Calling all new users

353 posts in this topic

Hi all,


My name is Cecelia. I'm 25 and was just recently diagnosed with Narcolepsy. I've been started on Provigil as of yesterday and was excited to have my first "normal" day that I can remember in months! I'm excited to start living again and have energy to do the things that I love to do; paint, sew, getting outdoors, etc. My husband is very supportive of my diagnoses but other family members are not. I'm growing increasingly frustrated with family members who are doubtful of doctors and are uneducated about narcolepsy. I was told by an Aunt who is a nurse that sleep medicine is a joke; since she is a "medical professional" my mom agreed with her. I'm hoping as time goes on, they will change their opinions.  Looking forward to meeting lots of new friends through this site who can relate to my issues.



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My name is Jeff. I'm 39 and just got my diagnosis. Funny thing is, I was already taking provigil for the clarity boost, as I work in the tech industry. Today is my first day with Nuvigil and it is an improvement. I could sleep easily on provigil.

Knowing now I have N, I can go back to my early teen years and see the symptoms. It's made things both easier and harder by having a diagnosis. Both the result of knowing I don't have control, sometimes.


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I'm Tara and I'm a few weeks shy of my 20th birthday. I was officially diagnosed n w/ c when I was 17. My journey was quite an adventurous one: 

Looking back, I've realized that my symptoms began when I was around 11 or 12 years old; it was very mild cataplexy that would only occur when my younger sister annoyed me to the point where I would just lose it and try and go after her; except when I did, my knees would give in and she would get away. Having been raised in a rather conservative Catholic church and spending Sundays going to CCD/Mass and hearing about how God wants you to love your siblings, I just thought it was God's way of telling me not to chase my sister (I realize now how incredibly stupid that sounds, but it made sense in 11-year old me's head). So yeah, that knee buckling happened a handful of times, and there was my middle school graduation; they were taking a class photo, and I was trying to smile, but I literally could not hold my smile. I would try, but then all those muscles you use to smile would just give in (I wound up having this weird, awful half-smile in the photo); in the end I just assumed it was because I was really nervous. I also began experiencing sleep paralysis when I was 13/14, where I would wake up suddenly having terrible heart palpitations and simultaneously being unable to move. A Google search basically told me it happens sometimes, so I didn't worry about it. While all of this was going on I was also on stimulant medication because I had been diagnosed with ADHD. I firmly believe that had it not been for that I would have experienced EDS as well and possibly been diagnosed earlier than I was.

When I started high school, my parents decided that the stimulants for the ADHD weren't doing any good and had me quit cold turkey. The EDS reared its ugly head immediately. I still remember that first stimulant-free day; I fell asleep in every single one of my classes (including art class, while holding scissors!!). Up until that point I had prided myself on having never fallen asleep in class, so you can only imagine how mortified I was. At first I just thought my body was just adjusting to not having the stimulants anymore, but even after a few weeks I was still struggling to stay awake. That was the first sign that something wasn't right. I went and got a blood test to see if I had mono or some blood sugar issue, but everything came back normal. Then I just assumed it was because I was in a small, private, all-female college prepatory school with high academic standards and a rigorous workload; I was just tired because I was staying up later and getting up earlier. A reasonable assumption, yes? 

In late February/early March of my freshman year, Cataplexy decided it was time to manifest itself in all its glorious ways. When I realized it wasn't just a "thing" that would go away, I Googled away. "knees giving in no pain", what could it be? I looked at it all: a pinched nerve, MS, you name it. But the symptoms just didn't seem to fit what was happening to me; what was I missing. Finally, one, night, it clicked. I Googled "knees give in when I laugh". Boom. First result is the Wikipedia page for cataplexy. As soon as I read it, there was no doubt in my mind that I had cataplexy. Of course, discovering what cataplexy was also led to me discovering what narcolepsy was. I couldn't believe the two things that were putting such a damper on my life were connected! 

If putting a name to what was happening to me was hard, it was exponentially harder to convince people that I actually had it. Somehow over the years I had built up a reputation (at least in the eyes of my parents) for being a hypochondriac. This, they thought, was just another of those cases, no matter how hard I tried to convince them otherwise. Even my therapist was skeptical that it wasn't psychosomatic. It was my neurologist (whom I was seeing for a separate condition) that finally believed me and ordered an EEG to make sure I wasn't having seizures. I had my first EEG in October of my junior year, but it didn't show any abnormalities and I was sent home. When the cataplexy persisted, he (my neurologist) ordered a second EEG (which I underwent in March of my junior year), just to make sure nothing was missed. The results were the same, but this time he actually officially diagnosed me with cataplexy. Since cataplexy is almost always associated with narcolepsy, I was referred to a sleep specialist, and underwent a sleep study in June of my junior year. A couple of weeks after the sleep study, I was officially diagnosed with narcolepsy!! 

As for my medications: for my narcolepsy, I started on 150 mg of nuvigil. The only major change I've made to that was the switch to the generic stuff when it came out a couple of months ago. The cataplexy, however, is an entirely different story: I originally started out on Elavil (25 mg) but I was having terrifying hypnogognic/pompic hallucinations, so my sleep doctor switched me to 37.5 mg of Effixor, which helped tremendously (I've gone from having hg/p hallucinations almost every night to just a couple per year). I was on that dosage for about a year. Then just as I started college, I realized it was getting less effective, so my doctor raised my dose to 75mg. That was about a year ago. I now take 112.5mg of the generic brand of Effixor each morning (my doctor added another 37.5 after I told him that the medication wasn't lasting as long as I needed it to). 

I know I'm lucky. It only took me about two and a half years to be diagnosed. I'm aware that for many people it takes so much longer. When I look back though I can help but be upset at the negative impact those two and a half undiagnosed years had on my life. It had a significant impact on my grades, which disqualified my from taking some Advanced Placement courses and even bumped me down into lower-level classes. Even medicated, it still negatively affects me. Every decision I make, from whether or not I should hang out with friends to whether or not I should try and find a part-time job, I make based on whether n and c will allow me to handle it (usually the answer is no). I know this isn't the right mindset to be in, but I just can't help myself because n and c have such a huge impact on my life. I really want to go to law school after I complete my undergraduate degree, but with n and c I question whether or not it will be possible. It would really take a miracle...

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