Functional Neurological Disorder Part 1

Botox for Blepharospasms

I’m so lucky I found this Facebook group for people with Functional Neurological Disorder (FND) that’s centered around finding the positive side of the disorder. I needed it. Let me tell you a little bit of my story.

It started at work in 2021. I was walking across the bridge to home, thinking about work, stressed to the max, when all the sudden I lost control of my eyes. They started blinking, and they wouldn’t stop. I tried to make them stop. It wasn’t as if I couldn’t see where I was going, but it was terrifying that I couldn’t control this blinking. Blinking is an involuntary thing, but when you blink several times, there’s something in your eyes, or you’re about to cry. I thought I was about to cry. I wasn’t. I was just stressed. This made me more stressed. The more stressed I was, the worse it seemed to blink. I called up my psychiatrist who referred me to a neurologist. Do you KNOW how scared I was to be seen by a neurologist??? Those doctors are people who are seen by patients who lose control of limbs and have brain surgery! So I go and try to listen the best I can. This is my first appointment with an actual specialist. I was terrified, which didn’t help that I didn’t take notes, didn’t record the session, didn’t research what I was getting into. I heard basically a few words and a few sentences in that entire meeting. “Blepharospasms” was repeated several times, and I still had to look it up in the after care summary to know how to say and spell it. That was the name of my blinking. The main treatment for it was Botox every three months, and this is where most of the meeting took place. They had to explain that Botox is not just cosmetic but medicinal. It was made for migraines and later used for conditions like this. You have to do XYZ to get approval for insurance before you can even schedule an appointment for Botox or else you will have to pay the several hundred dollars out of pocket. You still have to pay a couple hundred dollars every few months. For the rest of your life. After that, you want call this number and set up an appointment with this specific doctor. She’s the best at Botox around the eyes. Yes, needles will be inserted around the eye muscles several times in different spots. Every three months. For the rest of your life. Do you have any questions? I’m going to take your deer in the headlights look as a no for now, but message me on the app if you do. Thanks.

My first Botox appointment was just as scary as I thought it would be. Several months later, I get set up in the room they describe only as The Chair, and I’m totally serious. And it only needs to be described as that. There was the usual medical counter, a portable computer station, and the second half of the room was one giant chair with a medical tray next to it. They had me sit on The Chair while they asked me if any meds had changed, set me up for the next Botox appointment, and waited for the doctor. The doctor came in with a couple of students, asked if they could join, which I said of course, quickly showed me the chart where they were going to insert needles around my eyes, took my glasses, asked if I wanted a stress ball or two. The first time I took both. And off they went. The first needle jab isn’t so bad. It’s between the eyebrows. Depending on how they do it, they either do both of those first or do one at a time. The muscles are different there. I thought “this isn’t so painful!”

The rest of the needle inserts are around the outside of the eye tissue an inch or two from the eye. No joke. And there have been an increase in needle jabs almost every time I go there because it keeps getting worse and worse. They even put me on meds to help between Botox injections. The first time, I took myself to Starbucks as a reward, took the bus home, and took a nap. I ignored my husband, saying it was the worst pain I ever felt and that I just wanted to be left alone, and that was the end of my day.