September 23, 2014

Here's How My Healthcare CEO and His Team Resolved My Blood Pressure Crisis.

Who is my healthcare CEO? Me of course.

Who's on the team? On call, depending on the nature of the problem, are my internist, a variety of doctor/specialists, my physical therapist, and my nearest and dearest, i.e. friends and family. A formidable group.

What's the crisis? "Crisis" may be a bit hyperbolic but, according to a study my son called to my attention, the problem I've been having for a year or more  is a key warning sign of a stroke.

I've been checking  my blood pressure with a wrist monitor for years, mainly because the 5-HTP pills that I take can have a side effect of causing a spike in blood pressure. I also keep a log of the readings.



Over a year ago I began noticing that at intervals throughout the day my blood pressure readings would spike upward and then subside.  As if this wasn't bad enough, I also was experiencing on occasion episodes in which I would come close to fainting and, when I was able to check, I found this coincided with systolic (the upper number) blood pressure readings below 100.

Often I recorded reading below 100 and over 200 in the same day. I provided more details about this in a recent post.

Clearly it was time to call in Team Schappi.

Two Issues, Two Solutions
When a problem comes up regarding my healthcare, the CEO (me) typically does the initial research for two reasons:.
  1. I'm the one who is most familiar with what's going on.
  2. I love doing research.
I was stymied at first because I couldn't find anything dealing with a  100-point spread in blood pressure readings. Then I realized that we might well be dealing with two separate problems, not one.


This is what clued me in:

Issue # 1: Why the High Blood Pressure?
In my blood pressure log, I record the reading and the time. I also note what pills I've taken during the day as well. Looking over the log, a clear pattern began to emerge. The spikes in blood pressure coincided with the "off" periods in my main Parkinson medication.

Carbidopa/levodopa is the drug of choice in  dealing with Parkinson's. Five years ago  when I started taking it, I took  1 pill (25mg of carbidopa and 100 mg to levodopa) every 6 hours. Today I'm taking two pills every 3 hours.

In the early years, my problem was that I'd forget to take a pill for hours since the timing of the pill didn't seem to make any difference in how I felt. Now I definitely can tell when the effectiveness of the last dose is wearing off and the new one hasn't kicked in.  This is referred to as an"off" period. My log showed that my blood pressure spikes were occurring during these "off" periods.

Time to call in the team.


Given the nature of the problem, I turned to my neurologist who treats my Parkinson's disease and the nephrologist (kidney doctor) who I consult on blood pressure issues. My neurologist suggested tying to shorten the "off" period by tinkering with the dosage and timing for the carbidopa/levodopa. That didn't seem to make much difference.

The blood pressure specialist suggested trying a calcium-channel blocker called nifedipine. This did work. Within a few days I was consistently getting reading below the 150/90 guideline that is now considered appropriate for someone like me (over age 80 with no evidence of heart disease).

It's been over a week since starting this regimen and it seems to work.

On to--

Issue #2: Why the Low Blood Pressure

The only diagnosis I could find to explain my symptoms was something called “orthostatic hypotension” (OH). That condition is also known as “postural hypotension,” since it describes the low blood pressure (hypotension) that sometimes occurs when you stand up (that’s the “orthostatic” part).

This OH described my symptoms but not how I got them, since I didn't have that common "standing up" component. So… did I really have OH? 

My daughter sent me a link to a report that alerted me to the existence of something called “neurogenic orthostatic hypotension” (NOH). The “neurogenic” part here means “produced by the nervous system,” and the symptoms can be related to general muscle weakening associated with diseases like MS and PD... and not simply to the act of standing up from a sitting position. Just being upright can cause it. Simply lying down (reversing the orthostatic” part) typically solves the problem. When you can’t easily lie down – say you’re traveling – the pinch of salt on the tongue usually helps.

Take nifedipine for the blood pressure highs. Take a dab of salt of lie down and relax for the lows.

Crisis resolved.  Nothing onerous about the solutions.

Of course we haven't answered the question of why the Parkinson's off period triggers the high blood pressure. And lots if questions remain about NOH.  But at least these threats of a stroke have been removed.

Now What?
In the corporate world, the military and other  organizations, once a problem like this has been resolved, an individual or team is appointed to report on what lessons have been learned.

The CEO has asked me to do that and I promised him I'd report back shortly.

Stay tuned.

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