The Narcolepsy Diaries Waking up to a new life?

Narcolepsy Questions Answered: Reader Sends Questions Regarding Narcolepsy and Xyrem

Since I’ve started the Narcolepsy Diaries blog, I’ve met some nice people who either have narcolepsy, or think they may have narcolepsy. I’ve decided to, with the person’s permission, post some of these e-mails and questions. Here’s a recent e-mail one that made its way from Europe:

First of all, I think you're doing an awesome job. I really like your videos. Just checked your Twitter. So, you're looking for some blog ideas, huh? I'd love to know what life was like before Xyrem. I mean, what were your symptoms? What really interests me is: Do you really have to completely fall asleep whilst doing stuff in order to be diagnosed with narcolepsy...cos I don't really do that. I just never ever get a good night's sleep and I get so tired that I really cannot keep open my eyes. Sometimes, I just get sooo tired that I black out, like during lectures, movies or when stuff is getting to me. I also got some (it's not too bad) social anxiety and I sorta manage to miss minutes when I'm at the supermarket, for instance. I switch to autopilot. Four weeks ago I was caught stealing. I just forgot to take it out of the shopping cart. It all ended well though; they believed me that I just forgot. =)

I'm going to see a neurologist about all this. At first, I went to see a psych doc. cos I was sure I was going crazy. Oh, and I also get vertigo. I think it's sleep-related. It gets worse with sleep deprivation, I think. Do you get that too? I hope the neurologist can help me with that.

Thank you!!!! You're doing a great job and you give me some hope. Maybe I am not all crazy, even though I have a diagnosed borderline personality disorder (but I got a job and I am functioning...not crazy....it's just got such a bad stigma this one). Maybe it's both....that's what I am hoping.


Anyway I'd just really like to know what life was / is like for you without meds.


Signed, J.

Thank you so much for sharing your symptoms and your story. I feel that sharing these will help you get some information and encouragement. I will answer your questions and hope that others reading will also make some comments, too. Keep in mind that my answers, as well as those others contribute, are based on our own experiences and you should speak to your doctor, etc. about your own personal symptoms.

Q. What was life like before Xyrem?
Answer: I want to be nothing but honest on my blog. Life is not much different now, but that’s because when I started taking Xyrem a few months ago, life was in a chaotic state. It’s been hard for me to take it regularly, especially with the holidays and lots of recent traveling. I also started a new relationship, and not that I am hiding the Xyrem, I just haven’t taken it when he is staying over. That’s not too often, though.

However, on the days I have taken my full dosage the two times per night, coupled with the Provigil during the day, I have never felt better. That freeing feeling should be motivation enough for me to take the Xyrem every day, but there have been too many things getting in the way. It’s no excuse and nothing I am proud of; I finally found what is seemingly a miracle, but I have been struggling with keeping up with it.

Life before Xyrem and without Xyrem was a struggle. My biggest issue is with waking. No matter how much sleep I get, I still cannot get up in the morning. I set three alarms, all which I hit snooze for – for hours. I know that this is giving me a terrible quality of sleep, nine minutes or so at a time, before I finally get up for the day and for that, I am groggy all morning, barely able to function or think clearly until I have been awake for a few hours. It’s always been this way. I suffered a great deal in my morning classes in college and high school, while I received 4.0s in the later classes. Back then, I was not diagnosed and no one took me seriously when I mentioned I had a problem. I will write more about my experience in another blog post, but wanted to address that for you, here.

Q. What were my narcolepsy symptoms?
Answer: My main symptom is my token for napping. I can fall asleep anywhere, no matter how loud or uncomfortable. In my sleep study, during the daytime test (the multi-sleep latency test) I feel asleep in less than five minutes each time, one time in one minute. I also have a terrible bout with the sleep-wake transition, and often thought I may have more than narcolepsy. But, upon waking, I am often groggy and cannot move or talk and sometimes, I don’t know if I am awake or asleep. Finally, my dreams are super vivid. Even when I hit snooze on my alarm clock, for those nine minutes, I dream and it feels like hours. In some of sleep bouts during the study, I had very vivid dreams, yet it was not registering as REM sleep. So, I am thinking that this is categorized by the hypnogogic hallucinations that also come with narcolepsy. I talk often in my sleep and as a child, slept walked.

Q. Do you really have to fall asleep completely whilst doing something to be diagnosed with narcolepsy?
Answer: In my experience, no. I do not have the cataplexy, nor do I fall asleep during the day while busy doing tasks. If I sit still, especially in a car or airplane or on a couch watching TV, I zonk out nearly immediately. It seems as if my brain is busy enough to keep me engaged, I do no fall asleep. There are a few criteria one must meet to be diagnosed. There is the Epworth Sleepiness Scale that can help determine excessive daytime sleepiness (EDS), as well as getting a nighttime and daytime multi-sleep latency test (MSLT) that will help rule out other sleep issues and find out if it is indeed narcolepsy.

Q. Do I ever get vertigo, too?
Answer: It is interesting that you ask that. A few years ago, I had a big time struggle with dizziness, or vertigo. It was during a period where I was working full-time and going to school full-time, as well as doing stringing work for a local newspaper. I was diagnosed with the narcolepsy already, yet was not taking medication regularly. I was pretty sleep deprived, too. I often felt dizzy. Once, it was so bad, I went to the ER. I was pretty much seasick for lack of a better word. I was diagnosed with Acute Labyrinthitis. I wrote about this experience on another website I used to contibute for, which you can read here. I was given some medication for it and after a few weeks, it went away. It never returned. I never thought of the two as related until you just asked. I am not sure if the vertigo issue was brought on by my sleepiness, but it is something to think about. But, I never heard or read of it happening. You should definitely bring that up to the doctor. Whether or not it is a symptom of your sleep disorder or other mental illness, it is something that should be taken care of because I know first-hand that it is not very comfortable.

The person who wrote this, J., asked not to be indentified by name, but this person is going to keep up with this blog, so if you also have narcolepsy or another sleep disorder that may fit the symptoms they described, please feel free to answer these same questions in the comments section of this blog.