The Drugs I Take for Parkinson's, a Failed Experiment
The Drugs I Take for Parkinson's, a Failed Experiment: Was It a Drug-Induced Destructive Compulsion?
A few weeks ago a very well-meaning friend who is also a Yoga instructor made the well-intentioned suggestion that because I've been on 'so many drugs for so long' that maybe everything would get better if I were to 'trust' my body and let go of my 'dependence on medication.' I respected her enough, not so much to agree, but enough to become very curious as to what exactly my body and mind would feel like if I were off medications. The fact is that I have been taking just over half a dozen different prescription medications on a continuous schedule for about the last 4 years. The regimen has not changed much during that time.
Summary of Medications:
A. Core meds
1. Mirapex(pramipexole): anti-parkinson agent, simulates dopamine
2. Amantidine: anti-viral with anti-parkinson properties, possibly simulates dopamine or enhance its release.
3. Klonipin (clonazepam): enhances brain and muscle relaxation, gets rid of muscle rigidity
B. Meds that theoretically prevent disease progression
1. Azilect(rasagiline)
2. isradipine
C. Meds that prevent side effects:
1. Adderall(amphetamine salts): prevents sleepiness for driving
2. Seroquel: promotes sleep
3. Cabergoline and Viagra: prevent sexual side effects
I decided to conduct a two-week experiment on myself. The first week I would go on with life as usual but would start tapering off the ones that couldn't be just stopped cold turkey like clonazepam. The following week I would spend indoors with a friend who would keep a close eye on me. I really wanted to know whether I was taking so much medication to the point of it being a psychological crutch or a dependency, as my Yoga instructor friend had suggested or did I really need it. Did my body really require all that medication to function each day? I certainly had my share of daytime sleepiness to deal with. If I could just have a vacation from that I'd be grateful.
The results? Well all I can say is, "Do not try this at home." I was totally unable to function. Here's at least a partial list of a disabling, I daresay life-threatening deterioration in my Parkinson's symptoms:
Without drugs:
1. Shaking/tremor which was limited to occasionally the rt hand and arm was now on both sides but very bad from right hand up rt. arm to neck.
2. Already unable to write legibly, I now could not even grip a pencil. My fingers would alternate between shaking and freezing up and being immobile.
3. I walked with a limp and could not keep my right foot from dragging on the floor about every third step.
4. Every half hour I had to use the bathroom. Parkinson's affects the autonomic nervous system as well. It is not just a movement disorder. The nerves to my bladder were over-reacting even to small volumes of urine.
5. If I remained seated or lying down for any length of time I could not stand up without feeling faint and starting to black out. This is because the dysfunctional autonomic system cannot tighten the blood vessels during position changes, needed to maintain blood pressure and blood flow to my head. This occasionally resulted in severe dizziness and nausea.
6. My eye muscles became unstable and I could not gaze at any one person or object for more than a few moments without it becoming blurred and shaky.
7. I found myself choking easily on clear liquids like apple juice and water.
8. I lost any urge to do anything. I was very happy laying in bed all day playing online poker which I found myself consistently losing because I was not completely thinking through the decisions I was making. Whereas depression is a painful sadness, this was more like a light coma. I just didn't care about much. Dopamine is what creates the sense of excitement we have when we encounter a new experience. It is also the brain chemical that gives us motivation to initiate movement. I was neither excited by anything nor had any urge to get up and do anything. After 2 days I forced myself to brush my teeth, shave, shower and change my clothes. I am normally a person who is good, possibly obsessive about hygiene.
9. I was sleeping only about an hour each night and taking cat naps about every 2 hours, all with horrible dreams. Dopamine is a key component in regulating sleep cycles.
10. I lost most of my sense of smell and thus food had no taste. I found myself only wanting things that were either very sweet or very salty: Pizza, burgers, cookies and ice cream.
11. I usually read a great deal. Now I had no patience for what had become completely boring so I tried watching TV. I found myself unable to stick with any show or movie to the end without falling asleep. I didn't care what happened to the characters.
On about the fourth day I was laying in bed feeling rather thirsty but too unmotivated to get up and pour a glass. After maybe two hours I started sweating profusely and had severe cotton-mouth. I was clearly becoming dehydrated. I arose to take a drink of water and as I stood up I started to feel very hot. My vision went brown and I found myself on the floor. My friend had gone out. Every time I tried to get up the brown would start again. I crawled to the shower and briefly reached up to turn on the cold water. I lay there for like 30 minutes on my back drinking the water and letting it cool me. I was shaking uncontrollably from a combination of the tremor and the cold water. I finally was able to get up. I took my AM dose of medications even though it was about 6PM. I fell into a happy and peaceful sleep for the next 4 hours. When I woke up I took another dose of meds and slept the rest of the night. The next morning I had felt raised from the dead. My movie expanded from dull black and white on a small screen to 3d color with surround sound. I had the urge to eat, to shower. Instant coffee never smelled so good. The experiment was terminated.
My neurologist suggested that my haphazard behavior could have been a manifestation of "dopamine dysregulation syndrome," a side effect of Mirapex, known to cause destructive compulsive behaviors like gambling, sexual irresponsibility, excessive spending and poorly planned decisions. The result was to change the dosing schedule of Mirapex so that I would be taking the entire daily dose before noon, giving it time to leave my system in the evening. Since then I have not had any other new and irresponsible impulses. In fact what we both recognized as compulsive night-time overeating also ceased with the change in dosing schedule.
In another article I shall discuss my current medication regimen for Parkinson's in more detail.
A few weeks ago a very well-meaning friend who is also a Yoga instructor made the well-intentioned suggestion that because I've been on 'so many drugs for so long' that maybe everything would get better if I were to 'trust' my body and let go of my 'dependence on medication.' I respected her enough, not so much to agree, but enough to become very curious as to what exactly my body and mind would feel like if I were off medications. The fact is that I have been taking just over half a dozen different prescription medications on a continuous schedule for about the last 4 years. The regimen has not changed much during that time.
Summary of Medications:
A. Core meds
1. Mirapex(pramipexole): anti-parkinson agent, simulates dopamine
2. Amantidine: anti-viral with anti-parkinson properties, possibly simulates dopamine or enhance its release.
3. Klonipin (clonazepam): enhances brain and muscle relaxation, gets rid of muscle rigidity
B. Meds that theoretically prevent disease progression
1. Azilect(rasagiline)
2. isradipine
C. Meds that prevent side effects:
1. Adderall(amphetamine salts): prevents sleepiness for driving
2. Seroquel: promotes sleep
3. Cabergoline and Viagra: prevent sexual side effects
I decided to conduct a two-week experiment on myself. The first week I would go on with life as usual but would start tapering off the ones that couldn't be just stopped cold turkey like clonazepam. The following week I would spend indoors with a friend who would keep a close eye on me. I really wanted to know whether I was taking so much medication to the point of it being a psychological crutch or a dependency, as my Yoga instructor friend had suggested or did I really need it. Did my body really require all that medication to function each day? I certainly had my share of daytime sleepiness to deal with. If I could just have a vacation from that I'd be grateful.
The results? Well all I can say is, "Do not try this at home." I was totally unable to function. Here's at least a partial list of a disabling, I daresay life-threatening deterioration in my Parkinson's symptoms:
Without drugs:
1. Shaking/tremor which was limited to occasionally the rt hand and arm was now on both sides but very bad from right hand up rt. arm to neck.
2. Already unable to write legibly, I now could not even grip a pencil. My fingers would alternate between shaking and freezing up and being immobile.
3. I walked with a limp and could not keep my right foot from dragging on the floor about every third step.
4. Every half hour I had to use the bathroom. Parkinson's affects the autonomic nervous system as well. It is not just a movement disorder. The nerves to my bladder were over-reacting even to small volumes of urine.
5. If I remained seated or lying down for any length of time I could not stand up without feeling faint and starting to black out. This is because the dysfunctional autonomic system cannot tighten the blood vessels during position changes, needed to maintain blood pressure and blood flow to my head. This occasionally resulted in severe dizziness and nausea.
6. My eye muscles became unstable and I could not gaze at any one person or object for more than a few moments without it becoming blurred and shaky.
7. I found myself choking easily on clear liquids like apple juice and water.
8. I lost any urge to do anything. I was very happy laying in bed all day playing online poker which I found myself consistently losing because I was not completely thinking through the decisions I was making. Whereas depression is a painful sadness, this was more like a light coma. I just didn't care about much. Dopamine is what creates the sense of excitement we have when we encounter a new experience. It is also the brain chemical that gives us motivation to initiate movement. I was neither excited by anything nor had any urge to get up and do anything. After 2 days I forced myself to brush my teeth, shave, shower and change my clothes. I am normally a person who is good, possibly obsessive about hygiene.
9. I was sleeping only about an hour each night and taking cat naps about every 2 hours, all with horrible dreams. Dopamine is a key component in regulating sleep cycles.
10. I lost most of my sense of smell and thus food had no taste. I found myself only wanting things that were either very sweet or very salty: Pizza, burgers, cookies and ice cream.
11. I usually read a great deal. Now I had no patience for what had become completely boring so I tried watching TV. I found myself unable to stick with any show or movie to the end without falling asleep. I didn't care what happened to the characters.
On about the fourth day I was laying in bed feeling rather thirsty but too unmotivated to get up and pour a glass. After maybe two hours I started sweating profusely and had severe cotton-mouth. I was clearly becoming dehydrated. I arose to take a drink of water and as I stood up I started to feel very hot. My vision went brown and I found myself on the floor. My friend had gone out. Every time I tried to get up the brown would start again. I crawled to the shower and briefly reached up to turn on the cold water. I lay there for like 30 minutes on my back drinking the water and letting it cool me. I was shaking uncontrollably from a combination of the tremor and the cold water. I finally was able to get up. I took my AM dose of medications even though it was about 6PM. I fell into a happy and peaceful sleep for the next 4 hours. When I woke up I took another dose of meds and slept the rest of the night. The next morning I had felt raised from the dead. My movie expanded from dull black and white on a small screen to 3d color with surround sound. I had the urge to eat, to shower. Instant coffee never smelled so good. The experiment was terminated.
My neurologist suggested that my haphazard behavior could have been a manifestation of "dopamine dysregulation syndrome," a side effect of Mirapex, known to cause destructive compulsive behaviors like gambling, sexual irresponsibility, excessive spending and poorly planned decisions. The result was to change the dosing schedule of Mirapex so that I would be taking the entire daily dose before noon, giving it time to leave my system in the evening. Since then I have not had any other new and irresponsible impulses. In fact what we both recognized as compulsive night-time overeating also ceased with the change in dosing schedule.
In another article I shall discuss my current medication regimen for Parkinson's in more detail.
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