I woke up at 2:35 am, slightly nauseous. The night before I had been out with my friends and had a few beers. It had been a stressful week, to say the least.
I headed to the kitchen to get some water, and picked up a bottle of Pepcid (which I normally take every morning) and a bottle of anti-nausea medicine. The nausea medicine was prescribed by an ER doc earlier in the year after I had spent all morning heaving water and my stomach bile into the toilet.
Now I was in the kitchen, carefully choosing between the two medications. On the one hand I knew that Pepcid may not really be for nausea, but could still resolve a sour stomach. On the other, the nausea medicine carried a drowsiness and alcohol warning. Always cautious about warning labels, I took a Pepcid and grabbed a glass of water. I carried the other medication in my hand for my nightstand, in case I changed my mind.
I headed back to the bedroom, glass of water and prescription bottle in hand.
As I walked through my bedroom doorway, I suddenly felt lightheaded. Processing this thought was brief, as I soon realized I was on the floor.
The room was spinning. My left leg was gone. Did I have my left arm? Why was it so hard to see? Why am I wet? Did I pee myself? Was I bleeding?
These thoughts flashed through my head in an instant. A stroke. Shit. Today? I was not ready for this.
Calm fell over me. I had to call 911. I had a job to do if I wanted to survive.
My apartment complex has thin walls, and I knew my neighbor is always up late. I called out his name four times, to try to save myself from having to crawl to the phone across the room. When he didn’t answer, it was go time.
Crawling across the floor to the phone felt like a slow motion action scene. Somewhere in me, I knew it only really took a minute, but I was only able to use my right hand and leg to achieve it. During the crawl, I felt shooting pin pricks down my left shoulder, an area that is always in pain these days.
Once I reached the dresser, I started pulling at the charging cable for the phone. Trying to get it to fall to the ground. I still couldn’t lift my head far. The room was spinning fast.
I got the phone onto the ground, hunched over it, and got to work. Using my right hand proved more difficult, as my brain seemingly wanted to text rather than call. I’d hit the button to call, and the messaging screen would show up. This happened three times as it dawned on me that my hand-eye coordination with my right hand was not working.
My hand was consistently going more to the right than I needed it to.
I can correct this.
I felt like I could barely see, and I wasn’t sure if it was because the room was spinning, or if there was something wrong with my vision. It seemed I couldn’t see clearly out of my right side. I was seeing flashes, like my ocular migraines. But it was dark.
I can correct this. I can do this.
I got to the dialer pad.
Backspace where are you?
Okay. Let’s try again.
9. 4. 1.
Almost there. Backspace?
I heard the ringer. I had been holding my breath. I let out a sigh.
The dispatcher answered. I replied “Hi, my name is Katie, I live at [address], I need an ambulance, I am having a stroke.”
“Okay, can you repeat the address?”
“Is there a way for us to get in?” the dispatcher asked.
I am alone.
“No, I am alone. My friend at [address] has a key.”
“Okay, can you repeat the address?” Again, I obliged.
Dispatcher, “Can you tell me what is going on?”
I did not want to spend precious minutes on the floor trying to explain. I knew I was having a stroke. I asked her to confirm there was an ambulance on the way. She confirmed. Then I told her in a few words about my left-sided numbness, the room spinning, and my inability to see correctly.
She let me know someone was on the way, and asked if she could hang up.
Terror crept up into my throat for a second as I asked how far out they were.
About five minutes.
Okay. It is going to be okay. Stay calm.
I responded. “Okay, we can hang up. Thank you.”
What could I do in the minutes on my floor? I got back to work. I struggled hard with my right hand to get in contact with a friend, my mom, and my brother. Prior to this event, my biggest concern was having an emergency and not being able to tell them what had happened to me.
I hear the ringer. I get a voicemail.
“Hey, it’s Katie. Something happened. I am having a stroke. The ambulance is on the way. I just wanted to tell you that I love you. I will try to keep you updated.”
Repeat for my mom.
Repeat for my brother.
As I was leaving my brother the voicemail, I heard the fire truck roll up. In hearing the fire truck, I apparently missed the “I am having a stroke” part, and left him with “Something happened. The ambulance is on the way. I love you.” I later found this out as we laughed about my ridiculous voicemail together.
I heard the response team try the front door. I heard them go back downstairs. I started feeling a tingle in my left foot. Feeling was returning. Things in the room had stopped spinning so hard as well.
I heard one of the responders say “we can go to the other unit for the key.”
No need to wake up my friend. I could do this.
I had a camper light I kept by the bed in case of emergencies.
I turned it on and held it tightly in my right hand as I started crawling.
I encountered water on the floor, and remembered I had a glass of water with me when I fell. The realization came upon me as I dragged myself through it that I didn’t pee myself. I had spilled water on myself.
Slow and steady, I got to the front door.
I looked up at the door handle from the floor. I reached up far to unlock the bolt, and opened the door. A wave of cool air rushed into the apartment. Deep breath.
I heard them downstairs, “I think I just heard the door open.”
“Hello?!” I yelled out, “Hello??” The room had stopped spinning, feeling returning to my leg.
They were coming up the stairs. Relief flooded over me as I held the door open from the ground.
They came inside, standing over me as I laid in front of the door with my emergency light. The whole apartment was dark except for my little camper light.
One of them asked, “Can we turn on a light?”
I laughed at his question. “Please do, and if you could close the door that would be great. It is a bit chilly out there!”
They helped me onto the couch and I told them where my emergency book was. I was still seeing flashes of light in my eyes, but other than that the symptoms had subsided.
The ambulance drivers soon arrived as well. I had five emergency responders in my apartment, and they were shocked reading my emergency book and learning about what I have.
Of the five emergency responders standing in my living room, none had heard of my condition.
Laying in the ambulance on the way to the hospital four days before Christmas, I laughed to myself. I already met my out-of-pocket max this year!
The neurologist at the hospital diagnosed the event as a posterior circulation transient ischemic attack (TIA), non-CT. He thought I had a dissection in one of the arteries that supplies blood to my brain stem, but the dissection was so small that it did not show up on the scans. This would explain the symptoms on both sides of my body.
I talked with one of the firefighters later, after I had been evaluated by the hospital neurologist and the TIA was diagnosed. He was happy to see me, and I explained more about my condition.
He told me if I hadn’t had the emergency book and the sign on my front door alerting them about my vEDS, they probably would not have taken me to the hospital. I look young, and healthy, and my symptoms had mostly resolved by the time they arrived.
Follow-up with my care team included a referral to a neurologist to rule out hemiplegic migraines, which can mimic TIAs. I am also looking into low-flow TIAs, which have proven difficult to find information about.
Five months later I am still on the waiting list for the neurologist, and grateful I haven’t had any further events while I wait.