Re the question about missing a dose and NMS DAWS. I was asked to go in several times off meds (4.5 hour drive to LA) and I was doing NOT too badly. I had cramps and was uncomfortable. However it seems that for the fatal elements of DAWS and NMS to be present that the person has to be under dosed or sort of living on the edge for a period of time (days or weeks) more than hours. Maybe as little as a day or as much as weeks as I did. I think I was living on the edge for a long time. Bumping my doses at doctor’s instruction by 1/4 tablet ever 30 minutes until I was at such a staggering dose and 5 years out that I was literally going into DAWS every time I wore off. Hence the cramping and what doctors diagnosed as Dystonia. It is now totally gone and I'm on 1/10th what I was on.

I don't have PD hence I don't have Dystonia. What I think I was experiencing was the ending of the 3-5 year efficacy cycle of sinemet and the hard offs, that are hallmark end of sinemet efficacy offs, were partly withdrawal from a HUGE inappropriate and unneeded (in my case) doses of sinemet sending me into DAWS every three hours. Sort of skating the thin edge of a very steep cliff.

This is why I think the dosage protocol for PD and sinemet is flawed. I don't have PD but I had all the symptoms. They vanish as I wean further. I had it all and looked very PD to lots of neuros: lead pipe dystonia (cramps) and dyskinesia because it is inherent. It is very disconcerting that I would have gone down the horrible road of DBS and nursing home in 3 years if one doctor had not examined me off meds.

The protocol for PD treatment since there is no definitive diagnosis is the response to medication. Since the response is so poorly understood and they don't know how it works I propose a lot of us are on it that should never have been. Particularly before every other avenue is tried since this stuff only works 3-5 years. It needs to be a medicine of last resort IMHO.

I find that nobody else in this nation has ever been taken off sinemet but me? No doctors with experience??? No other patients misdiagnosed. I'm sorry I don't buy it.

When I went in off meds for doctor visits I think that short periods like missed doses in most cases are not death level dangerous in most people. I am sure there are exceptions to everything though so I don't suggest it. We are all different. I will say that if you stop suddenly or reduce dose too fast you will reach crisis at some time without doubt and 20-80% of people die because hospitals have no idea even with printed instructions how to treat us. I got valium from the ER which would have killed me had I not taken my meds because I was in crisis. I've been to 6 neuro's & a chemical dependency doc. I've scoured the internet as have friends and family and NOBODY can find ANY doctors with experience. I've had several neuro's refuse to treat me.

Sinemet vacations used to be the norm until people started having heart attacks and dying in hospitals. I can tell you from experience that I thought I might not wake up on more than one occasion because my doctor is having to write the book with me on a new frontier. How can there be all this info and no doctors doing it?

I reached a full crisis after under dosing for several weeks trying to wean slowly because we were guessing too aggressively by a little then we stepped it up to very little for 4 days sort of like a sweat it out narcotic detox. Not good. I could no longer stand and could barely move.

For the first few days when I first was pronounced PD free I took little or no sinemet and was sort of left without guidance by another doc. I felt pretty fine until the cramps started a couple of weeks later and started tearing muscles I'm sure this would be variable with everyone and depend on health, time on sinemet, stage of PD, etc etc.

So while we're all different a missed dose is not too big a deal generally but it can make you miserable. I don't suggest it without a doctor's close supervision b/c u just don't know and 80% mortality is a big number. I do think the more you take the more you need and the faster you plunge into DAWS. I think it's why I had lead pipe dystonia two hours after a huge dose.

Hope this helps will keep posted on my thread as i detox further.

Oops U r correct it was UP. I knew I was partly wrong. Was searching for that reference he made. Thanks for the correction.

There is no doubt that there is a lot that they still need to learn about PD and ldopa and the other drugs that they try us out on in the hope that they will work. However, I am unable to go along with any ideas that PD is CAUSED by the medication as a generalization. That it might mimic it in some people, yes. That doctors sometimes get it wrong, yes. Tremor in 'real' Parkinson can be very stubborn and difficult to treat. Ask the people who have it and can't find a drug to treat it. Ask their docs.

I do think however that as a patient group we should question what we accept, and encourage the medical profession to think this way too. At the point of diagnosis, in many diseases, especially ones that cause cosmetic issues, i.e. make you look different, patients are encouraged to hold back from treatments, and to self-question whether they actually need treatment. Especially when the treatments are difficult or dangerous. I would say that this is something that needs to be explored for PD.IF symptoms are disabling and intrusive then treatment is appropriate, but if not then hold the meds.

And more and more this is being done, and people write here and tell of how they have held off taking meds for 3 or 5 or sometimes many years. This is a group of people who seem also to have taken the time to find out about PD. And have felt conflicted about what they learn about medication, and must actually be in a position where they feel they can live with the symptoms that they have.........

There is a huge difference between an older person who is maybe finding PD very disabling, and is at risk of life threatening falls, or will become chairbound or housebound, or could hurt themselves while cooking or making a cup of tea - and a young onset person who is anxious about the early symptoms, which may put them at risk of other things, but not the same things as the elderly person who might be losing the ability to live safely.

There is a difference in risk, and anyone with YO diagnosis ought to be encouraged to explore what their own risks are, that treatment should be offered and prescribed on more than symptomatology. Is it disabling, is it putting you at risk, is it preventing you from carrying out your everyday needs at home and at work. If it is doing none of those, treatment should be discouraged. In fact I think I would like to see counselling as an integral part of early treatment, especially if it is a clear case of PD, i.e. scans have ascertained that there is a physiological problem there. While it was once not possible to verify a diagnosis, it is now possible to 'see' who has PD, though I must add, like everything in science and medicine, and therefore PD too, there are no absolutes, PET scan rate accuracy was described to me as having a 6% false negative rate. I would like to know whether there is also a false positive rate. And what the human error range might be.........

Another thing that should be educated into any person taking these drugs, and I include the whole range, not just sinemet, is that optimal medication is like being on a tightrope, a little this way, or a little that, and you are in the s--t. Either way will bring a resurgence of symptoms, and sometimes they will be worse than they were prior to treatment. So the logical way to go if your symptoms worsen, is FIRST to try reducing a little, just a tiny bit. But not to increase...... This is something I learned from the good people here and on Braintalk, and PWLP, the people who took the time to let me know that the drugs I take are problematic.

It is wrong to say that ldopa is only effective for 3-5 years. This is not strictly true. For some it gives problems almost immediately. Others can go many years without any great problems. The issue is that some people develop sensitivity to the drug. And these people should be identified quickly and put onto something different, because it seems there is not so much a problem with moving sideways onto another medication, there is more of a problem withdrawing medication entirely.

I went into hospital for a 2 week 'washout' and on the fifth day was sent home as PD was showing itself. Was this the same PD I had before medication. Yes, I do believe it was. Was it exacerbated? Possibly. But I had clear and definitive signs before dx, and I had no tremor EVER. Slowness, and disabling rigidity, and masked face, and awful night time drools, and my body was gradually curling forward - I was becoming the classic hunched head down very slow elderly looking person at 50-ish. This is what I returned to when sinemet was withdrawn, but with a lot of pain added. And it took a couple of days for that return to get started. I was surprised that for the first 24 hours, once I had got past the wearing off bit, I actually felt better. This was very short lived, and by the third day I knew that I was back where I started.

Given the accompanying pain, and the hot, bothered agitated feel I was also getting, I guess that was getting close to NMS. And I was very grateful to get back onto the pretty low dose of sinemet I had taken for around 4 years.

I tell this because everyone is different. The way we take our meds, the amounts we take, our different cocktails are all different. So we have to look at what is similar in the stories, to find out more. To where the common things are. Those of us who progressed onto high doses of PD medication fast seem to have the roughest ride, there is some indication that those of us who take several different medications may have it harder than those on mono-therapy, there is an ongoing story of people missing a dose or two and feeling better, this needs to be explored. And then there is DBS........

This is where the most questions arise. Why is it easy to withdraw medication after DBS, or at least reduce it drastically.... This is widely reported, though many seems to still take a little ldopa, very low dose. Do any completely stop? And how was that experience, easy or hard?

There are many many questions.

Some of the ones that this conversation has raised for me are:

We are told, in the literature, that if you do not have PD sinemet will not do anything for your symptoms. It might however give you schizophrenic effects (excess of dopamine in brain.) How factual is this assumption? Is it a theory, or has it been observed in many people?

Are doctors trained to look for signs of sinemet intoxication, or dependency?

How many doctors ever get to look at full blown untreated PD? Because there is such a thing, there are groups of people who never, ever get close to getting treatment, for economic and social reasons. And there are those who hide their symptoms for years because of stigma.

A small note. I have been seen by several neuros. The two who have seen me unmedicated both dxed PD without hesitation. Out of the remainder, none can see PD, as I have no tremor, I am on low dose sinemet, to which I have a good response, have never taken or been offered an agonist. 'Yet my symptoms are a mirror of what my untreated grandmother had. She suffered the classic way, became stiff to the point of immobility, and declined once she became bed bound, losing the ability to communicate, and swallow. She was very active however till late in life, and she progressed very slowly. As I think I am doing..... I have been taking sinemet for 8+ years, only just showing signs of dyskinesia, but have had dystonia since well before medication. Sinemet never gave me that magical relief from gait problems that you see in the videos, I guess I got around 80% improvement.

So are our neuros seeing side-effects as PD?

Does the whole way of treating PD need reappraisal?

Is this one of the reasons why people are being offered DBS - that it is seen as more effective for longer?

Does PD itself now urgently need to be seen as a spectrum of disorders? Would our individual place on such a spectrum help identify better treatment practice.....

Does duodopa need to be looked at much more closely? I for one am very interested to know why it works so well, and was intrigued when I found out that it acts on receptors outside of the brain - in the gut and elsewhere......

And, why, oh why, are they looking through their microscopes more than they are looking at us?

Lindy

Lindy,

Sorry if in my rush to burble things out if it seemed I implied meds caused PD. I didn’t mean to suggest that there are a legion of induced PWP’s walking around out there. I agree with you-meds can cause symptoms that do a darn good job mimicking. I understand your good point about return of symptoms esp in the case of familial PD.

My noggin also obv "needs" the sinemet still or I wouldn't descend into immobility with the severe cutback I tried. The fact remains that for whatever reason I'm maintaining now on less than 1/10th dose and no agonists. Gone are the hard offs, dystonia, and thank goodness dyskinesia. It makes me wonder how many more PWP's could benefit if dosage protocol was changed and we did demand more attention to pwp instead of the microscope. I’m so much higher functioning if not back to 100% it’s far better.

I still wager money I would be diagnosed with PD if I walked into a doctor’s office today with no explanation though. I have to say it seems chicken and egg-is this (in my case false induced/mimicked PD) or will my brain not recover dopamine manufacture and hence have sinemet induced PD. The answer is unknown still. I don’t mean to go the extra step of saying sinemet induces PD. I think we as patients need to be bringing these things up though. Why all the studies and doctor’s theses about NMS and DAWS if NOBODY is actually doing that work or taking people off sinemet?

I do also agree all situations area different i.e. elderly pwp needing help to stay mobile vs. EOPD. I don’t mean to suggest that this drug isn’t a savior to many. I do mean to question the dosing protocol and the higher and earlier administration of sinemet when there are DOZENS of less dangerous drugs to try first. Whether sinemet has a 3-5 or more efficacy rate the truth remains that it stops being efficacious for everybody eventually as evidenced by offs. At least that is the explanation the medical community offers everywhere I read.

It is a fact that longer on l-dopa means more unwanted and severe motor fluctuations. Given my h*ll who is going to go through this without some really powerful motivation? I suspect there are many like me, which is a horrible shame and I want to give everyone that little question to nag at them and get them to challenge the doc or ask or get better educated.
Good questions-have docs ever seen untreated PD along with the others posed. The answer is yes but not as often now days. Many people had older family with untreated PD in my mother’s generation and most certainly in my grandmother’s because they knew people that in retrospect certainly had it. Not in my family but friends’ families.

The problem is how soon we all forget. Most of those people were poor farmers on my mom’s side of things in remote TX, AZ, NM, farming communities and most without cars not all that long ago. My mom grew up using outhouses so we aren’t that far removed from the day that someone’s sick grandma sat in her room without much help because it wasn’t doable to load a frail woman on a horse or wagon and get her to a major medical center weeks away. Today’s docs haven’t seen any of this I bet. It seems like a Hollywood movie: a mini-Armageddon where all technology was lost and now must be reinvented. Unf a big step back as we reinvent the wheel to put it back on he wagon and millions of lives hang in the balance as we do that.

I got high as a kite when I bumped my dose back up after kicking way down. Anybody that thinks this isn’t addiction or it doesn’t give a high is wrong. I also wake every 2-3 hours still even though I don’t take night meds any longer b/c I have for 5 years. My body still wants/needs a kicker in the night. That might be why insomnia is also a “hallmark” PD symptom. Though usually with the disclaimer, “we’re not sure if it’s a symptom of PD or the depression brought on by PD.” I don’t hear about the addiction to l-dopa because that might take some research grants and change some cushy jobs at some cushy clinics with some docs (that drive Tesla’s and Lamborghini’s that I see under dust covers in the doctors parking when I go to LA for appointments) and publish 5-6 papers a year.

Not that these guys are evil or doing it on purpose. Some may be working it but I think we often find what we expect to find (even with the best of intent) or want to find even subconsciously when we go in with preconceived notions. We somehow manage to justify ways to exclude data that don’t fit our conclusion. This is why triple blind studies were invented. The human brain is amazing and can fool itself with the best intentions, just as it can overcome dystonia or Alzheimer’s under conditions which science doesn’t understand yet.

My understanding is still that scans are not accurate as diagnostic tools for PD. Scans are not imaging tools in the sense of seeing the brain structure. They certainly cannot see the basal ganglia or the dopamine producing cells hence cannot be as definitive as say the plaque visible in Alzheimer's patients or the cell death associated with MS. For PD, for now scans are tools in the sense of imaging active areas of the brain under certain stimuli or conditions (more sources of elimination not unique solutions to equations with too many unknowns).

Scans can tell what areas of the brain are active in sinemet taking pwp's but they are identical scans to sinemet taking p w/o pd because the drug hits the brain the same way. The scans are a response with activity regions measurement and cannot distinguish a normal brain from PD brain because the variability in individuals is too great. There are people with “horrible” scans that have no symptoms and people with seemingly normal scans that are non-responsive. These are tools to help us de-generalize but they are not absolute or diagnostic yet. Current doctoral theses still state the only true definitive is autopsy yet it is not absolute. The final element is the human one where a known history of patient was alive and functioning at level X (as in the nun study below).

Even in autopsy there are studies on Alzheimer's patients which show that brains may look horribly affected but the individual was known to be quite high functioning esp if very socially active. More use it or lose it results. How do we explain the much lesser affected brain on slide that was from an individual who was debilitated they were non-responsive. A scan or slide can not yet diagnose or reflect the reality and awesome ability of the brain.

The study I read used a group of nuns, so good control on other factors such as environment, diet, med care, social activity except some by behavior were able to do more with worse brains. I find that compelling enough along with the behavioral aspects of dystonia, (such as walking backward or running makes it go away in some, or ice skating makes it go away for MJ Fox), to think we should be questioning and reducing doses in a safe better understood ideal world. Unless we question though it is far easier for the md community to look for horses and ignore the zebras in the herd.

This still begs the question why can't I find a single soul like me? misdiagnosed and needing off? Are the mimic symptoms so good that you either stop ur own dopamine production (albeit temporarily I hope as I seem to have) hence have an induced PD or addiction issue? Surely all those docs aren't right 99.9% if dystonia is a symptom of over 50 major diseases. The stats alone defy that possibility. I get mad wondering about much needless suffering and lives/families/finances torn asunder by a poorly made diagnosis.

Forgive brevity of syntax I’m in slow-mo again temporarily. Good thoughts and questions tho. That's what I want to hear.

http://www.cchrint.org/tag/neurolept...nant-syndrome/

hard to find death stats in the US. Apparently we aren't reporting numbers. The Aussies are with kids and serotonin syndrome (same horse different color). SS (serotonin syndrome), NMS, DAWS all very similar. This article quoted 1500 children's deaths so the numbers are very high if this isolated group is high. I see lots of numbers quoting percentages of death and this can't be from 5 patients.

This is why they stopped sinemet vacations. Too many deaths. This is not a small or rare problem as the US reports seem to indicate (or just not report).

We still have to realize that sinemet and other drugs cause disfiguring and disabling side effects worse than PD in some cases like tardive dyskinesia. See article http://www.huffingtonpost.com/dr-pet..._b_341108.html

Good article describing symptoms of NMS http://www.medfriendly.com/neurolept...tsyndrome.html

It seems anytime we severely mess with our neurotransmitters that we expose ourselves to a huge set of deadly side effects. PD doesn't kill people so it makes me truly wonder are the risks of these drugs worth it unless we are truly at the place of last resort.

One article quotes "The evidence is mounting that a scandal is brewing that will rival Big Tobacco's." So my challenge is can anybody find death statistics here in the US because I cannot. reference to quote http://www.furiousseasons.com/archiv...pressants.html

The more I read and the more permanent damage I see that occurs like muscle, kidney, organ damage I wonder what this detox is REALLY doing. There are apparently a lot of blood tests out there to test for all sorts of blood toxicities but none have been discussed or tested for me. Especially detailed in the medfriendly article above. There are tests and ways to check these things but I can't find a single doc with the expertise. Lots of publishing lots of studying--no practical application.

We've all heard about reglan and TD this doesn't seem too far from that level of death and destruction of families.

We need to be careful with these statistics. The article says:

"Of the 477 deaths reported to the Australian Therapeutic Goods Administration (TGA) linked to antipsychotics, 15 were for ages 0 to 19, including intrauterine deaths. Experts estimate only 1 percent of Adverse Drug Reactions (ADRs) are reported to the TGA, so deaths could be as high as 1,500."

So, the 1500 figure appears to be based on an estimate that only 1% of ADRs are reported (which is IMHO reasonable), a reported death figure of 15 (which is presumably a fact) and the assumption that the 1% figure applies equally to all outcomes from passing headaches, for instance, to death (which IMHO is unlikely).

John

Deaths from PD are rarely reported as such. In fact many causative conditions like heart attack are not written in as the medical cause of death is the one used. Usually it is something secondary to the main condition. Same will go for almost everything. Statistics are not clear indicators of much, and can be used in many ways, bent to the need.....

Lindy

I didn't mean to imply NMS is running amok or that those figures were the not without some other purpose for compilation. I found it very ODD that I can find NOTHING in numbers other than that on mortality due to NMS/DAWS/SS etc. There are literally tens of thousands of hits on the facts, symptoms, warnings, etc but only that one had ANY numbers.

I get the litigious nature of our world these days (and that's not what I'm up to anyhow). It oddly seems the problem is being "not" numerically reported despite endless numbers of case studies, publications, histories, and etc on patient x that died after this withdrawal and patient y that died from that aspect. The percentages 20-80% mortality came from somewhere. This is being very intensely published but strangely totally absent from the medical profession as far as finding expertise.

I am of course concerned too that I would like to wake up each morning and have a few months more of detox to do apparently. It's kind of scary that they wanted to detox me in a week not knowing better. I'd like to find someone that knows better and knows to run a lot of these blood tests I found this morning that are diagnostic of problems that would otherwise go undetected and damage my organs etc. Without that knowledge anyone reducing doses or not taking their meds in a structured way could have some serious damage done without realizing. NO doctor told me this was a risk for just taking sinemet or many of these classes of drugs.

Despite my faith in my doc we both know that we're treading on unknown ground. I would like to do so as safely as possible since with the new info I found I do have concerns about how fast I should be weaning. With what I found on blood testing and kidney damage alone I now know there are a lot of blood tests I should be getting to insure I don't end up with another issue.

I also think it's very possible reading over old posts and wisdom shared in the past that a lot of people could reduce dosages and still get the same efficacy. This would also postpone some of the really bad side effects many people have to live with and perhaps surgeries. This has to be part of a learning process if pwp are to live better-treated, less-medicated, less side effected, more slowly progressing pd lives.

There also has to be a huge element of mis-diagnosis out there if I can't find anybody that has been misdiagnosed. Some element of self-fulfilling prophecy with sinemet has to be a factor. I also feel many people may be living on a very fine edge of constant DAWS as I was with these huge doses. If blood tests could determine that and more were known I would love to share that knowledge.

My main question lost in my oft over-verbalized thought process (due in large part to sinemet's affect on me) is does anyone see ANY stats on mortality in numbers?

Did I miss the full text version or do you have purchase a log in to read the entire article?? Thanks Laura

Thanks for your comments. I wonder if the electric stimuli supplied by the device replaces what the sinemet was doing hence no need to step down off sinemet? I have read a some but know that sometimes they choose differing sites for implanting electrodes for differing reasons and patient reaction during surgery. Very interesting. Did the activate your unit right away or did they wait until they got it right after a few weeks then tell you to stop l-dopa. I've heard some units are not activated until you are somewhat recovered.

Thanks for sharing. I'm glad your surgery went well.