June 17, 2014

Changes in My Meds Appear To Be Paying Off

I've been tinkering with the three meds shown above... tweaks I'm sure are contributing to my enhanced sense of well-being these days. 

A caution: Remember, I don't have Parkinson's disease. I have John Schappi's disease. Parkinson's is a very idiosyncratic disease. What works for me may not work for you. 

Carbidopa-Levodopa and 5-HTP
Let's look at these two together, since it's their interaction we're interested in. First, some basics:
  • Parkinson's disease destroys the neurons in the brain that produce the chemical messenger dopamine, which helps regulate movement and emotion.
  • Carbidopa-levodopa is the most effective PD medication. Levodopa is a natural chemical that passes into the brain and is converted to dopamine. Carbidopa is combined with levodopa to help it cross the blood/brain barrier and get into our systems. 
  • 5-HTP (5-Hydroxytryptophan) works in the brain and central nervous system to increase the synthesis of serotonin. It's used to treat several diseases and conditions where serotonin is believed to play an important role -- including depression, insomnia, and obesity.  
Common side effects of Parkinson's are depression, insomnia, and constipation. I was dealing with all three when I was diagnosed with Parkinson's five years ago. I had previous experience using 5-HTP to deal with insomnia, so I suggested to my neurologist that I try it again. He agreed.

It worked so well that I started this blog hoping to lead a parade of people with Parkinson's to 5-HTP bliss. But when I looked behind, nobody was marching with me. I dropped 5-HTP from the title of the blog and adopted the broader focus it has today. But I continued to use, and benefit from, 5-HTP.

As it has from the start, 5-HTP takes care of the mood, sleep and bowel issues. Soon, I began noticing something unusual: after taking 5-HTP at bedtime, I'd frequently wake up with solutions to problems that had bothered me the night before. When I began taking it in the middle-of-the-night, I'd be filled with creative ideas.

From recent research, I've learned that another side effect of Parkinson's attack on dopamine is damage to the brain's executive function. Clearly, 5-HTP was also working for me on this Parkinson's side effect.

I have an addictive personality; previous struggles involved nicotine, alcohol, and sex. So I soon got in trouble by taking more and more 5-HTP. As a result, I ended up in hospital emergency rooms twice due to alarming serotonin-induced spikes in blood pressure. Even a small increase in 5-HTP dosage would shift the good mood to euphoria and the executive function's creative ideas to crazy ideas.

Now I carefully monitor my blood pressure and continue to tinker with the 5-HTP dosage. After the blood pressure scares, I bought the lowest-available dosage of 5-HTP -- 50mg -- which I took at bedtime. It continued to work nicely. But during the past year I've been experimenting, cutting the 50mg pill in half -- even into quarters -- and spreading the dosage more evenly through the day. This way, I could increase the daily dosage, but not by much. If I stay in the daily 50-100mg range, I'm OK. If I go higher, I run into problems.

I was pleased with the experiment's results. Then two weeks ago, I told my neurologist I wanted to switch from my 25/100 carbidopa-levodopa med to the extended release 50/200 pill. Typically, the extended release is prescribed for bedtime use, and the regular pill is used during the day. I wanted to use only the extended release version.

I'd been taking six regular pills every day at four hour intervals. Now, my neurologist prescribed four extended release pills each day at six hour intervals.

Immediately, mealtimes became easier. Carbidopa-levodopa guidelines recommend against taking the pill an hour before and after mealtimes. The six every-four-hours pills made mealtimes tricky. Now, I take each day's four extended release pills at 3am, 9am, 3pm, and 9pm -- avoiding mealtimes completely. The 3am pill fits nicely into my middle-of-the-night "quiet hour."

More than making meals easier, the new pill and and the new schedule are enhancing my sense of well-being. Research increasingly shows the benefits -- and difficulty -- of striking and maintaining a proper dopamine / serotonin balance... particularly important for those of us with PD. There are lots of factors in play, but I feel like I'm closing in on the balance that works for me.

Surprise! I'm Taking a New Pill
Generally anti-pill, I feel strongly that most supplements are a waste of money, and that I'm better off meeting my nutritional needs through diet. I  recently ditched the blood pressure meds, but I (surprisingly) added this pill to my regimen:
Last month I wrote a post based on an interview with Dr. Rudy Tanzi, the Joseph P. and Rose F. Kennedy Professor of Neurology at Harvard, and a top Alzheimer's researcher. I was interested in Tanzi's remarks on coconut oil and curcumin as cures for Alzheimer's. But what really caught my attention was his response when asked what he does to lower his own Alzheimer's risk. His answer:
I stay intellectually and socially engaged. I'm a vegetarian - we don't know for sure, but I do think that will help. The only supplement I take is called ashwagandha, which has anti-amyloid effects. Unfortunately, most of the ashwagandha you'll find online does not work. The best one comes from Douglas Labs, but you need to get a prescription.
In light of his credentials -- and because ashwagandha was the only supplement he takes -- I did some research. As it turns out, Douglas Labs no longer requires a doctor's prescription. I ordered a supply. Since I've been making a variety of changes, it's hard to know what's causing what. But I definitely have more energy, and I think ashwagandha is playing a role.
Here's what Deepak Chopra says ashwagandha:
Ashwagandha, one of the most vital herbs in Ayurvedic healing, has been used since ancient times for a wide variety of conditions, but is most well known for its restorative benefits. In Sanskrit ashwagandha means “the smell of a horse,” indicating that the herb imparts the vigor and strength of a stallion, and it has traditionally been prescribed to help people strengthen their immune system after an illness.
I'm not going to claim I have the vigor and strength of a stallion. But for now, my pills and I appear to be doing just fine.


Anonymous said...

So do you still take the curcumin?


John Schappi said...

Sorry for the delayed response. I somehow have neglected to check the comments for over a month. Yes, I still take the curcumin particularly since I see more and more favorable reports on studies being done on it. But since the hope is that it delays the progress of the disease, there's no way to really assess this except by an autopsy, My PD does seem to be progressing slower than that of others I know, but PD is notoriously idiosyncratic.