Fifteen years ago I was diagnosed with Parkinson’s Disease (PD). Within a year I was taking the standard medication associated with the disease, dopamine in its various forms (levodopa/carbadopa, aka. Sinemet). Like most sufferers of PD, my need for Sinemet, grew and grew until I was taking 200 mg every hour and fifty minutes, and should I miss even a single dose, or take it a few minutes late, I generally felt miserable (we People with Parkinson’s call this state ‘off’).
I became very addicted to and dependent upon this medication, despite the dyskinesia the medication induced in me, as well as its many other side effects, including: lots of anxiety, the exasperation of my restless leg syndrome, the weakening of my voice, my intense sleepiness and lethargy etc. etc.
But over the last 3 years or so, I have managed to reduce my dosing by about half, as well as enjoy, at least once a week, a complete medication holiday. Here’s how I did it:
It started without any intention. After taking a whole day’s worth of medication, I’d wake up the next morning and bristle at the prospect of restarting the medication cycle yet again. It just felt like it took its toll on my body and mind, and the more doses I‘d take in a day, the more of a toll it took. So I started waiting an hour before taking my pills in the morning, thereby reducing my regimen by one-half dose. Instead of a 9 am start to my cycle, I’d take my first dose at 10:00 am. I really grew to enjoy this additional hour free of medication,
One thing I learned quickly: when I’d wake up in the morning after not having taken meds all night, that initial ‘off’ state had a very different quality to the ‘off’ state I got once I started my daily dosing regimen. The latter state was much more severe than the former. This was critical to my understanding how the addiction worked in my body. It It meant that once I started taking my meds on any given day, I had to keep taking them every hour and fifty minutes or suffer when I didn’t. My body needed, demanded its dopamine! On the other hand, I could hang with my wake-up, un-medicated ‘off’ state for hours in reasonable comfort, if not with physical agility. Once I figured this out, I was on my way toward lower and later dosing.
I came to refer to my un-medicated time period as the “pre-medicated” part of my day. I wrote many poems and stories in this pre-medicated state. (Indeed, my upcoming poetry book is titled “Pre-Medicated Poems,” after the process of writing them in my pre-medicated state.) I enjoyed my state so much, that I then extended it to 11 am, thereby reducing my regimen by one whole dose. I began to really notice things that the medication was doing to me: like as soon as my meds kicked in I’d start yawning intensely, and I’d get very sleepy, this no matter how good (or not so good) of a night’s sleep I‘d had. I became a serial napper. I’d get up from one nap only to fall into another nap 10 minutes later. I found myself whiling days away in bed. Mind you, I like a good nap, but this was ridiculous.
I also noticed my voice was stronger un-medicated than medicated. This proved to be a very motivating factor in my continuing effort to be a performing poet. I took a risk one day, and remained un-medicated for an entire day and evening to see if my voice would hold up better un-medicated for a reading that night. It did. I did an entire reading un-medicated. This was an exciting discovery because it meant I could continue readings as my voice had so much more depth and breath than it did when I was medicated. The medication seemed to squeeze my voice down into a very flat and unexpressive tone. The medication also upset my diction and the cadence of my words. Huge blows to my poetry-reading life.
Once I realized that I could survive, and even thrive by missing a whole day’s cycle of medication, I began to take medication holidays regularly, sometimes to do readings, and other times just because I could and it felt good. My head was clearer, my overall demeanor and mindset were better. Meanwhile, I started taking my first dose later and later. These days, a couple (or 3) years into my experiment, I don't often begin my medication cycle until 3 or 4:00 pm, reducing my number of doses by three or even four.
For the sake of full discloser, I do have to acknowledge that 5 years ago, at least a couple of years before I began cutting back on Sinemet, I had deep brain stimulation surgery in my right brain only. This resulted in rejuvenating my left hand and arm, ending the bradykinesia and tremors that had plagued those appendages for years. I did not have the second (left) side done because, as a side-effect of the surgery, I was left with the severe restless leg syndrome I suffer from still today. Effectively, I traded an arm for a leg. I didn’t follow through on the second side surgery because of the possibility of undermining my right leg also, perhaps leaving me wheelchair-bound.
I’m lucky that I am able to carry on un-medicated better than most (and I have no doubt the DBS running in my right brain and keeping my left arm in check contributes to my ability to do this.). I do have, however, two main symptoms that are made worse by my pre-medicated state: My neck locks up and the tremor in my right hand can be a major problem. But the clarity and peace of mind I get from being un-medicated are still a bargain I’d take. Plus, relief from these symptoms is only two pills away. When my neck locks up, I’m not hesitant to begin my dosing and get relief, effectively trading some symptom relief for other symptoms’ expression. You don't ever really win at the game of Parkinson’s, but you can sometimes battle it to a draw.
I still drive un-medicated, though slowly and carefully and only within my neighborhood. I take yoga classes while un-medicated (my restless leg is far less restless during class, and thus more stable). I ride my trike un-medicated and take exercise class un-medicated. I do my grocery shopping un-medicated, and pretty much anything I do medicated, I can do un-medicated.
I recently told my neurologist about my little “experiment,” and he said as long as its not causing me to fall, or otherwise hurting myself, that he would say its okay; that if I want to take meds only when I need them, he was okay with my choice. It has not led me to any major falls or otherwise hurting myself. I consider that an endorsement of my process.
I believe, in my body, at least, that after years of usage, the medications makes many things worse. Plus the dependency on the meds compounds the problem, creating and intensifying the ‘off’ state. We become, as my friend Maré calls us, “Dopamine addicts.” I believe other folks with PD may do better with less doses in a day, as well. But everyone is different, and every case of PD is different. I just offer my experience to anyone who might find it useful or interesting, or might be experiencing problems with their meds similar to what I was experiencing. I know this: its not an option your neurologist will propose. My only caution is: if you’re interested in exploring un-medicating yourself, explore it slowly and carefully. Little baby steps are best. Wean yourself very slowly, over the course of a few years.
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GaryTorch
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Wow. I am amazed by this writing and your experience. I am a poet and singer. My voice is very important to me. I'm glad to know the important truths you are sharing here.
I recently responded to another post about stopping c/l and explained that after four months on c/l, I weaned myself off and took no meds (or mucuna) for almost a year. During that time I was quite debilitated, unable to walk unaided, unable to dress myself or even brush my teeth. One of the things that I did get from that time was the knowledge of what it is like (for me) to be completely unmediated which allows me to know how to function during my off times which I experience daily by design. I generally take my first 10/100 c/l around 10 am and I take my last 10/100 dose around 4:30pm. I am able to make dinner, eat it and then I am off for the night. This morning I was up at 6am to go for a blood draw (my husband drove - I no longer drive when I am off). I took my first pill at 10:30am. I am non-tremor dominant so I am slow but functional in my off phase. However, my voice when I am off is very slow and monotone. I do not talk to anyone but close family when I am off. I wish my voice was stronger when I am off. C/l does not make me sleepy. For me, it's more like speed. I generally take between 350 to 450 mg daily and I'm 10 years in. I ride an exercise bike every other day for 30 minutes at 90-100 rpm when I am on and I do a series of strength training/yoga/Pilates and stretching at night when I am off.
PD is a remarkably idiosyncratic disease. What works for one person, doesn't often translate to another. I'd stay on the L/C if I were you, too. Fact is, I'd probably take more of it than you are, based on the amount of off time you have. Good luck, be well...
90 to 100 RPMs is really good. Have you tried a less strenuous ride on alternate days? Do you notice a difference in how you feel on the days you ride?
@juliegrace Theoretically,Would have thought there’s a difference on days you don’t ride. Your 90-100 rpm great ; I can’t seem to hold 90 or above-Yet. Congrats on your routine - As for me, I’ve got to include cardio every single day “or else”...
Been serious cycling 35 years. Mostly 4 hours, steep ascents. Always shot for 90 -92 cadence on flats. Hills well no. Now bout 80-85. Now can do about an hour or 2 steep ascents mostly hills not flats. After an hour or 2 just way too shaky. Usually the next day regardless of intensity, which varies, it appears I experience less tremor and I’m tremor dominate. More intensity better I am next day. Also just usually a better day! I’ve noticed this over past year. Not totally consistent as obviously other factors come in to play. Not sure at all but tend to believe my cycling over the years has greatly helped me and think at least partially responsible why my symptoms are rather mild over past few years and at this time. I think bottom line is... intensity is great if and when can do, if not any exercise will help.
At 90-100 rpm doesn’t really matter. That’s fast. Goal is, keep good form and not move your butt at that tempo. Usually lower gears required to keep that cadence. For me now, my heart rate is most important- I’m 71 and normally, hills get me 145-155 for an extended period of time. On stationary even fast rpms hard for me to get that high. Wear a monitor recommended.
Marc you can. In order to do high cadence it has been my experience that 1. Seat height as well as placement is first priority. 2. Like anything else it takes practice. For me, and those who taught me, one needs to push on one side and pull on the other, simultaneously. like your on the outside of a circle so it’s not up and down but an even motion. Once mastered its very economical and for me enjoyable and greatly beneficial. You should not move your butt. If you do you are probably not seated correctly and/or didn’t practicing building up to it. Start at 70 and go from there. Surprising how you can improve your cadence utilizing correct geometry and stroke, ultimately raising you heart rate (if that’s your goal, is mine) without physically beating yourself up with discomfort. Been doing this for 1/2 my life and still love it. Hoping I can still do in future years.
The “yawning symptom” is very interesting because that happens to me although I’ve never taken Sinement, but do take Mucuna. I wasn’t sure what that was all about. Anyway I’m going to to your dosing down experiment with Mucuna .
Thanks Gary, very enlightening and helpful. I had noticed the same thing about the off and ldopa periods .The fact is that in the long run the body forgets how to make ldopa. I had abandoned the idea of reducing it this way but I'll try again. I also use B1 and try the grapefruit juice under test.
My phone is not working well and all my replies have been erased after I spend a lot of time writing them , so I will try to keep this short and be able to communicate with you. I think I was misdiagnosed with Parkinson’s and given sinemet when I became paralyzed from an exposure to mold. I actually have CIRS / CHRONIC INFLAMMATORY RESPONSE SYNDROME - a severe response to mold that literally paralyzed me. But now I am so addicted to sinemet and I am having a hard time getting off of it . The sinemet is killing me it gives me horrible symptoms - but I can’t stop taking it because my body is addicted to it :! I have managed to get off of it from 12:00 midnight to 7 or 8 am. When I wake up at 7 or 8?am I have little to no symptoms/ I can talk walk and read! I feel more “normal” and I’m not shaking, quaking burning or wanting to die / but I get terrible fears about not taking the medicine because I have dystonia in my feet. Itvud so bad I can’t I walk. If I don’t take the pills the dystonia gets unbearable. So I take the poison oops the sinemet and my life of hell begins again.i shake and quake and my legs hurt and I’m weak and drpressd and I just want To Die. The meds wear off in less than 2 hours and I take more pills. I have trouble with the generic it makes everything worse. I was told that if I stop the drug all together /quickly I will go into s comma and die. But I feel bad and I am dying from this sinemet! I don’t have 3 years to give to coming off the deadly drug - sinemet. I want off now. Today. I know that Parkinson’s is a syndrome that can be healed! Take a little look at Howard Shifke and his book on Amazon.he is healed. Read A MORE EXCELLENT WAY by dr Henry Wright and read AUTISM HEALED by Deborah McDermott.
But my question is how do I get off this poison sinemet quickly and please be specific how do I do it step by step and live? How do I control or stop the dystonia?
I guess you have no need of the books you mention as you do not have PD. Not sure why you are posting in a Parkinson’s Forum if you do not have PD. You would be better off finding a forum that deals with addictions.
I think it's good for people who were misdiagnosed with Parkinson's to post on a Parkinson's forum!! Other people might be misdiagnosed, too, and it's good for us to learn!!
I appreciate your sense of urgency. It sounds like a very troubling situation.
However, I would strongly recommend (for several reasons) a GRADUAL, programmatic reduction of Sinemet.
I would also recommend looking into relaxation meditations.
I want to point out that you are with similar anxiety to two situations:
1) when the Sinemet wears off, you are very afraid, and so you take more. The reality is that you could prolong the time between dosages somewhat, and still be okay. It may feel uncomfortable, but you will survive. You are okay.
2) you want to come off of Sinemet quickly, and you feel urgent about that. This is understandable, but some of what the fear is saying isn't real. You can reduce the dosage gradually, and you can do so successfully. You are okay.
Relaxation meditation could help you deal with your anxiety, and reduce it somewhat. That in turn would help you suffer less and be more effective.
It isn't perfect, anxiety will still be there, but you will be better able to deal with it.
When I called sinemet poison a couple of members got all over me.I have to agree with you though. It plays havoc with my stomach and sometimes the nausea is sooo bad. I only take 25-100 twice a day, I seem to be able to tolerate that. Good luck!
I refer you to a free online book called "Once Upon a Pill", written by someone who has helped many PWP reduce and even completely stop their L-dopa: pdrecovery.org/wp-content/u...
It's a long book, but you should study it and of course talk with your doctor before reducing. Her claims of recovery from PD are controversial, but I suppose since you don't have PD that won't matter to you. There are some disturbing stories in the book and you should understand what could go wrong before you begin.
The same thing happened to me! I was diagnosed with YOPD six years ago, but then 2 years ago a dr. who specializes in Functional Medicine diagnosed mold toxicity CIRS. My C4 was the highest he's ever seen! Since diagnosis, I've been slowing detoxing from mold exposure (it was in my house) and trying to get off of PD meds (C/L, amantadine, and mucuna. I'm down to 1 c/l a day and 2 amantadine. I also take mucuna puriens. Without mucuna, I could not have reduced c/l. What helps me most (to feel better and take less medicine) is eating a super clean diet and doing the occasional fast... and execise, of course.
PD varies so much from person to person. I don't know if I have PD or if CIRS just mimics it.
Thank you so much for your story! How much c/l did I you take ? How long did it take you to get off of the c/l? How did you do the actual reduction? What kind of macula do you take? And how much? I would appreciate any info you can share with me. How are you detoxing? What are you using?
PD is a syndrome - so symptoms will vary from person to person. My immunologist found out about mold and tested everyone of her chronic fatigue patients and she said over 80% had mold! My own guess is that s lot of Pd people are CIRS PEOPLE! That was my doctors guess too!
when I take c/l I still take 200mg every two hours. But I don't take it till 2 or 3 or 4pm, meaning I take about 3 doses every day that I take it. Once or twice a week I don't take any. I have been weaning myself for years, very slowly. I do not take Macuna at all. I stopped detoxing years ago (seems like an expensive waste of my time now), but I took glutathione infusions for 4 years.
Wow, thanks for explaining your dosing strategy. I knew that reduction is possible but I didn't know that taking - or not taking - meds as you decribe could be so flexible! I am curious; have you noticed a progression in your PD symptoms since you began doing this?
>i shake and quake and my legs hurt and I’m weak and drpressd and I just want To Die. >The meds wear off in less than 2 hour
Your problem is you are taking an immediate release version. You are initially overdosed and suffering from dyskinesia. Then your blood level fades very quickly and you are under dosed. You need to take Sinemet CR or the generic equivalent, carbidopa levodopa ER, or Rytary. These versions will give you much more even release of levodopa - you will not be overdosed initially and it will last longer.
Not much. The question is how much you should take. To switch over smoothly you could try taking half your existing dosage in a time-release form. If that improves things then try switching over completely.
Very inspiring!! Do you have dyskinesia or dystonia? Has that been better as well ? Thank you!! It’s a terrible disease and it seems you’ve taken control over it and it hasn’t conquered you! Well done 👍
Wow. Thank you for putting into words what I have not. I'm 12 years in, and I have experienced EVERYTHING that you described. I'm scheduled for DBS in October. I LOVED reading this, because it's really the first time in my "Parkinson's life" that someone else could relate to me. Thank you for posting!
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