October 23, 2016

Updates on My Peripheral Neuropathy and So-Called Orthostatic Hypotension


I was diagnosed with Parkinson's disease (PD) in September 2009, seven years ago. I should've been diagnosed several years earlier, but I’ve never had the tremor -- so characteristic of the disease – that makes early diagnosis easier.

I'm 87 years old, and I’ve probably had PD for 10 or more years. In light of those realities, I'm not doing too badly.

You wouldn't have gotten this upbeat assessment a couple months ago. The attack of shingles in March was a discouraging setback, compounded by Washington's hottest summer in history. Our founding fathers made a lot of brilliant decisions, but building the nation's capital in a swamp wasn’t one of them. With each passing year, I find it increasingly difficult to deal with the summer heat and humidity here. When those numbers go up, my energy goes down. There were even times this past summer when I was barely able to stagger around the house.

It's a different story today. I just took a break from the computer and asked my housemate Nimesh to drive me to the top of the hill on the road leading down to our house. I then got out of the car and took the half-mile walk down to our house… a stroll I take most every day now that the weather has changed.

In my last blog post, I ran a video of me taking this walk. Being able to walk half a mile downhill probably doesn't sound like much of an accomplishment to you. But it is for me.

Treatment of My Peripheral Neuropathy
In September, it occurred to me that my walking difficulties might not simply be a result of my Parkinson’s. I wondered: Might some undiagnosed peripheral neuropathy (PN) be a contributing cause? My neurologist ran some tests, which – sure enough – revealed a moderate to severe case of PN. The accompanying blood work showed a vitamin B12 deficiency, typical for people with PN. My doctor recommended a daily 1000mg dose of vitamin B12. Within a few days, I was feeling ready to take my down-the-hill walk.

It could well be that I’ll see even more improvement in the future. I had forgotten that the blood work also showed a significant surplus of vitamin B6 (my 58.5 ng/m was way above the normal 2.1 to 21.7 ng/m range). So I stopped taking a B-Complex supplement and now hope to see even more improvement.

Two days ago, I met some friends for lunch at a restaurant downtown. Eager to get some exercise, I asked my driver to drop me off several blocks from my destination. I took a wrong turn, and ended up walking about a mile before arriving at the restaurant. I was exhausted, but I made it.

I’ve seen studies that suggest PN afflicts a third of the people with Parkinson's. My experience indicates that getting a PN diagnosis might actually be good news, since the simple treatment might ease the walking difficulties associated with Parkinson's.

Update on My "Orthostatic Hypotension"
Many people, particularly the elderly, experience orthostatic hypotension (OH). It’s marked by a sharp drop in blood pressure that occurs when a person gets up from bed or from a chair, causing dizziness or even loss of consciousness. Doctors define OH as a drop of 20mm in systolic (top number) blood pressure or a drop of 10mm in diastolic (bottom number) pressure within three minutes after standing up.

People with Parkinson's are often diagnosed with OH. I've experienced these sinking spells for several years. At first, they occurred mostly when I was outside on a hot day. Then the incidents began to occur more frequently and without apparent cause.

I've written about OH several times. For the most extensive report, click here.

I've been uncomfortable labeling the incidents I experience as OH. Granted, some of these sinking spells occur when I shift from a sitting to a standing position. At other times, they occur after I’ve been standing for a long time.

I belong to the Parkinson's disease forum on HealthUnlocked. I recently asked if other members had also experienced similar sinking spells unrelated to a transition from sitting to standing. Several members answered “yes,” and – like me -- questioned the OH diagnosis.

I was having more frequent OH-like attacks recently, usually mid-morning. So I began monitoring my blood pressure at this time a day while I was sitting down. Repeatedly, I’d see my systolic pressure drop from above 150 to below 120 (more than the “20 point drop” in the OH definition). Even though I wasn’t feeling faint or dizzy, I sensed I might soon experience that unpleasantness. So I’d take a small chunk of a 5-HTP pill, which would quickly elevate the blood pressure number.

I'm not sure what's going on here, but I wonder if it warrants the OH label.




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