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?

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.

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.

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!

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

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.

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