I’m on Sinemet (25/100 + 12.5/100) every 3 hours following neuro’s advice May last year. Also a CR 50/200 at night. I now suffer what I can only describe as feeling like my head is being squeezed, a kind of head rush, also down into my neck and upper body. sometimes as early as the 3 hour mark but definitely if I try to stretch out to 3.5 hours. It can last from 30 mins to right through to when my next pills are due. I asked my neurologist but he said he hadn’t come across this before. It’s def medication related as it happens at the same point. Only help is to go to bed and wait it out. Lying down does seem to bring some relief. I’d appreciate knowing if anyone else has experienced this or has any thoughts on what’s going on!
Otherwise I have only mild tremors mostly left side. Could I be over-medicated?
Thanks!
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From what you have written it sounds like you are a new patient, but you have been here for 8 years, so that is not the case. I imagine that without medication you would have more than mild tremors.
You are taking a lot of medication. Have you tried to reduce it and if so what happens?
Be that as it may, you're having a wearing off symptom, possibly dystonia. This symptom indicates you need longer duration. Are you taking any other Parkinson's meds at this point? If not, an MAO-B inhibitor or COMT inhibitor may be helpful. Another possibility would be a longer acting levodopa, but switching over to something else could be problematic.
Thanks for your reply. I was diagnosed in 2021, started Sinemet in 2022. I have been on HU for a long time as I had other health issues, now resolved. I would like to try to reduce the meds and will experiment dropping the 12.5 pill maybe in the evenings. I’m not on any other PD meds. Your info is helpful, finding something to provide longer duration also makes sense. I was offered a Neuro patch (not by my neurologist) but the possible side effects were a bit frightening!
I agree with you with regard to the Neupro patch. Dopamine agonists are best avoided, if at all possible, in my opinion.
You already have a lot on your mind, and I do not want to overload you. With that said, at this level of medication, eventual vitamin B6 depletion is a concern. When you have a chance, read what I have written here for an introduction to this issue: healthunlocked.com/cure-par...
It indeed seems like an overdose, and again, there is evidence from clinical studies suggesting that women may require lower doses of levodopa compared to men to achieve similar therapeutic effects. This difference in dosage requirements, reaching up to 50%, can be attributed to various factors, including differences in body composition, metabolism, and hormonal influences. The phenomenon does not seem to be well known among doctors.
I’m sorry I replied to you earlier but my post has disappeared, not sure why! Interesting to know about this, thank you for the info. I listened to a podcast a while ago where it was mentioned that research is needed on post menopausal hormones/HRT and PD.
sorry dont know but this is the kind of thing that pd does. Based on the symptoms you might want to look up vagus nerve and vagal neuropathy and try some home remedies for vagal dysfunction
based on what park bear said I realise I have not given you the full picture of my regime and the rationale for it
I have recently added Safinamide 100mg (instead of rasagaline) to help increase the duration of positive effect. I have been on it for about 2 weeks and I think it is helping to lengthen on and shorten off periods.
My main symptoms when off are oro mandibular dystonia ie uncontrollable movements in my mouth (sucking; tongue presses to teeth) which are very uncomfortable physically and embarrassing socially. The dystonia is worse when I am tired particularly in the evening, and is beginning to interfere with my speech (enunciation, pronunciation).
Thank you for all your information, it's very helpful to know what others take. Sorry to hear about your dystonia, that must be hard to deal with. Being tired affects me too and also stress of any kind, I take refuge in listening to audiobooks!
If you can get hold of an iPhone plus Apple watch combination you can follow your tremor response with the StrivePD app. It will give you quantitative insight to what happens. There are some old papers in which they describe that a drug holiday (lower or zero) can reset your system leading to fewer symptoms and lower dose requirements. Even just 7-14 days of holiday can have a prolonged effect 6 months to a year. Seems worthwhile to try if your symptoms are mild. Especially insightful with a tremor watch.
It looks like your trouble is happening 3 to 3 1/2 hours into a dose. That means you are” off.” Which would mean the symptoms are result of c//l withdrawal,, needing another dose,. You could try spacing your doses closer together so that you have no off periods. Some people find that they can lower their doses and take their doses closer together to avoid off episodes and their pain altogether. This would seem especially true, given the fact you’ve been diagnosed about five years. That seems to be about the time when a lot of us need to readjust dosing schedules to cover as symptoms get worse. I think that a drug holiday would make you absolutely miserable. Don’t be afraid of levodopa, think of it like insulin that we all need desperately. Good luck.
Many thanks, you've given me more to think about! I've only been on sinemet since 2022, I do feel I've become dependent on it. Last night I dropped the 12.5/100 from my last dose before bed and was fine. Today I've been experimenting a bit, still leaving a 3 hour gap but eg taking 1 x 25/100 then waiting 30 mins then taking 1 x 12.5/100 in the hope of less off time. No idea if this will help and prob the timings are too complicated to sustain!
Try taking the second one at the 90 minute mark if you can fit it around food.
My husband does 8,11,2,5,8 with a whole one, then 6.30 (or whenever he first wakes) , 9.30, and 3.30 with the halves.
That allows time for food at 9, 12-1, 6-7.
If you are like him you might find you build up too much by the end of the day and at night time your natural cycle will start making it if it still can so he doesn’t need any after 8pm unless he plays bridge or goes out somewhere, then he might occasionally need another at 11 before bed
He only takes the 50/12.5 though, not the 100s. And takes a dopa mucuna from NOW at the same time.
Women are more sensitive to levodopa's effects due to biological differences and metabolism, including higher bioavailability, lower COMT activity, weight and slower gastric emptying. We are at greater risk for side effects like dyskinesia and wearing-off phenomena at lower doses than men, which might appear that PD is worsening or the off symptoms are PD related and not medication related. I find with immediate release levodopa even at 100, my off symptoms were worse due to the sharp decline brought on by the higher dose of Sinemet. I was diagnosed early 2022. After several episodes of over medication (some of my own doing) I reduced 'slowly' my dosage of Sinemet down to 25 mg in the morning when I wake up, 25 mg about 4 hours later and then as I eat throughout the day (I'm a meat eater) I do increase my dosage to compete with food/protein as the day goes on, to 50 mg late afternoon, and a 95mg of Rytary at bedtime (I go to bed pretty early around 8pm). This total dosage is down significantly from what I was started on, 600 mg of Sinemet a day, 2 tabs 3 times a day - not so uncommon. I've been on higher, due to the perception of my neuro and others that my symptoms were worsening due to PD. You are newly diagnosed ('21), and female (I don't know your weight, that matters, I'm 67, 130 lbs) Don't buy into that your symptoms are worsening because of PD before trying to taper down and see how lower doses make you feel. Talk to your Neuro about it, if she is female she may be more understanding of the gender differences. PD is a slow, progressive disease. And of course, not to forget, Exercise and diet make a huge difference.
Thanks for all the information, very helpful! I need to digest all this and see what I can try to change. A bit of trial and error I suppose! Best wishes.
I do not have that symptom but I've had numerous other symptoms. I find that lying down till it passes helps probably because lying down decreases the discomfort. I'm finding that everyday is different for me so I take a little more somedays and less some days. When I have too much of the medication I have discomfort. Also, I can feel the medication when it starts to kick in and also when it is ending its duration....both are uncomfortable. To make it even more confusing these symptoms have changed over time. This is probably not helpful. I have found it hard to find a doctor who will help with adjusting the medications to accommodate the medication side effects.
Watch out for food & milk having a dampening affect that perhaps you are relying on to moderate your meds and sometimes that dampening is not there because you’ve eaten at different times.
I try to avoid eating for 45mins-1hr after sinemet and then take dispersible madopar 90mins-2hrs after food. It seems to find a way to work past any food that’s left and start working about 30 mins later.
Don’t be too strict with your 3hrs, it might be that for your first dose of the day to the 2nd, but after that you might be able to go a touch longer. Try to work out how much you can stretch each gap so that you just wear off for 10mins before the next dose that you took half an hour earlier is about to kick in! It’ll give you a reference point and you’ll know for sure that you’re not stacking.
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