I wonder if anyone out there can answer this for me.
I take Sinemet 25/100mg 5 times a day, the first at 6am then 9am, 12noon, 3pm and the last one at 6pm which takes me through to bedtime. But about 2.5hrs after taking each tablet I start feeling terrible (shaky, stiff and slightly panicky…you know!) but I plough through the next 30mins to the next tablet, 30mins after taking that I’m ok (well as ok as I can be with PD)
If I miss a tablet I’m really shocking but 30/45mins after taking another tablet I’m fine again.
Now it seems that the dose of Sinemet is wearing off and the next tablet is taking time to kick in THAT I GET. What I can’t understand is when I wake up in the morning I feel ok (often the best I feel all day) I have very little symptoms!!! That’s 12hrs after my last tablet! So you think the drugs are making me worse yes… NO! If I haven’t taken a tablet in about 2/3hrs after waking God do I know it I’m shocking with PD symptoms.
I find I’m also fine first thing in the morning for at least an hour when I haven’t had any levadopa since 5pm the afternoon before. And like you, I find I get stiffer a few hours after a dose/just before the next one. In fact, 3 hours after my last dose I seize up badly for about half an hour but then I’m okay till bedtime. I think it’s very odd too. But I’m sure someone else wrote about this on here as well.
Thanks for the reply
As you said very strange. Do you also get abdominal discomfort as the drugs a running out which then goes away 30min after taking a tablet?
Greg
Hi, yes I think all you describe are symptoms of the sinemet wearing off and your body wanting more! I have been on sinemet for 30 years dosing less than you, but with similar timings. Over the years I have found sleep to help symptoms. I think this is because your brain can replenish a little bit of natural dopamine. However, now I always wake up stiff, with rigidity and tremor, until my first dose kicks in. It’s a roller-coaster that’s more difficult to ride as you age.
Hi. Do you take Selegiline or Rasigiline one a day in the morning? My husband has taken Selegiline for 28 years and wouldn’t be without it. There is also Madopar.
You may need to chat to parky nurse, you nay find your dopamine levels have dropped considerably and by the time you take the next dose, the meds can take a while to kick in if you do alot during the day you will use up more dopamine then you have and thats why PD symptons come on sinemet is a drug that does straight to the brain, Sleeping you could be using your own dopamine. Certain things dont let sinemet absorb into the system quickly, as it works from your gut, so constipation doesn’t help and you shouldn’t eat with meds or eat protein at the sametime keep to the regular times your brain is expecting that drug at a certain time and obviously if it doesnt get it, on come Mr Parky
Hope this helps
Hi Greg, I can’t give you an answer but what you describe is exactly what happens to me. 6.30am I go cycling but 6.30pm I struggle to get up the stairs.
In the early years (I’m in year 12 and still have this) sleep replenishes dopamine so I wake up able to function fairly well. I can wait an hour or two before my first dose. I take (2) 25-100 Sinemet at three hour intervals for the rest of the day and can feel wearing off at about 2-1/2 hours. If I go past the three hour period, sometimes I can wait until the next dose is due. My MDS says that I am blessed with slow progression so my good fortune might not be typical but it is not unusual.
Hi Greg, after 25 days with the patch (new one daily), I couldn’t carry on. Felt like I was going out my mind, couldn’t sleep and all my symptoms worse. Within 12 hours of removing patch, I felt much better. So back to the drawing board to find a way to relieve rigidity and stiffness during evenings and overnight!
Thank you so very much for updating me.
I’m so sorry the patch hasn’t worked for you.
I suppose different people react to drugs in a different way. I take one sinemet 25/100mg and an entacapone 200mg each dose and one time a doctor changed me on to Madapar 25/100/200mg which is EXACTLY the same drugs in EXACTLY the same amount as i was taking but in one tablet instead of two… and i couldn’t handle the change for some reason, wooden movements, shakey, crying, i was shocking, went back to the two tablets and i went back to normal!.
What are you going to try next? Have the doctors suggested anything else?
Wishing you all the best
