side effects are a pain in the eye…

Most POTSies that I have spoken to are on at least one medication to treat their symptoms, often a whole plethora of pills. I’ll save the list of medications I take for a future post, but to give you an idea of the length of said list, the pharmacy ranks third on the frequency list of places I visit per month, outranked only by home and work. I’ve developed quite the friendship with Gary (my pharmacist).

People with POTS tend to have extreme sensitivity to medications. Often we start off on the lowest dose possible and slowly work our way up to a normal dosage. With one medication, I started on a child’s dose which was only available in liquid form. So, for months, I had to drink icky cherry flavored liquid out of one of those measuring spoons until I could finally graduate to the big girl pills. I started at 12mg and have finally worked my way up to 90mg, multiple times per day.

Increasing a dosage too quickly can result in numerous side effects. Even after someone with POTS has been on a specific medication for a while, s/he can continue to experience the side effects. I take a medication, prescribed shortly after the beginning of the year, that is typically prescribed to address muscle weakness caused by a condition called myasthenia gravis.  This medication is supposed to help with my fatigue and give me more energy by assisting in transmitting nerve messages to my muscles. However, sometimes the nerves get kind of chatty and send too many messages. As a result, I experience muscle twitching where a small muscle group will twitch involuntarily.

So, I went to work this morning feeling alright, but within twenty minutes of arriving, the side effects began. I had visible twitching in my arm, multiple places over my back and chest, and in my left eye. It’s not necessarily painful, just extremely uncomfortable.

I’m not sure if it was caused by the twitching in my eye or just a bad POTS morning, but my vision became distorted and I was unable to read. I was also unable to swallow for almost an hour, but that was likely just a product of POTS, not medication. Here’s my eye twitch, although it’s hard to see due to the lack of focus. You can see it better on the lower eyelid. Sorry about the video orientation – I’m still learning how cell phone video works 🙂

I know potassium deficiency can also cause muscle cramps and twitches, so I have found that consuming potassium  helps stop the muscle twitching sooner. Now, I try to keep a banana close at all times. After the twitching began (and the inability to swallow ceased), I ate my banana at work and within two hours I was “back to normal”. Whatever that means 🙂

The muscle twitches are very common for me with this medication. However, the medication does help with my energy level, so I’m not ready to give it up just yet. According to Wikipedia, a side effect is an effect, whether therapeutic or adverse, that is secondary to the one intended – an unintended consequence. In that case, POTS is just a side effect of my life.

“Why are there never any good side effects? Just once I’d like to see a drug commercial that says, ‘May cause extreme awesomeness’.” – Anonymous

Stay tuned.
– L