My last 3 years of battle to only be diagnosed with narcolepsy with caterplexy.

Started abruptly

In 2018 I had a stomach bleed that shut down one kidney, brain swelling, septic and in a coma. All of the Drs kept telling my family they didn't know how I would be when I woke up and didn't know if there was or what kind of damage had been done. From the day I woke up in early 2019, I'd been in a coma roughly three weeks, I immediately began having hallucinations, vivid dreams, once I got extremely fearful when a nurse went to get me up and I collapsed and hit my head on the table and never in my life had I did or experienced any of what I was since waking up so I knew something wasn't right.

Never was I told from any Dr what had happened to me or to even be aware that things could happen to me as a result of it so I continued on as a total survivor. In late 2019 I began to have episodes of not being able to wake up but actually the whole time my brain was awake and fully aware of everything people were saying and aware when I was being taken out of my home to the hospital only to wake up on the way there or just as they were wheeling me in and this happened quite a few times so everyone thought I was making it up for whatever reason they thought but I knew I wasn't. In 2020 I literally slept from 2020-2022 almost 24/7 only to get up long enough to go to the bathroom, eat dinner, get grandchild off to school and then I'd be back in bed. My husband and dad were the one's taking me to and from everywhere. I was afraid to be left alone, go anywhere,(mainly puplic places),be left alone with children or be responsible for anyone else due to not being to control when and how long I'd fall asleep. In 2023 I got connected with a sleep specialist who literally saved my life in every way. He was told things I'd been doing by my family and when he found out about everything that happened in 2018 he said that's it, the connection that I needed to put it together.

A narcolepsy diagnosis

He diagnosed me with narcolepsy with caterplexy and started me on three different types of medications that can be used for narcolepsy and it's now March of 2024 and my whole life has turned around from worst to much better. Don't ever think that if you're not born with it or get narcolepsy in early age that there's no chance you or anyone else won't get it because I'm now in my mid 50s and I never had any of the symptoms. The Drs now know my narcolepsy was caused from the combination of my coma, brain swelling and sepsis and that's why nobody ever considered that I might have narcolepsy. There's so so much more to narcolepsy than sleeping and I've been told oh you sleep all the time, you're lazy, you never answer your phone, why can't you drive there and much more. Even watching me over the past 3.5 years my family still doesn't understand about narcolepsy or have asked me anything about it. Us with narcolepsy go through so much that nobody else does and I wish everyone knew more about narcolepsy.