July 26, 2012

5-HTP and Me: Two Important Lessons Learned

We -- 5-HTP and me -- have had a fairly long relationship (longer than most of my relationships). As with all my relationships, I've learned some important lessons.

What Is 5-HTP?
It's basically a serotonin booster. Serotonin is one of the neurotransmitters that light up the brain. It is allied with another neurotransmitter, dopamine. Parkinson's results from the depletion of dopamine-generating cells in the brain.

Dopamine regulates muscle movement, motivation and reward-seeking, sociability, and pain processing. Serotonin primarily affects mood, impulsiveness, appetite, intestinal motility, sex drive, and the sleep/wake cycle.

My History with 5-HTP -- The Magical Pill
When I was diagnosed with Parkinson's in the fall of 2009, I was also dealing with the depression and insomnia that often accompany Parkinson's. My neurologist at the time prescribed the old-line anti-depressant Elavil. It worked OK except that I gained five pounds in a couple months and felt groggy in the morning.

When I switched to my current neurologist, he expressed concern about Elavil's possible adverse effect on cognition. Given my fears of dementia and Alzheimer's, I decided to drop Elavil and try 5-HTP, which I had found helpful in an earlier bout of insomnia.

Well! It worked splendidly. My sleep and mood were fine. I dropped ten pounds. Constipation no longer troubled me. I thought I had found the "magic bullet" for many of the side effects associated with Parkinson's.

I also Googled 5-HTP to see if there were safety concerns. Some reputable sites, like Mayo and WebMD, reported some issues about taking 5-HTP, particularly for people already using carbidopa. Since carbidopa/levodopa is the "gold standard" prescription for Parkinson's, I was concerned.

I soon realized that virtually every time I saw this caution on a website, identical language was used:
A scleroderma-like skin condition has been reported in some taking a combination of 5-HTP and carbidopa.
Initially, I thought this oft-cited reservation about 5-HTP came from various studies. But the identical language made me wonder if everybody was just repeating a finding from one particular study, which further research verified. The common source was a 1980 French study involving 15 people. This small, dated study had generated a web-full of warnings.

Meanwhile, Europeans have been using 5-HTP much more than Americans, even recommending that it be taken with carbidopa to delay 5-HTP's conversion to serotonin before it reached the brain. See http://bit.ly/SUSbao. No side effects have been reported.

5-HTP -- Not 100% Magical and Not Universally Beneficial
I was so taken with my initial 5-HTP experience that I launched this blog so everyone with Parkinson's could join with me in happy 5-HTP land. The initial blog title was "5-HTP and Parkinson's and Me."

I was also touting 5-HTP to family members, friends, and fellow Parkinsonians. Several of them tried 5-HTP. No one had the positive results I'd experienced. I searched the web looking for reports from others who had results similar to mine. I found little support.

Meanwhile, my lifelong belief in Mae West's maxim that "anything worth doing is worth overdoing" kicked in and I began upping my intake of 5-HTP from the minimal 50mg once a day to 100mg at bedtime and often again during the day.

At first this seemed to be working great! I would often experience a euphoric state during my middle-of-the-night meditation. I'd have these regular blasts of creative inspiration that helped me resolve problems. I also found myself smiling and laughing much more often during the day. What's not to love about that?

A normal person might well find this strange, and conclude that maybe I was overdosing on the 5-HTP. But I kept going, blissfully ignoring the warning signs until I ended up nearly passing out, calling 911, and going to the emergency room when my blood pressure spiked to 200+. I wondered if this emergency was related to my 5-HTP euphoria. At first I was unwilling to stop the 5-HTP pleasure ride, but a second, similar ER incident convinced me I had to give up my "magic pill."

Sure enough, the blood pressure spikes subsided. But sleep and mood disturbances began to surface. I experimented with taking the smallest dose of 5-HTP available -- 50mg -- then splitting the pill in half, taking it at bedtime. I also used a home blood pressure monitor to watch my numbers carefully.

This new regimen has been working just fine. Sleep and mood are good. No constipation. I miss the euphoria and brilliant inspirations, but I'm not going to the emergency room after fainting spells caused by high blood pressure.

Two Lessons Learned
  1. What works for me may not work for others.  Parkinson's disease is very idiosyncratic, and no two people experience identical symptoms or identical progress down the Parkinson's road. As I've observed before, I have two diseases: Parkinson's disease and John Schappi's disease. The same is true of my response to medications and other therapeutic treatments. "Different strokes for different folks." I need to remember this maxim when I see reports of miraculous results from taking coconut oil or using some other new, exotic treatment. 
  2. Whenever I start a new pill or try a new treatment, I need to conduct research on reputable websites. More importantly, I must carefully, continually monitor my body's reactions.


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