My meds 1.5 levodopa 3 times a day, 8 am noon 4pm
Recently they kick in 50 min, 2 hours on. The last hour is wear off... I freeze, rigid, slow during this time.
I get frozen usually sitting during this period and can only get relief from walking. Also having insomnia only sleeping 1 or 2 hours every night.
I am right side tremour dominant. Am I over Medicated? What is going on?
I have an appt with my neuro in 2 weeks.
are you seeing a Movement Disorder Specialist or a general neurologist?
Are you taking your meds on an empty stomach? General rule of thumb is 1 hour before or 2 hours after a meal. Protein in foods compete with receptor sites in the gut causing poor absorption of the meds
Neurologist.I take it on an empty stomach according to your guide lines. Away from protein also.
When it wears off, it feels like a withdrawal. When I wait another hour after my last dose my condition approves. That seems weird to me.
My neurologist , who I see twice a year, pushes higher doses but I've declined and he says I should not be on a baby dose. I feel ok except lately. That is the only reason I'm asking. I'm hoping he does not push more without explaining it. I was happy with 1 ld dose. He made me feel guilty and pushed for 1.5 ld dose , which I'm currenty using. Then again it may be the right dose.
my husband takes a time release (50/200) 3x day. But crushes an instant release (25/100) in between for the wearing off. Sometimes I crush 2 in place of the time release if he’s not able to get moving. He has malabsorption which makes it tricky. I’ve ordered some berberine to help with the gut issues. I saw a post from 1 yr ago that it improves your dopamine production
I'd get a second opinion from a Movement Disorder Specialist. Parkinson's is their specialty. There are many meds available and different ways to get C/L into your body.
It's awful that your situation is deteriorating so much. The neurologist will probably increase your C/L medication. This seems very logical given the complaints, after all, you are still at a fairly low dose. But I agree with you that you should try to limit that in the first place. Perhaps a better distribution over the day, with a somewhat shorter interval is recommended. For instance 1x C/L 5 times a day, 8 am, 11 am, 14 pm, 17 pm and 20 pm. Create the different graphs on how your medication works throughout the day/night with the John Turner website. First of the current situation and then possibly of a version that you think is desirable. You can then discuss that with the neurologist.
parkinsonsmeasurement.org/t...
Partly the deterioration is just part of PD, but instead of a higher C/L dosage, you can also try to increase your dopamine level in a natural way and make your current medication work better, which you are probably already trying with supplements. You also know the rest of the list: eating certain foods, good diet (MIND) and engaging in healthy practises such as exercise, anti-stress life meditation and sleeping the recommended amount can help increase your body's dopamine levels. I read in your post 10 days ago that you have serious sleep problems, that certainly won't improve your situation. Try to break that vicious circle! Have you ever tested recent your B6 vitamin value? A B6 deficiency is often not recognised by doctors. However, in PD it is common and crucial for the functioning of your medication and for your overall health.
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Rytary helped my husband a great deal to cope with wearing off time.
you could try entacapone with each dose, or get levodopa in a tablet that you can cut and take smaller amounts closer together. Or try taking a mucuna dopa eg from NOW with the levodopa as it has a peak at a slightly different time.
Try taking doses closer together early in the day then at the end of the day add an extra one.
Rytary helped me stay awake in the afternoons. Two good years later, Entacapone give a few minutes more of "on time" but my wife said I was talking like a drunk, and I had trouble focusing. I liked having a medicine with "Capone" in the name, but the costs were greater than the benefits for me. So far, nothing word=ks better that swallowing a SInemet with I feel tremors, and I don't want to wait, or take the next Rytary does a little early.
I have a friend who is successful with all the meds that I don't do well with! PD is definitely different for everyone.
Good luck!
My husband is like y Dachshundfan, we are finding his focus and speaking is dreadful and after reading this, I more and more as his wife, think the Comtan is the cause.... I will start reading more on it. . All the best
same issue here, auro1. My 1.5 sinemet was just not holding up. So I started taking the same dose 3.5 hours apart. Did the trick.
This podcastfrom British broadcasters who have PD has one of the UK leading PD neurologists about 5 mins in.
Discusses meds and advocates taking away from dairy but with vitamin C.
open.spotify.com/episode/6t...
I love the podcasts by these guys
hi
I had this last year, I don’t know why but a sudden shift happened. I am now taking 1.5 tabs of 12.5 sinemet every 2.5 hours. The timing does interfere with meals which is a pain. I just have to time things in an orderly manner. I had similar insomnia but now I sleep better and only wake once. 9 til 6. I have a young family so had to give in and take the medication. They suggested I take opicapone but this made my muscles stiffen and other stuff so that was not for me. Everyone is different though. It does take a lot of experimenting. My neurologist is always pushing higher dosages but only you know what’s working for you.
It is now a much more common view that people with Parkinson's are the best people to say how & when they take their medications
Completely agree Cloudy.I seem to gain dopamine from a good night's sleep which often gets me through the morning. If I'm later doing something energetic or social I might take a 12.5 or two.
I get the impression that neurologists want to fit everyone into a particular regime that makes it easier for them to manage.
But we're all different. So whatever works best for you
I think that each doctor or group of doctors have a common set of things they do to start, and modify and adjust over time. Is this how it works?
Yeah. I'm guessing so.
Hi, I take Rytary 4x's per day every 4 hours and if I have "off time" in between I take a regular c/l OR Kynmobi/apomorphine. You need to "tweak" your dosing, so u can function...it is horrible when u can't.
I’m 6 years post diagnosis and started experiencing most of what you described a year ago. The reduction in sleep took a toll and having to wait as long as ninety minutes for the meds to kick in was pretty stressful. My dosing was increased in response and incorporated Entacapone to extend the ON period which worked fine but has brought on dyskenisia. I’ve decided to go for a DBS implant which will occur in August.
If you’re able to increase dosage and add something like Entacapone wo an increase in unwanted side effects it’s an easy fix. Also, I found that taking .5 mg of klonipin extended my sleeping and reduced stiffness.
I have been cutting the entacopone in half and he only takes it for the first 3 doses of Levodopa for the day . I think side effects are often too much of a drug so he always tried new things at 1/4 dose then after a week adds another 1/4 and usually that is enough.
We have always felt the Comtan has made dyskinesia worse... Having tried it in 2006 and again in 2021, my husband thinks he will ditch it.... keep to the Sinemet 200/50 CR and 100/25 quick release
Hubby takes Levodopa 250 x3/day (9am, 13h & 20h) but his neurologist later added 1x Mirapexin (Pramipexole) 1.05mg slow release at 21.30 which helps massively for the extension of the day medicine for the end of the day and the night where he has a better recovery and less agitated sleep
I was on c/l 5x per day. It seemed to take forever to kick in, then I had off time where I had akathisia . I was changed to rytary 3x per day and it made a huge difference. Rytary is is a combo of extended release and immediate release c/l which smoothed out my on and off times
PS-I also take OGENTYS before bed that makes my meds work better. I have tried many meds...(I am active and young)(even though I feel like a 90 y/o some days). There are so many tx's out there...new tx's so I am optimistic. The DUOPA PUMP SMOOTHS "off times," but I didn't want this THING hanging from me all day, as it is on 16 hrs. Talk to your MD...
When I was in a similar situation (my wearing off symptoms were a bit different), I switched to one immediate release C/L and one controlled release (not Rytary, but generic controlled release). Since controlled release is equivalent to approximately 50-70% of immediate release, this combo extended my ON time back to four hours, and was approximately the same dose as I had been taking.
Also, taking controlled release at bedtime may help you to sleep. If your symptoms are causing you anxiety, that could be a strong contributing factor to insomnia.
ask your dr if you can try Rytary. It is carbadopa/levodopa capsules that are time released. They have really helped me to not have as much down time
have you looked into the high dose thiamine protocol? Daphne Bryan has a book on Amazon that explains it. Also taking cdp choline along with c/l is suppose to increase on time. The timing with food, especially the protein we have noticed really makes a difference. Watch the No Silver Bullet interview with Dr. Laurie Mischley. It’s on youtube.
I was on the same schedule as you a few years ago, but I had similar issues. My neurologist and I decided to up my C/L to 2 IR tablets 3x/day. Another year or so and I am now taking 2 tablets every 4 hours.
I have decided to do ChiGong and also have started fast walking (3.8 mph) on the treadmill at the Y 3 days / week). Others have found success with these things including not needing medication any longer.
What do I have to lose?
Gerald
Effects of medications
Medication induced dementia
Medication not working 
