I have been through hell for months..All of a sudden, dreaded offs, leg cramps that make it difficult to walk and function..dyskenisia..dont feel comfortable standing, sitting, or laying down..Dreading having to go to sleep at night because it is so uncomforable..Getting up in the morning and dreading the day ahead of me..Trying to do simple tasks, and having to stop and go lay down because of dystonia in my right leg..Horrible weak spells that make me want to give up

I went to a DBS support group last Saturday morning, desperate to do something that I do not want to do, but convinced it is that last option in my bag of tricks..I am 56 years old, in year #8 with pd, and I feel like life as I knew it is over..Thought about selling my boat

Then yesterday I saw my neuro, and he took me off the Stalevo, and wanted me to go back to basics..6 x 25/100 Sinemet per day..So my med regimen got interrupted yesterday, and last night I got on the other side of one of those horrific off periods, and began to recover without taking more Sinemet

I slept for 4 hours, and got up this mornng at 5 am with a minimal of shuffling..I decided to take a walk after breakfast..I walked a quarter mile without shuffling, and without dystonia, and felt refreshed and energetic when I was done

It is now 8:30 am..I have not taken a dose of Sinemet as of yet..No dystonia, no dyskenisia..So its a toss up..Should I stop taking Sinemet and exercise?..Or should I continue to play Sinemet roullette, and try to figure out how to dodge the inescapable dystonia, and dyskenisia that is interfering with my quality of life more than pd is?

It has only been a short time without meds, and this might be pre-mature..but I am starting to think that Sinemet is poison

I feel more hope now than I have for a while, as crazy as that sounds

To be continued..........

Steve, I was where you are a couple of years when they took me off sinemet, completely, but 2nd day I saw so slow, 3rd and 4th all pre-dx symptoms had returned. You probably have enough dopa at the moment to coast for a few hours, but you shouldn't come off everything that fast. Dropping the stalevo may have made a difference, and I would advise that you do as the neuro suggested and go back to your basic sinemet regime. I know what you mean about when the treatment is worse, it can so seem like that, but you are 8 years on now, and under the medication it will be different.

It sounds like you had too much dopa floating around your system - that's our tight rope walk - so ease back, and try and find that good balance again.

Take care, and let us know how you are going,
Lindy

Steeve,
So sorry and scared to read your post but I am sure that you have the strong spirit to overcome the pain and discomfort ..and the word that comes to mind is adaptation ... our bodies seem to adapt to pain and prolonged pain stops to hurt ..
Another thought which come to mind which is directed specially to the newly diagnosed is try to live with symptoms rather than rush to medication which only suppress temporarily these symptoms. I also believe that one medicine a time should be tried and avoid taking many medicines at same time as this complicates the situation.
Hope the best for you
Imad

Thanks Lindy..I did slow down, but I didnt take any sinemet untill 10:00 this morning, and again at 1:00 this afternoon..When it kicked in, I got good results..I am gonna try to get by on less sinemet for now, but not completely stop..Like you said, maybe theres to much dopa in my system..I have to find the middle of the road again

There is no doubt that we have a tiger (or maybe a devil) by the tail. It seems prone to torment us more just when we think we have solved the meds puzzle. Since day 1 I have meticulously kept the sinemet dosage just high enough to avoid the worst symptoms, titrating up very slowly over the years. I am still on a very consistent DM regimen also, and am still progressing, but very slowly. Have you given up on DM? My progression shows up if I stay up late (past 11PM) and when I get up in the morning. Lots of shuffling. That responds well to my first meds, one regular 25-100 and one 50-200 CR. In less than an hour I'm ready to walk the dog for at least a mile. At 2:30 or 3:00 PM, one 25-100 CR and one 50-200 CR carries me up to about 10:00 PM.

Go slow with selling the boat! Spring is coming. I was sorry to hear about that wicked nor'easter up your way. Hope your house and trees stood up to the gale. We have already started dodging tornadoes down here.

best regards, Robert

Hello Steve I haven't posted in quite while but when I saw your post I had to respond. We started our journey about the same time 8 years ago. I too am at that point where I am considering DBS, just dont' know what to do next. Maxing out on Sinemet and still having dystonia, sleeping only a few hours at a time. Now the Dr. has me trying Clonazapam. I too don't know what to try next. Perhaps you may be right and it is time to gradually taper off some of these meds. I am walking the same path and will be watching this post to see how you are doing. You are not alone, I am walking right beside you, you just can't see me.

I am shuffling beside you too. DBS is definitely in my immediate future.

I've had a similar experience. I had to taper off Mirapex (side effects) last fall. I then tried L-dopa, 1 tab of 25/100, 3 times a day. In several weeks, I began experiencing periods of dystonia/dyskinesia. With adjustments in the dosage---higher & lower---I still couldn't get rid of the dystonia. I would wake up with no dystonia & within 45--60 min. of taking L-dopa in the a.m., the dystonia would begin.I could barely walk, even using a cane. Sometimes it would last for a few hours---sometimes all day.
I went to 3 half tablets, 3x daily---still the dystonia. My neuro suggested I go off the L-dopa (I had been on it for 3 months) and immediately.... no more dystonia.
I do have a very mild form of PD & was dx 12 years ago. I have taken Eldepryl & Artane from the beginning, and will probably stop taking those in the near future. I mainly have slowness of movement and a tremor in the affected side. When I stopped the L-dopa, I began taking Amantadine, which sometimes helps with the L-dopa. It has helped a tiny amount. Last week, my neuro. thought it would be a good idea to go back to the L-dopa (I was having more symptoms), but the CR form this time. I began 25/100's 2x daily. After just 3 pills, I began having dystonia. It began about 6 hours after my last pill & lasted until for about 13 hours. I didn't take any more....will speak with my neuro . I guess I'm going to have to find a lower amount of dopamine.I think there's a 10/100 --but I don't know if it's in CR form.
Good luck! Mari-Mari

I have continued taking a walk everyday, first thing after coffee in the morning

I tried Zandopa a few days ago..(mucuna bean powder)..It took all my symptoms away for 6 hours, so I tried it again the next day, in smaller doses, with a few Sinemets inbetween..I have also found that a small portion of protein of any kind, kicks the Zandopa, and/or the generic 25/100 Sinemet in very fast..But when the Zadopa wears off, it is like getting shoved off a cliff..The after effects for me are absolutely brutal..It damn near paralyzes me completely..I only tried it out of desperation..It manages symptoms well, but bites like a rattlesnake

I woke up this morning in a terrible state of branykinesia..I couldnt move, and litterally crawled to the dinner table to drink my coffee

So I decided to try a Sinemet CR 50/200..An hour later, nothing..So I took a Stalevo 200..Half hour later, still nothing..Then I chewed a generic Sinemet 25/100, and ate an egg and cheese sandwich, and 10 minutes later the lights came on..After 3 hours I chewed another 25/100, and continued to do so every 2 - 2 1/2 hours, and I have been on all day so far, with a minimum of dyskinesia/dystonia

It seems that you did your own "tweaking" of "meds" today and with quite successful results. This should be at least somewhat hopeful for you, Steve...if it "worked" today, could it possibly work tomorrow..or, if not tomorrow, possibly the next day. What I mean is that you at least have the hope of SOMETHING "working" for you sometimes which is certainly better than nothing working for you..EVER!
I guess I am sounding like a pollyanna, but could I possibly be somewhat correct? I will be interested in what happens on some of the days ahead, Steve...whether or not your own tweaking/experimenting will work at least somewhat better for you. My pwp continue to "chant" the mantra...accept and adapt. Doreen certainly has had to do that and I, too, have learned to accept and adapt to whatever happens as she continues her PD journey.

Virginia Therese