July 17, 2015

Using My Blood Pressure Monitor to Help Manage My Levodopa . . . and More?

Several days ago, I wrote about recent health care experiments I've conducted. Well, here I go again.

This time, I'm trying to determine if I can use my regular blood pressure (BP) readings to help guide the timing of the levodopa medication I take for my Parkinson's (PD). The longer we take levodopa, the harder it typically becomes to get dosage and timing just right.

Already I'm finding that these readings, and particularly the brief notes accompanying them, may prove helpful in monitoring and managing other aspects of my health care as well

My Overused Blood Pressure Monitor
I use the BP monitor pictured above about ten times each day, and I record the numbers in the journal shown next to it.

Ten times a day seems like a lot... my obsessive-compulsive nature in action. But two years ago, I became concerned about regular BP spikes I was experiencing during the "off" periods between levodopa pills. That's when I started recording my numbers so often.

My docs simply urged me to resume taking BP meds, which I'd taken for most of my adult life. But I wasn't convinced I should, especially when I kept seeing updated guidelines... that people 80+ with no history of coronary disease didn't need to take BP meds.

I was pretty sure those BP spikes were a function of my "off" periods on the levodopa... and not because of some underlying hypertension. My BP readings were usually below 150/90 except for levodopa off periods.

I bounced around -- taking the BP pills, then stopping them -- as my docs and I debated the issue.

Clarity came by accident. Two months ago, I ran out of my regular levodopa and started taking an extended release variety instead. Almost immediately, the BP spikes resolved, and I felt better generally. I wrote about this happy surprise here.

My New Blood Pressure Game
While those dangerously high spikes have subsided, my BP still rises toward the end of each three-hour pill cycle. In addition, I still experience some off-period discomfort... unpleasantness I think would diminish if I could better manage the levodopa dosage and timing.

PD-related tremor I assume provide the most obvious signals of one's place on the "on" and "off" cycle of this disease. I don't experience tremors; instead, I have issues with posture and balance. I know I'm slipping into an "off" period when my walking paces shorten... and when my handwriting becomes cramped and smaller ("micrographia," a common PD symptom).

I write my  BP reading in my log, and add very brief notes I might find helpful later. Observing my handwriting in those notes provides another means of determining whether I'm in a levodopa off period. (In the lead-off photo you can see an example of the cramped writing just below the pen.)

The latest acceptable BP limit for people my age has been raised  to 150/90. When I notice my numbers approaching those limits -- and when I see my small, cramping script -- I know it's pill time.

But if -- after the usual three-hour cycle -- my BP is still OK (137/80 for example), and if my writing still flows smoothly, I may wait about 30 minutes before popping the next pill. I've noticed, however, it's not a good idea to extend a cycle beyond four hours.

While I know BP can do odd things for no apparent reason, I have observed several patterns over the past few weeks:
  • Spending several uninterrupted hours at the computer seems to drive my pressure up.
  • Drinking a glass of cold water helps regulate my pressure from either side -- raising it when DC's heat and humidity have the effect of driving it down... and lowering it when it begins to spike as I slip into an "off" period.
I'm very hopeful that this log will help me manage other aspects of my health
care. For example, initially I'd speculated that the serious sinking spell I'd experienced recently might have been caused by my temporarily resuming regular levodopa. I've discounted this theory since BP readings and log jottings showed that I had experienced  a similar but lesser incident recently while taking the extended release pill.

My BP journal usually provides an answer when I forget and wonder "What happened and when?" If my housemates ever need to call 911 for me, they know where I keep the journal and can pass it along to the responding EMTs. 

Is This BP/Levodopa Connection Just a Schappi Thing?
My research hasn't revealed any compelling, documented connection between levodopa and blood pressure. But I feel like my experience here can't be unique. 

I belong to two good online forums for people with Parkinson's:
I'll leave messages on both websites about my BP/levodopa suspicions and watch for replies.


Red Wood Creations said...

Thank you for taking the time to publish this information very useful! I've been looking for books of this nature for a way too long. I'm just glad that I found yours. Looking forward for your next post. Thanks :)

purchase blood pressure monitor

TimBowers said...

We found your weblog is very handy for us. When you keep going this perfect work I’ll come back to your site!
Blood Pressure Monitors