First onset of symptoms???

[indyem]

I just read something that made me remember when my sleep issues started......I was curious if anyone else can pin point when theirs did as well??

i can tell you what i was wearing that day, 21 years ago, when i was sent home from school sick. fever, flu like symptoms, blood work that showed signs of mono but not conclusive......slept for 2 weeks straight.....went back to school once or twice a week for 4 weeks to finish the school year, and slept the whole summer away......i never fully recovered from whatever it was i had. 8 months prior i had a very traumatic experience and my docs also thought i was showing some signs of PTSD.......but being 14, they assumed, "i'd just get over it with time....." awesome, right?! lol!
college, marriage and children......if i'd only known about my N, i would have certainly made some different decisions. i love my husband and i love my children, but i would tell any women to think VERY VERY long and hard about what it takes to raise a child, let alone three......there are days i don't think i'm going to survive i'm so tired!! and i have no idea what is the normal mom of 3 tired vs my N!!! I want so much for my family yet i can only give them a 1/4 of it because i simply don't have the energy........phew. i'm not sure i've ever said that out loud or in black and white print!!

anyway, back to my original question......what are your memories of your illness/disease/syndrome.....hell, i never know what people call it and i certainly don't want to upset someone lol! did you seek help quickly, or wait (like i did for years)?
i have narcolepsy and i hate it with every ounce of my being.

[sammo]

I remember exactly when mine started -- first day of school in 7th grade. I fell asleep during morning announcements in homeroom. I had never fallen asleep in school before. And I don't think I made it through a day without falling asleep since! About a year or so after that, I noticed that I had a tendency to fall down when something startled me. I just thought it was some kind of weird reflex. I did well enough in school that the fact that I slept through one or two classes every day wasn't really an issue, grades-wise, and everyone assumed I just didn't get enough sleep the night before and/or had an attitude problem. So I didn't get a diagnosis until a decade after my symptoms started. Falling asleep at one's desk was tolerated by most of my teachers/professors, but I knew it would be grounds for firing in the real, post-school world. I guess things would have been a little easier for me if I'd gotten the diagnosis earlier, but I didn't, so it is what it is. I don't "hate" having narcolepsy because at this point, I've had it for over half my life and it's not going to change anytime soon. So I try to focus my energy on accepting it and dealing with whatever limitations it may place on me. I haven't found that it affects my life too much, especially since I started taking Xyrem. I just have to be more disciplined and plan my days more than my friends who don't have it.

[Taylenne]

My 5 yr old daughter's first symptoms were mid March of this year. I had taken my 3 children and 2 of their friends to see a Traveling Reptile Show one afternoon during March Break. The show was from 1-3pm. My 5 yr old was hanging off my legs by about 1:30pm, whining and complaining that she was tired and didn't feel well. That was the first day I remember her wanting to nap. Every day since then, she's needed a 2 hr nap. She was diagnosed with N with C in early May, about 8 weeks later. Prior to that she hadn't needed a daytime nap since around her 4th birthday.

Tay

[Willow2007]

I can remember when I was very young, probably 2 or 3 years old, laying in bed, unable to move watching spirals and stars and things in the air of my room. It was actually quite entertaining, and I thought everybody saw these things. Even in grade school, I had trouble sleeping at night, but was exhausted all day long. By the time I was married with children, I would fall asleep without even knowing I had fallen asleep. I always would wake up, without even knowing I fell asleep, and the kids were small, and getting in to trouble because I wasn't watching them closely. but I always dealt with it until about five years ago, when it got really bad, sleeping 16-20 hours a day. that's when I had the sleep study and found out I had N.

[Tracy]

Eek sorry this is so long, thanks for indulging me!

Ok, you all know I do not have N, so I hope you won’t mind me commenting….

I can only imagine what it must be like to have N, but I think I can somewhat relate due to my 14 years of misdiagnosis re my severe sleep apnea which rendered me in a sleep deprived fog that I perceive as what your daily life is similar to. I lived in automatic behavior mode with extreme eds, depression, memory loss and constant fatigue when I was awake. Awake – was that the time when my eyes were open and I tried to progress through my days cleaning, cooking and driving my kids where they needed to be when in fact I had no business being behind the wheel of my car? I even worked part time during this time in my life, have no clue how I was able to do that. I remember that at the end of each day, I could not remember what I had done during the day……can you relate?

So I perceive that you living with N is a similar form of my extreme sleep deprivation as your sleep is so fragmented that you never get enough quality, restorative sleep. HUGS……….

Doctors pushed migraine meds, anti depressants and just told me to lose weight and get more sleep, some told me to sleep less, that I was lazy, self indulgent. Was I wallowing in self pity?

One area that I can relate is with sleep paralysis and hypnagogic hallucinations. Yes, despite NOT having narcolepsy, some people like me, are plagued with SP and HH. Like Willow, my earliest memory of SP and HH is around the age of 3. I never saw her entertaining spirals and stars – mine were and continue to be horrific images. I grew up being afraid of the dark and still to this day have SP and HH and sleep with a low light on in my bedroom so when I do awaken, I can see my surroundings to assure that there is no burglar or ferocious animal about to pounce and tear my throat out.

[Star]

My mom said I was born not sleeping. I remember tossing and turning as a child. I'd doze off then wake up in a panic praying for safety. My first catplexy (not that I knew it then) was falling off of my swingset.

Fast forward several years and any noise would wake me up. When I had my babies I put them in their own room from the beginnign because the slightest sound woke me up. Then, once day got here I was sooo tired.

Fast forward again and I was DX'd with IH for awhile then had another sleep study and it was changed to N with Cataplexy. Maybe something to do with driving home from work and ending up somewhere that I'd never been. Now, I only drive in town when I'm rested and then if I can get someone else to drive all the better.

[csever01]

I was a huge sleepwalker when I was little.

My strep test when I was 12 came back negative but the doctor was so convinced I had it that he put me on medication anyway. About 6 months later (in retrospect, of course), I developed all the symptoms of N within a year. This was in 1994-95. I remember the distinct setting in which I began falling asleep in nearly every class until graduation. We were watching "Roots" in social studies in the fall of 8th grade...so this was October of 1995. I remember his real name was Kunta Kinte or something and they renamed him Toby, but the rest I have no clue about. To this day I have never seen the movie. I also started not being able to write for a few minutes every time I laughed. They sent me to the counselor's office in 9th grade and they called my mom. Eventually they basically dismissed me as a lazy, depressed, unmotivated teen. My mom, unfortunately, isn't very tenacious, so she just settled for their explanation. She didn't necessarily agree, but she didn't take any steps to fix it, either.

I consider myself to be very intelligent, yet I graduated 159th out of the 292 in my graduating class...meaning like the 46th percentile.

Life went on. I ended up at a full-time retail-like job, but one in which I sat at a desk to deal with customers. It worked just fine because I was interacting all day with people. Then when I was 19, in the winter of 2001-02, I came down with mono. That company was so good to its employees. The first day I became sick, I tried to tell my boss I could make it through the rest of the day (like 3 more hours) so I wouldn't inconvenience anyone. He looked at me and said, "Charlie, GO HOME. You are SICK. You have plenty of sick time. Just let us know when you can come back." I went to the doctor and, sure enough, mono. I was out of work for 4 days until the initial sickness dropped off. But then the fatigue set in. I was tired--mentally and physically--all the time for 2 months. Toward the end of that I started to research CFS because I thought I might have that. Well then gradually the complete exhaustion was replaced by sleepiness with a small dash of physical fatigue.

By early 2004, I reached my breaking point. By this time, I had moved on and was working 50 hours per week as a restaurant manager (at the same company I'm with now). In early February, I came home exhausted after working 9 a.m. to 7 p.m. I went directly to bed at about 7:30 p.m. on a Tuesday thinking I'd have the next two days (days off) to recover. When I woke up, I was irritated because it was only 12:30 a.m. When I looked at my watch more closely, I realized it was 12:30 a.m. on Thursday. So I had slept about 29 hours straight. I stayed up about 4 hours before going back to bed and sleeping another 10. So I slept 43 hours in a 48-hour period.

At that point, I KNEW something had to actually be wrong. When I woke up finally (2 p.m. or so on Thursday), I just called a sleep clinic directly (my insurance doesn't require referrals).

I had my first doctor's visit sometime in March 2004, and I had my sleep study the night of June 9-10. The results of the study almost, but not quite, provided enough to diagnose me. Luckily, the doctor had asked some questions at our initial appointment that I thought were weird at the time, like, "When someone tells a really funny joke, or surprises you, do your knees buckle?" Duh, don't everyone's???

Anyway, that clinic didn't have you see the doc the next morning; instead, you had a follow-up appointment a few weeks later.

Because of a combination of the sleep study and the doctor's clinical evaluation (mostly for cataplexy), I was officially diagnosed with N/C on July 6, 2004--exactly 2 weeks prior to my 22nd birthday.

So as of today, I've lived with it for around 16-17 years, and I have had a formal diagnosis for exactly 7 years and 16 days.

[still_ill?]

I had weird sensations and visions when trying to get to sleep or upon waking throughout my childhood. I had a hard time getting to sleep at night and slept very lightly, waking up at the slightest provocation. However, I had an equally hard time getting out of bed in the AM. Starting in 6th grade, I had a hard time staying awake in class. Constant fatigue and exhaustion throughout my teen years led to a major undiagnosed depressive disorder and dangerous situations once I started driving. The mid-late afternoon was the worst time for my symptoms. I would come home, instantly fall on the floor and spend an hour or two in hypnogogic limbo. At night, I would often awaken to find all of my clothes on the floor. This became a constant source of anxiety when I went to college and had a roommate. Because I grew up in a very superstitious evangelical household, I thought it was some sexual perversion that controlled me at night. Somehow, I stumbled in a fog of fatigue through my first two years of college before finally falling apart during the first semester of my junior year.

My wife's family checked me into a mental ward, where they put me on Effexor XR for depression. Things got a little better after this, as my mood improved, I gained a marginal amount of energy/focusing power, and the apparent severity of my REM cycles subsided.

A few years later, and after switching from Effexor to Wellbutrin, I started teaching public school and was falling asleep on my way to work, even after sleeping 10+ hours. This time I finally saw a sleep doc, suspecting apnea, and got the surprising suggestion of narcolepsy. MSLT confirmed, and I've been searching for the right treatment since.

Xyrem in combination with Conerta was amazing, but literally drove me into the darkest depression of my life (well, Xyem combined with teaching public school ). Right now, my treatment is focused more on treating my anxiety and depression. However, I'm back on Effexor and that seems to be doing the trick. If I can kick Zyprexa and Ativan, I'd like to give Xyrem another shot with an effective antidepressant in place. For the time being, I'm taking 400mg of Provigil, but my new sleep doc, who seems very attentive, is likely to switch me to Ritalin soon. I have hopes that this will give me the energy I need to function as a professor, student, father, and husband.