February 4, 2015

My Depression, Parkinson's, and 5-HTP

I believe this "last year of my life" period will end up looking as crazy as your "selling Eskridge Terrace" period. 

That quote comes from a recent email from my pal David. He and I have exchanged emails almost every day for 20 years, so he's very familiar with my eccentricities.

He's referring to these two incidents:
  1. After I got my Parkinson’s diagnosis in the fall of 2009, I decided I needed to sell my house and move into a senior residence. Family and friends told me the notion was crazy, and it was. But I came damn close to doing it. I love the house, the garden, the Palisades neighborhood. And I love sharing the place with my treasured housemates. No retirement home could have provided the quality of life I've enjoyed by virtue of aging in place at my Eskridge Terrace home. 
  2. During the second half of 2014, I was overwhelmed by the roller coaster ride my blood pressure had created. The systolic (upper) number would spike over 200, and later the same day drop below 60. Those spikes raised the stroke threat; the dips – which made me dizzy and unsteady -- raised the risk of falling. I was monitoring my blood pressure constantly, because the twin irregularities required two completely different responses. The chaos reduced my social activities and brought my plans for future travels to a halt. I even decided that 2015 would likely be the last year of my life. Overreacting is normal for me. I've heard my nearest and dearest occasionally mutter "Drama Queen!” But this “last year of my life" business was a classic. Gloria Swanson, move over! 
The Connecting Link
David's linking these two events got me thinking: I had a mother who suffered from clinical depression most of her adult life, and a sister who committed suicide. As a consequence, I've always worked hard to convince myself I do not suffer from depression. I do not suffer from depression. I DO NOT SUFFER FROM DEPRESSION!

Several months after my PD diagnosis, my neurologist at the time recognized my denial and recommended an antidepressant. I was willing to concede I might need a little mood booster, but certainly nothing labeled “antidepressant.” God forbid.

Several years earlier, as I struggled through a bad spell caused by overusing Tylenol PM and Ambien, somebody recommended the serotonin and mood booster 5-HTP. It had helped then, and I suggested I give it another try. My neurologist said OK.

Like before, it worked. My memory of those days is pretty foggy, but 5-HTP may have helped me realize my situation wasn't so dire that I needed to move into a retirement home.

Crossing the Blood-Brain Barrier
As it turned out, 5-HTP actually helped prevent the three most common non-motor side effects of Parkinson's -- depression, insomnia and constipation.

I discovered -- and my research later confirmed -- that 5-HTP works differently for someone with Parkinson's. Most people who take 5-HTP (it's more commonly used in Europe than here) take 100-200mg two or three times a day. I found I needed to limit myself to the lowest available dose (50mg) and take it no more than twice a day.

When I exceeded those parameters, which I often did, I’d feel funny and woozy. I later determined that these reactions were caused by the elevated blood pressure brought on by too much 5-HTP.

In time, I figured out what was happening. Levodopa is the key medication for PD, since it works to replace the dopamine the disease depletes. To help levodopa cross from the blood into the brain – where it does its therapeutic work – it is combined with carbidopa. As it turns out, carbidopa does the same thing to 5-HTP, magnifying its effects.

This result wasn’t surprising. Dopamine and serotonin are similar neurotransmitters. Levodopa helps with dopamine; 5-HTP helps with serotonin. Carbidopa enhances the efficacy of both levodopa and 5-HTP.

5-HTP: How Low Could I Go?
And so – as my neurologist gradually increased my dosage of carbidopa-levodopa through the years -- I discovered I needed to correspondingly cut back on the 5-HTP. At first, I sliced the 50mg 5-HTP tablets in half… then into quarters.

Eventually, as the carbidopa-levodopa kept climbing, it became impossible to effectively adjust the 5-HTP dosages. As more and more complications developed, family and friends began urging me to simply ditch the 5-HTP. They thought it had become part of my problem.

In November, I stopped taking 5-HTP, and constipation returned with a vengeance. For the previous five years, 5-HTP had kept me constipation-free. I had forgotten how miserable I feel when I’m seriously, chronically constipated.

I see now that my blog posts became very gloomy during this time. Before long, I was even writing that "next year may my last." Hmmm, could I have been depressed?

The 5-HTP abstinence didn’t last long. I was simply too miserable. By mid-December -- and without my new doctor's OK -- I started taking it again.

I'll Do It My Way
When I met with the neurologist in early January, she wasn’t happy I’d resumed taking the supplement. She explained it was difficult for her to treat me when I was taking a substance she knew nothing about, particularly with my history of overdosing on mood-changing substances. Good point.

But I was adamant about continuing with 5-HTP. My own experience was clear as could be: I was miserable without it.

I'm approaching my 86th birthday. I just checked the Social Security Administration's life expectancy table. On average, people my age can expect to live another 5.9 years. I want the best possible quality of life through that time. While people with Parkinson's don't have a reduced life expectancy, we almost always spend the final few years seriously handicapped. So every month of quality life at this stage of my life is precious.

Thanks to my new medical team, the levodopa overdosing has ended. I now take 700mg of levodopa each day, compared to 2000mg not long ago. And since I’m back on 5-HTP, I feel better than I have in a long time.

I've resumed making plans for future fun.


Ken Blair said...

Hi John.
have followed your blog for some time with interest. Was particularly interested in your comments about staying at home with a carer rather than moving into a seniors community. As an architect I design both seniors communities and nursing homes, but agree that your solution is a much better one, if affordable. I have recently been modifying a home for clients to allow them to live there for the next twenty or thirty years.Ken Blair

Lisa Brown said...

It is a great piece of information dear but I think it is not the only reason that causes this problem and I am saying this because of famous people with parkinsons. Anyway I will refer this blog to my friend who is suffering of same problem.

Sabra Hoffmann said...

I am glad that the 5-HTP helped you a lot, and even had you shooting two birds with one stone, so to speak. Though it is imperative that the dosage must be regulated properly. That said, it is good that you are marching on and finding ways to deal with both your depression and your Parkinson's, in ways that is empowering and constructive. Cheers!

Sabra Hoffmann @ Stark Behavioral Health

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