My story: Can anyone relate?

Hello everyone, I am writing this at 4am, as per ususal, I have been awake every hour on the hour since midnight. This post will be a bit long, I apologize.

I am 56, female, have had sleep issues my ENTIRE life. Never slept as a baby, and all growing up I was very jealous of my best friend, who would sleep in on the weekends till noon and always feel refreshed in the morning, while I had always subsisted on choppy sleep or just plain old insomnia.

Back in the mid 90's, I had a period of 40 days and nights, no sleep at all, ended up having what I would call a nervous breakdown from being shaky from no sleep. I ended up being hospitalized and was induced into sleep through an IV of Ativan. At that time, the doctors told me the lack of sleep meant that I was probably bipolar. They started me on Ambien (circa 1993 or so), and that worked great for many years, because without it, I would never have gotten to sleep on my own. In fact, I would go into full-blown panic attack the lower the Ambien pills in the bottle got. They would tell me that being bipolar, my thoughts were racing too much and that's why I couldn't sleep. I bought into that for a while, today I don't believe it at all that I have bipolar. I fact, I no longer trust doctors anymore, especially psychiatrists and therapists.

Fast forward to 2024, and I have been on the generic version Zolpidem for a good 20 years now, and it's no longer working. Used to be I would take one and be out in a half hour and sleep for 6-8 hours. The salad days. Now, I take one and it doesn't begin to kick in for many hours. I believe I have developed a dependency on these pills, scared to even TRY to sleep at night without them. I also believe I've built up a tolerance to them so they no longer work like they once did. I plan to start weaning off them soon, because all those stories you hear about parasomnias on Ambien are true - I sleep eat and there are days I wake up and my kitchen is full of pots and pans and there's a perfectly cooked Sunday roast chicken and all the trimmings in the fridge that was not there the night before. Now, for the current problem - possible narcolepsy...

I've begun working at home because I cannot get through a day without napping for 3-4 hours at a time, sometimes twice in a day - that's 6-8 hours of my day completely GONE. My doctor says it could be grogginess from the Ambien, but for decades I fid not have that problem. And this constant napping - which includes vivid, gory dreams - I believe, is a big part of why the Ambien has stopped working the way it has. I can't keep my eyes open at all during the day. I've become very aware of when it comes on - something in my brain just switches on and I immediately stop what I'm doing, put the 12-hr ocean wave dvd on and lay down. Hours will pass and sometimes I wake up somewhat refreshed - at least not yawning incessently - other times with a massive headache, especially after one of those vivid dreams.

My own research has led me to explore narcolepsy, which I believe I may have. My doctor has prescribed 10mg of Ritalin to help keep me awake during the day and suggested multiple 20 minute naps, and a half hour on the treadmill to keep me stimulated. I am picking up the Ritalin today, but as soon as the clock strikes 9 am, I am calling my health plan to set up a series of sleep study tests to either rule in or rule out narcolepsy. It's something they cover 100%, so I figured I might as well take advantage of it while I can. I am kind of hoping it will be narcolepsy so I can figure out how to handle this and get off the Ambien for good. Currently, the only thing keeping me going is another forum member who said "Time to embrace the wakefulness", so when I am awake, like right now at 4:40am, I'm just trying to get something productive done.

Sorry for the long rambling. If anyone can relate, please let me know. Thank you for taking the time to read 🙂