January 16, 2015

My 5-HTP / Levodopa Marriage Survives Very Turbulent Times

That's Me Without 5-HTP
Today's post brings the final installment in my five-part series on the happy start to 2015.

It's all about the over-the counter supplement 5-HTP... a fitting way to wrap up. I started this blog over five years ago, certain I had discovered the cure for the most common non-motor side effects of Parkinson's. I was the new Dr. Oz!

A brief primer: With Parkinson's disease (PD), brain cells that produce the neurotransmitter dopamine die off. The gold standard treatment for the disease is levodopa, a synthetic substance that is converted in the brain to dopamine. Levodopa typically is combined with carbidoba to minimize nausea and help move the levodopa into the brain before the body metabolizes it. 

Dopamine regulates movement (also behavior and emotion). Serotonin, another neurotransmitter, helps regulate mood, appetite, sleep, and memory. It, too, is affected by Parkinson's, but this interplay has been largely neglected in research and treatment until recently.

Just as levodopa helps boost dopamine, 5-HTP boosts serotonin levels in the brain.

Serotonin, 5-HTP, and Me
When I was belatedly diagnosed with Parkinson's in the fall of 2009, I knew next to nothing about dopamine, serotonin, or neurotransmitters in general.

When I had experienced mood and sleep problems a few years earlier, I'd used 5-HTP, and it helped. So, when the neurologist who diagnosed my PD suggested an anti-depressant. I asked if I could try 5-TP instead. He agreed,  Later, when I showed no signs of the common non-motor sidc effects of Parkinson's, he soon began recommending 5-HTP to his other newly diagnosed patients.

When I tried 5-HTP after the PD diagnosis, I had to cut way back on the dosage I'd used before. The typical recommendation for treating depression is 200-300mg a day. After lots of experimenting, I found that a 50mg pill -- the smallest available dose -- did the trick.

I learned later that carbidopa -- the stuff that enhances the bioavailability of levodopa -- has the same effect on 5-HTP. I've seen estimates that even suggest carbidopa boosts 5-HTP's punch by a factor of eight.

And so, as my prescribed dosages for carbidopa-levodopa increased through these last five years, my 5-HTP needed to be reduced. First, I cut the 5-HTP pills in half, then in quarters.

But last year when my carbidopa-levodopa prescription took a big jump, it became nearly impossible to properly adjust down the 5-HTP dosage.

Other Voices, Other Rooms
There was another problem with 5-HTP, one I created. Since I've always believed anything worth doing is worth overdoing, I began upping the doses so every now and then, so that mellowness became mania... mania with accompanying sharp blood pressure increases. Several times, this 5-HTP overdosing resulted in my calling 911 and ending up in the local hospital's emergency room.

Not surprisingly, I began hearing a growing chorus from family and friends urging me to abandon the supplement. Late last October during our first appointment, my neurologist and I talked about 5-HTP. She said it would be difficult to treat me if I regularly took a substance she knew nothing about... and in doses I was forever changing. She strongly urged me to stop taking 5-HTP.

She set up several tests for me and scheduled our next appointment for December 16. By then, she hoped, the 5-HTP would be out of my system.

With her powerful voice joining my growing "dump-5-HTP" choir, I gave in and stopped taking the supplement. Except for two slips in the first week, I remained "clean and sober" for over a month.

But then, constipation -- not a problem in over five years -- came back big time. Then depression. I started having more frequent sleep disruptions. But I toughed it out with the abstinence, all the while preparing my argument for our December 16 session: Quality of life was much more important to me than length of life, and 5-HTP definitely enhanced my quality of life.

On December 16, I got a phone call informing me that my doctor had called in sick and I was being rescheduled for early January. My immediate reaction was, "Screw this! I'm not going through the holidays feeling this shitty."

And so... I made an executive decision: Resume the 5-HTP.My experience with abstinence proved to me what I always thought -- that 5-HTP kept me free from PD's three most common non-motor side effects: depression, insomnia, and constipation.

Last week when we met again, I recounted this story to my neurologist. She was not happy I had resumed the 5-HTP. She was even more unhappy with my resistance to resuming blood pressure medication.

After some back and forth, I finally said, "Tell you what, I'll take the blood pressure pills, but I'll stay on 5-HTP." She smiled (a bit) and we shook hands on it.

Bottom line on 5-HTP: I've been too facetious in this narrative. Taking supplements or medications without a doctor's approval is not advisable. In this case, my doctor let the 5-HTP issue slide... for now.

I'm always searching for information on 5-HTP, serotonin, and Parkinson's. There isn't much, compared to all the attention on levodopa, dopamine, and Parkinson's. I learned about a current clinical trial involving 5-HTP (and other subtances) with a group of Parkinsonians, but I have some reservations about the quality of that study.

I have never found anybody with PD who's had the same positive 5-HTP experience I have. Yes, it has required a constant fine-tuning of the dosage: enough to be effective, but not so much that the resulting blood pressure spikes send me to the hospital. In addition, the effect of carbidopa on 5-HTP -- magnifying the supplement's impact on the brain -- adds to the challenge of getting the dosage just right.

Yes, there are lots of reasons to be wary of this -- or any -- supplement. But for me, the significant positive effects of 5-HTP far outweigh the concerns.

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