June 11, 2015

My Blood Pressure and Levodopa: Six of My Doctors Were Wrong and I Was Right

For about two years, my major health concern has been the blood pressure (bp) spikes that typically occur during Parkinson’s "off" periods, when the last levodopa pill is losing its effectiveness and the new pill hasn't yet kicked in.
My search for a  solution has focused on ways to reduce these off periods. But six doctors I've consulted -- my former internist, the two geriatricians who have replaced the internist, and three different neurologists who specialize in Parkinson's disease (PD) – disagreed with me.

All of them – after checking my blood pressure (bp) in their offices – told me I should take bp meds. A couple of them urged me to stop monitoring my readings so often at home.

I've driven doctors, family, friends -- and myself -- crazy by acquiescing to these drug recommendations… and then changing my mind and abandoning the meds to try my own cures. Nobody was happy with that situation.

Finally, I stumbled upon an approach that has dramatically reduced the bp spikes without using bp pills. And I’m feeling better in other ways, too.

First, some background.

New Thinking About Blood Pressure and Seniors
Recently, an independent group of experts, based on a review of the medical research, concluded that most people age 60+ don't need bp meds until their levels hit 150/90. Several groups, notably the American Heart Association, have not endorsed that new target. But other research suggests drug treatment has not been proved helpful for most people, regardless of age, until systolic pressure hits 160.

Many experts think the goal of 150/90 for most people age 60+ -- and 140/90 for most people with diabetes or chronic kidney disease -- is reasonable. Getting levels below these recommended numbers can require high doses of bp drugs, or even multiple meds that increase the risk of side effects. Those effects can include persistent cough, erectile dysfunction, and frequent urination. The drugs can also cause dizziness, which increases the risk of falls.

Some authorities now argue that anyone over 80 without cardiac problems can stop taking bp pills. One study even found that high blood pressure in those over 85 predicts longer survival, a finding that "would probably be news to 95 percent of practicing physicians,” according to an accompanying editorial in Archives of Internal Medicine.
Blood Pressure and Me
This new thinking about blood pressure and the elderly informed my recent decision to ditch bp meds.

Late last year, I enlisted a new medical team: a neurologist and two affiliated geriatricians. During our first meetings, they urged me to resume the bp meds. The geriatricians recommended lisinopril, perhaps the most widely prescribed med for older patients. I decided to go along with their recommendation.

Soon enough, I was falling asleep reading my morning Washington Post. I tried taking the pill at different times of day, but the morning drowsiness persisted. The lisinopril reduced the blood pressure spikes a bit. But concerns persisted, and my docs suggested I double the dosage. Instead, I stopped taking the pill altogether.

But this choice made me uncomfortable. It also forced me to take regular bp readings at home. I’ve been especially concerned when off-period spikes rise above 175 systolic, which I consider the danger zone for strokes. Those spikes are scary, even though experience so far has shown that my bp settles back down as soon as new pills kick in.

I’ve had several other bp-lowering strategies, too. Meditating for a few minutes always seemed to hasten my pressure’s return into normal ranges. And my ace in the hole? Nifedipine, prescribed by a bp specialist, brings my numbers quickly back under control. That doc was the only one I consulted who didn’t keep urging me to stop fooling around with my meds. At one point, he even said he “wouldn’t lose any sleep” if I stopped taking the bp meds altogether.

But the nifedipine was not a problem-free magic bullet; sometimes it worked too well. I’d find that my systolic numbers would keep falling, often well below 100... hypotension even more scary than hypertension.

So in the past few months, I've been splitting the pill and only taking about a third of the dosage. I use a scissors to cut through the pill’s hard outside covering.

At this point, you're probably thinking: Jeez! Rather than go through all this crap, why not just go back to taking the meds again?

I was asking myself the same question. But then serendipity kicked in.

A few weeks ago, I used up my regular levodopa pills but hadn't reordered because another unopened bottle of pills was on the medicine cabinet shelf. But I discovered it contained the extended release form of levodopa prescribed by my former neurologist. When I called CVS to renew my regular levodopa prescription, the pharmacist said it couldn't be filled for a day or two.

So I started taking the extended release pill. Bingo!

I'd been taking the regular levodopa pill at two hour intervals. I decided to take the extended release pill every three hours. Immediately I started getting much better blood pressure readings than I’d had taking lisinopril.

As an example, here are my readings so far this morning:

2:30am – 135/74
6am – 132/88
9am – 150/91

Remember… readings at pill-taking time have typically shown the sharpest spikes. Now, I’m much less obsessive about monitoring my numbers. Nonetheless, I check my bp several times a day just to make sure this miracle is continuing. It is.

It’s not only my pressure that’s improved. My incontinence is significantly reduced. And I'm feeling better generally.

Earlier this year, the FDA approved Rytary, a new expended release levodopa drug.

It’s designed to smooth out levodopa delivery, and clinical trials have shown it significantly reduces PD off times. I understand it is already on the market.

Next week, I’ll mention these developments to my PD neurologist during our regular appointment. Stayed tuned for new developments.

A Big Unanswered Question
Is this just my story? Or could many others with Parkinson's be taking blood pressure meds when what they really need is a way to smooth our the delivery of levodopa? 


dwr0522 said...

Just had to post a comment to say that I want to share your story with my husband and his medical team. He has been having many of the same issues and we had asked for the extended release but told it was not necessary. This gives us the incentive to press for at least a trial. Much thanks for your post.

John Schappi said...

I'd be interested in your keeping me posted on this. Thanks. John