Guest Post: MS Awareness 6/8

I suppose now is the time to tell my story, one that begins on Christmas Eve 2013. I had been watching television in our living room, snuggled up and just relaxing, when I got the most piercing migraine I’ve ever had. Suddenly I was in intense pain, my eyes blurring and watering. I’ve suffered from migraines since I was a teenager, though they’ve lessened in frequency as I’ve gotten older. I decided to head to bed and sleep it off, my usual tactic for dealing with the really bad ones.

I woke up at about 4AM to use the bathroom, but immediately knew something was wrong when I got up from the bed and immediately fell down. As I groped in the dark for my dresser to help hoist myself from the floor, I realized I was suffering from some extraordinarily severe vertigo. I couldn’t figure out exactly what was happening until I made it to my bathroom and switched on the light and realized not only was I dizzier than I had ever been (even after heavy drinking at a party), but I was unable to focus my eyes. I couldn’t tell, but my wife could, that my eyes were moving involuntarily – a condition I learned is called nystagmus.

We have a car, but my wife doesn’t drive and I certainly couldn’t drive being unable to focus my eyes, so I called 911 and requested a non-emergency ambulance (meaning no flashing lights or sirens) to take me to the ER. Once I arrived and was transferred to a bed, a doctor came to give me a brief exam (including an eye exam) before pronouncing me discharged with instructions to see an ophthalmologist to deal with the nystagmus. I knew whatever was happening to me was not related to my eyes, so I refused to leave and instead told the attending physician I wanted a neurology consult. He rolled his eyes, but called up to the neurology department only to be told to give me an MRI immediately. I was wheeled off blind, confused, and alone as my wife couldn’t accompany me at this point.

When the MRI was completed I was taken back to the ER and a short time later told I was going to be admitted and then given additional tests. They brought me upstairs and gave me a room before informing me I would be having blood drawn and then a lumbar puncture done. I had never had an LP, but knew what it was and roughly what to expect. I was still unprepared – the shot to numb me sent liquid fire racing up my spine before a needle was inserted and the table tilted. My cerebrospinal fluid was uncooperative and didn’t want to drain, so they had to tilt the table so vertically that I was gripping the top as tightly as I could, certain I was about to slide right off and into a heap on the floor.

Fifteen agonizing minutes later I was returned to my room, still unable to focus and thus unable to see. My wife was waiting for me and helped me dial my boss to inform her of my current state of affairs. Unfortunately, because she doesn’t drive and we have pets that needed tending to, my wife had to leave and I was alone. Keeping my eyes open gave me headaches, so I opted to keep them closed almost all the time, speaking to people I never really saw.

It was the most isolating, lonely experience I’ve had as an adult because the uncontrollable nystagmus prevented me from sending text messages or even making phone calls. The fact that I was unprepared for any type of hospital stay meant I didn’t have my phone charger, yet another barrier to being able to communicate with anyone I cared about.



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