Vision Loss, Brain Pressure, Falls and a Life on the Couch¶

Day 4 · 4:53:54 · Myriam Bohémier · Toni Lannigan

👁️ Back at work she could not read a glucose meter; both eyes were impaired for 11 months and her right eye remains too blurry to read or see faces.
🧠 She describes constant brain pressure around the right eye, lost driving, wrecked balance with repeated stair falls, and bed-to-couch days.
💊 A doctor said it was all in her head and piled on gabapentin and psych meds; only Topamax helped some sight before she stopped trusting the system.

Post-ICU cascade of bilateral vision injury, neurologic pressure, disability, and dismissive care.

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Transcript¶

Myriam Bohémier · 4:53:54

Can you share with us what happened after that?

Toni Lannigan · 4:53:57

Yeah. Um, so I went home with absolutely no support, no support. Uh, I never had any follow-ups, nothing. Um, so I felt as a caretaker my obligation was to go back to work. Let's just brush this off. Let's go back to work. So I entered my first shift back, I don't know how many days later, and I was going to get a blood glucose at one of my patients. And I remember looking down at the machine and I could see the machine. It was, I could see the shape and I could see the color, couldn't read the numbers. And at this point I realized my vision was impaired. I went back down to the same emergency room that I was in and the same doctor was on call. And from there, 11 months is how long my vision was impaired. And to this day, my right eye is still impaired.

Myriam Bohémier · 4:54:53

And when you say impaired, I mean it was literally too blurry to see.

Toni Lannigan · 4:54:58

I like— I wouldn't— so if I close my left eye right now, um, my right eye is blurred. I cannot read my name and I can't see your face. But that's what it was continuously for 11 months because I couldn't—.

Myriam Bohémier · 4:55:08

In both eyes?

Toni Lannigan · 4:55:09

In both eyes. But then the one eye cleared So with having that, my everyday life was turned upside down. I couldn't drive no more. Obviously you wouldn't want me behind the wheel and I walking like my gait was completely off my balance. You could ask my family, like, I don't know, can't count how many times I fell down my own stairs, right? I couldn't read no more. I went from my bed down to the couch, and at 3 o'clock I put on a fake smile so that way my child had to try to have a normal life again.

Myriam Bohémier · 4:55:51

You also, um, developed headaches. Can you share about that with us?

Toni Lannigan · 4:55:56

Um, I actually don't like the term headaches. Um, I call it pressure. I have immense pressure in my brain, and it forms around my right eye, my still affected eye. Um, I kind of just push through my days with this pressure. It's now part of me. Um, I've never had any answers for it. It's just there.

Myriam Bohémier · 4:56:23

So 5 years later, they don't know why you're feeling pressure in your head.

Toni Lannigan · 4:56:27

To be honest with you, I stopped going to doctors. For years I stopped going. I had one doctor say it was all in my head and turn around and give me gabapentin, pain meds, mental health meds. If you could see the amount of medication that I had. Just as of recently, I took back my life, came off all my meds. The only meds that helped me was Topamax that helped me get whatever sight I had back. But, uh, I don't trust our system no more, and I feel like a burden. Even coming here today, I was like, maybe my story isn't— shouldn't be here. So that's how I—.

Toni Lannigan · 4:57:11

Every—.

Toni Lannigan · 4:57:11

Everything made me feel. I'm not—.

Myriam Bohémier · 4:57:14

Okay, I'd like to explore that a little bit.