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i don't have pd-all symptoms from sinemet-how do i stop?

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Unread 05-29-2011, 01:07 PM   #1
d0gma
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Default i don't have pd-all symptoms from sinemet-how do i stop?

After 10 years of thinking I had EOPD I went to a new doctor off meds and after many visits and several months of "tapering" I find that he is right. I had to do this taper by myself, injured myself, and am still working with what to do now being off sinemet. No doctors have any practical experience. I skirted on the edge of NMS or DAWS for weeks before anyone would listen to me despite the clear documentation. I can now go without sinemet but everything is in slow motion. I have a divorce to prepare for and must hire help to do even the basics. Does anyone know of someone else that has gone off sinemet permanently? How long until some degree of normalcy returns and I can quit taking small doses to get some function back.

I'm pretty angry since all of my PD symptoms were sinemet side effects. There has been no progression and apparently no PD. I had one neurologist recommend I have immediate surgical intervention or I would be in a nursing home by age 52. He suggested DBS and it was beginning to sound like I wasn't going to be given a choice despite seeing a psychologist that was a practicing partner of his. She disagreed that I needed psychiatric medication. Thank God I didn't let this idiot do brain surgery and get tanked up on MORE unnecessary meds that would have clouded my judgment.

This has to be the best news in the world but now I am stuck taking sinemet, a drug I never wanted to start and now don't need. Does anyone know of any docs with experience? I can't find despite some intense searching. It also makes me wonder how many other people don't have PD and are experiencing horrible side effects from sinemet attributed to PD when they are not PD. I can't be the only one.

I've been to 3 neurologists, 1 chemical dependency doc, 2 ER's and nobody has any experience despite a wealth of literature on the net with NMS or DAWS or the aftermath of sinemet. Will my brain start making dopamine again? Have the receptors been permanently altered? How to proceed once I've broken through the "need" to have sinemet and am no longer totally debilitated and injured by horrifying cramps. My function is minimal and so slow as to be infuriating. I wish I had the luxury of time to equilibrate but my ex who didn't want a sick wife won't allow that as he raids accounts I worked my career to create.

Thanks-best wishes to all. I suggest anyone that ever had doubts see a new doctor - off meds - if deemed safe to do so in order to determine if the "system" to publish and test especially on young onset people has lead them astray. I've spent the last 11 years as a test lab rat given all the meds too dangerous for older patients because I was stronger or unique or the only young onset patient the doctor had. This extended to being accused of being mentally ill when I asserted my own opinions about treatment. This last push to get off sinemet was spurred by the most recent accusation that I was mentally addicted to taking sinemet. I never wanted to start this drug and was talked into it by the same idiot that wanted to do brain surgery on me. This "mental" avenue always seems to be the method when a patient advocates for themselves. I've been accused of inventing side effects and symptoms even though well documented. I beat cancer 20 years ago after being accused of being mental about my symptoms. Thank God I found a doctor then that would do a simple ultrasound. Listen to your body-if you have doubts get another opinion about any treatment.
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Unread 05-29-2011, 02:16 PM   #2
ladybird
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I am so sorry that I have no answers to your questions, but I wanted to express my sympathy for the predicament you find yourself in through no fault of your own. You must feel so angry. It's also startling that ALL your symptoms were CAUSED by Sinemet. That raises so many questions in my mind.....My own consultant said he felt that PD meds were like the" King's Clothing". (Do you have that expression in US?) I'm beginning to see why.
I do wish you all the best and that you get answers for your questions. Ladybird.
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Unread 05-29-2011, 03:09 PM   #3
reverett123
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You have found the dark underbelly of our little world. They have set us up and have us by the throat. I suspect that there are a lot more of us in your position than we suspect.

The only advice that I can offer is to look at addiction clinics in Canada and Mexico. It is going to be tough.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Unread 05-29-2011, 05:03 PM   #4
paula_w
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Tongue you may not have pd

but you have a story!

you have answers to questions that no one knows yet. may i email you? don't put your email here, i'll give you my email that i don't use that often.....

[deleted]

we are writing a very comprehensive book that we think will end up in public libraries, schools, all pwp, and doctors offices all over the world .We will put it online and translate it into other languages. Already have a grant offer and an offer to translate it into korean.

you have a story, please email me. you can remain anonymous/ do you have skype? i really need to talk with you. i should have privated this message but worried you wouldnt see it right away.

thanks for sharing your exerience ..it could lead to something else that will explain that leads to more,,,,,,,,your experience is unique, unsual and extrordinary. please email me as soon as possible.

we were talking about how many symptoms are disease related so please include the symptoms that led to the pd diagnosis and ....welll if you email i'll calll and then i could ask you everything?

best ,
paula

adding: here is the site we will develop when the book is finished. we just want to continue writing about all things pwp by pwp. it has a few samples from the book. we are working on the final draft and then will send it off to be professionally edited by Anne Wasson and maybe Greg, both of whom were professional editors. Anne has published children's books and edited some of harry potter. greg was an attorney and law editor. we have every profession you can think of on this board.

so who can help d0gma get off this sinemet? we all talk about wanting to do it . does she need curcumin? lots of it. now's the chance to try something out of necessity. can we contribute or are we overstepping our bounderies and i think it should be done with group support and in communication with a nutrtionist, and other professionals.

what does anyone thinK? this would be in conjunction with a doctor of course but we could send good questions as a group> this is anecdotal evidence but witnessed.

Dogma can you take video of yourself now, then intermittently as you see change? Can you show the worst part of withdrawal? ok more to discuss on phone i hope.

http://www.parkinsonscreativecollective.org
click on book for a few samples. it is beautifully graphic and writtten by patients and carers, also a few doctors and many guest writers, all dedicated to get rid of this wretched condition.
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"Time is not neutral for those who have pd or for those who will get it."

Last edited by paula_w; 05-30-2011 at 08:26 AM. Reason: adding link and now to say sorry for the smiley i hit it accidentally
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Unread 05-29-2011, 05:49 PM   #5
paula_w
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Default d0gma

can you please tell me when you have my email address. i will then delete it. so many admirers you know...lol...more like listserves and subscriptions. haha.
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Unread 05-29-2011, 08:28 PM   #6
d0gma
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I saw your post and have your email. Will send info via email. Thanks very much. Thank you so very much.

Thanks to all sincerely for helping/posting.

I'm off the NMS & DAWS danger side of tapering by my own work and initiative. I am just stuck in slo-mo unless I give myself little bumps of sinemet to get on the computer etc. As much as I hate the drug that ruined my life I am quite conflicted about taking even another pill no matter what the reason. Unf living life at 1/20th speed is not an option for me right now. I think if it were I would be able to at least coast a bit. They wanted to hospitalize me where it takes an hour or more to get a single pill. Knowing when a crisis is at hand I need meds NOW without hesitating I thought honestly I might not leave the hospital. At home I have all the pills I thought I needed to manage my own sometimes emergency needs for anti-spasm drugs and sinemet. The ER and hospital had no idea what to do for me other than valium. I never got anyone to really READ the stack of paper I took in from the NIH and CDC which is why the literature says people die. If printed literature off the internet was of no help in my treatment I didn’t feel like I should hand over the reins to the runaway coach to someone who couldn’t drive. At least I can drive and knew the danger signs.

Apparently the trick is to taper until you run into bad spasm problems then stabilize or even up your dose for a few weeks and give yourself a break. With help from zanaflex and baclofen or similar. I injured a hip, knee, both shoulders, and one hand before they believed I was having the excruciating cramps (showed on MRI) I was describing that were so well documented. While in this middle ground of almost giving up and making what seemed like backward progress after all that suffering I started having dyskinesia and sinemet OD symptoms at times when doses should be wearing off when I should be wearing off or needing more. I tested with 1/4-pill increments what I needed to maintain and re-tapered from there by spacing the doses out since my body seemed to say this is what I need and don't need. Frustratingly these doses take about an hour to kick in. Nights are sleepless still. Sleeping pills started sleep cooking/eating and dangerous things like going outside. All remembered the next day to my horror.

Doses went from every 3 hours (the last 6 years on sinemet standard) to every 6 hours, then every 12, then 24. Then I figured I could do without and I was right. The exacerbated sinemet caused tremor in my right hand went away slowly. And I feel fine I'm just slower than cool lava ever thought of being. Hence the need to boost now and then which though I hate to take another pill I must live a life that gets things done like showers, feeding dogs etc.

Through it all I was lucky enough to get a dog to train as a service dog that was magically one in hundreds able to be a medication alert dog able to alert me when things were about to go south. Without her I don't think I would have been nearly as brave.

I was getting to the point of worrying if I would not wake up. She stood on my chest when I didn't hear alarms, alerted me before I realized I was starting to spasm, barked at me when I needed to come into the house while pulling weeds before I got stuck outside for the night. I'm not sure I would recommend what I did to anyone but I felt like I was starring in the movie Awakenings where DiNiro and all the patients that were shut-in syndrome patients were coming out of their catatonia due to a new drug and then slowly going back into nothing as the window closed.

I was always very sensitive to sinemet with loss of complex logic/reasoning behavior and never knew how difficult holding it together often was - until I got much of my mind back when tapering off sinemet. I am determined. The diagnosing doctor accused me of lying when I told him about all the compulsive shopping and constant thoughts of sex when I took mirapex. Who would make this up? This was before the disclaimers got tacked onto all of the commercials. How many people didn't make the OCD connection and question it before they lost life savings or were dismissed or prescribed a ton of psych drugs? Out of the 10 major neurologists I've been to with this last one being my knight in shining armor the first nine I believe were creating their own disorders by prescribing more drugs to counteract side effects of other drugs. The judge in my divorce actually accused me of taking meds to bilk my ex I guess $10 at a time when I still had insurance. Apparently the KISS (keep it simple stupid) strategy never comes into many of these docs minds.

Three doctors I saw very recently on consult to get off sinemet asked why I wanted to stop taking sinemet. Are you kidding me? Apart from the inability to think, all the symptoms of PD that have ruined my life for 10 years, the horrifying pain and injury from dyskinesia, and the fact that I now have no insurance are a few reasons I could tick off real quick. Even in the face of not having PD these guys don't want me to get off sinemet. One doctor even said if you think this will get us to pay for some expensive de-tox you are wrong. Hello!! I wanted to stay at home and get supportive competent care. I can't afford a hospital stay with no insurance. Sinemet withdrawal isn't disease related so Medicare won't pay. Obv they’ve never taken it.

Honestly I had not thought of Mexico and Canada. I don't know why not. I figured the states would have a plethora of resources considering all of the doctoral theses being penned every year. Unfortunately the literature is full of people that are dead from sinemet "holidays" woopsie guess we better cut that out. Kill a few more alter the rules and try some other stuff we have no idea will work or not. I am enraged at the treatment older people get in office that I witnessed who are so old and disabled by other disorders or volumes of neuroleptic drugs that they can't even advocate for themselves or may not have people that care who will.

I wonder how many people are trapped inside themselves trying to speak but so tanked on anti-depressants, anti-psychotics, and anti-dementia drugs as I almost was. Or damaged by brain surgeries never needed. One doctor told me a year in that I needed DBS to protect me from advancing PD when my only symptom was small handwriting. WHAT?!?

How many people in situations of incredible stress, sick and abusive marriage, become sick because their body's adrenal system is so overloaded they are diagnosed with PD, MS, psychiatric disorders and medicated into total disability/nursing home within a few years. I was headed there, was almost ready to give up and go there. One of my caretakers told me when we drove by one such place ohhh you never want to go in there. It's terrible. So I dug up the inner advocate that was always sitting on my shoulder doubting and let her speak. I seriously can't be the only one. My mom has a friend that was diagnosed with MS during a divorce only to find later she had nothing wrong.

I was diagnosed on hand pain and diminished sense of smell by an intern to one of the biggest medical facilities and biggest PD research/publishing team of doctors in the states. Nobody else until a wonderful out of the box thinking neurologist at Cedars Sinai bothered to listen to me. The "big" doc walked in and let the intern who administered the standard neuro-testing diagnose me and then said I agree without ever testing me himself. This is a name you know and one of the most published & pre-eminent in the country. Another told me to go get some more insurance knowing I was un-insurable and laughed at me.

This last doc who it seemed to me was about to not give me a choice about intervention is new head of huge facility controlling people's lives. with a whim of his rather inhumane and detached bedside manner. I watched him yell at people in wheel chairs, yell at his office staff, berate me for not understanding his convoluted medication form when nobody apparently did, and question my sanity by asking if I cried sometimes during my divorce.

People in his waiting room ask me if I knew ANYbody else they could go to. One older man begging because "he scares my wife to death." My response was I've been looking for 5 years, I only wish I could help. What can you do but get treated in the interim? He couldn't wait to start cutting. The first time I took a care manager in with me during my divorce he UNLOADED on this poor woman about how horrible my condition was. I was open-mouthed in shock. He never said any of this to me.
He starred in a PD patient's YouTube DBS video in which the man breaks down in the end after having the surgery. He's fly fishing again in his alpine lake but all DBS did was alleviate the sinemet symptoms. Nothing for the PD. That galvanized me. Another woman from the same clinic lost her ability to speak for 3 years after DBS until they "got it right." DBS is not a magic bullet. If you're not sure, you're not ready.
I get that some of these docs want to cure and help but I think more are geared to publish and get grants on the backs of those who they walk on to get there, the patients. I will NOT be a statistic and I have a voice.
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Unread 05-29-2011, 08:55 PM   #7
d0gma
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Default thank you

Indeed we do have the king's clothing expression heree. Thanks for your kind words, they mean a great deal.
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Unread 05-29-2011, 08:57 PM   #8
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I very strongly suspect you are correct. My heart cries out at such incompetence and needless suffering. I have life handed back with trials but I am very angry for those that surely must suffer with no voice.
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Unread 05-30-2011, 03:22 AM   #9
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Your last post is so chilling and I agree with what you say about many doctors.(I know there are some who do care).So many people look up to them and never question their decisions. That's not healthy in any walk of life.
My heart goes out to you, and please keep us posted as to your progress. Ladybird.
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Unread 06-06-2011, 10:56 PM   #10
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check your messeges please
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