The Worst Medical Condition

My Restless Legs Syndrome started when I was in my teens; my mother also got it, and so did some of her older relatives. I presumed that, like everything else, I could expect it to improve with age. Not! It got worse as I got older, and here in New Zealand, no one seemed to know anything about it. I dreaded aeroplane flights, cars, buses, theatres, anything where you had to sit down and sit still, and became expert at finding excuses to avoid them. Yet I longed for entertainment, to go to a play or a movie or a sports game and just sit there and enjoy the popcorn.

Communicating RLS medication findings with provider

It was not until the advent of the internet that I started doing my own research and came across sites suggesting the use of Pramipexole, or Mirapex. I took the article to my doctor, who was nervous about the effect this might have on the brain and cautiously prescribed half a 25mg tablet at night. Tortured by lack of sleep, I took the full tablet, which, to my amazement, worked. I persuaded the doctor to revise my dosage and tried to stop worrying about the effect this could have on my dopamine system. As time went on, in my sixties, finding RLS was creeping into my days as well as my nights, I was back at my doctor's, demanding half a tablet three times a day and one at night. She prescribed it.

How surgery flared my RLS

Peace reigned. And then, aged 72, I had surgery for coronary artery bypass grafts. Maybe it was the drugs used after the operation, maybe there was some strange connection between the heart and the brain that had been offended, but soon after I woke, RLS started. To the vocal admiration of the nurses, while other patients lay enviably still in their beds, I walked the corridors, mentally begging for sleep.

None of the nurses had heard of RLS. Even the doctors had to explain to them what it was and why I was taking Prampipexole. They were not suspicious or judgemental, but as they went through the list of my medications and came to it, they were genuinely curious and ignorant. They had no idea what I could try instead, nor did they realize my desperation. I asked myself, how could they not know of a medical condition that denies you sleep until the night blends into day and dreams into conscious thought and you feel you are going insane, a torture as old as mankind? I went home exhausted, and after 72 hours without sleep, I begged God, telling him I could not live another day. It was that bad.

Managing my RLS today

Remarkably, around that time, the Pramipexole started working again. I live today, grateful for the drug and still taking half a .25mg tablet three times a day and one at night. If I miss even one tablet, the RLS sets in and won’t stop; it’s as if I am maintaining a delicate chemical balance. So that’s where I find myself at 74. With all the health hurdles I have met in life, I still maintain that Restless Legs Syndrome, untreated, is the worst of them all, and that there is dreadful ignorance out there.