addicted to C/L?

[limcheeese22]

i have DBS 3.5 years ago.th DBS doing quite well during night time when i am completely off C/L feeling almost normal. when in the morning after taking 25/100 madopar when wearing off, my symptoms magnified, i become very off, my fingers jam together. so wearing off is much worse than being off, if i don't take i will feel weak, now living dose by dose.

i remember i saw saw one chart showing dopamine much higher at night.

is there anyone have finger jam like me ?

[peminc]

I experience the same phenomenon, namely that wearing off is for me a more annoying experience than being off. My fingers are not part of my experience in the same way as yours but my neuropathy and slow movement as well as pain in the extremities are at their worst during the wearing-off time.

I have often wondered if these annoying feelings are related to the rate of change of C/L blood levels rather than the levels themselves.

[pdpatient]

My doctor told me about a phenomenon called "the sleep benefit". 8 hours or more of sleep produces more natural dopamine. Individual patients might respond to this production differently depending upon their sleeping patterns and Levodopa intake and timing.

EDIT :

gaga1958

Found this article :

sciencedirect.com/science/a...

[gaga1958 in reply to pdpatient]

Well, that’s the problem. I can’t will myself to sleep 8 hrs. I’m lucky if I get 5. And I’ve heard medication sleep aids are bad for the brain. I do take lots of melatonin already.

How are you getting so much sleep?

[pdpatient in reply to gaga1958]

LoL. I don't get that much sleep. 😂😴

I only relayed here what my doctor said. My sleep pattern is weird. Night is day and day is night. I am also not in favor of medication for sleep.

[rebtar in reply to gaga1958]

A book that I found helpful: The Effortless Sleep Method...I'm tapering sleep aids. Best not to start them as tapering isn't for the faint hearted.

Exercise makes the biggest difference for me. And doing things I enjoy.

[limcheeese22 in reply to pdpatient]

This is interesting knowing that i am not alone

[limcheeese22 in reply to pdpatient]

thx for the link

[gingerj in reply to pdpatient]

Wow. I always wondered why even though my symptoms have steadily worsened over the years, that I still find that I can shoot out of bed with my alarm in the morning. It doesn't last long but long enough for me to take my meds and get ready for work. I definitely feel better in the morning than evening.Thanks for the info. 👍

[rebtar]

I also get numb feet, dyskinesia and tight muscles in my left thigh when wearing off. And really foggy thinking. I noticed one day when I was off and waited longer for the next dose, the thigh tension went away and the brain fog cleared.I've also found if my dopamine at bedtime is high enough that I'm symptom free, I'm less likely to sleep well.

I spent 9 months trying to get Rytary to work for me, and finally returned to rytary first dose only and after that combos of CR and IR. I may drop the Rytary allrogethet. Gives me more brain fog than regular C/L.

[tandolino in reply to rebtar]

I have been What trying to get Rytary to work for me. And get Rytary it to work for me during the night, I go to Bed At 10:30 and get out of bed at 7:30, but I cannot get it to Rytary to work for 5 hours. I take 3 (61.25-245MG CAP) 4 TIMES PER DAY. Is a really long works well for me During the night. I think I'm gonna take regular C/L During the day and retire at night.

[bloodbrainbarrier]

Mi jut

[bloodbrainbarrier]

Reply to 22: limcheese;Re your query about MAdopar 'Iam not able to help. I hava a different reeaction to Madopar compared with you and others. Have Madopar 4 times per day - 0600, 1000,1400 and 1800at a.dose of 100 mg each time.

Sorry I can't be of any help.

Bloodbrainbarrrier.

[eschneid]

I get the wearing off stiffness in my big toes. It is annoyingly uncomfortable and slightly painful.

As MJ Fox would say, "PD is the gift that keeps on taking."

Eric

[DeanGreen]

I believe I have the same type of PD as you. I have a diphasic response to Sinemet, i.e. as my levels of levodopa increase (absorbance phase), I go though several minutes of dyskinesia before achieving the "ON State". Then as levels of levodopa drop (elimination phase), I endure several minutes of dyskinesia before getting to the "OFF State". Except the Phase 2 "OFF State" after I take the Sinemet is much worse than the Phase 1 "OFF State" before I take the Sinemet. The only guess I have for a mechanism is that much of the extracellular space is flooded with dopamine which can oxidize to 6-hydroxydopamine which further decomposes to toxic reactive oxygen species (ROS) which can destroy neurons and wreak all kinds of havoc. I also experience the sleep benefit, i.e my best part of the day is in the mornings after I have had no Sinemet all night. Even a quick nap will alleviate some of the symptoms. Once I am awake and conscious, I will have about 2 hours to enjoy my sleep benefit before I go into the OFF state (tremors and dyskinesia). I had a hypnotist try to put me in a sleep-like trance, but no improvements observed.

[rebtar in reply to DeanGreen]

I think this is why some (Including me) have described a rytary OFF as feeling like "falling off a cliff. The total dose is so much higher.