Good evening. Wondering if anybody else experienced similar or if you’ve any idea why the following happens: my first CL of the day works reasonably well (although I only get two hours of relief from it). The second thought is really bad: after my first dose I go badly off (it’s been getting worse as the life of the DBS goes on, but this is only 5 months old. Surely I should still be in the honeymoon period now?!) and take 350 mg. But it’s always a challenge to know if it’s going to work or not. And when it works I’m never secure that it’s a very strong achiever. The doses for the rest of the day work pretty well. It’s this 2nd one that always gives me a run around.
Thanks to any thoughts from the community.
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If taken at the same time, vitamin B6 will bind to the carbidopa in levodopa medication, inactivating both. For further detail see here: healthunlocked.com/cure-par...
How timely! I have been having exactly the same these last few days and wondering whats been going on? I haven’t had DBS yet but my dyskinesia is getting worse.
Do you take 350 mg in total daily dose? Or as a single dose? I wondered if mine was connecting to food intake but i am very careful about that.
hey there. I wondered about food also. I discovered that things like bread may have protein in them and if you’re sensitive…
and park bear mentioned the vitamins and multivitamins. If you can’t figure it out can you plan for it? Change the schedule slightly or add a tiny bit more for then? I don’t really know but if you know it’s going to happen that might be helpful.
I hope you can resolve it. And you deserve a lovely honeymoon period with DBS!
My first dose works which brings me to 9am. Second dose will usually work as long as I don't eat. If I have anything important to do I leave it as late as possible before eating. Once I eat I lose all the strength in my legs and have to sit for several hours. The problem is walking and sometimes feeling very cold. By about 1700 I have recovered. It is better if I just snack - half a dozen grapes or perhaps a piece of dried toast or a slice of meat or a tablespoon of veg which I am finding difficult to manage .
When I first approached my specialist about this she said that I should take my first dose of pills and wait for two hours before eating. That doesn't work for me. I don't have any answers only questions s.
It’s good to hear though that you have issues as well during the day and yes, food seems to be a major impediment to the success of the drugs Thanks for sharing.
I take Rytary and I take the the strongest 61.25-245 3 capsules four times a day. I can 7-8 hours at night but I only get 4-5 hours during the day. And it’s getting less I’ve only been Rytary for like less than a year and I’ve only had Parkinson’s for like seven years, but I think I am taking a larger dose than the maximum that the manufacturer Rytary recommends. Regular carbon I was taking massive amount of that in short period of time. I think I’m the unicorn in the Parkinson’s community cause I take so much C/L and I haven’t had the disease that long. I think the main reason that my symptoms keep requiring more and more C/L @is that I stress out over everything work family. I think the sky is falling when it’s not over I would be different. Despite all this medication, I am still working at my house working on the lawn helping my kids. That’s why I’m doing I’m not sitting around was diagnosed 57 for this.
Interesting re Rytary as our Neuro tried to get my hubby on it but it seemed pointless, a move sideways. He is Young Onset (37 yrs), now 61 yrs... He's been on C/L for 18 years, up to 2300mg / day now, 4 times per day he doses. He is fairly high meds take of the C/L but his Neuro said it's not the highest of her patients. The body is quite amazing how it deals with meds we find. He gets Dyskinesia sometimes, but normally that is when he has accidentally taken an extra med or his DBS has decided to play space invaders when he isn't looking 😄🫤🐰
You seem to be doing pretty well - it's great you are active, something we find is absolutely key if possible. Stress is not helpful and terrible for PD, I hope you can find some calm somehow.
I am so sensitive to levadopa I can only manage a single dose of mucuna with carbidopa first thing in the morning. Any levadopa after that is problematic
The duration of the effect of your first dose of C/L and the impact with it on the second dose is determined by the amount of dopamine activated during the night. This is usually related to your sleep quality. If you have a poor night's sleep, you actually need a higher dosage for the first intake. You can observe this effect in johntPM’s graph if you no longer produce any dopamine yourself.
The content of Rytary is equivalent to a regular C/L (Carbidopa/Levodopa), the difference being the extended release. As a temporary solution, you can simulate the situation in the table by replacing Rytary with two half doses of Sinemet CR and taking them twice as often. For example, if your Rytary dosage schedule is every 7 hours, you would replace it with a half dose of Sinemet CR every 3.5 hours. I believe that the resulting graph would provide a reasonable approximation of the situation.
Yes, as a temporary solution it is reasonable to approximate Ryary by using a sequence of smaller doses of C/L, either controlled release or, my preference, immediate release (because the bioavailability is higher and you have more control over the outcome).
I think it unlikely that I'll be able to add Rytary to the model. My days as a programmer are probably over. The app is open source (or to be more precise open everything). So, many people can make the mod.
I have a similar effect and put it down to the small amount of breakfast between the first and second dose. I also have a better response later on and perhaps the doses stack up a little bit whereas the first dose of the day , after a big gap through the night is fully consumed and the second dose comes on top of a low base. (Totally unscientific comment)
Hi Jeeves, right now my C/L dose (plus Entacapone. are down to working for one hour per dose. I don’t have DBS. I’m wondering if it eventually stop working all together. Lots of problem with vertigo, toe curling and hip pain/dysfunction, talking/moving during off periods. The off period is worst in evening. Time to buy a walker? I’ve stopped driving …
I have the same problem - I take the 1st dose at 6am on an empty stomach and usually works pretty. My first wear off for the day is never really pleasant. it could be because I take the second dose3 hours later and have usually had something to eat which i think may interfere with the absorption of the CL. What i do find however is that it's better to chew the tablet for your 2nd dose with a whole bunch of water. It seems to work better - maybe the absorption is better - good luck!
I find that I need very frequent doses of CL in the morning -about every hour and then when it has built up in me,say around 11am ,the doses can be more spread out. I also find that not having breakfast too early helps. For me it works to take the CL just before eating.
Hi, I’ve been on Sinemet nearly 2 years and not entirely happy with the neurologist just keeping upping the dosage. I take 1 +1/2 pills 3 x daily plus ext release overnight. Please could you tell me how you add in macuna? I’ve been looking at capsules, macudopa.com. Thanks!
Hi! I was feeling the same way. The neurologist upped me to 4 per day and I wasn't feeling any better. Now I am taking 1/2 pill with 1/16 teaspon of mucuna 3 times a day and 1 full pill at night without mucuna. Down to 2-1/2 per day from 4. I'm hoping to get down to 2. I actually just started this kind of mucuna in the last few days and it is much stronger than what I was using (Z-Naturals Mucuna) so I am still experimenting a little with dosages. Here is what I am taking now:
Just an FYI - Last night I woke up shaking (I'm tremor dominant so it's my biggest issue). I took a pinch of the mucuna and stopped shaking within 20 minutes. Went right back to sleep after that.
You really have to figure out your tolerance. I started with 1/8 teaspon and that was too much.
That’s so helpful, thank you for all the information. I’m also tremor dominant so will definitely try this out. I’m also looking at macuna capsules from macudopa.com. It’s so frustrating, trial and error as to what helps and each day unpredictable!
You're welcome - I'm glad I can provide information that is useful to you. It is definitely frustrating and you're right very unpredictable. One day everything works as it should and the next a dose doesn't work at all. Take care!
Hey Adam, I'm not sure I can add anything to above as good responses. I can only say that a 'honeymoon period' is a hope and it shouldn't be an expectation. My husbands was only a couple of months after DBS, and as much as it was nice, then reality set in and you just have to get on with it. You know already he takes his meds way later in the morning, sometimes 2 hrs after he gets up..... he doesn't seem to need it for some reason after a good nights sleep.
Whose Jules? 🐱Glad you said (just joking).... or I would have had to 'slap ya'....🐰🐰🐰with my bunny ears ! No seriously, its like food mate, you know already, it doesn't affect his meds at all. He has some bizarre or lucky responses in some things, not in others. Just one of those quirky things of how diverse the symptoms are for everyone with PD
I'm on Rytary. The first dose is when I wake, 6AM often. The second dose 8 hours later. If I'm distracted and forget the second dose I shortly develop double vision. That tells me I'm due. I take the second dose and the double vision subsides within half an hour. The third dose is around bedtime and again, if I forget, the double vision is back. Now and then I see the two capsules laid out on the kitchen counter which tells me I never took them before bed. I don't seem to have any other symptoms. Certainly not like most here talk about. I don't eat before noon so no problem with delayed absorption of the Rytary. The second dose is usually same time as lunch. Food doesn't seem to interfere.
I notice if I eat any amount of protein after my first dose, my second dose won’t work. My problem dose is my third. There doesn’t seem to be any rhyme or reason, it’s just unpredictable. It will kick in for a couple days and then a week will go by with nothing. I only get about 1 to 1.5 hours of on time, but every minute helps.
IWhat time do you take it? I find that: 1. Any substantial amt of food in my stomach, not enough movement, and resulting slow digestion will nix a dose; 2. Mid afternoon I hit a low point in endogenous dopamine, then it climbs into evening...; 3. I dose 4 times per day ( including the bedtime dose). I get wearing off by the time I take the next dose. When I combine this with late breakfast and/or not enough movement, and/or b6 too close, the second dose is less effective. But I attribute it mostly to the afternoon drop in dopamine.
I've been told to take doses at intervals such that I don't get symptomatic in between, but for me that results in really poor sleep.
So mostly for that afternoon dose, I take a 1/2 IR mid dose to cover the afternoon slump. It seems to help. I can't do that in the evening though, keeps me from sleeping. I sometimes forget that, like last night. Ugh.
Good luck. I know how frustrating this can be, so many variables...and executive functioning not so good. .well you know...
Ji Jeeves I have recently brought my second dose forward 30mins. I take 125mg at 5am and then again at 6:30. I don't eat anything until 8 with my third dose of 100mg at 9am. This works well for now. However on Sunday it often doesn't. I think that, during the week, moving about helps the first and second dose to get into the blood and brain. When I get ready for and drive to work, including doing simple things like empty the dishwasher. This must help. On Sunday I take my 5am dose at 6am and just sit watching match of the day and I defo feel like the meds don't work well at all until dose 3.
Being outside, walking at the pace that posties have to these days, is what I think has kept my progression back this last 15 years. That's one of the reasons I'm worried how DBS might set me back even if I'm only off work for 3 months or so. Whilst I'm working I feel at my best. I get home for 4pm and by 7 I'm usually off, by 9 I'm ready for the knackers yard. 🥴
Very interesting Ginge especially drawing a tangent between your experience and those of Moth Winn in the books The Salt Path and Landlines. Walking seems to have rewired his brain to a point?
just hit my one year DBS anniversary and am back to about where i was before the surgery. take Rytary; currently 195x2 at 8 am and one 195 at 1 pm and 6 pm. I still have freezing issues predominate now with door openings. Sleep about 6 hours nightly. Thought DBS would be the opening to a new world...Still may be but taking longer that what was thought. Take amantadine for dyskinesia but with this dosage of Rytary my Neuro thinks it may not be necessary. See him again in May so will try to update after.
Hi guys i know everyone is different, i haven't had DBS but i have a friend who had it around two years ago he too was underwhelmed after a year to say the least but stuck with it not like we get a choice, and after around 18 month mark and working with his DBS team he really started to feel benefits and has found his creative side. he started making his music again recording tracks and even made an album. His moblitiy also improved whereas he is capable of travelling alone now without fear of getting stuck or anxiety. He is by no means cured but definitely has realised the benefits of the procedure so i would say dont be disappointed as it takes a different amount of time for everyone s body/brain to accept the change of DBS.
Im sure you will find the improvements you are looking for. good luck
Jeeves - (Adam?) - over the last few weeks, I’ve had the same thing happening with my second dose (Prolopa and Mirapex) of the day (around 9-9:30am). I discovered that if I added protein powder to my cereal milk, the second dose generally doesn’t kick in, which is what happened yesterday. So today I had the cereal (gluten-free, organic, low sugar) with almond beverage but no protein powder, and the second dose kicked in quickly.
Other things that work for me: After my first dose in the morning, I wait 12 minutes and have my bowl of cereal, and the meds activate within 15 minutes. If I don’t eat the cereal, it’s closer to 40 minutes.
Eating a snack 15 or so minutes after the second and 3rd dose can help to activate my meds, but I’m talking 3-4 crackers with hummus. If I have a big lunch - like a sandwich with salmon salad and a spinach salad with a cookie (or 2) - that is enough to prevent my 3rd dose of meds from switching me “on” before it’s time for the 4th dose. So I have to eat small meals.
On another note, I have my DBS surgery this coming Thursday - the 29th!
Hi guys ive had issues with my medication and eating times since day 1 of starting meds. recently things have improved a lot i stopped taking my ever-growing basket of supplements. went back to just B1,B2 and something called Nutrient 950E all by pure encapsulations, also take natural enzymes with my food which help digest proteins and added fekir yoghurt and fekir yoghurt drink to my daily diet. I think its the introduction of the fekir which has helped things the most it took a bit of perseverance as the yoghurt is protein rich and dairy product but after about two weeks noticed improvements.
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