I am 55 have park since 36. Was on sinemet for years then added Stalevo and this worked for a while. Tried all the other drugs,,,Mirapex, Azilect, etc..
They gave me dyskenesia where all I usually had was dystonia. Ended up getting "stoned" where I could not move and went into hospital. Now am taking 2- 25/100 sinemet , 1- 50/200 sinemet ER every three hours from 6A to 9P. Also 100mg Amantadine twice daily. Stalevo was making me very disoriented.

For as long as I can remember now it always seemed that taking the sinemet made me much worse before I got better. Thought this was food related and dropped 30 lbs from not eating much. It worked better on empty stomach. I am now at another turning point where I am getting a terrible reaction to the pills. Freezing up , sweating, pain in legs and arms. I live alone so this gets very scary. It comes on within minutes after taking pills. Worse when I take amantadine but happens without it.

Last night sat from 9P to 1A in agony before I felt my legs and arms free up some. In order to get to sleep I have to take the same pills again and hope they work without the pain. By 1:30A I was free.

I take the generic sinemet but tried the real thing years ago. Maybe now I have developed an allergy to it??? Any thoughts would be welcomed.
Al

Lot in common with you. Age 59. Dx 46. Have tried most of the options but dyskinesias and gut instinct sent me back to sinemet only. Taking 2x200 CR every 3 hours from 6 AM to 9 PM.

When my meds seem to not be working I find that 90% of the time that I feel bloated and that my stomach has shut down. For about a year I have been taking a ginger tablet and seem to have solved that problem.

-Rick

I also have a lot of similarities- 60 years old, diagnosed at 44. Recently (about 3 months ago) I went off Selegeline/ Deprenyl completely after 12 years or so of it being my only PD medication. It served me well and being a tremor dominant sub-type, I believe it slowed down the progression of the
disease for me.
The reason I stopped it was that I was having increasing pain in my joints and very worrisome perceived weakness in my legs that was making me almost completely immobile. I am now gaining back some strength in my legs again and starting to walk and ride my 3 wheeled bike. Also, with the aid of a shot in the knee, I now have very little pain at all, which is an unbelievable relief.
On the down side, now that I am taking sinemet only, I am subject to much more extreme offs and ons.
The latest development is trying out stalevo to smooth out the highs and lows. It is very early in my trial but the stalevo does seem to smooth things out a bit ... however, I have noticed for the first time- a freezing effect. So, that part reminds me of the experience you mentioned IBAL. I have never had that freezing experience before and it is quite alarming. I don't have the disorientation that you mentioned but just feel like I can't move.
I'm going to read through the old posts but if anyone else has had this experience with stalevo- I'd appreciate hearing from them.
I guess if this continues or gets worse, I will go back to sinemet only like you have done reverett123.
By the way, I also have been focusing a lot on the gut- taking probiotics every day and making sure, with laxatives, etc, to avoid constipation.

I take 1 1/2 sinemet (generic) from Teva every 1 1/2 hours. I do not get dyskinesia. I monitor my gut and BM, if I feel the least bloated I use mag citrate. I also try to eat as little as possible so my gut is not loaded up. Worst thing is that if I dont get the meds due to a nap or whatever I am off pretty quickly but I also have been able to keep a little bit always in my system with this method so I get right back on quickly. Remember it doesnt work faster if I were to take 2 sinemet, just brings me closer to dyskinesia. I would rather use this method than try to regulate down my doseage in order to take stalevo or an agonist. And the ER or CR is too slow.

Stalevo is like heroin..Its your best friend in the beginng and your worst enemy in the end

Cant live with it..Cant live without it..I feel like a drug addict on that ****

Take the pills in the morning..Half hour later dyskensia, for another half hour..Then parkie paradise for 10 hours...Then comes the crash..Violent dyskenesia, cramps in my right leg, and sweat like a pig..Feels like withdrawal symptoms..Cant wait for to be over and off

I was taking 200 mg x 3 daily, so I went to an MDS to get a different perspective on my meds, and what does he do?..He gives me an RX for 5 x 150 mg daily..thats 150 more mgs of Sinemet, and 200 more mgs of Comtan daily..More on time, more dyskensia, more sweating, and when I go off, I can stand up, but I cant walk..Then he says Im a good candidate for DBS..I dont think so

I need 200 more mgs of Comtan everyday like I need another...........nevermind

Sinemet by itself is a joke for me..Take a pill, dyskenisia, dystonia, sweats then.............nothing

Now I take one 200 mg in the a.m., then two 150's later on, crash at 5 pm, with less dyskenisia, less cramping, less sweats..go off, and can function alot better by putting less of that poison in my body

Ive tried Mucuna, and if the sudden offs were more predictable, Id flush this synthetic garbage down the toilet

Meanwhile pharma gets richer , and all these pd organizations?..The only ppl I see getting any benefit from them are the ppl employed by them

They put me on 300 mgs of Amantadine to address the dyskinesia, and it gives me edema in both corneas, and damn near blinded me

Sorry to be so negative, but this **** is getting really old

I can relate to this directly! I strongly believe the meds make me worse overall.

Peace,
BP with PD since 2003 at age 33 dying naturally.

Welcome BP!!..I figure Ive had pd for abut 11 years now..Started having symptoms around age 48

No tremors or rigidity..My symptoms are mostly shuffling, freezing in doorways, in narrow spaces, and around obsticles etc..But get me out in a wide open space, and I can walk a mile unmedicated wthout missing a beat..My worse problems are dyskinesia, and sweating like pig when I get dyskinetic..And neither is a pd sypmtom..There is no doubt in my mind that Stalevo makes my off time worse..When I took my first dose 4 years ago I felt like I was 20 years old again..I was an alcoholic and an addict for 23 years..Been clean and sober for 23 years now, so I know all to well what addiction, and withdrawal feels like..and that is exactly what Stalevo use is feeling like these days..Cant function without it when I get up in the morning, and no temporary relief without dyskinesia first..Then when it wears off, violent dyskesia..( broke a bone in my foot 18 months ago ), accompanied by dripping sweats, and painful muscle cramps in my right leg..Then if I take an extra dose to try to get a few more hours of on time, I feel toxic, more dysk, sweating etc at end of dose, like I drank one to many on a Friday night..Different withdrawal symptoms in comparison to being dope sick..But like getting high, the ride before the crash ain't free

The pharma lobby..the FDA..Nothing but a ****ing game..Every once in a while the throw us a bone that give us some hope, but nothing ever comes of it..Lots of smoke..no fire

I decided Im gonna live the best life I can while I can..Im not gonna wait around for them make me better

Thank Goodness someone else exists that sees some of the the realities about big Pharm, addiction to PD meds (not therapy when you need more and more till your writhing like a snake)...exactly like heroin as near as I can tell. Just because a Dr gives you a script we end up in the same situation as a street addict coveting our doses of pills often without question or interest in anything else except in passing. Ditto on all you describe above in terms of symptoms, interesting how everyone emphasis individual differences with PD when we all seem to end up with the same issues,
its just different timing and different response to meds. Buying in to the "take a pill first then worry later crowd" and the "do whatever God Dr tells you" got me seriously in trouble with more than Carb/Levo, sinemet whatever. I had to kick Klonopin and Xanax also complete with spiders crawling all over me but I kept needing more and more ....then what?

I had several hundred read these posts and not 1 person seems truly interested in what happens off the meds. Ive run into that a lot but goes hand in hand with the behaviors associated with dependence and no one wants to believe that Big Pharm and their Neuros only want their money or that their little yellow pills are not their best friend in the long run. Thank You ! I am heartened! I am 10 years in to PD possibly longer. Im 45 now and took 2 years to get off the sinemet. Once clear of that and the native took over again im infinitely better. No long string of meds to treat side effects of meds. The permutations and combinations of taking more than 3 meds is so enormous you need the dept of defense computers to determine outcomes and to manage all the side effects and interactions.....oh no I just realized my DR's are not god....oh my. I believe our best Dr are ourselves after 10+ years of bad advice overall. My Uncle, Cousin, and Grandfather all same side had/has PD and we have all come to the same conclusions based on our own physiological/psychological manifestations. A 20 minute Neuro visit then another pill.....For Real? I don't even look for cures, its like looking for a cure for "life". I have PD, im not doped up to the gills and that's the way it is. The problem is it takes a lot of work to manage the PD exercise increases etc. and I have the impression a lot of people are interested in just fix me with a pill baby........I read Bob Dawsons posts back to about 2007 ish I believe, he has some pretty good stuff. I noticed also that a lot of the time when someone comes on wanting to get off sinemet someone usually steps in and advises them to do what the Neuro says and don't ask questions type of response. Ive run into this stuff on virtually every similar site. I call them Ostrich sites....you know sand and head type situations. Its too bad but indicative of Allopathic/Western Business medicine and associated saturation advertising of pills on TV that get pulled 2 years later because they cause cancer etc.....TOTAL JOKE. Its playing out like the Big Tobacco issues of the 70's when people finally started saying "gee...this makes me sick", until then you were scoffed at for being against smoking....oh well nature of the beast eh?

Peace to you and yours
BP PD since 2003 and med free.

backpacker,
what are you trying to accomplish here? your're off meds, according to a post you made in 2012 you smoke MJ everyday, are close to stage 3 in your pd symptoms so you seemingly worse off than most people taking medicationsand you seem to be just ranting against the medical establishment. do you want people that have to take care of family member and/or have to work become instantly disabled? there has been a tremendous effort to develop non-pharmaceutical treatments starting with surgical procedures, fetal transplants, stem cells, gene therapy and none have succeeded, so yes, we take drugs. not because we are brainwashed by the pharmaceutical industry, because we have a very complicated disease to treat that affects the entire brain and because it is so difficult to recruit volunteers for clinical trials.
i remember reading the accounts of those that religously went off meds following the parkinson's recovery protocol, months of excruciating suffering while they underwent massageand accupuncture and at the end they quit and went back on meds.

i have a little more faith that there will be better treatments for pd with less side affects and in the interim i will take sinemet since it works and i have no dyskinesias after 11 years after diagnosis. a lot of pd'ers including myself waited as long as possible before taking meds, we didn't have neuros forcing anything on us, it was our family members and/or need to work that forced us to take meds.

read the history of levodopa, because only advanced patients got levodopa at the beginning, it was costly, it turns out almost all patients developed dyskinesias very quickly, implying they are manifestations of advanced pd, not levodopa. dyskinesias are significantly reduced when levodopa gel is pumped in either intestinally or into a vein, even though the levodopa is increased versus orally administered amount. newer oral forms of levodopa that have a better controlled release reduce dyskinesias. explain that.
healthy people administered a normal dose of sinemet don't get dyskinesias. i agree neuros can administer more drugs than we need but i say that implies we need better trained neuros and MD'S and better drugs, not relegate pd'ers to continuous immobility.

you started off just wanting to share "info", no desire to debate the current pd treatment recommendations? doesn't quite ring true anymore, kind of getting personal by saying we have our heads in the sand.if we take sinemet and don't follow your advice. i'm open to considering any alternatives to sinemet, i've tried a lot from chelation therapy to low dose naltrexone to iv glutathione to mucuna to countless supplements and agonists, and still sinemet, containing 2 simple chemicals is my choice.

you are saying we ultimately will be in a nursing home suffering from dementia due to sinemet? sounds kind of like the outcome before sinemet was developed. you are at or near stage 3 all day? i'm 59, diagnosed in late 2001, doing fine on sinemet and at stage 1.5 when on. i certainly tried everything i could to slow down the progression and stimulate neurogeneration including vigorous exercise before i gave in to meds.
just the eternal skeptic. but good luck trying to convince bob and others to go cold turkey, nothing like showing up here and going on an apparent crusade to get people to potentially endure extreme suffering based on what? and comparing taking a drug for an incurable disease to recreational smoking? that's just very strange imho

Itll be ok buddy you can handle it.

Peace BP (quit MMJ over a year ago also against dr. advice