quiting sinemet
 

I have advanced pd. Dx 2000, I've been on sinemet for 10 plus years. I have stopped all other drugs like antidepressants and Requip for at least 3 years. I gave up smoking, alcohol, coffee, sugar, and rarely take supplements. So, it's just me and my sinemet. My first dose takes an hour and 10 minutes to kick in. I'm very sensitive to eating anything and going off. I have dyskinesia and dystonia problems and wearing off and wearing on problems. Sinemet seems to takes care of everything when I'm on. I try to not medicate at night as sinemet seems to work better given a break in time. Some mornings I can move and get dressed and shuffle a little before my meds kick in and some mornings it takes a life or death effort to take my first meds. On my worst mornings I can't sit up to drink and let two 10/100s dissolve in my mouth.

I like everyone else with pd would like to get off of sinemet. We are told it is impossible and we will die trying. We are told our brain cannot produce dopamine. We are told by who?

My current medication schedule
6AM Stalevo 100 and extra 10/100 generic sinemet
7:30 10/100
9AM Stalevo 100
10:30 10/100
12 Noon Stalevo 100
1:30PM 10/100
3PM Stalevo 100
4:30 PM 10/100
6PM Stalevo 100
7:30 PM 10/100
9:00 PM Stalevo 100

I'm baffled. I quit taking sinemet twice and what happened didn't make sense to me. Both times were the same. I woke up in the morning or was awake at 6AM. (I rarely sleep more than an hour or two at a time and spend most of the night half awake as is typical of many of us with pd. My body wakes me up when it wants more drugs most of the time I survive the discomfort and wait until 6AM to take them.) This morning I was able to stand up, get dressed, and just by whim and defiance headed for the kitchen without taking my drugs. I made myself not shuffle and took long steps while walking. This ability to walk lasts at best a few minutes. Normally, I have fresh fruit first thing out of bed. An apple or two or some other prepared or ready to eat fruit is all I have till my drugs kick in. I'm too weak and stiff to wash an apple or cut up or peal an orange. I'm doing good to get a knife and cut the apple in half. I eat my apple at my computer and wait for my drugs to kick in. I know when my drugs are about to kick in as my feet and calves will start to cramp, curl and wiggle. I don't know why it takes over an hour for my drugs to work. It used to take 15 minutes. They used to always work and now there are days when no go. Then I'll wait until 10:30 to take a 10/100 and wait another hour for relief. Today I didn't take any drugs. I ate my apples and then got up and walked maybe 400 feet to the end of the driveway and back. Then I walked out the back door down a large stairway and up another stairway for another 400 feet. I wasn't "on" but I wasn't off either. I was able to take long normal strides with no shuffle or toe curling without drugs since 9PM the previous day. I actually felt stronger as in more relaxed and more awake (brain fog) than I normally do when "on" drugs. This is the first time I've been able to walk like this without drugs in the better part of 10 years. Of course it was the firs two time I didn't takes drugs in this manner. The first day without drugs I went for short 400 foot walks and managed to take long strides every couple of hours. I had fairly gentle dystonia compared to my normal "offs". I ate cautiously out of habit even though not taking drugs should have let me feast. I slept especially well. The second day when I got up I was "off" but free of any cramping and toe curling. It was 32 hours without drugs. I could walk without shuffling but my body was very heavy and I felt slow. I was amazed that I could get around fairly well and that the body aches and pains I feel when "off" where gone. As the day went by I couldn't believe how long I had gone without drugs. I also felt myself over a period of 12 waking hours, from 6AM to 9PM or exactly 48 hours without drugs, get slower and slower. I was going off and going deeper and deeper into a world that only people with advanced pd can know. I felt little pain but it was getting harder to think, talk, move and when offered something to eat I knew that was not going to happen. I was becoming afraid and started thinking that now was the time to start taking drugs before it was too late. My whole life was "on" / "off" at the mercy of sinemet. If I didn't take sinemet there was no more on. I was falling into a state I was afraid to even think of. How far width I have to go to get to where I would be unmedicated. Was it going to be difficult to breath like the "hard off" state of sinemet addiction?

Both times I stopped drugs I found myself in a slow but steady decline during the last 12 of 48 hours. Both times I took drugs at 9 PM . Both times I felt very uncomfortable starting back into drugs as if I didn't know how to get back on. Both times it was much more painful and difficult getting the drugs to work than normal.

Questions:

How was I able to walk normally for the first 24 hours?
Why did I deteriorate the second 24 hours?
Does my experience fit any model out there or are we all just living the big lie?
I felt NO withdrawel symptoms at all! Why?
I thought I would go into some killer off state from hell by abruptly stopping. What gives?

Quitting sinemet
 

It may not be possible. There seem to be overlapping cycles of dependency involved with some measured in weeks. Have you ever known a former smoker who responds to a stressor by needing a smoke real bad, even though it had been fifty years since his last?

You will definitely need to taper off and perhaps for months. And you might want to look into low-dose naltrexone. It is already used to treat addiction.

Hello SHCG
I have had PD for 20 years now, and I am in the process of weaning myself off Sinamet. (taken as Stavelo). If you drop it too quickly, it can actually be fatal. You need to taper it off over months, dropping the dose very slowely. I am now on 100 mg levodopa per day.I take 50 mg.at 8-00 am, I am on until 12-00 or even 1-00 pm. I tke 25 mg at 12.00 which lasts until 4-00pm when I take another 25 mg. I am now 75 years old.
I get up about 6-00am and unmedicated i can wash or shower and get dressed and do all my jobs like letting the dog out etc. This is getting more difficult. I go on the computer until 8-00am when i take my first meds.
You are taking 1,000mg, this is far too high to stop altogether. I thought i was safe at 100 mg to try stopping altogether. I was great for the first 2 days. but day3 was very bad and i had to restart on Stavelo. I now plan dropping to 75mg for a month, 50 mg for a month then stopping.
Sinemet is a very powerful drug. Look up "Neuroleptic malignant syndrome". This is the illness caused by stopping too quickly.
Take care.
Ron

Ron - what is enabling you to cut down on Sinemet? Someone mentioned you were involved with a research project (I forget the name), I emailed them to find out more (I am in Brighton) but never had a reply.

Trixiedee

Hi trixiedee,
You have to realise that when I cut down my levodopa, I suffer for it, I am far from normal, but I suffer so much from dyskinesia when I take it, I am worse off. I am an advanced sufferer, for over 20 years. I don't have a neurologist, I attend a London hospital instead and they take care of updating my drug regime and monitoring my status with a number of tests, but only using approved drugs, no experimentals.
I am convinced that long term usage of supplements like curcumin have slowed my progress, which has helped. Another good supplement is citicoline which is given to stroke victims to aid brain metabolism. Avoid constipation and have occasional periods of laxative /fibre clearouts. Constipation releases more toxins than you realise. I thnk also i am natually a slow developer. I was still running a $75m pa turnover chemical factory over 5 years into my PD.
Ron

Have you tried liquid sinemet...can make yourself and cut back more gradually...also making the dase you are taking more evenly distributed during the day??? Check old posts on how to make it yourself...it does helP!!

Hi Ron
You are always such an inspiration. How much Sinemet were you taking at the maximum, before you cut back?

Ron,

Weren't you a moderator for Janice W-Hadlocks' PRP yahoo chat group? I haven't seen you mention this and just have to wonder if you might fall into the partially recovered category.
sharilyn

Bad Idea...
 

...trying to quit sinemet. I am 55 yrs old, first symptoms approx 1986, diagnosed correctly 1990. After approx 10 years, I tried working with one highly regarded doctor, under his belief that I didn't have PD. His reasoning is not significant to this discussion. What is significant is that I tried to taper off my sinemet. The process was torture and I was totally incapacitated. It took FIVE YEARS of this tapering off, and the lower I went in dosage, the more I suffered.
Bottom line: I tapered down all the way to 3 sinemet (25/100) per day. I was unable to get out of bed or a chair or walk or talk and finally gave up on the doctor's approach. I went back to a reasonable amount of sinemet, along with several of the add on's. With 20/20 hindsight, I wish that I had quit after 5 weeks!
Don't do what I did. The symptoms and side effects that we suffer is a picnic compared to those 5 years. I hope I save you some agony.
Keith K.

Quitting Sinemet,
 

Hi Atma, The maximum Sinemet I reached was 800mg per day. That was around 9 to 10 years ago. I think it was long term use of curcumin and citicoline that enabled me to steadily cut down, driven by horrendous dyskinesia.

Hi Moondaughter,
No, I think you have got me confused with someone else. I was never involved with the group you m,ention. I was a member of Pipeliners for a couple of years, an Ame rican group. I am now an Ambasador for Parkinson's Movement, a UK group.
Ron

yours is a remarkable story!
 

Hi Ron,

I am inspired by your story!

Janice Hadlock has written about how PWPers who had managed to partially recover sometimes became very sensitive to sinemet to the point where it became very addictive and the side effects were much worse than they were for people who had not engaged in integrative therapies -she was emphatic about sinemet being much more troublesome for people who had managed what she deemed a proper "qi" flow.

you must have an American namesake because i remember 12 years ago the moderator for the Parkinsons Recovery Project yahoo chat group was Ron Hutton! He didn't remain there long tho.

You must be experiencing some improvement even tho there are also challenges? What a testimony for circumin....and your ability to heal from toxic exposure.

Thanks so much for sharing!

sharilyn

Hi SHCG, I am replying to your last questions as I had almost exactly the same experience when I was taken in to hospital some years ago for a 'medical washout of sinemet' - the doctors expression not mine. By Day five I looked as though I had aged 20 years, as parkinsons symptoms emerged. But I did have this 24 hours or so where there were no side effects, nothing, and had a weird day wondering whether I didn't have PD after all, By 48 hours in my shoulders were pulling forward, and I was very shuffly, and my head seemed to have retreated into my shoulders - I was certainly less tall. Facial mobility went fast. Day three was interesting - I could no longer do things that I take for granted on meds, like get my slippers on, or get the second arm into my dressing gown. As I was there for observation no one helped me. Friends who visited were shocked. UP to day 5 it was all downhill.

But no withdrawal stuff, just a retreat into Parkinson symptoms. A lot of loss of mobility, huge increase in rigidity and slowness. Nothing that I had not seen before though, it returned me to a little worse than prior to meds.
I was not on high dose, around 600-700 a day.
But it was stopped cold turkey.
I didn't do more than 5 days, so would other things have emerged, I think probably, yes. Would withdrawal signs, also probably yes. I did feel truly (and look) awful. But didn't have a tremor, because I never really did have one anyway, other than what others on this forum sometimes call and 'inner' tremor.

I have never been able to work out the significance of this, especially after reading horrendous withdrawal stories. That I was significantly more impaired by my parkinsonism was visible to everybody I knew. Strangely, doctors did not see this, each had a different view, ranging from a junior doctor who could feel cogwheeling in my left foot, to those who saw no PD, to the Head of Neurology who thereafter has called it 'your PD'. None of the doctors I saw had ever seen me before.......

For those who have a question mark over diagnosis, as I have, but whom sinemet has helped, this is clearly a problem. The insecurity of not knowing has led me to tentatively lowering or omitting to take sinmet as sort of self test, more than a few times. Each time I was left with the thought, is what I am seeing PD or is it withdrawal, and the only way I can answer myself is that what I do see is consistent with how I was prior to medication and diagnosis, which came at a point several years after first seeking medical help, and when my mobility was already quite challenged. So I keeps taking the meds. And sometimes I wonder what my brain will show postmortem, will I be one of the ones with no signs of PD? And then I ask myself, well, if it isn't PD, what the hell is it, because for certain it has affected my life more than I care to think about, and is slowly and progressively getting worse.

I am now taking around, 550 a day (five and a half tabs) with 3 entacapone, have some nasty offs and ons, so still on relatively low dose. A recent stomach upset reminded me of what I am like unmedicated, so no change there. Overall I am more functional on meds and 'on' than I was prior to dx, but overall unmedicated and 'off' quite a lot worse. And there are things that the meds do not help with.

My questions are and have been for a long time, almost identical to yours!
I am not eager to try coming off meds again. I just didn't like what I saw of myself. I do however, hate taking them, and hate even more that as someone with an unclear dx there is no place for me to go from here.

I am not sure what you meant by 'living the big lie'. Your other questions are my own unanswered ones...........

I do think that in time some of this will resolve as PD is found to be a whole spectrum of related disorders. I also think that as new scanning technologies develop they will find that the dopaminergic system is much more complex and less definitively seated in the SN than is commonly thought now, and that there can be other uptake 'errors' that lead to movement problems.

not as advanced, but
 

Dx April 2010 and put on 2-100/25 carbidopa/levodopa 3x/day. Dyskinesias were difficult right away, mostly in my right foot and ankle. After diagnosis I started bike riding regularly. Watching my pulse, I worked up to 100 rpm for 45 min plus 5 min warm up and cool down daily on a stationary cycle. With--doctor approved--constant lowering of dosage I got completely off of carbidopa/levodopa in October of 2011. Today selegiline is my only Rx drug for Parkinson's.

Of course no treatment is without side effects: I must use bike shorts or I get burns, I lose minerals while biking so am working on supplements with a registered dietitian, and my carpal tunnel syndrome was brought out by this vibrating machine (but solved with anti-vibration gloves).

I feel lucky that I feel good and am healthy enough otherwise to do this. And, of course, I don't know what will happen later.
:)

Quitting Sinemet
 

I'm new here and see this thread is many months old. I am partner to H, 56, who was diagnosed with PD 5 yrs ago.

He began using Sinemet 25/100 last Sept when his mobility went down to nearly nothing, 4/day. I re-met him in Oct (knew him 9 yrs ago) and moved in to assist in Jan. He saw a neurologist one time in Dec who ran him through the usual tests, then upped the Sinemet to 6/day.

I knew nothing whatever about PD or l-dopa, began researching everywhere, everything I could find. Began nutritional changes (Terry Wahl's "eat your veggies"), and began Dr. Janice W-H's foot holding, thinking there couldn't be any harm. Within 6 weeks, he began walking, from 100 ft up to 1 mile, then more. Violent dyskinesia began happening, more research, he reduced back to 4 per day, then at the end of March, cut the dose to two.

Through the spring, he upped his walking, reduced his dose, slowly he thought, and we continued with foot holding. His right (affected side) foot regained color and feeling. By May, he was walking 4 mi/day but the drug was becoming unstable, bad dysk. until the last week of May, he dropped the final 1/2 pill dose.

First week was glorious. This is easy, we thought, except the paranoia started appearing. 2 weeks later we were in utter hell and remained there for a month. Withdrawal lightened up, but he'd still cycle about every 10 days, crazyland, then he'd be okay again.

During the w/drawal, his mobility essentially disappeared. Couldn't get comfortable, could no longer get in and out of chairs, bed, car, couldn't walk 50ft., insomnia (not to mention all of the horrendous emotional fall-out).

We stuck with it and he is now 12 weeks drug free. His sleep is returning, he's walking from 2 - 3 miles daily in two jaunts, able to get in/out of chairs and car again, beginning to exercise again and uses right hand to hold a spoon about half the time. The dysk. has come back and his right arm tremors in an uncomfortable way, esp when there's an emotional upset (family).

Sounds great, huh. Here's the catch. He looked better in the spring on the drugs. His family wants him to go in to see a doctor for assessment. I'm begging them to let him do this for another month, what's the hurry? The doc's not going to see the long term, last spring's drug instability, this summer's withdrawal and the progress.

So, has anyone come this far with getting off Sinemet (and not replacing it) then gone back on? If so, were the results good? Dr. Walton-Hadlock uses the words "hideously addictive" to people going back on even tiny amounts after doing any sort of recovery work. I'm scared. Any word of wisdom or support?

Nancy

is HADLOCK a MD?
i have never seen a DOCUMENTED study of anyone with a confirmed case of advanced pd going med free before or after the introduction of sinemet 40? years ago. i would say that in my own personal case i didn't start taking meds until 4-5 years after diagnosis, i possibly could have started/stopped sinemet and been functional in the early years.
and he's not taking anything like fava or mucana? i.e,, natural l-dopa?

new to sinemet
 

Hi Ron,
Im new to sinemet(generic).I took three 25/100 and it helped alot with stiffness.I went to 2 pills because of insomnia.Now im just on 2 and if i miss ,my symptoms come bback quicker.
No doctor told me about the dyskinsea.I had it once while on risperdal,not a pleasant experience.
My hope is to return to my orginal plan of one hour of nordic trac and weights.My father had this disease and he often said the drugs didnt help as much as his daily walk every morning.
Good luck and glad your so imspired.
Hi Moondaughter,
No, I think you have got me confused with someone else. I was never involved with the group you m,ention. I was a member of Pipeliners for a couple of years, an Ame rican group. I am now an Ambasador for Parkinson's Movement, a UK group.
Ron[/QUOTE]

1. Walton-Hadlock's Parkinson's recovery project information is all posted on-line, all free. Place to start for this group, since everyone seems to be on med here is "Once Upon a Pill". Don't know if I can post links, but you can google it easily.

Many probably won't believe, esp that the "foot holding" would be in any way benefical. We chose to give it all a try because life was so miserable for him, his plan was suicide. Nothing to lose by holding his feet an hour a night.

2. H was diagnosed by 2 neurologists and his GP. Last Dec, moderate to severe. That is how it appeared back then. Still problems, but they come and go with stress.

3. No, he's not on ANY drugs, though with his family's current pressure, very likely he'll start LDN soon to try and speed up the process. Patience is in short supply around his family.

Maybe I'm on the wrong board to be discussing dropping meds and looking at possibilities for recovery.

imho, if you read this board, it's obvious we all want nothing more than to recover and reduce our dependence on daily pharmaceutical drugs. who wouldn't have that desire with any chronic disease, not just pd? have you read the thread on forced exercise/tandem bicycling?

your're on the right board if you want a serious discussion and not just a rubber stamp.

Could you give a further explanation of "foot holding"?

This is likely to sound crazy. It did to me, and I still reserve the right to skepticism. Okay, here goes.

Dr. W-H is an acupuncturist who had no intention of helping PD patients recover. Her work simply led her into it, 12 yrs, hundreds of PDers. Acupuncture was not found to be a successful treatment.

In a nutshell: she can feel the energy flowing through the body's channels. In all PDer's it was bouncing back, going retrograde, from the foot on the affected side. This was caused by an early injury, usually unremembered, that the PDer (for other emotional reasons) disassociated from. Denied, so the body never healed it correctly.

By simply having someone hold the leg and foot (and she goes into tremendous detail, but it amounts to just holding with both hands and allowing the part to feel supported), it draws the body's attention to the area and allows healing to take place. This is considered a physical recovery treatment.

She puts a HUGE warning in place which we of course ignored. DO NOT start any recover if you're still on meds. That's the reason H began reducing so dramatically and it could have been a lose-lose situation. We got lucky, able to reduce the meds quickly enough to keep the violent dysk. at bay, but at some point, because it was so fast, we faced terrible w/drawal symptoms.

Again, Once Upon a Pill documents her experience with medicated PDers in her project and I believe has the most detailed descriptions of how each of the PD drugs was seen to actually affect people (appendices). Take a look at the w/drawal chapter -- H had all of it and was DRUG related, not PD.

At some point in the project, she stopped taking ANY medicated PDers because the drug effect is so powerful.

The foot holding is only part of it, and when I told H about it, he cried. As a child, he'd had to wear bulky, orthopedic shoes and would beg his g'ma to hold his feet. We figured, "what could it hurt?" Well, it really could have.

There's a big emotional side to PD as well that needs to be healed. No one wants to admit there's a PD "personality" or any psychological similarities. Maybe not, but H was in everything she described, from wanting to control everything, negative thinking and utter distrust, right down to asking the PDer what did he do to escape the unbearable childhood situation (dissociation). Again, I didn't believe, but asked him and he shot back, "I told myself not to exist. If I didn't exist, it wouldn't hurt."

It is not a small adventure, and it's not for everyone. This is powerful stuff. It's all linked from pdrecovery dot org under the Publication tab. Dr. W-H is not getting any financial compensation and all of her documentation is provided freely. There's a tremendous amount of material.

Bottom line, we've been through all of the hardest part, are now dealing with what someone here mentioned, "partial recovery." Don't know how far we'll be able to take it, that will be up to H's reticence (stubbornness) to try the emotional brain/heart/body connection exercises.

He's not getting worse at this point, in fact so much better than June's withdrawal (well, duh), struggled, but used a spoon to feed himself this morning and walked 2.2 miles on his morning walk. I wish his family would just lay off for a month.

Nancy

Dear Ron,
 

It is a puzzle to me that even after 20 years of having PD, your brain is still capable to produce or compensate for dopamin, the proof for this is your ability to perform many essential tasks in the morning before taking medication.
Personally, I am in my seventh year after PD diagnosis, and like you, I perform one hour of hard exercise after getting up in the morning at 8 am, and take my first medication at about 11 am. This means that during the time between my last medication at 8pm and the first medication the nexst day at 11am is 15 hours. How can our bodies manage during this long period without sinemet? I wonder why this fact is not researched since inmho is contrary to the accepted theory that PD cause is the progressive inability of the brain to make dopamin. What do you think?

Quitting Sinemet
 

Hi iMark3000
I have just written you a long reply but when I go to my Internet Explorer then try to go back to my reply, it is gone!!!
I hjate Windows 7!!
Here goes again.
I do agree that if you can go for 15 hours without medication you must be generating at least low levels of your own dopamine. The half life of L-Dopa is only a couple of hours, so you can't store it for any time. It also settles the question are our neurons dead or just inactivated. They are presumably just deactivated, and can be renewed or activated. You conclude that the cause of PD is progressive deactivation of our ability to make dopamine. This is only partly correct, since the cause is whatever is causing our neurons to progressively dectivate. Or some other process that progressively deplete our dopamine stock.
This is compatible with the BBB theory. I believe that we Parkies are unlucky to be born with a more permeable BBB than healthy people. We know dopamine "can't pass the BBB while L-Dopa can. i think people should qualfy their statement to "dopamine can't pass the BBB below the threshold level of permeabiliy". Again, when people say only small molecules can pass the BBB,do they realise dopamine is a smaller molecule than L-dopa. It should be, dopamine is formed by splitting off a molecul;e of carbon dioxide from L-dopa. As we age, the BBB, like all other parts of our body deteriorate and becomes more permeable. We eventually reach the point where the permeability is at the threshold where dopamine can leak away into the bloodstream, and toxins can enter the brain in the opposite direction is finally reached.
This is the reason why PD is predominently an old person's disease.
They have had more time for the BBB to age and become more porous.
A lot of other symptoms can be explained by the BBB idea. It also gives the answer to the actual cause which iMark seeks, of what causes the progressive inability to keep dopamine continuosly above the threshold value, above which we have PD.
Ron

Hideously addictive is an understatement
 

I had to stop all anti-Parkinsonian meds quite quickly when I rather unexpectedly became pregnant. I had not been on Sinemet and Mirapex for very long; just a matter of months. I tapered off over 10 days or so.

Like your PWP, I had a period where I experienced tremor, a little slowness, no rigidity- basically where I was before meds but with ramped up tremor. The only real withdrawal symptom I experienced was an intense brain fog and a weird disequilibrium like someone was pushing my head forward....constantly.

After about 3-4 weeks, I noticed that I was having real difficulty getting up from a seated or reclining position and my limbs always felt ten times heavier than they were. I had to start holding onto walls or furniture to get up. Eventually, I had to move in with my mother. At night, I deteriorated so badly that I could not get in bed unassisted; I could not cover myself or move the entire night. I was essentially paralyzed from the neck down. Not stiff, but just like my brain did not recognize any (normally) movable body part. I could no longer dress on my own or barely hold a fork to eat. All drinks required a straw. Oddly, during the day I could move. To get up, I would have to roll myself over on all fours then once up, I could walk no problems.


After nearly 5 weeks of this horrifying state of accelerated deterioration ( I was pretty mild before this), I had a talk with my neuro who had embraced the pregnancy saying it would not worsen the PD. I was so scared that I almost did not make it full term. I am so happy now that I did! I am worse than I was before my son but still function most of the day.

Given my reaction, I felt I had to go back on Sinemet and safely took it from the second trimester on. I started having harsher wearing off, motor fluctuations, and dyskinesia when my neuro pushed the Mirapex again. Was your partner also taking and quitting an agonist at the same time or just Sinemet?

My doc said this was a rebound effect from stopping meds too soon. I am inclined to agree as I have gone 12 hours without any meds nearly two years after the pregnancy akinesia but could walk and function. When on meds, I am asymptomatic.

I think that people experiencing a period of wellness is just the beginning of withdrawal; the horrible decline we all describe that is delayed are the withdrawal itself. I have read that withdrawal from addictive drugs like cocaine result in a dopamine blockade. That is receptors are so over stimulated they sort of shut down and when one abruptly stops the drug, receptors are still closed off as if still buffering the excess. This over stimulation of the receptors is key to addiction; this is what drives our tolerance up leading to need for more and more of drug to get any effect. I believe that L-dopa is the same as Cocaine in this regard.

I tend to believe
 

that one should take minimum medication and deal with some symptoms through natural therapies such as meditation, exercise, healthy nutrition, music and by being positive and accepting some pain and discomfort as a "fair" price for being alive and happy.
I will always argue that being under medicated is better than over medicated because the later deny the brain from its natural possibility to repair and compensate and the symptoms associated with over medication is far more serious in the short and long term.
It is you and only you who can decide weather you are under medicated or over medicated !.
good luck to all of us, we need it badly.

Worth a "sticky" Chermar?
 

You know, the experience and musings of our little brain trust might have some real importance someday. This would be particularly true if one day a Big White Coat called a news conference at the NIH to tell us, "There is good news and bad news. The good news is that PD has been cured...."

A lot of folks are experimenting with naltrexone to good effect. Since naltrexone is used to ease opiate withdrawal, it is an obvious place to look. Another far les obvious one is kudzu, the infamous vine from Japan long used to break alcohol addiction.

It might be worth reading some of the work of William S. Burroughs about his first-hand experience with heroin withdrawal in the 1950's too. It has been many years since I read any of it but it was scarey enough to make this young college student decide that Timothy Leary and his LSD based (non-addicting) camp was a safer place to be.

I also wonder about the wisdom of the polypharmacy approach of handling each side effect with another drug. Last year I quit a 24 mg/day Requip habit in a week's time with no problems. But I substituted a similar level of ldopa. Does that tell me anything?

If I remember correctly, Ron Hutton has a pretty impressive record of reducing his own Ldopa way down but then hit a wall. Ron, if you could find time to share as much of the detail on that as possible, it might be very valuable in the future.

You know, I had, with a little sadness, begun to think of this little forum as beginning to fade away. Now I am not so sure.

My friend that was diagnosed with sinemet over 20 yrs ago and has been on sinemet most of that time has quit it ...after a ver slow weaning down over months doing liquid sinemet and gradually cutting back dose and frequency of doses. The main thing she feels is more clearity of mind. She is taking fava tops tincture (that we grow and make ourselves), and mucun pruiens capsules from Swansons Health Catalogue. We do occasionally make mucuna powder balls from bulk powder. She still needs 24 hr care as she has for several years, but feels better now and only has alittle less functioning ability

Thanks for writing this out. EXACTLY what H. experienced during the withdrawal. The "pushing head forward" was crazy. Gave him a terrible backache and when walking, would send him moving too fast.

I can see why it terrifies people and they go back on the Sinemet or other l-dopa. It passes. It's horrible, but it passes. He's now able to get himself in/out of chairs and car. Still has to roll on all fours to get up, but it works, stairs okay again. Pretty wild.

He was also taking Bromocriptine (agonist), but only for about a month, on some pharmacist's recommendation. I believe that one (an ergot derivative) caused his horrible w/drawal hot flashes. I'd be wearing a parka and he was crying for more AC.

I appreciated your thoughts on the "honeymoon" that seems to happen at first as the drugs are reduced. He saw this as a "golden time" and longs for the drugs when he thinks of how good things were in May. I've told him it was in SPITE of the drugs, not because of them, we'll see. They have a powerful hold, even 12 weeks later.

His family's pressure caused him to cave in a bit. He started taking LDN a few nights ago . . . disrupted his sleep. Who knows, maybe it will help him some.