My Story, Part 1: Cylert, Provigil, Ritalin and Concerta

Eleven posts into my blog, I thought it was time to tell you my story, as far as dealing with Narcolepsy is concerned.  Over the years I have tried a number of medications, and considering that I will certainly be talking about my experiences with each one in future posts, it seems that it would useful to know where I have been and where I am now.

As I have mentioned in previous posts, I was diagnosed with Narcolepsy at age nine.  More specifically, I was diagnosed with a relatively mild case of “classic Narcolepsy” (Narcolepsy with cataplexy) and very mild sleep apnea.  For me, the main concern was (and is) the EDS (Excessive Daytime Sleepiness).  I only have mild cataplexy, and it mainly happens to me when I am way overtired (namely, late at night or if I miss my naps).

For years, my treatment program was the same as the one given to me when I was diagnosed: the stimulant Cylert (first a low dose, then a bit higher but still not very high) and two scheduled naps.  Having first showed symptoms of Narcolepsy sometime in the second half of third grade, when I went back to school after the summer I was being treated for Narcolepsy (although it wasn’t until mid-Fall that I had my sleep study).

Although I was quite young to have Narcolepsy, I was lucky to have a classic “textbook case”: both my neurologist and my sleep doctor suspected Narcolepsy early on. 

I was also fortunate to be diagnosed within the year (with part of the time being during the summer), as this meant that my studies weren’t effected in the long term.  I had always been an excellent student, and with treatment I was able to go back to being one of the best students in the class. 

Although I still felt sleepy sometimes even with treatment, my medication and naps clearly made a huge difference, especially when it came to school.  I had always been an excellent (albeit a bit perfectionist) student, but before diagnosis I had a terrible time staying awake in class. 

The most telling example I can remember was (yes, the dreaded) yearly standardized tests, which took place towards the end of the school year.  My third grade score (prior to Narcolepsy diagnosis and treatment) was poor to average, as I kept nodding off during the test.  In comparison, my fourth grade score (after diagnosis and with treatment) was so high that the school sent me a letter saying I was being put in the gifted and talented program.  I thought this was amusing in an ironic way, as I got the letter after I had already moved to the East Coast (and thus wouldn’t be attending that school anyway).

So things make more sense, I should probably explain that I have lived part of my life in California, where my dad lives, and part of my life in Connecticut, where my mother lives (and where she grew up).  We all lived in California until my parents got separated(later, divorced) and my siblings and I moved with my mom to Connecticut.  (I was diagnosed about a year before we moved to CT.)

This is why sometimes you will hear me talk about doctors on two different coasts (and for some of the time, a doctor on each coast).  (In fact, my diagnosis was done partly in Connecticut and partly in California because my family always spent part of the summer in CT visiting my mother’s side of the family.)

My freshman year of high school, it was discovered that Cylert can cause severe liver damage in rare cases, which led to me change medications.  (The manufacturer recommended that people on the medication start having VERY frequent blood tests to check for liver damage—I believe the recommendation was to get tested every two weeks, which is ridiculous .  After a number of times getting such frequent blood tests, I finally said enough, no one is drawing more blood from me!, I’m changing medications.) 

Upon the recommendation of my sleep doctor, I decided to try Provigil.  Unfortunately it wasn’t the “miracle drug” it is for some people; it wasn’t enough to keep me awake.

I basically slept for the better part of the month or so that I tried it, which really hurt my studies.  I was at a very difficult private prep school, and it was impossible for me to keep up with the workload and other activities when I felt sleepy all the time.  However, I thought that I had less crazy dreams during my naps and felt a little better, so I continued taking a low dose of Provigil in combination with Ritalin (to replace the Cylert). 

At this point I had switched to seeing only my California sleep doctor (the one who gave me the final diagnosis and original treatment plan), with him treating me long distance but seeing me regularly.  Although it was a bit unusual to combine Provigil with Ritalin, he was okay with it.  This was one thing I liked about my doctor: he knew all about the latest Narcolepsy research and was willing to try unusual combinations of medications, as long as there was no medical concern about doing so. 

I don’t remember the exact story of how I came to change doctors, but I think my dad decided to come with me to visit my old Stanford doctor in California because he wanted to learn more about my sleep disorder (as my mom had always been the one taking me to see the doctors).  I believe that this led to the two doctors corresponding via letter (with my sleep doctor trying to convince my (Connecticut) neurologist to have me try Provigil because I was sleepy).  Then, I ended up leaving my neurologist to just be treated long distance by my sleep doctor. 

I was a very shy and sensitive kid, and while my neurologist had been instrumental in diagnosing me with Narcolepsy, I thought he was really intimidating and hated going to see him.  He also didn’t seem to be doing much to help me: I never tried any medication except Cylert under his care, even when I complained of feeling very sleepy and a problem with talking too fast.  I don’t remember him ever suggesting I try anything else, even though later I would learn that my sleep doctor had written him a letter trying to convince him to have me try Provigil (which back then was the newest Narcolepsy drug).

So I switched to my very friendly, caring, extremely knowledgeable and talkative California doctor, who was okay with treating me over the phone if I had a problem. 

I continued taking these medications until the second half of my freshman year of college, when I decided to stop taking Provigil and just take Ritalin.  (I no longer thought that Provigil really helped me and I wanted to start taking the birth control pill.  Provigil reduces the effectiveness of birth control, although it is not known to what degree.)  My sophomore year, I switched from Ritalin to Concerta (the long acting form of Ritalin), taking 36 mg in the morning and 18 at 3 pm, in the hopes that this would work better to keep me awake.

I will continue the rest of my story in a separate post titled “My Story, Part 2,” as otherwise this would be a REALLY long post.  In this post I will cover my experience with Xyrem, trying Provigil (again), various anti-depressants, and increasing my Concerta dose.  I’ll post this either later today or sometime tomorrow.