Thursday evening I get home from work, make dinner then go sit down to eat when all of a sudden I feel disconnected from myself. Not lightheaded exactly. And then my face goes droopy and I start slurring and can't pick up my left arm or grip. Tried to stand up, wobbled and fell back into the couch. Then got up and was a little shaky on my feet. Then it was all gone and I was back to normal. All in the span of four minutes. It kind of felt like I was really drunk, but I hadn't had any alcohol in weeks.
Since it was gone and I then felt fine, I just wanted to dismiss it, largely out of fear and embarrassment. I don't know why I was embarrassed, but that's how I felt. My girlfriend immediately suspected stroke, which is why she timed it and checked motor control. I thought no way! I'm only 36, no family history of anything like that, and am pretty healthy.
But it happened again about 45 minutes later, but less severe, mostly just the disconnected feeling and left hand/arm weakness. Stupidly, out of fear and embarrassment, I kind of hid it from her so she wouldn't rush me to the ER. I wanted to sleep on it and see how I felt in the morning.
Well I felt fine so I decided to go to work. My partner made me promise to at least call my doctor helpline, and if it happened again to go get checked out immediately. Fair enough. I called the helpline before even going to work, but it disconnected me a few minutes after putting me on hold so I said F this.
So I went to work and finished some things up. But at the end of the workday it happened again, less severe but still not good. Knowing full well that most urgent cares don't have the right equipment or staff to handle something like this and ER's are packed, I called the ER at my preferred full-service hospital and they said "come in now, if you're having a stroke there will be no wait".
So I did. It was close to work and I wasn't having an episode so I drove myself. In hindsight, not the best idea. But I was scared of what was going on, and scared of the ambulance bill.
True to their word, I'm in immediately. Two people at reception instantly all-in on me. One entering my personal info, and the other doing a quick a quick screening of my condition. Then straight through the door to triage. Vitals, blood, EKG. All normal and healthy. So they sent me back to the waiting room while working out a place to put me, they were not about to release me. About that time my partner showed up to support me, which was awesome.
Like @SmugAardvark said in his much scarier post, ER's are seriously overfilled. So I got a chair at the end of a hallway. Not even a bed. But it was a quiet and warm corner compared to the lobby or anywhere else, and the staff was very pleasant and attentive.
Then I had another episode while I was using the restroom. It took me a while to button my pants, but I was able to demonstrate the tail end of my symptoms to a nurse just before they were completely gone again.
More blood samples plus urine. Then a couple doctors came to ask questions and check me out. Then around 3am I was sent for an MRI. Confirmed stroke. Luckily minor, no lasting effects. But the question of why still remained. And how to prevent more. Closer examination of the MRI indicated smaller than normal blood vessels to the front of my brain. But still, why?
So they moved me to a gurney bed in the ER right by the nurse's station, no room though. So that's where I got to spend my Friday night. Rest was not easy to come by, and it was fairly chaotic. But my partner was there so that helped a lot. They gave me blood thinners and aspirin, and I haven't had another episode since.
Yesterday morning, they finally transferred me upstairs to the main hospital in the neurology wing, but still no room. Instead I got a curtained off alcove in the hallway that came with a private bathroom. It felt luxurious compared to the ER, even if it was a bit cramped.
More doctors, more nurses, more tests, more blood draws. Another EKG, an echocardiogram, then another MRI and MRA. Each test administered by someone new, and then a conversation with another doctor after each. All part of either the stroke team or neurosciences. All working together. All very attentive. Even better, I was finally able to get some sleep last night, in between having my vitals checked every few hours. It was much needed.
Then this morning they came to me fairly certain of what's going on. They think it's a rare disease called moyamoya. Which is small blood vessels causing other, smaller blood vessels to form to help with blood supply issues. But the newer smaller vessels are weak and can be problematic. They discussed options with me and answered all my questions. But I was still reeling and scared and not ready to decide anything.
Through the whole thing all the nurses and doctors were amazing and advocating for me to whoever makes the decision to get me a real room. And they did! As of a few hours ago I apparently got the best room in the unit, and I can see why
After getting all the previous results, the doctors said the best course of action was an angiogram. So we're going to do that tomorrow and figure out treatment options from there. But I should be able to go home in a day or two though.
Worst case, open brain surgery to put in new blood vessels. Terrifying.
Best case, drugs. Fun! (Not really)
They are confident this won't reduce my lifespan and long term should only be a minor inconvenience at worst.
I'm very lucky through all of this, not including the shit luck of having this issue to begin with. The hospital I'm at is nationally ranked and has an extremely highly rated Neuro team.
