Hello, I am a 53 single man who was diagnosed when I was 36. I have mostly dystonia where I freeze up. Over the years I have taken just about any new drug but I had a long run on this:
Take meds at 8A, 12n, 4P, 8P, 12m. This was a Stalevo 150 with a 100/25 Sinemet 5 x, Mirapex .25mg.. Amantidine 100mg 2x. Amiltryptyline 10mg at bed.

I was at this stage for about a year and I would get a bad reaction about twice a day but sometimes more that would last for one to three hours. About six months ago this got worse so i first lowered the amount of sinemet to half a pill 5x and that helped so I stuck with that until it went bad again so I dropped the whole sinemet and took the Stalevo 150 and the mirapex every 3 1/2 hours and then every three. This worked very well until recently and now I am at every 3 hrs and it takes over 60 minutes to work and I have dyskensia in my arms which is painful. I can't sleep much overnight.

Does anybody have the same experience with the freezing and then uncontrolled movements with pain and taking Stalevo? Hope this makes sense

Stalevo was the answer to a prayer when I started taking it about 2 years ago..( 200 mgs )..In my case, my body will only tolerate 3 doses per day..If I take a 4th dose, I get dykinesia for about 2-3 hours non stop..Stalevo is notorious for dyskinesia..I get about 5-20 minutes of dyskinesia when the Stalevo is kicking in, in the morning, and about 30-45 minutes in the evening when it wears off..I take my first dose at 6:30 am, second at 9:30 am, and the third dose at 12:30 pm, and it lasts untill 5-6 pm

Lately I have been going through major depression at about 5:00 in the evening when the drugs are wearing off..I found that if I take some mucuna powder around 4:30, the dyskinesia is not as bad, the muscle cramps are gone, and the depression in absent

Unfortunately, my body will only tolerate a certain amount of medication, and I have to deal with off time, which is not very pleasant these days..I have been experimenting with mucuna powder at night, instead of a 4th dose of Stalevo..I bought a capsule machine to make mucuna pills, instead of mixing it with water, because I cant stand the taste, but they dont work

I only freeze up when the meds have worn off for the day

The trial and error never stops..For the life of me, I cant understand why 3 doeses of Stalevo works so good, and 4 doses turns into a nightmare

I cant take regular Sinemet because it doesnt work..When I take it, I either get dyskinesia, muscle cramps, or nothing at all

You sort of load up on Stalevo so it lasts the afternoon. I could never do that. If I don't take it on time I lock up. How do you go overnight without meds? I wish I could as I am up every three hours now to take them.

I have a motorized recliner that I sit in when I take my meds. I make sure I have a phone, enough water, more meds, Tv remote, walker, and urine container with me. I just bought a special heating pad made for use on muscles and it helps the awful muscle cramps until the meds take effect.

A 200 mg dose lasts me appprox 3 hrs and 20 mins..If I wear off inbeween doses, I lock up too, almost paralyzed, so I have to take the 3 doses 3 hours apart to make sure I overlap them..Why does Stalevo last another 5-6 hours after the 12:30 pm dose?..I dont know?..It is baffling..But if I dont take them exactly 3 hours apart, they wear off..The only other pd drug I take is Amantadine 100 mg x 3 daily

How do I go overnight without meds?

It is not easy..Although I have freezing episodes, my balance is still good..after my meds have worn off for about 4 hours, the brandykinesia isnt as dominant..I take 10 mg Ambien for sleep

The wearing off period in the evenings are the worse..I get dyskinetic for about 30 mins, and the sweat pours off of me..Then my whole body gets weak, and I have like an anxious feeling in my chest that causes me to breath heavy for a while, accompanied by severe depression, like a feeling of entering a helpless black hole state, but it too releases after a few hours..By midnight when I go to bed, I am feeling about 30% better..comfortable enough to lay down and sleep, with the help of the Ambien

When I am medicated, you cant tell I have pd..My neuro examines me, and tells me that I have almost no rigidity, muscle tone is good, motor skills are reasonable, pd is still mostly on one side.....But when Im not medicated, I cant function very well at all..I have had pd for about 9 years


I get muscle cramps but, only during the wearing off period in the evening, and only if I am laying down, and only in my right calf where my first symptom began..I carry my cell phone everywhere I go

I think that either stress, or anxiety, or both is the root of the probem with most of my symptoms....Whatever I feel emotoinaly, manifests itself in me physically..I need to have a long talk with my neuro about this, because the man he examines while medicated, is not the man I am when meds wear off