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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
 Thanks Kevin
by: Shanna

Thanks for your comment Kevin. I'm glad to know that you and the team there are working on getting the word out about sleep disorders. I can't help but wonder sometimes where my life may have gone had someone thrown a red flag up when I started failing classes back in High School because I couldn't stay awake.

I am currently taking a Behavioral Science course in sleep and sleep disorders. Our textbook for the class is Dr. Dement's, The Promise of Sleep. What a great book. I am preaching his findings to anyone who will listen. My oldest son is 16, he and all his buddies that have come by the house in the past few weeks have gotten an earfull from me about drowsy driving and how dangerous it is. Now if they will just listen???

Look for more posts from me in the near future. I have some awesome cataplexy stories, well maybe most wont think they are awesome, but the fact that I haven't broken any bones or needed stitches yet is quite awesome to me.
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
 The Snowglobes
by: Anonymous

One of the longest episodes with cataplexy happened while I was in the company of my life long friend, Jen. I think the reason we have been friends so long is the fact that we are both a couple of smart-a**es. She comes off with a remark, I throw one back...next thing you know, I'm laid out on the floor like a rag doll. If I added up all of the times cataplexy has hit me, she would have been by my side in well over 50% of them.

She and I were doing a little Christmas shopping several years ago. We were walking through a store, yapping back and forth like we do. I was carring 2 snowglobes, one in each hand. She said something sarcastic and I went to reply and next thing I knew, boom, I was spralled out in the middle of the floor. As always, I can hear what is going on around me, which in it's own sort of way is usually quite comical. A passerby stopped and asked if I was ok, she replied with, "Oh ya, this happens all the time". As I lay there (about 3-4 min) trying my hardest to regain enough strength to open my eyes and use my mouth, I heard another voice...the store manager. In a very frantic voice he asked Jen if he needed to call an ambulance. Once again, very casually, she tells him that I'm fine, that it was a cataplexy attack. Of course he had no idea what she was talking about. She says something about narcolepsy and now the store manager thinks I'm sleeping in the middle of his store. I finally get enough strength back and sit up, trying to let the store manager know that there was no need to call 911. As I am still on the floor, I see something sparkling out of the corner of my eye. The 2 snowglobes that had been in my hands had broken when I fell. I was laying in a giant puddle of sparkley snowglobe water...out I went again. This time (another 3-4 min) I can hear the manager getting smart with Jen, like this was some kind of act or something. I can hear her defending my situation, or trying to anyway. I was finally able to get myself off the floor and apologize to the manager and make my way to the car. It has been my experience if it (cataplexy) happens once, it will soon strike again and I didn't want to be anywhere near that store when it did.

Cataplexy has always been hit and miss with me. I will go for several weeks and have no attacks and then the next thing I know I will have several days where my knees are buckling, my face is sagging, my upper body folds, and eventually I end up on the ground. The only thing that is predictable about it is if it happens once, it will probably happen again that day, usually more severe.
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 01, 2011
 Sholuld be an interesting day...
by: Shanna

This is so what I am talking about in my orginal post. Days like the one I'm about to have.

I had almost a 2 hour drive to take my son to the dentist yesterday then almost a 2 hour drive home. Needless to say, by the time we got to our driveway I was done. It was early evening but I was sure that if I didn't have a little nap the entire evening would be horrible. As a mother of 3, sleeping when my brain is screaming sleep is not always an option. Many evenings I am a grouch, and that is putting it nicely. Sometimes my older 2 will ask my why are you alwasy such a crab mom? My response is always the same, "At this moment my body wants sleep, more than anything, but then I couldn't be mom, so I'm awake and I am crabby". Most of the time I get no response from them. So back to yesterday evening. I came in from the trip and tried to lay down for about 45 minutes. Between being a little jacked up from the stimulant, the phone ringing, my youngest son coming in my room a few times to ask me some silly questions...my nap wasn't much of a nap but it was enough to totally screw up my night time sleep.

I crawled into bed at 10. At midnight I had slept a few times but nothing solid. I looked at the clock again around 2, maybe had had some crazy dreams that had woke me up. When I rolled over and the clock said 3, I actually thought about getting out of bed and doing some homework, obviously sleep was just not gonna happen. I closed my eyes again only to open them an hour later, now it's 4 and I started dreading the day ahead of me. When I woke again at 5 I had had enough. An hour later, here I am, on my 3rd cup of coffee and wondering how on earth I will get through this day.

Three days a week, I drive 4 minutes and I'm at the office. The other 2, which would be today, I have a 40 minute, twisty, turning, on a very narrow road drive. Mornings arn't too bad but that evening drive home, well lets just say I have a few choice spots along the way to pull off and close my eyes and I use them quite often. Today is not the day that I should be behind the wheel for any amount of time...but I will, don't really have a choice.

My doctor doubled my dose of Addaral a few weeks ago but I have yet to try it. It scares me to take that much. I don't think I'm going to have much of a choice today. Stimulant medicine to the rescue. I will probably feel like I want to climb the walls all day. I hate that. And who knows how it is going to effect my sleep tonight, as I'm quite sure the medicine I took yesterday is the root of my horrible sleep last night (usually I'm a hit the pillow, wake up 8 hours later sort of sleeper).

The worst part is I know this is just not good for my body. I can't imagine that sleeping 2 or 3 hours at night and being jacked up on stimulants all day is anyway for a body to be healthy. As I said in my first post, I'm just not sure I can go down this road again.
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 06, 2011
 recent sleep study
by: Shanna

WARNING There is a little doctor bashing in this post.

Last Friday I went and had my 3rd over night sleep study. They hooked me up with all the wiers, glued the sensors to my scalp, had me complete a very personal questionaire, then hooked up the most intrusive, annoying, little monitor, a new one for me. It was this aweful thing that went up my nose then it had this hook that came down and went up under my upper lip. Of all the sensors they had attached to me, this one was by far the worse. Then poof, "Please go to sleep now". Right.

I bet I woke up at least 15 times because either that thing up my nose and under my lip was driving me nuts or it would fall out and the tech would come wake me up to put it back in or I would realize it and fix it myself. Got a call from the doc yesterday. I was informed that I had 7.8 sleep interuptions per hour (I was told under 5 is normal) and they think I have mild sleep apnea on top of narcolepsy. Really. How could they possible tell I have anything? I did not sleep well at all. They did not have me stop taking my 40mg of Adderall before the test, which means they studied this insane version of sleep I have had since I started taking that dose. That stupid nose/lip monitor drove me nuts all night long. I was told that my oxygen levels never dropped but I was brought out of deep sleep 7.8 times an hour. No joke!

Here comes the bashing...My brother in law recently had an overnight sleep study performed. He had decent health insurance and was still slammed with a bill for the study that was almost $2000 out of his pocket. To me that means an overnight sleep study must be in the $4000 or more range. Now, when I started seeing this doctor this time I did not tell him that the narcolepsy had gotten any worse than it has always been for me. I told him that I do not snore in excess. I do not have any symptoms of restless leg sleep disorder. After hearing about the cost of the test and putting some thoughts together in my head, I have wondered: Am I being sponged off of for my insurance money? I only say that because I had a sleep study done in 2005, for the same reason I was told I needed one now, to rule out any new sleep disorders. Nothing new was found in 2005, same results as the orginal sleep study in 1999. I'm not any more tierd than I was then.

I'm just not buying the sleep apnea thing at this point. Maybe I'm in denial, who wants another sleep disorder right. I'm going to do the oh so aweful thing and second guess my doctors diagnosis. I am contacting his office today to request a copy of my file, with the results from the 2005 and 5 day ago sleep studies and compare the numbers myself. If I have sleep apnea then by all means, bring on that CPAP machine but if I don't then I am not going through the bother (and cost)of getting one set up in my home.

Thoughts?
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
Apr 20, 2011
 kitchen knives
by: Shanna

Well, I called the doctor's office yesterday about the severity of the sleep attacks and to voice my concerns over the sleep apnea diagnoses. The procedure to get a message to my docotr is as follows...Call and leave a very detailed message (I always feel like my message to the doctor rambles on a bit, but it specificly asks for details, so that is what they get from me). Five minutes later I had a return call from one of the nurses. When I answer the phone, she asked, "This is nurse so and so from doctor such and such's office, what is going on?". I stated, "I thought my message was pretty detailed". She says back to me, "I don't get to listen to the message, someone types it up and brings it to me, so what is going on?". Rather agrrivated that the detailed message I was asked to leave, and did, was obviously not even listened to, I give her the details. I told her that twice in the past week I have fallen asleep mid sentence, which is very not like me, usually I have some notice and that that "boom, I'm asleep" has happened twice while driving too. Her first reply to me was more of a chastising over me refusing to come back for a 2nd over night sleep study to get the CPAP machine measured. After I explain that I am 2 hours from the center, that I do not even think I need the CPAP, and that I was told I could have an auto PAP brought to the house instead of have another overnight study, she continues on. Her next question floored me. She asked what I do for a living. When I informed her that I am a social worker, her reply was, "So you don't work with kitchen knives or anything?". As my jaw hit the floor, I informed her that no, I do not work with knives but I do have to drive. She said she would pass the message along to my doctor.

Ten minutes later I get a call back from one of the Fellow's that is studing with my doctor. She asks me the same question as the nurse. Once again, the 3rd time now, I tell her how these sleep attacks are coming on with no warning and how that is very not like me. I also tell her that my sleep has improved greatly over the past 2 weeks, the best sleep I've had since starting on the Adderall. She takes her turn about not having the CPAP machine yet (which is being delivered in 2 days, only to satify them). I informed her of how I feel about that study, that 7.8 interuptions seemed rather low considering the circumstances I was under, she blows me off completely. She starts to recap our discussion..."So, you are feeling realy tierd all the time...", I told her, "NO, that is not it at all. The sleep attacks are hitting me harder than I have ever experienced". She was recapping a conversation that we never even had!!! Now I wait for the doctor to call me this morning, hopefully.

I hate to call my doctor. Isn't that horrible? They make me feel like a drug addict. I'm thinking it shouldn't have to be like this.
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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