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Which Doses Will Work This Time? My Narcolepsy Story

by Shanna
(Missouri)

I am a 39 year old woman, I was diagnosed with Narcolepsy in 1999.


My first memories of the symptoms of narcolepsy are from High School, my Jr year, 1988-89. I went from being an A-B student to failing 4 classes that year (it's hard to pass a class when one is fighting to stay awake all hour). I vividly remember goofing around with friends between classes and my knees giving out from under me. I'm sure I went home and told my parents but they probably thought I was just being a silly teenager. I managed to graduate but just barely.

In my early 20's I visited a few doctors; complaining of falling asleep all the time and that my knees would buckle when I would laugh. They all ran the same tests...glucose tolerance and check to make sure that my thyroid was working properly. Of course, all of the results would come back just fine. When I would press them about the knee buckling when I laughed, they would just tell me that they had never heard of such a thing. Every doctor who I saw for the sleepyness came back with the same answer. They all told me that I was just a naturally sleep person.

By 1999 I had 2 little people calling me mom. I was working at a desk job 40 hours a week, driving in rush hour traffic for about an hour each way. Some mornings it was hard to keep my eyes open on the highway. Every evening was a nightmare. I would wake up in parking lots, on the shoulder of the road, in strangers' driveways, and have no idea how I got there. I was constantly late picking my kids up from the sitter and there were several evenings I would get us to our driveway but have no idea how it happened. Lucky for me my job was not too demanding and I had a lot of free time on my hands. One day I decided that I had had enough of the sleeping and driving and did a little search on the internet. The first paragraph I read about narcolepsy just about knocked me out of my chair...excessive daytime sleepyness and knees buckling when one laughs...that was it, what I had been dealing with for over 10 years.

I spoke to my primary care doctor about what I had read and she set me up for my first sleep study. I stayed all night and most of the next day. The MSLT was like a day at the spa for me. Someone coming into my room every few hours asking me to close my eyes and try to go to sleep. I believe my average fall asleep time was 3.5 minutes, entering REM in 4 of the 5 naps. The results of that sleep study got me referred to my first sleep specialist. It was quite clear that I suffered from all 4 symptoms of narcolepsy. This first sleep specialist was so excited to see me for the first time...I was his first patient who had all 4 symptoms. He put me on Provigil ASAP and an average dose of some anti-depressant. I took them both for about a month...still fell asleep all the time. Being the natural sleepy person that I was, I had a funny feeling that it was the anti-depressent that was counter acting the Provigil. Since my cataplexy didn't seem too severe, my doctor agreed to take me off of it. I still fell asleep all the time. The doctor increased my dose of Provigil. I still fell asleep every time I turned around. I began to question that doctor's knowledge of narcolepsy.

I found a new sleep specialist. He doubled my dose of Provigil...it was crazy...like 200mg twice a day. At that point I was bouncing off the walls and falling to the ground every time I laughed or got very mad. My sleep was horrible. The dreams....and being trapped in them...I got to where I hated to close my eyes at night. Once again, I took matters into my own hands. I did a little research and discovered that the sleep specialists I had been seeing were both pulmonary specialists. When I asked why a lung/breathing doctor would treat someone with Narcolepsy, a neurological disorder, I was told that the most common sleep disorder was sleep apnea...a breathing issue...and that all sleep disorders were sort of bundled together...and since the pulmonary specialist saw so many patients with sleep apnea they were qualified to see any one with a sleep disorder. I really didn't like that answer so the search was on for a new doctor, one who knew a little more just about narcolepsy.

I found an awesome neurologist. We finally found the right dose of the right stimulants and a very small does of an anit-depressent to control the cataplexy. Life was good...for a while. When I became pregnant with my third child, I was taken off all my meds. I had to take sick leave from my job on an automobile production line due to the fact that I couldn't stay awake. After my son was born I went back on the same doses of the same meds but this time they didn't work as well. The cataplexy had gotten worse and we just couldn't seem to get the combination right again. I ended up losing my job. I filed for disability but was told that I would be quite capable of working a desk job 40 hours a week. That was hilarious to me. Put me behind a desk and watch me fall asleep in a matter of minutes. Sitting still and not doing much was the worst situation for me to be in. I went off all of my meds and just dealt with the symptoms. I stayed at home with my kids and slept when I needed and tried to land softly when I fell.

Now to the title of my story...About 8 months ago I had to return to work. For the first 4 months it wasn't too bad...I was always on the go and would sneak a nap here and there. For the past 4 months I have been at a desk...asleep half the time. I finally made an appointment with that awesome neurologist. We are trying to find the magical combination for me again. He started me on Adderall ER 20mg first thing in the morning. Three weeks in and my dose has been doubled. He is suggesting Xyrem at night but I am scared to death to try it. Something is going to happen soon though because my sleep is a total nightmare again. I'm almost 40 years old and I just don't know that I can go down this road again.

Comments for Which Doses Will Work This Time? My Narcolepsy Story

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Feb 23, 2011
What an amazing story
by: Kevin Morton

Shanna, your story is incredible. Thanks SO much for sharing it, and I smile thinking of the people who are going to be able to read it and relate to it now.

Your experiences highlight so much of the trouble people have faced with narcolepsy in the last few decades, and the complete lack of awareness of the condition both from peers/family members AND from doctors. That's really at the heart of what this website and Dr. Dement's Sleep and Dreams class is about--getting this information out there so that everyone, from health care practitioners to your neighbor down the street, will have some familiarity with disorders such as narcolepsy, and we can get them treated before one has to sacrifice their alertness and safety for significant portions of their life. Around 1 in 2,000 people have narcolepsy, and we crucially need to get this information out there. Your story alone is a shining beacon in that mission, and thank you very much once more for sharing it.

I sincerely wish you all the best in your renewed endeavor to find the combination of meds that will restore your alertness. If I learn anything that I think may be of use to you I will surely let you know.

Feb 23, 2011
I'll look forward to it!
by: Kevin Morton

I'll look forward to those stories! I'm glad you've been able to utilize The Promise of Sleep in your class. We use another book by Dr. Dement, the Stanford Sleep Book, in our Sleep and Dreams class. It's slightly more technical and thorough, as The Promise of Sleep was done with more of the casual reader in mind, as you might imagine. I'm working right now to make the Stanford Sleep Book more widely available, and if I'm able to I will let you know, in case you're interested!

Feb 24, 2011
not anonymous
by: Shanna

Sorry, the snowglobe story belongs to me. Not that anyone else would want to claim it, I guess I tabbed right past the space for my name.

Mar 03, 2011
3 nights...no sleep
by: Shanna

Obviously I made it through Tuesday, that first day on very little sleep and first day of the double dose of Adderal. Tuesday night was another sleepless one, with my longest stretch of sleep coming after my alarm clock went off...over slept by 30 minutes. Last night I did catch about 2 hours all at one time, with the next 3 spent opening my eyes wondering why I was not sleeping. And here I am again, out of bed before dawn, wondering how I will get through the day again.

I am pretty sure it is the doubling of the Adderal that has kept me up the past two nights, not real sure what happened on Monday night that made me unable to sleep. I am scheduled for an overnight sleep study on Friday, to rule out any new sleep issues, but I am seriously thinking about canceling it...how on earth will they get a accurate reading of my sleep when I am not sleeping?

My poor sister, I guess this is what she goes through most nights. She has insomnia. But me, I'm suppose to be on the other end of the spectrum. I'm not sure which is worse, not being able to stay awake or not being able to go to sleep but I'm here to say they both suck. I think a call to my doctor first thing this morning is in order.

Apr 12, 2011
Sounds Similar
by: Francesca

I too, have narcolepsy, which has been worsening. Originally diagnosed with sleep apnea, undiagnosed, confirmed narcolepsy with polysomnogram and 4/4 SOREM periods with sleep latency of 3.2minutes. Now have sleepwalking on a fairly regular basis (3-4x per month, hormone-related) and then I developed bronchitis and slept walked every night for nine nights until the infection cleared with antibiotics.

Point being, during the fourth or fifth sleep study over the last 14 years, I not only have mild obstructive sleep apnea but have notable central sleep apnea as well especially in the supine position.

Sleep doc has decided to focus on the narcolepsy, that being the most severe. But the sleep apnea, for me, needs treatment as well. It's like saying OK we'll set the broken arm and let the broken leg go unhealed. Seeing new specialist. Unbearably tired and almost 40 myself. Almost burned down the house during sleepwalking and almost poisoned myself. All aspects deserve help and peace of mind.

I do have hope, faith, and resourcefulness working on my side. All the best to the rest of you.

Apr 12, 2011
Insurance Sponging
by: Kevin

Hey Shanna. Thanks a million for continuing to share your thoughts. I couldn't believe what I was reading in the latest doctor story--sounds like a not-too-valuable experience. I wish I had some experience to share with you in response, but I'm afraid I don't. What I can say though is that regardless of what any doctor's office is being paid, you should be given a much more worthwhile experience than what happened if you are to be putting in an ounce of your time and effort. What do I suggest? Being impulsively open with your feelings and sharing your thoughts about the efficacy of the test with the doctors themselves. I'm afraid I'm sure some of it would fall on deaf ears, but here's hoping that you find a team who listens to you when you give them the opportunity to--and doesn't give you reason to express such concerns in the first place.

Cheers,
Kevin

Apr 16, 2011
crazyness
by: Shanna

Crazyness, no other word can even come close.

I am finally sleeping better, I guess my body is getting used to the current dose of Adderal. So here is the crazy part. Twice this week I actually fell asleep at my desk...with a client on the other side. Right in the middle of conversation. Never...ever...has that happened to me. I have always been able to feel the sleepyness coming on, even if it is only a few moments, I have always been aware that my eyes are about to close. But not these 2 times this week. One second I am doing my job...then poof, I open my eyes and I was totally confused as to what just happened, crazyness. Take in to account that both times it happened it was mid afternoon, about 8 hours after I took my 40mg of extended release Adderal. The rest of my work day and evenings went well, no more sleep attacks.

As this is my first experience with Adderal, I can't help but wonder if there is some connection here. First time to try a med and first time my symptom has ever been so bad? If by chance anyone has some insight or a simular experience, please share. In the meantime I will google it and see what I can come up with.

Apr 19, 2011
reversed
by: Anonymous

I had similar symptoms when I was younger. I am now 60 and about 2 2 1/2years ago my symptoms reversed. I can no longer fall asleep unless I take a sleep med, It takes 1 1/2 hours to fall asleep and I wake up 4 hours after I take the sleep med- so thats 2 1/2 hours. I must immediately take another sleep pill and hope I can sleep again. I feel half asleep when I get up and have to take dexedrine, if not I become physically sick and have to stay laying down. I allow myself midnight until noon as bedtime-- have to rest that time while I am not asleep

May 27, 2011
Apnea and Narcolepsy
by: Audarah

If you aren't getting the help you need from your sleep doctor ( or are being brushed off and aggravated instead of helped), you need to find a new doctor. It is very possible to have sleep apnea, insomnia AND narcolepsy. I know, as I have all of them myself. The CPAP isn't that bad ( and my sleep apnea WILL knock me out mid sentence, btw!). I think it is the combination of the apnea and narcolepsy that causes the sudden sleep attacks. If you aren't aware what is going on, its not a cataplexy attack- so it is likely the combination of the above.

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Welcome! This site is continuously being created by students of Dr. William C. Dement's Sleep And Dreams course at Stanford University.

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