Just frustrated and need to vent

Eight months ago I was finally given a diagnosis that made sense, although I'm not sure if this is good or bad. Now that I do know I have IH borderlining N (I was very worried during my MSLT) I think I have over researched and now I'm just driving myself crazy. I do have cataplexy, I hallucinate, and have sleep paralysis. Since being diagnosed I have reflected back on times I would fall asleep at work in high school, or in class at college, I can remember the first episode of sleep paralysis. I can feel my symptoms getting worse and I find it terrifying. Recently, I have been having trouble getting a good night sleep because I am often having extremely vivid dreams that partially awake me, but I am paralyzed when they do. This has been happening multiple times a night and have drastically decreased the amount of true rest I get.

I have also read about children with N hallucinating seeing that there were weird things on the walls. I'm not sure if it's related but this used to scare the crap out of me when I was a child. It just makes me wonder when this all really started.

I also occassionally have memory loss, especially when it is past my 'bedtime'. In my opinion my mind shuts down but my body keeps going in autopilot. I'm not sure how common this is in N, but it has been getting worse and it scares me. I travel a lot for work, in areas that are rural and areas that I have never been to before. I fear what will happen if I have one of these episodes with no one around that will guide me to bed. I recently was driving home, on a route that I take often when I suddenly found myself in an area I did not recognize with no recollection of how I got there. Does anyone else experience this? I rarely drink and never drive afterward, I find this is an automatic question people ask when I cannot remember doing something.

I am only 25 and am worried about what's to come. I have always wanted to have it all, the family, career, basically the white pickett fence type of life and I feel this dream is slowly being pulled out from under me.

Thank you all for being there, sometimes I think it helps just to get all feelings out there.

Terrific post. Thanks for sharing!

I understand your frustration. I am 29 and was recently diagnosed with narcolepsy however i dont not have cataplexy but i do have very vivid hallucinations after waking up from being asleep for about 25-30 minutes. I have had a couple time that i have experienced sleep paralysis. I have a very short memory and can not remember if I did something or not from 5 min ago so I am contantly having to recheck things to make sure I did them such as take my meds and ect. I've learned through this whole thing you just got to take things one day at a time, I am on med that help me stay alseep all night long and its been about 6 months since I have had a hallucination. I also am on meds to give me energy through out the day. Having Narcolepsy doesn't mean you can't achieve your dreams it just means you have to work a little harder than the average person to achieve them.


I am so sorry you are having such a hard time. You truly sound terrified. Yes, I have been driving and ended up an hour or more away from my destination. No clue how I got there or where the time went. It seemed just a blink but suddenly I realized I was lost and it was an hour or so later. The first time it happened while driving, at one moment a flock of little black birds flew right up to and over my car like a black wind gust. Next thing I knew the ice cream I had been eating was gone and I was headed to the beach. LOL This condition is indeed life altering in many ways but is doable if handle properly. The first thing I had to learn was (as stupid as this sounds) to embrace the disorder, then study, then learn all the tricks and finally live with it. You are so young and have time to figure all this out. Just do not let yourself panic! I hear it in your words. Slow down, breath and grab a shoulder to cry on. Then you should feel well enough to find your plan. Talking about it helps relive the stress and hopefully that will word off some of this. And eat right! lol

Thank you for all the support everyone. As always it’s nice to know that you’re not the only one.

I'm so sorry about your diagnosis. I was in denial about my narcolepsy for years. I used caffeine and cigarettes to stay awake at work, slept in my car, slept in the bathroom stalls. I finally had a nervous breakdown when I was around 42 and started the process of determining the underlying condition of narcolepsy with cataplexy. I went on an antidepressant (Effexor) and Provigil, both were very effective for about 8 years. I still had to have caffeine or a 5 hour energy after lunch. I tried new medications for depression and alertness since the Effexor and Provigil stopped working but none have been as effective. I now take B12, CoQ10, vitamins C&D and zoloft with adderall. I gained weight. But, please don't think you can't have it all. You have to find the right person first. Someone who will not "blame" you for sleeping all the time. Take a holistic approach to reaching your most healthy self. No one ever said it was easy. You may not be able to hold down a job. Just keep staying hopeful and listen to your body. If the amphetamines make you panicky, tell your doctor. If the antidepressants are working, let your doctor know it is not acceptable. You can still have it all. It may not be the version you thought it would be, but life IS worth living. Ask for help when you need it. There is no shame to that. Kathleen

I appreciate the support. Sometimes it all just builds up when you don't talk about it, slowly I'm realizing this. I've spent years trying to hide my sleep habits from my family and my boyfriend that I live with. I did finally share with him all of my symptoms and told him about my more significant episodes of losing time, cataplexy and sleep paralysis. And he is very understanding, but it's hard to share this with anyone.