference.
Interesting that you've been taking the opicapone in the morning. General recommendation seems to be taking at night but I've been wondering whether it would work better in the morning. Did you previously take it in the evening?
I can get my husband on in half hour in the morning with Mucuna, which works fast , and Sinemet and he is in his 29th year. Madopar does not work for him. It gets harder as the day progresses and the food is a real problem but love Todd's suggestion of enzymes.
Just had a neurologist appt. for my husband and she said not to worry so much about eating at a certain time. Can cause anxiety to go up. His is an absorption problem though. Every day is different! She said next year a patch is coming out that should solve his problem. Wait and see I guess. I do like the enzymes suggestion. He takes some in the morning with his probiotics but with every meal sounds like the ticket!
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