Last year I had a major health scare.
In November 2022, I started to get these weird pains. They started as a dull headache that didn’t seem to ever go away but would get worse with activity, stress, sunlight, going outside. Triggers were hard to evaluate at first, because it really seemed like it was constant. At first the symptoms were tolerable but then they got worse within a week or two. They seemed to get worse if I didn’t sleep.
At the time I wasn’t eating enough. I would skip meals unconsciously because I work east coast hours but live on the west coast. I would get up at 5a and suddenly it was 8a and I didn’t have breakfast. Then it’d be 2p and I didn’t have breakfast or lunch. I had just started as a project manager, and the newness of the management and the project felt overwhelming. It was important work, and my standards were high.
In November 2022, I sought out a neurologist. He wasn’t the most up to date on research, but he was convenient to schedule and seemed attentive. At my first appointment we noticed, in addition to the headaches, blurred vision, and dizziness I was having, I had full body weakness on my left side. I knew that was the case in my shoulder — but when he performed his tests, it was noticeable in my legs, arms and hands.
There were a couple of disconnected scares at first. I collapsed one day coming back from a workout after climbing the stairs. I remember reaching for the fridge and then blacking out on the floor. There was another time where I blacked out getting up from the couch. Another where I tried to catch myself on the wall and missed.
I have a history of Raynaud's Phenomenon and Orthostatic Hypotension. Previously in high school, I had a couple instances of passing out, but at the time I had an eating disorder and always felt this was the real cause. Now, eating-disorder-free, this seemed more concerning. I was happy; I figured I was less stressed; I ate healthy and went for walks regularly. The only flag I really had was that I was consistently tired. I’ve been tired for over a year and a half. We thought moving to California would help. I thought trying to be more regular with exercise would help. I even tried the opposite — sleeping 10 hours, 8, napping after work.
The push and pull of trial and error with my health has felt constant.
There were times where it affected my speech. I would stutter or forget an occasional word. However in in December 2022, I had an occasion that didn’t make sense. I was brushing my teeth in the bathroom, and I felt weird, off, unbalanced, uncomfortable. I’m not sure how else to describe the feeling. Which by the way, is one of the most frustrating aspects of it all — not being able to precisely describe things.
On this particular evening, I thought I clearly said “No me siento bien” but what came out was incomprehensible jumble. I went out to the living room to tell Pablo, and my face drooped immensely, my vision blurred and I tripped over my right foot.
Pablo got nervous. Parts of this had happened in the couple weeks prior. Each time it seemed a little different or worse. This time, we went to urgent care. The doctor there was convinced they were migraines. He told me that it’d be too expensive to examine other causes. We convinced them to run an ECG at least, as both my husband and I were nervous it was something more serious. I mentioned strokes that had happened to family members, although not so young (another of which happened a month after), and I really wanted a thorough examination.
We were turned away. Migraines are typically rule-out-everything-else diagnoses, so this was concerning to us. While I was there my symptoms had improved, but shortly after leaving they got worse again. After coming home, another couple hours pass and we decided to go to the emergency room.
When I arrived my symptoms got better again. I could smile okay on arrival. Nevertheless, upon first exam with a physician on duty it was noted that I had some weakness on my left side in my legs and hands. This was puzzling since my facial drooping was happening on my right side, but was consistent with the neurology visit.
A similar but much more severe incident left me hospitalized for over a week starting Christmas Day. I couldn’t walk, my speech was jumbled, and the intensity would come and go, and different parts of me — arms, legs, face would be affected. It felt like I was having a series of mini-attacks of whatever this was. After many exams, scans, poking and prodding — the best conclusion was hemiplegic migraines.
Over a year later, I’ve successfully ruled out a whole slough of diagnoses, and overall my health has drastically improved. I had a few vitamin deficiencies and tried many different medicines and supplements. I concentrated thoroughly on my nutrition; I found a PCP and neurologist that I trust, who both believe it to be a post-viral (likely COVID) reaction that led to the vasospasm induced hemiplegic migraine attacks. So that’s the best conclusion we have.
It was a scary journey. I lost a lot of weight, I constantly felt nervous of what was to come, and I was even accused of faking it. But, I suppose there’s comfort in all that I have ruled out, and I hope this article can help someone else. I found little resources on what I was experiencing, and it was terrifying.
The best piece of advice that the director of the stroke center at the hospital gave me, though: next time call an ambulance. Yes, they’re expensive. Yes, do it even if you live around the corner from the hospital. Because if you call the ambulance, the paramedics will determine the best center for you to receive help. Maybe what I was going through required earlier intervention from different experts. My hope is though, that it’ll never happen again.
