I have a bad habit of over dosing when I'm in an off time.

[dfasci]

I take a total of 8 stalevo 200mgs and 7 Sinemet EQ 100mgs during the day. My off periods are extremely terrible and at times I'll crush 1 or 2 EQ's and take with ginger ale. One time I had taken a Stalevo at 6pm , 2 EQ's at 6:45, 1 EQ at 7:00 and one at 7:15. I took my Stalevo again at 8:30 then of course it affected me that night. I've taken two Stalevo's at once and it ain't pretty when they kick in. I have a lot of extra pills. Probably not good for my heart.

[betil1]

Keşke bir çözüm olsaydı

[Despe in reply to betil1]

What language is this? Would you please translate?

[chartist in reply to Despe]

It may be Turkish in which case it translates to :

::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

'I wish there was a solution'

:::::::::::::::::::::::::::::::::::::::::::::::::::::::::

That seems to make more sense in the context of the post!

Art

[betil1 in reply to chartist]

👍 😊 I'm Turk

[Despe]

Thanks, Art! Helpful as usual. What language is it?

[betil1 in reply to Despe]

Turkish.

[felixned]

Try to identify what triggers the off periods. For me it's eating animal protein and bad fat. If I eat mostly vegetarian food, no dairy, use only qualify olive oil I can minimize off time significantly

[dfasci in reply to felixned]

I love milk. I also love eggs, greasy hamburgers, fried onion rings etc. Milk is the most I consume, I realize the other stuff is bad. I have it once in a while. I also mix protein in my milk. I usually do this at night. I've lost almost 50 lbs and need to gain weight but when I eat a big plate I pay for it.

[felixned in reply to dfasci]

I hear you. I never particularly liked dairy products but a rib-eye steak with the loaded baked potato and a glass of a good red wine are definitely missed. Also a burger with all of the good stuff from a local joint with the glass of beer sounds very appealing. But when I think of 3-4 hours of misery I have to experience after I eat that 'good' stuff I immediately reach for carrots (well almost . On the bright side I can eat good bread, cereal, fruit, berries, pasta without meat, 99% of veggies, olive and coconut oil without repercussions most of the time. Occasionally I have OFF period although I didn't do any cheating. I eat fruit bars instead of ice cream and use coconut or almond milk substitutes

[dfasci in reply to felixned]

Nothing worst then not being able to eat what you want anymore. Also just getting up and going to the car to drive somewhere. I'm stuck in the house most of the day sitting in my chair. Welting away.

[Grasss1973]

I’m not sure what off time means for each individual here, but if I am late taking my dose, I get severe muscle tightness in my lower chest and upper abdomen. I can not walk when this happens... have to sit down. Feels like I can not take a deep breath against the muscles that are cramping.Decided a few days ago to use my iPhone and set alarm to go off every three hours including during the night. Seems to be working a little better. I think the idea is to stay ahead of the symptoms and for me, seems like I need a reminder especially during the night.

There is apparently a new formulation of carbi/Levo in a powder or spray... (not sure which) that is supposed to act quickly to abort what you are experiencing.

[dfasci in reply to Grasss1973]

My off time is like yours. The muscle tightness is dystonia. To me it's the worst part. Feels like 20 tons are on top of me. I have to sit also and can't move. Timing is everything but still have many off periods. I used to lay down but I'm getting used to watching TV. I can't watch violent shows, I watch relaxing videos on YouTube. Even when I'm "On" I can't play video games like Call of Duty, I get so worked up it's crazy. When I'm "On" if I do something strenuous my meds wear off. My body knows if I want to do something it responds by taking the meds out of my system and makes me go down.

[Kwinholt in reply to Grasss1973]

Hi there the new formulation is called Inbrija, it’s an inhaler with a powder form of straight levodopa. I was prescribed one (very pricey) but was able to get script assistance through the manufacturer. However, I too experience the dystonia and was hoping the inhaler would help me on my long runs bc it supposed to act within 10 minutes. So unfortunately when I’ve tried it (3 times) now , it made me feel “out” of it. Almost like a bad hangover. I kept feeling like I had to put my head down . So far it’s not right for me but I will try another time but only when I’m at home. But it might be great for others. Very promising is it works like they say . Take care. Karen

[dfasci in reply to Kwinholt]

In January I'm having DBS done. I hope this will help.

[Parky-in-Italy]

WOW. That is a high high dosage and will create problems (more on, off, discenisia et al).

NEVER take more levadopa than is absolutely necessary. Bit late to say this now BUT levadopa is a one way street. I strongly suggest you talk with a knowledgeable Pakinsonologo (Parkinson Neurologist). There are options. Don't panic yet!

Strange you are taking Stalevo when Opicapone +Sinemet is proven to be easier and more effective.

OPTIONS

Duo Dopa (Gel levadopa) which is dripped from a bag into your intestines (depends on your age... not great for younger people)

Rescue medicines. (will keep you on and act fast)

- Apomorphine (until recently a pump but FDA approved as something you can disolve under ths tongue.

- Levadopa spray, as stated above is useful but I fear that more access to Levadopa is not a good solution. Abuse of the spray in under FDA investigation.

Depending on Age

DBS, sounds terrable but is 80-90% highly effective in lowering meds and reducing on and off. been around for 40 years (STN directional rechargable batttery)

This is from the heart. DO SOMETHING. WE see many people taking 1000 mg or more and we know where it can lead.

Good luck

Alexander Reed

European Parkinson Therapy Centre.

[86eightynine95]

Have you tried Amantidine? It really helps me with on/off, underdose/overdose. Not perfect, but much better than before.

[aspergerian13 in reply to 86eightynine95]

Same with me.