Last week, while enjoying a nice enchilada, I 'became' a Chiarian

I was diagnosed less than a week ago. I am curious if anyone else has had something like this happen to them. It was as if chiari had been fairly dormant in me, but pounced on me in the course of a few hours. In the past few months, I have noticed an increase in headaches (mild to moderate, in the eye area, not back of the head), worsening depression (for which I've been on meds for over ten years), some increase in the occasional motor tics I've had for the past few years, and I feel like I've been mixing words up unusually often, for me... But nothing really serious - I'd attributed it to the stress of graduate school. Until last week.

Last Saturday, I was in the middle of dinner at a favorite restaurant with my boyfriend. I started feeling dizzy, spacey and uncoordinated - dropped my fork a few times. It was a lot like the physical/sensory symptoms of drunkenness, but with normal cognition and judgement... and I hadn't had a drink in over 24 hours (even then, only a cider, I am a total light weight!) It was as if my body got up and went out drinking without me, lol.

I knew something was up, so I texted a friend we were going to meet up with later, saying I wasn't feeling well. Writing the text took longer than it should have. By the time we left dinner, I was walking funny, like an old lady with poop in her pants - slowly, shuffling, with a wide gate. My knees felt extremely weak. My BF decided to take me to urgent care. While in the car, my speech became odd, slurred, and with long pauses before statements. Cognitively, I was fine - fine enough to be terrified that this was a stroke (that was the only thing I could think of that could cause symptoms like this).

Walking into the emergency room was hard, still that wide, drunken walk. I could barely stand when waiting in line, even when leaning against a wall. I kept telling staff “If I had enjoyed four drinks, I wouldn’t be so worried. But I haven’t!” By the time I was taken to an ER room, and put in a bed, I could barely move. Sitting up was very difficult. I had to have my boyfriend take out my earrings (because they were getting tangled in my hair), and put some lip balm on me, because my lips felt chapped... I was totally conscious and lucid, just not in control of my body. I was making wise cracks the whole time, albeit in a halting, mumbled sort of way. I was seeing double pretty severely, to the point where I commented to my boyfriend “You should cosplay as Zaphod Beeblebrox, because you have two heads.” I had a headache, but not any worse than those I’d been getting on a nearly daily basis for the past few months.

After a little while, I started to feel much better, gradually regaining function over the course of an hour. The doctor determined it was probably an odd reaction to some OTC cough syrup I’d had earlier that day, and never had previously. Even the doctor didn't sound too sure of that though, but told me to come back if symptoms returned. I was fine until around noon the next day, when it started coming back. Not as bad as before, but definitely not normal for me - not seeing straight, halting speech and trouble walking normally. So it was back to the ER.

The doctors decided that I needed to stay pending an MRI to rule out a stroke, even though they seemed pretty sure it wasn't. They did all sorts of neurological tests, and the only new thing they noted was that my eyes were wiggling around. I had a pretty strong feeling that they all just thought I was hopped up on something. After almost 24 hours of waiting for the MRI, sure enough, the doctor informed me that it was indeed not a stroke, but that I had a Chiari 1 malformation. But the doctor admitted that he knew very little about it, just that it was congenital. He said it may or may not have been behind my weird weekend. Everything I have learned since then has been courtesy of google.

I’ve been having mild symptoms on and off all week. Dizziness is the main one, and with visual focus issues. I’ve noticed it’s easier to focus on things that are nearby than across the room - when I relax my eyes, it goes totally out of focus. There are other vision things going on, but I have no idea how to describe it, other than some occasional ripples in the floor... It's feels almost like my eyes are farther away from everything, or there's something between them and what they're seeing, if that makes any sense. Walking right has been difficult during these episodes - I am afraid people at work will think I'm drunk!

I have an appointment with a neurosurgeon on Tuesday, but I want to put my story out to people who may have experienced this sort of thing. Has anyone had something like this happen to them?

Thank you in advance for any wisdom you can provide.

Sounds pretty much like what happened to me. I've had headaches all my life, and I thought the stress of school/work/my business/volunteering was making me anxious and achy. Suddenly one day (last June) my heart started pounding and wouldn't stop. My head was killing me and I started to gray out every time I stood up. The next morning I realized my vision was doubled. Drove myself to urgent care where (thank goodness!) the doc on call asked all the right questions and suspected Chiari! I've been through a ton of MRIs and CTs and whatnot since then. Still waiting for the right neurosurgeon to come along. But the all-of-a-sudden-ness of it all is the worst part. One day I was living my life to the fullest, the next I had my driver's license taken away, my work restricted to nil, not to mention basically bedridden with pain and neurological symptoms. It's such a friggin shock to the system!

Good luck with your appointment!

Katrina W.

I used to have these spells. I would get dizzy, everything would look strange, and I'd feel like I was about to pass out. Twice I had them while driving and had to pull over! So far since surgery they've not recurred. Fingers crossed they won't!!!

Pneumonia brought on my symptoms and I had the headaches three months before that but was to busy to go to the dr. For a headache then the pneumonia hit along with all the other symptoms that wouldn’t go away and I was diagnosed weird how sudden our lives change