Parkinson's Disease Tulip


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Old 10-11-2011, 10:52 AM #1
Sasha Sasha is offline
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Default Please, does anyone else experience this?

I have started having this awful reaction to taking Sinement (generic) 10 - 20 minutes after ingested - my whole body, pretty much, goes into a muscle spasm, I can't move (especially no walking) and I shake violently - not a Parkinson's shake. This lasts maybe 30 - 45 minutes and then lets up, although I still can't walk many times. IN the morning, I can walk slowly and have nothing like this until I take the drug - yet my neuro tells me it is a wearing off phenomenon! I took my medds once just before an appt so he could see the results and I could tell he was shaken up - but he just increased my dose...

Does anyone else experience this or have any ideaas what this is about or what to do? I'm pretty frantic and being unablel to walk is potentially terrifying.

Thank you so much, I know you collectively have a lot more knowledge and experience than my doctor. What a wonderful resource and wonderful people.
Thanks.

Sasha
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Old 10-11-2011, 01:07 PM #2
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Sounds more like a wearing on problem. Have you changed the type of sinemet you take recently, or the dose? Is it generic or branded? Did you increase the dose as your doctor suggested, and if so what happened......

Wearing off and wearing on can give exaggerated 'symptoms"......

Sorry, just read that is a generic, so is it the same one you are used to taking?
And did you get a prescription refill immediately prior to this effect?

There is quite a lot of latitude in active ingredients allowed for generics, my guess if this is happening at the beginning of your dose and not before meds, that you are getting too much...... or maybe you are developing a sensitivity to it......

Wish I could help more, it is hard when even your doctor isn't really able to tell what is going on.......

Oh, another thing that I noticed is that you say you still can't walk many times............

So, does this happen every dose, or does it improve through the day?
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Old 10-11-2011, 02:05 PM #3
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Default Me too, same deal

[QUOTE=Sasha;813896]I have started having this awful reaction to taking Sinement (generic) 10 - 20 minutes after ingested

I have been on PD drugs for 8 years, and this - exactly what Sasha describes - started from one day to the next, about 6 months ago.
|Generic sinemet triggers it in as little as 5 minutes after swallowing; feels very much like an overdose, happens 3, ,4, 5, 8 times a day, and once or twice during the night. Full body spasms, violent, constant inside shaking; cannot find any position that is tolerable, sometimes as if paralyzed from the neck down - cannot get out of bed or roll over or pull up the blanket or adjust a pillow - often can walk only a few feet, and only by very fast shuffling of the feet; soon becomes exhausting. climb stairs like a cat. Also taking Mirapex and Seligilene - seem to have the same effect; but sinemet for sure - when i take it alone or with the other drugs I know i am going down. It started so suddenly 6 months that I assumed it had to be a bad batch of pills - we suspect that often since Canada's only producer of sinemet shut down production the same time Merck closed theirs, and the pills i am getting now are very powdery compared to what they used to be before it all got outsourced to China (new, largest sinement production in the world - sitting in an earthquake zone in a politically unstable country; this source of supply has no back-up... ) but others around me are taking the same drugs and all is fine for them
I feel the symptoms coming on and take sinemet and all the symptoms in the world are immediately there in full force. Usually the worst part is the first 30 minutes. Sometimes then it goes away (every time, i use all my techniques against it - music, dance, emotions and etc.) But sometimes it lasts all afternoon and all evening and sometimes I wake up at midnight, having constant spasms even though it is now 6 hours since i took any drugs at all. But the one thing sure is that it hits everyday, more than once, and it is torture.
Neuro has no explanation, except fluctuations - and wants me to be regular with taking the pills on time - but when i get up at 1 a.m. and take pills then and at 4; then by 8 a,m, i have taken my day;s supply. SO I take more. It is scarey to swallow the pills because torture follows fast. but more scarey is the idea that my body is reacting like a wasp hit with insecticide; curling up and twitching; in which case my body is now refusing the drugs and my only remaining option would be to let some yuppies operate on my brain when they get back from playing golf in Bermuda. Never trust a doctor in the northlands who is always suntanned - too much golf on faraway islands seizes up the mind.
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Old 10-11-2011, 08:32 PM #4
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Bob and Sasha,
Are you able to find an alternative source of medication, preferably branded, to see if that makes a difference..... I had a batch that did something that made me not feel at all normal, 2 months supply, around the beginning of last year. It was branded, but very crumbly, in fact some of the tablets would be broken in the blister pack before I opened it.Bob, you might recall me mentioning it at the time. My pharmacist arranged for a replacement supply and haven't had a problem since. If you have any pre-problem meds try them....... on the other hand it could be something completely different, and I know that.

If they are generics maybe some of the less than 'true' versions have slipped into the system, but Bob you are saying that other people you know are doing ok. Do you know anyone whose supply is the same as yours.....

The next may seems a bit far out, but at the risk of seeming stupid I have included it.........Feel free to let me know if you think I am barking mad

I came across some kind of process being developed that would increase ldopa yield 12-fold, or something like that, I have no more info and don't remember where I found it, and it may not have been a reliable source. By that I mean it sounded like it was production development, but who knows if it is now being used or not...... I remember at the time thinking I wonder if this result adverse issues, whether the enhancement in production might not result in exactly the same thing..... and I only mention this because if it is not dose or batch related, and it is not dyskinesia related, and the doctors are puzzled, then maybe it is something related to manufacture that has not been seen before. I have an idea the paper was somewhere around 2006.

I am not a conspiracy theorist however, it is just something I came across on some kind of research science site....... probably is not relevant.

Really hope you both find some answers to this, it is bad enough having Pd without any of the fringe 'benefits'.
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Old 10-12-2011, 02:19 AM #5
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Default Impurities in drug?

As a chemist, this sounds like your source of Sinemet is contaminated with impurities. I know in the US your drugs are very expensive, and maybe lower quality drugs get into the supply chain. Yes drugs are tested, but not all impurities show up on the tests used.
My Sinemet is not crumbly, it is well shaped and doesn't give me anything like the problems you describe. I take a dose, and nothing happens for about half an hour. Then I get a tingling in the legs, which signals it is starting to work. Two to 3 hours of on time follows, and in the 2nd half dyskinesia starts and lasts until the end of dose. . As a last resort, I could post you a blister pack of our Sinemet. However, we need to know if any of the other US members have a source that does not give these bad side effects. In which case you could simply switch to them.
I can only suggest you try different sources of Sinemet, branded instead of generic preferably.
Good luck
Ron
PS As antherr idea, why not try Mucuna Pruriens, that works for me too. It contains levodopa.
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Old 10-12-2011, 10:06 AM #6
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Hi Sasha,
Had another idea, why not try Stalevo? This is a mixture of levodopa, cabidopa and entacopone. The levodopa in it is likely to be very good quality.
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Old 10-12-2011, 10:25 AM #7
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Default THanks, everyone!

Bob, you description of Sinemet reaction was masterful and very compelling! You captured it, whatever "it" is. If anything, your reaction is a bit worse than mine....which I now think is related to the generics I take though the "wearing on" phenomena -new to me - sounds plausible too.... for the first year for so I included this seductive poison in my life, I would only use the name brand Sinemet as I had a early bad experience with the generic - I think it was very harsh, and just didn't work well. Then my insurance stopped reimbursing for the branded and I decided I could cope . For a long time I had Teva and that seemed okay, then there was something I had never heard of and now, more recently, Purepac. This is like instantaneous transition from a relatively satisfactory Sinement response to extremely advanced motor fluctuations.

Lindy, you asked about the wallking - if I get physically tired, I may have a day that I can't walk without walker, or I just use a wheelchair - then I'm fine with some rest and that wonderful commody, sleep. With this medication reaction, however, my legs feel like they weigh a thousand pounds each and I just can't control them - I stand there, shaking all over, rooted to the floor, sweating profusely, trying without success to drag one leg forward so I can progress across the room - turns out that crawling is more efficient. Makes getting to the bathroom a real nailbiting adventrue. Usually, I'm best in afternoon, after settling down from morning doses, then fade after dinner.

And, yes, I did increase my dose - to 25/100 every two hours (along with .5mg Mirapex each time I take the sinemet and 200 mg Comptan twice a day) - up to seven times a day. Is this a large dose?

I have a hard time remembering to take on schedule ...sometimes I can't sleep at all at night (just deal with muscle spasms the best I can) until I take my meds around 6 am. Maybe, as Ron says, it is a matter of impurities. (your description of Sinemet's effect is what I used to get, Ron) Anyone know where Purepac is produced? Maybe their quality control is lax.

Bob, thanks for pointing out the political/economic realities of where our drugs come from - it never even occurred to me! I did ask my pharmacist once if I could buy some name brand Sinemet and he said they don't even carry it now. As a big chain, they dispense what the company sends to them - I/m guessing they bought the cheapest thing on the market.

My neuro assumed I was freezing and tryed to get me to walk using some expensive device with a laser light - it didn't help at all because I couldn't follow the light with my feet and just stood there visably shaking head to foot and dripping sweat. I don't normally shake. Or sweat.

Has anyaone seen real Sinemet in the US? Maybe I could get a trial script for some and see if that makes a difference. What do you all think?

Thaks so much for the replies. Bob, best wishes to a fellow sufferer - I'm sorry you are experiencing this, but so relieved not to be entirely alone. Lindy and Ron, thanks for your input. There must be a better way to handle this. Thanks for listening.

Sasha
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Old 10-12-2011, 11:37 AM #8
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[QUOTE=Sasha;814183]

Lindy, you asked about the walking - if I get physically tired, I may have a day that I can't walk without walker, or I just use a wheelchair - then I'm fine with some rest and that wonderful commodity, sleep. With this medication reaction, however, my legs feel like they weigh a thousand pounds each and I just can't control them - I stand there, shaking all over, rooted to the floor, sweating profusely, trying without success to drag one leg forward so I can progress across the room - turns out that crawling is more efficient. Makes getting to the bathroom a real nailbiting adventrue. (QUOTE)

Sasha - what you have described is exactly what I experience. Except i am more often better in the mornings
In the spirit of the Neurotalk civil scientists doing white rat experiments on themselves: This morning i took sinemet at 5 a.m., and had the full bad reaction --- but I waited til 7:30 a.m. to take mirapex and selegilene - and i got the full bad reaction again. So it seems not to be the sinemet itself. I get the doomed feeling that my body is rejecting the drugs.
But as always, with this disease they can't even categorize properly, there are more variables than certainties - i have been very tired, i have had an infection, and i have been under enough stress to fall down like one of Montreal's bridges. Rick, especially, has pointed out how those things can turn you into a basket case when you have PD.
I thought of Salvelo, but my neuro and the general public consider that the three hallucinogens i am already taking are more than enough for the public security agencies to handle, and they want me to increase sinemet and decrease mirapex. But that's just me

what''s up with sinemet CR controlled release. \if this is just fluctuations?

But why, it was always as Ron said - 30 minutes to relief - then in one day switched to bad reaction AFTER taking drug.
sometimes seems just the taste of the drug on my tongue sets me off

Figure i must have busted a valve somewhere
Something unplugged itself and wandered off
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Old 10-12-2011, 08:31 PM #9
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Hi, Bob and all -

Well, maybe tomorrow I'll try the medications separately...although I remember some while back trying to take Sinemet, wait 2 housrs, take Mirapex, wait two hours, take Sinemet etc.....and succeeded in royally rearranging my biochemistry. I think both were delinitely in my system simultaneously, but peaking at different times. I was a mess for days. I'll try Mirapex first, maybe.

Stress, now that is a subject. I've wondered how much that is affecting me also. Part of it is that by now I aam very sensitized to what I perceive as as stress - and my old physical outlets of gardening, excercising, etc. aren't really available nowadays....at least not much.I have noticed that a small bit of bad news and my body goes rigid. In less than a minute. Amazing. And I can't lift my llegs to walk.

Well, all of this is interesting to me, but probably peripheral to having a negative response to medications. Without that stuff, I'm stuck. As I was discovered to have a platelet disorder (which they can't diagnose and have no treatment for - sound familiar?) surgery is kind of out for me...even if I wanted someone in my brain.

Okay, I could get into a real case of self-pity here. Maybe tomorrow new ideas will surface.

My best to all.
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Old 10-13-2011, 10:06 AM #10
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Sasha,

I don't know that I can add much other than tangential experience and what I think it means. Frankly, what we "think" and experience is all we have to go on especially when we present to our doctors with an atypical reaction or symptom that they cannot explain. Always, always they fit you under the umbrella of what they know when it is really be telling us all something else entirely. I have had similar experiences as you and Bob; not the full body spasm and the acute stress reaction. There is a huge psychological component to this disease beyond the ubiquitous depression we all supposedly have. Has anyone here ever posted at length on this? No, most of us have acute anxiety and that is researched less. I also am beginning to think that some of our symptoms, some of the time are psychogenic or brought on by stress and anxiety in just having this condition. I'll just list out thoughts:

- It seems most of us are on a combo of an agonist and levodopa. I have also been on Sinemet monotherapy. I think the combo gives us an addiction syndrome. Look at how agonist causes compulsive behaviors? Why do I think this? For a year I was on Sinemet alone and had no harsh wear-offs and no need to medicate over night. Think of it...if your brain is perturbed enough to wake you all night long every 2-3 hours for a med dose...is that not addictive? I had the same experience until I reduced my agonist from 12 mg to 8 mg (Requip XL)

-My cousin, who is a medical professional, tactfully broached the addiction topic with me after seeing my stress reactions and immediate response in taking more meds to get turned back "on". She has pointed out several times that as a med becomes toxic (as in you are taking too much) paradoxically you will get symptoms very much like the ones you are treating and then some. Since being off work, I have lowered my Sinemet intake 2-3 pills a day and feel much better and less stress over-reaction.


-Stress reaction was off the charts for me too. Sasha, what you share about your reaction to even the slightest bad news rings so true for me. My mom would come over to help out with my toddler son and she would end up criticizing me for not having 10 loads of laundry complete in 2 days or whatever and I would freeze. I had a supervisor shock me at work with a trumped up accusation...I froze and was literally trapped inside the library for nearly an hour because I could not sense any muscle tone in my legs- completely shut down. This over reaction I think is because our meds place our amygdala into a state of hyperactivity.

-How could our symptoms be psychogenic? I think that freezing can be partly psychological? I learned to control my freezing through cognitive behavioral therapy and have like an 80% reduction. If it were entirely physiological, it would respond to meds alone and no form of cognitive therapy would work.

-Addictive? One more thing on addiction...I think these rather violent reactions we have between meds are another sign of being addicted. We have an autonomic reaction (sweating, flushing, shallow breathing) because our brain is reacting to not having what it is used to. My parasympathetic system is triggered too usually. You and Bob describe a restless, out of control sort of feeling...I get that too sometimes in a milder form. Then you meds kick in and it's like "ahhhh relief" Doctors call that akithesia; I see it as addiction withdrawal response.

Our instinct is to increase our meds when in turn I imagine we would benefit from riding it out and waiting for meds to kick in. I am trying to do that and having less of all of the above but if I am off for longer than 45 minutes will dose again.

Anyway...just my thoughts and experiences. Not sure that it helps but even if it assures even one of us that we are not alone in this or plain crazy then it is worth it.

Why is it doctors think DBS will take all this away? They know it is the roller coaster med fluctuation doing this. Think about it...main goals of DBS is to smooth out our meds make them more fluid and decrease how much we take.

Laura
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