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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 |
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"......:mad: 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? |
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. |
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 :D 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'. |
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. |
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. Ron |
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 |
[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 |
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. |
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 |
It's a test
As the space ship landed, he looked out the window and all he could see was a granite wall, a cliff, with little red critters scurrying around; they looked like salamanders. Then he noticed they were all lining themselves up in some sort of pattern; the window was so close to the wall, he had to crane his neck to see the full pattern they were making; he was startled to see the salamanders were forming letters of the alphabet: he slowly read out loud what they were saying:
"This... is... a.. test." And I once thought that my lessons were done. This new condition that I have - I am fighting back at it with all available weapons - and it is a bit better now that it was 3 weeks ago, and that was better than 3 months ago. I think it's another beast to chase away with everything that ancient beasts don't like. It ain't over until it's over. In Quebec French we say "il n'est pas fort; mais il n'est pas mort." (He is not strong, but he is not dead.) |
Well Bob, et.al. -
I tried taking only Mirapex this morning and no change in basic response - no on time, no ability to walk, a lot of shaking and one long freeze. I'm rather discouraged. "il n'est pas fort; mais il n'est pas mort." I like this. I am not giving up, but it does throw into question all the speculation about bad Sinemet concoctions, etc. Back to the drawing board? Laura has a lot of good ideas, it seems to me. I don't think these problems can be fixed by taking more chemicals? Maybe fewer? Maybe get a few sources of stress resolved? this is my 3rd day totally in wheelchair and it is hard to negotiate my house - and life. What next? |
[QUOTE=Sasha;
What next?[/QUOTE] Yeah, I don't know. I have been fighting this crisis for 3 to 5 months and I am getting fed up. As Groucho Marx used to say to perfectly innocent people who had no idea who he was, "You realize, of course, this means war." I am hoping to crank myself up out of the depression torpor and use all available weapons. Announce to people that I need to charge at this thing and I will probably need help. And hack away at it. Sleep? Warm milk and honey. A more comfortable pillow. Naps throughout the day. Diet? Rigorously no junk food. Pills as scheduled as possible, but no promise I can keep much of a schedule. Avoid stress excessively, totally. Music for sure. Dance? When possible. Call in the spiritual U.S. Marines. There are emotions and creativity that sometimes seem to get dopa production going again. Sometimes getting angry works (careful!) Any PWP org nearby worth sharing with? Second opinion neuro? All I mean is, go at it full blast with all you can muster, and it may slink back to its cave. I am lucky in that I get some time with a Continuum teacher (sound, breathing, meditation-like; paying open attention to what is going on inside us & etc.) Physical action, with therapist if possible; sometimes individual sessions, but consider going to a course or a group, and not necessarily a PD group. It can help to "share" as they call it, and sometimes having someone there to go through exercises and talk together... can make a big difference. Laura's ideas are great; balanced and profound. As you say too, Sasha , I am totally perplexed that I can;t tell if my system is crying out for more drugs, or if i am overdosing and should take less. It feels like overdose every time.. but then I take more and it gets better, or not. |
I am totally perplexed that I can;t tell if my system is crying out for more drugs, or if i am overdosing and should take less. It feels like overdose every time.. but then I take more and it gets better, or not.
This captures my experience exactly Otherwise, too tired to respond tonight! Thanks, Sasha |
good morning
Hi Sasha,
Thought I'd add my 2 cents worth for you to wake up to! Good advice you've been given from others in this group btw. Perhaps try and be fussier about being on time for your meds and get a pill cutter for more accurate dosages and take the same amount of levodopa in a day as you do for now only at a reduced dosage, try perhaps hourly. I think you said you're on 100mg levodopa 2 hrly so try 50 mg hrly and experiment a little. 25 mg an hr may even be all you need for less fluctuations. Go and buy a new bottle of levodopa too as like Ron said it may be the cause. Make sure you check the batch number is different to what you have now. The symptoms you mention sound like you're plain old off to me so maybe give it a go and as I often say we need to be captains of our own ship so experiment a bit with the above and good luck! |
Dissolve Sinemet for easier small doses?
Sasha and others;
I think made it up is onto something in the suggestion to spread out your l-dopa in smaller doses over time throughout the day. A practical approach that I have seen described involved dissolving sinemet tablets in a measured volume of water and sipping the resulting solution a little at a time. This might make it easier to take smaller increments of the med than trying to cut the tablets into quarter- or smaller doses. I think the logic behind approaching the fluctuations with smaller doses spread out over time has to do with how much capacity we have left for taking up and storing dopa in our substantia nigra and striatum. As more and more neurons are lost, there is less and less "buffering capacity" in the system. What was previously handled by the remaining neurons by uptake and release becomes excessive and overwhelms the receptors. |
A couple of other things - Are you taking ldopa overnight or not ?
Wonder if you are experiencing paradoxical off and on, where even on medication you can suddenly go off......... I agree with Made it up on meds, you have to find your tightrope to be able to use it - and it does sound like off's to me, though I am puzzled by it happening right after taking meds......... that is why I asked about nights. Wearing on can be as nasty as wearing off, I remember seeing something about MJF not liking the way meds kicked in. It is often v uncomfortable for me..... getting worse before better...... sinemet sensitivity is also a possibility... It is a problem when we don't know and our doctors don't know either, but nevertheless there is this issue that we are living with....... hope you both find solutions soon. |
Wow! Thanks, everyone for all of the suggestions. It will take me a while to work my way through all of these.
I'm been pretty mobile most of the day (with about a 2 hour off after some afternoon medication). Here's what I've done since last night: I took a mg of klonopin as I was very stressed. Yes, I know that can be problematic, but I'm already addicted to Sinement, so what's one more? :-) Seriously - I reasoned that if the muscles locked down experience I was having was due to stress, Klonopin would help. And it did. So stress is a factor. I did some stretches. I dug out my neglected supplements and took one of each. I listened to a meditation tape. Got some sleep. Today a friend gave me a ride to our Tai Chi class (me in a wheelchair) and then to physical therapy where my PT spent an hour fussing about how spasmed my muscles are. I made an apppointment to see the PT who specializes in neuro, esp. Parkinson's, next week. I have a small notebook and I've been keeping a record of when and what I take in the way of meds, as I do tend to forget or take an extra, etc. No I don't generally take at night. I think I definitely need to get a pill splitter and a pill box with alarm - or else, I hear there is a function on my phone (Droid) that will bo that. Of course, I would have to learn how to use the phone first. made it up, how do I find out the batch number on a bottle of medication? Unfortunately, neither my insurance or my pharmcy will let me buy more meds until the computer gives permission, but that's not too far away. ... 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.: - Conductor 71 I really agree that this is a good idea. My dr. did raise my meds rather quickly recently - because I think I was already experiencing some offs. Now I have offs coming and going plus dyskinesia . This is nuts. Backing down on the dose some is definitely worth trying. As are all the other suggestions you all have given me from Stalevo to dissolving meds in water, etc. Ron, where do you get Mucuna Pruriens? I can probably do a search for it? And, Bob, I can see we have similar outlooks: Throw the book at the monster. I'm just trying to change only one thing at a time (plus dusting off all the older interventions) to see if I can narrow it down. I seem to remember that all of this started when various docs added 4 new meds to my line-up at the same time...I ended up quitting 3 of them as I was having all kinds of crazy symptoms. Managing the PD and the medication collection is a full time job. I'm thinking maybe I have a "wearing on" situation since it gets worse when I take a new dose, and tends to dissapate after an hour or so,- where did that term "wearing on" come from? Anyone remember? I want to run it by my neuro and need to sound a little credible. Footnotes help, I've learned. HOpe everyone else is doing well and holding the beast at bay as much as possible. |
Mucuna Pruriens
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trying to re-enter without burning up
well i broke my leg playing pickle ball, tho the doctor suspects the fracture was already there. he went in and put pins and stuff to keep the hip from coming out of socket. then i descended into hell. i had an extremely severe reaction [possibly from Delaudid] and will tell this story later in more length.
relating to what you are posting about....i suspect there is just about anything in our drugs. I had to keep my leg stationary and seperate from the other thru the night. i don't have to tell anyone on this forum the challenge that presents if you are awake. thinking was that the delaudin and a ten lb wght attaching my foot to it should do it. result: one wave of restless leg syndrome after another; it was the worst night of my life, blew my mind and I am not back yet. but i knew it wasn't pain killer i needed - it was sinemet. this was an off behavior. accompanying condition: psychosis; it's a very dark place ,not reality and no place to make decisions from. i'm in rehab and am hoping for survival. i wish i could say that with humour, but i''m feeling and seein all kinds of things regarding pd and changes from being given generics. right now pd just looks like one big long stroke. pray for me please |
Sasha, 'wearing on' is another term for 'kicking in' ........... generally it means you feel worse while the sinemet gets going, then have a nice smooth patch, then they wear off...... it's all fun with this disease....... 4 medicines at once is a lot.......
Paula, so good to see you back here, sounds like the ride you have had was even rougher than I had thought it could be. This is something we know about, that we get bad reactions from drugs/anaesthetics etc., needs more awareness from medical people. Needs people like you to chart what happens so that others can benefit from your story. Get well soon, you are so missed when your voice is absent....... take care and mend soon...... |
Paula -
You are in my prayers and thoughts and anything else that may seem helpful in any respect. You have been through hell and I hope fervently the trip is almost over. Sasha |
Quote:
Psychosis is very, very nasty, and I know what I am talking about; the darkness and the pain that goes with the darkness is not imaginable; BUT, you are going to get past it. For you, as for me, it is a temporary thing triggered by the injury and the drugs and the PD; you will get past this, Paula. We need you back here. And what the H is pickle ball? Was that part of the water dance? Pickle ball? Is that legal? Anyway, it is not a cliche to say "get better soon"; don't force us to all drive to Florida and start an "Occupy Neurology" movement, surrounding your hospital, because I would throw my walker at the police barricade and get arrested. |
Regarding the new bottle of levodopa and batch no.
The batch no. should be written on the actual bottle. About not being eligible yet for a new script being dispensed by pharmacy can't you tell them you need it now? I'm not in U.S. or U.K. so don't know the rules there regarding time lapse necessary but I thought it applied more to drugs like morphine etc. Your pharmacy should sell pill cutters and some sort of timer is a great idea. Mixing a whole tab in liquid I think might not give you such an accurate dosage if your aim is to have 1/2 or 1/4 of a 100mg tab at regular intervals. I remember my neuro telling me that. The other anti parkinson drugs you take I can't say I've tried although I've taken many over the yrs. Good luck with it and experiment a bit with these ideas maybe? Paula, get well soon. Thinking of you and missing your posts! Lee |
Quote:
You are definately in my thoughts and prayers! |
Sasha, sorry for my fuzzy suggestions re taking divided sinemet doses after dissolving in water.
Because I automatically think about volumes quantitatively, I assumed that others did also. When i suggested "a measured volume of water" I was thinking eg, 100 mg tablet in one cup, then sipping measured fractions of that; 1/4 cup at a time to take 25 mg, etc. Paula, you know that everyone on the forum is pulling for you with all our might! I'm confident you will pull through this severe trial. Praying for quick resolution. Robert |
Sasha
I noted this was an old post, but nonetheless one still of interest. I too go off and have a short (15-20 min) of nausea about 15 to 30 min. after taking my meds....This is totally an uneducated guess, but due to the size of the levodopa molecule we have to take a larger than necessary dose to penetrate the blood brain barrier (BBB). Basically, the meds temporarily puts our bodies in a toxic state, in order to get sufficient L-dopa across the BBB.
Am I close in my understanding of this? Peggy |
There is a proper recipe for 'liquid sinemet' that is used for people who have swallowing difficulties. It ensures that you get the correct amount and that the active ingrediant does not degrade. If anyone knows this, please post. I have forgotten where it comes from. It is for sipping.
I do agree with Peggy on this, we are taking way over the 'right' dose just so that some gets to our brain, and for each of us the absorbtion is is going to be different. This became very evident to me when my PD nurse added entacapone to my regime, having deduced I was way undermedicated. The difference was astonishing to me, and I had to rapidly work out how to get to the best dose for me. This is a process that I think ought to be at least discussed with patients, the three a day paradigm is a one size fits all model, even if the number of tablets is greater than that! So many different factors to work with.... and our brains are sensitive to this stuff. When I have problems I have learned to try a little less, rather than a little more, as my first choice. Right now it is working for me, and I prefer the very slightly undermedicated to being overmedicated and head-charged with a wayward body. |
Hi Peggy,
Thanks for adding to the hypothesis-building segment of this thread! (I do kind of feel like this is what has been happening). I used to get the nausea after each dose too. I totally believe that the word toxic applies. But then my neuro responds with raising meds if there is a problem. After a few days at the higher dose, my body likes it increase in its addictive substance... Up most of the night with muscles tight and hurting. Do other people take meds at night? Sasha |
Link to source of the recipie
Quote:
I will extract the recipie itself and post it separately. |
The recipie
If the surgery you are having precludes taking anything by mouth for a significant time, you can make liquid Sinemet which can be sipped as needed or put down a stomach tube (taken off of suction for 30 min). The total daily dose is mixed in a small amount of warm water containing 2 grams of ascorbic acid powder (vitamin C). Then enough water is added to make one liter. It is taken in divided doses during the next 24 hours.
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Good morning, Paula
Good morning, Paula,
I am looking out my window; the leaves have all changed colour; what was left of the garden got frozen last week - very late this year. It is amazing that we were still eating from the garden, almost to mid-October. Ursula and I are thinking about you, and about suing the pickle ball empire, and about meeting you when the world P.D. congress is in Montreal. |
Good morning Bob
Quote:
I woke up at 3 am and laid there till 6 am before getting meds. Never felt any pd symptoms....wondering why. My crooked hand is straightened and morning dystonia gone. when sinemet kicks in i see fingers on both hands contracting and it's bye bye mouth. sinemet kicking in appears visually like a stroke [not that i've ever had one - i think????] but all those good things, like, movement, verbalization and thinking come from sinemet kicking in. Peripherally it's a stroke. [my words] i am in a fog and hoping i'm going to make it all the way home. the rehab center is on "my side" now. Ultimate paranoia.. .... i've got a major incision going and didn't think to ask for pain killers. today i did and got two percocets, so i''m wondering if i should still take 2 xanax and nortriptyline. i am the only one paying attention. Thank you so much for asking. i would love to meet you and that lovely wife of yours and the funny guy. pickle ball is a good guy. |
Sasha
Sounds Quote:
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Atma Namaste -
Was there more to the sentence? I would be really interested! Thanks! Sasha |
a pharmacist acknowledges addiction can happen
Hi again,
Sasha, not sure if anyone answered you, but yes I did at one time take meds over night. This was my first inkling of addiction. I think that when your brain wakes you up at the same time every night every two-three hours at wear off times and you cannot get back to sleep without it...that tells you something. My next step was to see doctor about lowering my agonist dosage and that helped me immensely. A sleeping pill that is time release may help but they leave me too brain foggy in AM. Natural things you can try are melatonin or brain entrainment waves (they correspond to our brain states of activity (alpha beta, theta delta) to induce sleep. I plan to try this wave stuf very soon. Wanted to share this reply by Mark Combes from the the PDF forums . Mark is a pharmacist who also happens to have PD. This is Mark the pharmacist I run the "ask the Pharmacist" forum. Or is true that even sinemet at high enough doses can cause an addictive/obsessive issues.It is all based on the amount of dopamine in the system. A good example is this. You have an empty glass, which represents the maximum amount of dopamine you need. The glass is set on a table, the table represents the "feel good" receptors. The water you pour into the glass is dopamine. Once you reach the top, your symptoms are taken care of. Once the water (dopamine) overflows, it hits the "feel good" receptors and cause the feel food seeking behavior. Everyones glass is a different size but, it doesn't matter the source of dopamine that fills the glass. The dopamine agonists have been targeted because they are the quickest at building up (or filling up) the glass. It takes higher doses and a longer time for sinemet, but YES, it can happen. Hope this clarifies the matter. |
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