meds/dbs - addressing symptoms or side effects?
 

I know this has been brought up and hashed out before but d0gmas post really has me thinking about this again. We are all addicted to our meds and I certainly got worse 'offs' after i started sinemet. Going off it could mean death from malignant neuroleptic syndrome and we now have new terminology called DAWS for dopamine agonist withdrawal symptom. They are defining the addictions and we can do nothing but keep popping the pills or get a dbs.

i spoke with girija and others about this but one point that was made in my communications with d0gma was that DBS usually corrects the side effects of sinemet, and are being prescribed when they don't always need to be.

This is not to say that all dbs aren't necessary. And girija pointed out that dbs provides electricity that dopamine is supposed to be creating. But how many of you have asked a person about their DBS and the first thing they say is no more dyskinesia or dystonia?

I know this is a gray area and don't know if anyone has the answer but i'm going to follow d0gma's journey to see where it leads.

any thoughts?

DBS is not the answer though has the right idea
 

Paula,

I think the answer lies beyond the treatment in terms of "Continuous pulsatile stimulation" (Google and Pub Med have loads of info), but I do have a very good article showing that this is not a new concept...it has been thought o for over 11 years now. I can get the full text to you; see my lengthy response under dystonia/ dyskinesia for more info.

Both DBS and Duodopa offer a solution to the problems of Sinemet. My question is why has this taken so long to develop (Duodopa was conceived of over 20 years ago)? Instead all this money and time wasted "exploring" yet another mysterious phenomenon that only PWP experience and myriad attempts at finding a drug to treat it when in essence all they are doing is trying to sell us on another drug to treat the side effect of another drug. Shows how risk averse pharma is.

Also, it is known that the more we take of a drug to toxic levels the more symptomatic we become. I am not sure how or why on this; my cousin, a nurse who would make a great doctor, told me this early on. I told her I had times when drug didn't seem to work and she cautioned me against taking extra doses for this reason. I have noted that the more Sinemet I take the more I freeze and the worse I feel. There is only one study I have seen that supports D0gma and what many others of us here have suspected long ago. I posted it long ago, but I think it is quite relevant here.

Novel pattern of levodopa-related motor fluctuations: ‘Paradoxical’ on

Patients found they felt worse upon dosing, and noted if they went 3-4 without meds they would go "on". Makes you wonder how much of all our recorded progression is not a reflection of med toxicity.

My insomnia is med related. I wake every 2-3 hours overnight when meds wear off-if that is not chemical dependency, I don't know what is. :mad:

Laura

Paula mentions the danger of malignant neuroleptic syndrome.

How scared of this should we be? How likely are we to get it if we miss a dose? Does anyone have any data?

The best I could find was cause of death statistics for UK for 2005

http://www.statistics.gov.uk/downloa..._No32_2005.pdf

I don't know how accurate this is, but it reports 4177 deaths from Parkinson's Disease and 5 from malignant neuroleptic syndrome.

John

john, i don't think missing one dose poses any threat. It going off all the med, eespecially cold turkey that becomes a danger. i don't remember how long you have had pd, but don't be concerned about one dose. I wonder what the situations were that caused the 5 deaths?

thanks for the good information laura- here and in the other thread.

Post DBS L-DOPA dependency
 

Hi All,
I have a few questions for PwPs who had successful DBS and are off medications.

How long did it take to decrease and/or discontinue your meds, specially L-Dopa and agonists?
Is any one completely off all medications after DBS?
Did you experience any withdrawl symptoms?
Is your "on" time after DBS any different than your best "On" time with Dopa/agonists?

Hope to see a few replies.

Thanks
Girija

Hi girija,
I'm seven and a half yrs post DBS and the agonist permax was cancelled 2-3 days post surgery with no ill effects.

Levodopa at around 3-4 weeks post op I was told I could go off it completely which also had no ill effects also.

I take a much reduced amt of levodopa (300mg) daily in the last 3 -4 yrs as the one and only problem I have since DBS was done is my gait was worsened which is a common complaint and having a little on board during the day seems to help.

Paula, thanks for filling me in on what DAW is it had me puzzled!

some references
 

http://emedicine.medscape.com/articl...overview#a0104

http://emedicine.medscape.com/articl...overview#a0199

http://emedicine.medscape.com/articl...clinical#a0218

http://emedicine.medscape.com/articl...8-differential

daws

http://archneur.ama-assn.org/cgi/content/short/67/1/58

See this video about a young DBS EOPD patient. He does state that the DBS fixed the dyskinesia not the PD. He's obviously much frustrated, as we all must feel. Taking as much sinemet as he's taking I wonder how long this DBS will be effective. I cannot yet post links so go to youtube and search parkinson's dbs surgery paul. go to www dot youtube dot com/watch?v=QFtgV1vqwiE. I have to trick it to get the link in there until i get a few more posts. take out the spaces.

the title of the vid is shaken: Journey into the mind of a Parkinson's patient. Dr Kumar in the vid was my doc and he had me totally misdiagnosed yet was pressuring me like mad to do DBS. He was also pressuring me to start staggering amounts of psych meds even though the psychologist HE sent me to (a partner who works as part of a team with him) disagreed with him and said I did NOT need psych meds. She suspected he was behaving himself b/c he thought she would eventually agree with him. When she did not he went off the first time I took someone else to an appointment with me. He told this person a lot of stuff he never mentioned to me and I was pretty much stunned as was she.

The other thing that gave me pause was reading about a woman at the same Denver DBS center that lost her ability to speak for THREE years after DBS until they "got it right."

There is an often-misdiagnosed benign tremulous parkinsonism that is very SLOW developing and should NOT IMHO be treated with sinemet since there are many less dangerous meds that treat it very well. They thought for a while this is what I might have. However as I taper off sinemet it is changing in nature and fading so not believed to be parkinsonian at all. Check out this link (take out all of the spaces) at www dot prohealth dog com/parkisons /blog/boardDetail.cfm?id=5635

Michael J Fox said in an interview somewhere that I read that his DBS fixed many things but a few weeks later he developed numbness in the OTHER hand, which was the symptom that led to the diagnosis of PD. So almost right back where he started again with all the l-dopa and now very dyskinetic. I admire the heck out of Fox and I hope he makes it well until there is a cure.

This video is the one that made me say DBS NO FOR ME NOW. Since I can pass for normal 99% of the time to the untrained eye. Thank the heavens I did wait. The doc (Kumar) in the video was my doc who said I needed DBS or I would be in a nursing home in 3 years if I didn't get that or a sinemet pump implanted. The big problem is that he misdiagnosed me, I don't have PD. I have a feeling the whole premise of treating with sinemet is flawed after my experience. I have hours of video of "classic" dystonia, tremor, and dyskinesia

I'm working on some video I'll post as I can. Still tapering so still some very slow days. But some glorious normal ones in between. I just wonder how many others there are like me. I am not that special by way of diagnosis or symptoms. I was "classic" yet I am PD free. I know the news can't be that wonderful for everyone but if even one person asks strongly enough or one demands a dosage decrease or to delay sinemet then I'll have done something in this life worth doing. Preventing one moment of suffering for anyone I consider a victory.

From what I read even with DBS you are NOT off meds. Maybe less but not none. Questioning if you are ready means you are not IMHO.

sinemet efficacy 3-5 years-hard off's sinemet side effect
 

There is much merit to this feeling worse when coming off. Most of the research I read says this is because sinemet therapy is nearing the end of its effective window of treatment, which is ONLY 3-5 years. So why are so many being put on it so soon? Why not save it until truly needed and all other remedies have been tried. There are DOZENS of meds that stop tremor and would allow things like benign tremulous parkinsonism (very slow developing) to be diagnosed and allow docs to see progression if there is any. Surely NOT a candidate for sinemet therapy as it would never be warranted or worth the risk.

We don't have to go off sinemet to get NMS or DAWS it can happen spontaneously and they don't really tell you that when it's prescribed. The doc that finally convinced me to take it as I struggled to maintain my career said what could be worse this stuff that you suffer or dyskinesia. Well in my case as in most the dyskinesia is far worse hence the numbers of people having DBS to help with it.

After all isn't this a disease with no definitive diagnosis except how we react to medication? If mine was ALL sinemet produced symptoms this raises more than a few questions. At 5 years I reached the end of sinemet's efficacy in treating me hence harder offs that I was told was progressing lead pipe dystonia. NOW TOTALLY GONE with tapering sinemet to 1/10th the dose I was on. Are docs too quick-and are we too quick to want to relieve what is excruciating suffering and slowness/frustration knowing a small pill is 15 minutes away from normalcy for most of us?

I think after 40 years that this drug is the mainstay for treatment says that the understanding is no further now with the drug than when it was introduced. Since it still costs me $171 without insurance when it should have long ago been generic/cheap and now there is a "shortage" seems to me like there is a population of must-haves that have nowhere else to turn and the drug companies know it.

It also speaks as to how little most doctors understand about the drug or PD. Most of the docs asked me why I wanted to stop if I didn't have PD. You're not serious are you??? Really???

Clearly most PD experts agree that hard OFF’S are a sign that sinemet is nearing the end of it’s efficacy in treatment for that patient. So what is easily diagnosed, as progression is also the end of effective treatment of sinemet. It seems to me we should be using this with the idea that 3-5 years and that’s what time we can expect it to work for us. That is NOT how it is being prescribed currently.

There is so much that otherwise treats PD including exercise and PT and other non sinemet drugs. It also makes me wonder how much PD dementia is due to the pharmacological pathology that multi-meds to treat side effects of other meds creates.

If dystonia and bradykinesia are symptoms of over 100 other diseases or disorders, and have so many behavioral or activity related things that change then makes me think there are hundreds of unexplored avenues we should be insisting on BEFORE sinemet.

The last person in my video who says that her symptoms were unbearable was experiencing dyskinesia (a side effect of sinemet). So if we avoid sinemet for as long as possible might we also avoid someone being permanently incapacitated, killed, or at the least undergoing unnecessary brain surgery? I think yes.

Go to www dot vimeo dot com/24665865 (I can’t post links yet-take out the spaces) I made this when I still thought I had PD. I don't think I got the credits on this version but will add them. Two sources clearly state the increasing bad OFF are a symptom of the diminishing efficacy of sinemet.

Password is oldpd

Hi dOgma,
MJF hasn't had DBS.
He had a unilateral pallidotomy, as far as I know the only surgical procedure he's had for P.D.

Nms daws
 

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

didn't mean pd caused by meds
 

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.

aussie study quotes 1500 deaths from nms in kids
 

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

deaths due to NMS or related
 

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.

reply to dOgma
 

I'm not in America where I believe the neurostimulators aren't implanted and later programmed for some time post surgery.
Charlie where are you? You know about these things!
I had the whole procedure, by that I mean electrodes implanted in the sub thalamic nucleus, usually the part of the brain where they're inserted in P.D. Plus leads and stimulators implanted in the sub clavicle area all in same day and my first programming session was the next day.
The agonist was stopped abruptly and completely with no problems on day 3 post op and I was on the highest dosage of permax 3 x daily.
I'm in no way endorsing trying this but I was in hospital so I assume any problems would've been observed.
I tapered off Sinemet myself as I knew that I wasn't in need of nearly as much of it anymore and as is policy I think in most hospitals for Parkinsonians I could self medicate. By week 3 or 4 I had neuros ok to stop it completely and as was the case with agonist drug caused me no problems.
Now several yrs down the track I'm on approx. 300-400mg Sinemet daily as opposed to pre surgery dose of 1,200mg.
The only thing I need it for now is to help address gait and balance problems which have resurfaced. I haven't had dystonia, akinesia or dyskinesia (which were a very difficult thing to deal with) since the surgery was done 7 1/2 yrs ago.

To answer the original question, in my personal journey over the last 5+ years traveling internationally to speak at symposiums and conferences, and meeting literally thousands of people with PD along the way, my personal opinion is this: I see way too many people, who in the chase and quest to regain Pre-PD normalcy, take way too much medication, become disabled not by the PD, but by the medication side effects, and then turn to DBS for the answer. I find the whole thing really disturbing.

Dealing with a chronic disease takes a long term plan, but too many of us are in a rush to "feel better now" and that's hurting us in the long run. I know DBS has indeed helped a tremendous amount of people. I'm not debating it's benefits. But like everything else in life, I see it being abused, and for some very wrong reasons, and that bothers me.

know any docs?
 

Todd do you know of any doctors with experience getting people OFF sinemet? I'm having a heck of a time finding a single one with ANY experience. I now find I could be doing organ damage if not getting the right blood tests if I go too fast.

Just to clarify I don't have PD after all. I was misdiagnosed but getting off is worse and apparently more dangerous than having PD (which isn't life(time) limiting). I was wondering with your amount of contact if you heard of anyone?

Thanks.

cramps vs dystonia
 

Todd, my personal experience with dystonia AND cramps are distinctly different. With all due respect I have a unique perspective of having what more than 12 doctors diagnosed as dystonia due to EOPD but I don't have PD. So while I may be a bit different I wanted to clarify that dystonia is not cramping. It sounds as if you are trying to relate what people are telling you with good intent but a little off the mark. Bear with me here because I have an important reason for bringing this to your attention. I think you are in a unique place to help some folks and ask your patience. You made some very good points about dosing protocol. I draw what I know mostly people I know with PD, what some doctors tell me, and my own sinemet caused Dystonia.

http://www.vimeo.com/25152661
I smashed some of my old work into this video all made when I still thought I had PD so the password is oldpd
It is intended to differentiate between cramps and the complex condition of dystonia.

Now that I'm de-toxing off sinemet and having debilitating cramps I can tell you there is a huge difference. I'm not criticizing you so please don't take it that way. Just pointing out there is are so many components of dystonia that I don't believe most doctors understand including the emotional and activity sourced changes we can induce upon ourselves. I am 6 months into de-toxing off sinemet and still have plastic and lead pipe dystonia.

Dystonia is a pulsating war of mostly opposing/related/sympathetic muscle groups often with rhythmic movement (unlike cramping which is more muscle shortening/locking/non-rhythmic). There is often additional abnormal movement that may be a jittering wavelength of activity that bends bone and tears tissue. It causes "hunchback" and permanent torsion, which is much, more than cramps are able to do. It most often involves one or isolated muscle groups (which appear to be consistent for an individual) becoming more powerful and overwhelming an opposing group to the point that tissue and/or bone distortion or destruction occurs.

Muscle "cramps" (for me) are a distinctly different draw up of single muscle contracting/shortening usually confined to one side or a group of muscles (not a system of muscles). Dystonia is made worse by high dose sinemet OFF's and relieved by sinemet dosing. Cramps are caused by lack of sinemet over long periods (like de-toxing) of time. The biggest difference is I can "relax" or stretch out of cramps and get them to ease up. There is NOTHING that solves dystonia except sinemet or other medication to alter the amount of dopamine/l-dopa in my system.

A less than optimally trained doctor (or several in my case) may not recognize the difference. I was misdiagnosed with PD when I didn't have it and I am still experiencing dystonia due to a lack of sinemet (or my own dopamine as I detox) as a result of sinemet wear off's as sinemet lost its efficacy over 5 years. My hope is that I will regain the ability to make enough of my own to get rid of the sinemet completely.

The Cramps I am currently experiencing as a result of lowering sinemet dosage, which is NMS, and DAWS related are distinctly different. The doc that realized I don't have PD said, rightly so, that if my cramps were dystonia I wouldn't be able to "relax/stretch" them away. I would remain locked up without medication and progress to a frozen state of non-movement eventuallly. This happened when we tried far too little sinemet for 4 days and I realized I was totally unable to stand after 4 days. Dystonia is not affected, for me, by muscle relaxers like baclofen. The cramps I have are relieved by baclofen and pain medication. The Dystonia appears to come and go when I'm off meds as do other PD symptoms-until I progress to DAWS.

Dystonia also has a behavioral component to it most often (which turns it off or makes it immediately quit or get worse) that is usually very unique to each individual. For MJ Fox it disappears when he ice skates. This video seems tied to either the chair or the position thought minutely different for this man when seated. Ot makes me think there is much more to Dystonia than sinemet solves and that it is to often prescribed. http://www.youtube.com/watch?v=cwdmd...4E26CBD32B463F

I also think PD is too often dx'ed because of dystonia and sinemet completes the book. The End.

I made the video I supplied the link to above when I was going through a divorce and trying to convince the judge I was NOT faking symptoms. I'm having a bit of a hard time today with my hands so forgive the editing. I have included credits though they may be slightly incomplete-I will correct that as soon as I am able.

I can shake a can of coke/food whatever or start working with my service dog and get dystonia to "let go." It's right back again the moment I quit doing that specific motion.

I'm sure you heard of the cheerleader stricken with dystonia after a seasonal flu shot who can walk backward but not forward, can run but not walk, etc. http://www.youtube.com/watch?v=5ztiAN9k584 I include part of a Fox news broadcast about her in my video. It was not a fake though there was much discussion. It's so weird as to be unbelievable. She is not unique.

I do think you hit on the KEY issue wrt the overdosing by patients and doctors in an effort to retain some normalcy. This is the worst thing I’ve ever gone through getting off sinemet. It would take a monumental amount of motivation for anyone to go through this like not having PD. But I do believe that many people could lower their doses and or eliminate sinemet from their regimen now and save it for later when they really need it if they try other therapies.

I don’t believe doctors tell patients (none of mine did) about the possibility of spontaneous NMS or DAWS just taking the drug as directed. I think the thought of being able to function and get things done, maintain a career, postpone disability, guilt over being a burden, and many factors contribute to what is abuse of a drug that we still don’t understand HOW it works. Pills are easy, a lifestyle change is not. We are all under a burden to produce and rx drugs are all safe right??

It is addictive in that it produces withdrawal symptoms that are often fatal, it does provide a high (I’ve felt it after being off for bits of time), I’m fighting the addiction now, and I fully believe that if drugs like Reglan can induce PD that it’s possible that Sinemet may cause similar symptoms or mimic the disease itself and become a self fulfilling pharmacological prophecy. The medical community does NOT understand how the drug works and I think they also are not dosing or prescribing it correctly. Also based on the fact that I can’t find another soul like me what needs to get off or has been misdiagnosed when dystonia has so many causes. I can find no doctors with experience, I can find no clinics with expertise, and no mortality data ini the US from NMS/DAWS despite the abundance of publishing.

Maybe someone like you could start these questions being pondered by patients and doctors. Do we have it wrong as those that didn’t believe that fleas spread the plague or that bacteria and germs didn’t exist? I think we do. I think a lot of pwp's are pw/op's too like me. Dystoia now seems to = PD when the odds are it probably is not statistically.

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