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#1 smg08009

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Posted 17 July 2012 - 12:18 PM

Hi! I'm a 23 year old gal who was tentatively diagnosed with narcolepsy with cataplexy a few weeks ago and would love to hear from anyone on this site about what I've been going through. Thank you for reading and sorry this is so long!!!

Four years ago I was in an accident (run over by a pick up truck on a sidewalk at school...I was struck in the back of the head by the bumper and knocked out for a few seconds) and diagnosed with a grade 2 concussion. Since then I've had more trouble with short term memory, concentration, learning new information, I began experiencing auras with my migraines and episodes of "blanking out" during conversations. I've had a normal EEG and a normal neuropsych evaluation (which was pretty much useless since I hadn't had one before the accident so there was nothing to compare it to).

I've experienced sleep paralysis sporadically (once every few years) throughout my life, but about 18 months ago I started having multiple SP episodes a night. I have a very clear memory of when the episodes got bad because that morning I had "fainted" at breakfast while reading the paper. I was seated at the kitchen table reading an article about a girl my age who had been run over by a train. I recall having a very strong emotional reaction to the story, and then hearing an increasingly loud roaring noise, a strange feeling of dryness throughout my body, intense nausea and seeing spots similar to my migraine auras. According to family members, I fell over sideways and hit my head on the windowsill. I was unresponsive for a few seconds, but upon waking I was fine aside from slight weakness in my right arm. I spent the day in the ER being checked for signs of seizures or a stroke, but was sent home with a paper about low blood sugar and fainting. A few things bothered me about this episode:
1. I know it wasn't low blood sugar because I'd already gorged on Christmas cookies and orange juice.
2. I was seated (and had been for about fifteen minutes prior to the incident).
3. I had a brief, but intensely vivid dream while unconscious...though I could hear my family and feel myself being moved. It was very odd, like being in two worlds at the same time.

That night I had two or three very scary SP episodes. Since then I've had up to 6 episodes a night, and haven't gone a full week without an episode. At first I thought I was having seizures in my sleep, or asthma attacks, or something because I knew this wasn't normal. The episodes seem to snowball on each other...I'll wake up from one overwhelmingly sleepy, somehow start dreaming again without noticing I'm asleep and have another SP episode over and over again. I get them falling asleep...I get them waking up...I get them without fail when napping. My primary care doctor told me it was stress, so I started reading to clear my head for 30 min before bed. Didn't work. Got a prescription for 0.5 mg lorazepam. Didn't work. Changed sleeping positions (several times!). Didn't work. Changed bedrooms. Didn't work. "Gain a few pounds, you're underweight." Didn't work.

I mentioned the episodes to my pulmonologist (who's also a sleep specialist) last summer and was given a PSG. Surprisingly the results came back abnormal. I spent twice the normal amount of time in stage 1 sleep, only had 10 minutes of REM as well as shortened stage 3 and 4 sleep, and had sleep disordered breathing (more episodes during REM, he hypothesized my body was avoiding REM because it was more uncomfortable). He diagnosed me with extremely mild OSA due to an oversized soft palate and set me up for a CPAP titration study. The titration study was the same as the first, and they were unable to find a good pressure for me. The summary noted "THIS IS NOT AN IMPROVED SLEEP STUDY," but I was given a CPAP anyway. I've been 100% compliant with the machine, but the SP episodes have continued. For the first few months I felt better rested with the CPAP, but now I'm fighting sleep by 11 a.m. in spite of the 8+ hours of sleep I get.

All of this led me to my third neurologist, who tentatively diagnosed me with narcolepsy in the first five minutes of my visit. He said I've probably had it since early childhood, but it was exacerbated by the concussion...and the weird "fainting" episode was probably cataplexy. The false awakenings and vivid dreams I have immediately prior to or during the SP are probably hypnogogic and hypnopompic hallucinations. (I've been hallucinating and haven't noticed?!) I'll have trouble distinguishing what happened before I fell asleep or just after waking from my dreams. In accordance with this doctor's orders, I've stopped taking the lorazepam, drinking coffee, and haven't touched anything with artificial sweeteners.

(Also, my 21 year old sister frequently experiences SP, but to a lesser extent than I do. She is also using a CPAP but continues to have trouble staying asleep at night and is exhausted during the day. My father has severe OSA, but of the three of us only he is overweight.)

I'm being sent for my 3rd PSG and an MSLT next week and really don't want to be set up for more disappointment. I'm afraid that the MSLT will come out normal and I'll leave without an explanation for the SP. But at the same time, I'm scared of what a narcolepsy diagnosis may mean.

Do my first PSG results sound anything like narcolepsy?
Does the fainting episode sound like cataplexy?
Are there any other treatments for SP besides antidepressants or Xyrem? (I was hospitalized for serotonin syndrome after taking 5 mg of celexa, so anything that touches serotonin is out...and I have an awful fear of vomiting so xyrem terrifies me.)
If I am diagnosed and choose not to take medication, will I lose my driver's license?

#2 shakysleppy

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Posted 18 July 2012 - 10:32 AM

I am a 32 year old male recently diagnosed with Narco and Cataplexy as well as sleep apnea. I first thought it was fainting or seizures I was having. I had multiple EEG's done, sleep tests, blood work, cat scans, etc.... I found a doctor who had seen it before and realised it was cataplexy once he started asking me a battery of different questions about my daily habits, routines, sleep patterns, etc... It is rather scary in the beginning not knowing what is wrong with you, but most importantly is finding a doctor that knows what they are doing and whta to look for and what tests to run and questions to ask. I know in the beginning I would get to laughing or pissed off and my body would start twitching and shaking and I would fall to the ground for a few minutes then I would get up and be fine for a while, until i had the first episode sitting down eating dinner and laughing and i had a episode and fell out of the chair. Cataplexy feeds off your emotions mainly. I am currently on Xyrem at night for the cataplexy, which has been awesome, i only have small twitches periodically, no more falling or anything like that. I am on Aderol for the Narco and sleep attacks during the day. Some days it works and some it don't. I wish you the best of luck and i hope this helps you. if you have any questions feel free to ask.
















Hi! I'm a 23 year old gal who was tentatively diagnosed with narcolepsy with cataplexy a few weeks ago and would love to hear from anyone on this site about what I've been going through. Thank you for reading and sorry this is so long!!!

Four years ago I was in an accident (run over by a pick up truck on a sidewalk at school...I was struck in the back of the head by the bumper and knocked out for a few seconds) and diagnosed with a grade 2 concussion. Since then I've had more trouble with short term memory, concentration, learning new information, I began experiencing auras with my migraines and episodes of "blanking out" during conversations. I've had a normal EEG and a normal neuropsych evaluation (which was pretty much useless since I hadn't had one before the accident so there was nothing to compare it to).

I've experienced sleep paralysis sporadically (once every few years) throughout my life, but about 18 months ago I started having multiple SP episodes a night. I have a very clear memory of when the episodes got bad because that morning I had "fainted" at breakfast while reading the paper. I was seated at the kitchen table reading an article about a girl my age who had been run over by a train. I recall having a very strong emotional reaction to the story, and then hearing an increasingly loud roaring noise, a strange feeling of dryness throughout my body, intense nausea and seeing spots similar to my migraine auras. According to family members, I fell over sideways and hit my head on the windowsill. I was unresponsive for a few seconds, but upon waking I was fine aside from slight weakness in my right arm. I spent the day in the ER being checked for signs of seizures or a stroke, but was sent home with a paper about low blood sugar and fainting. A few things bothered me about this episode:
1. I know it wasn't low blood sugar because I'd already gorged on Christmas cookies and orange juice.
2. I was seated (and had been for about fifteen minutes prior to the incident).
3. I had a brief, but intensely vivid dream while unconscious...though I could hear my family and feel myself being moved. It was very odd, like being in two worlds at the same time.

That night I had two or three very scary SP episodes. Since then I've had up to 6 episodes a night, and haven't gone a full week without an episode. At first I thought I was having seizures in my sleep, or asthma attacks, or something because I knew this wasn't normal. The episodes seem to snowball on each other...I'll wake up from one overwhelmingly sleepy, somehow start dreaming again without noticing I'm asleep and have another SP episode over and over again. I get them falling asleep...I get them waking up...I get them without fail when napping. My primary care doctor told me it was stress, so I started reading to clear my head for 30 min before bed. Didn't work. Got a prescription for 0.5 mg lorazepam. Didn't work. Changed sleeping positions (several times!). Didn't work. Changed bedrooms. Didn't work. "Gain a few pounds, you're underweight." Didn't work.

I mentioned the episodes to my pulmonologist (who's also a sleep specialist) last summer and was given a PSG. Surprisingly the results came back abnormal. I spent twice the normal amount of time in stage 1 sleep, only had 10 minutes of REM as well as shortened stage 3 and 4 sleep, and had sleep disordered breathing (more episodes during REM, he hypothesized my body was avoiding REM because it was more uncomfortable). He diagnosed me with extremely mild OSA due to an oversized soft palate and set me up for a CPAP titration study. The titration study was the same as the first, and they were unable to find a good pressure for me. The summary noted "THIS IS NOT AN IMPROVED SLEEP STUDY," but I was given a CPAP anyway. I've been 100% compliant with the machine, but the SP episodes have continued. For the first few months I felt better rested with the CPAP, but now I'm fighting sleep by 11 a.m. in spite of the 8+ hours of sleep I get.

All of this led me to my third neurologist, who tentatively diagnosed me with narcolepsy in the first five minutes of my visit. He said I've probably had it since early childhood, but it was exacerbated by the concussion...and the weird "fainting" episode was probably cataplexy. The false awakenings and vivid dreams I have immediately prior to or during the SP are probably hypnogogic and hypnopompic hallucinations. (I've been hallucinating and haven't noticed?!) I'll have trouble distinguishing what happened before I fell asleep or just after waking from my dreams. In accordance with this doctor's orders, I've stopped taking the lorazepam, drinking coffee, and haven't touched anything with artificial sweeteners.

(Also, my 21 year old sister frequently experiences SP, but to a lesser extent than I do. She is also using a CPAP but continues to have trouble staying asleep at night and is exhausted during the day. My father has severe OSA, but of the three of us only he is overweight.)

I'm being sent for my 3rd PSG and an MSLT next week and really don't want to be set up for more disappointment. I'm afraid that the MSLT will come out normal and I'll leave without an explanation for the SP. But at the same time, I'm scared of what a narcolepsy diagnosis may mean.

Do my first PSG results sound anything like narcolepsy?
Does the fainting episode sound like cataplexy?
Are there any other treatments for SP besides antidepressants or Xyrem? (I was hospitalized for serotonin syndrome after taking 5 mg of celexa, so anything that touches serotonin is out...and I have an awful fear of vomiting so xyrem terrifies me.)
If I am diagnosed and choose not to take medication, will I lose my driver's license?



#3 Guest_tabster1_*

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Posted 18 July 2012 - 01:12 PM

DUDE! We have so much in common I'm a little freaked out! I am almost 23, also a traumatic brain injury survivor (although mine is classified "severe" I was in a coma for a week...long story) And I ALSO had these weird episodes you are describing. I call them my "falling down things." They randomly started up and I had them like 2-3 times a week. Put me in the hospital, ran every test known to man, sent me to 4 different doctors, and nobody knows. Then asked my (2nd) sleep doctor and he said it sounded like cataplexy. If you can hear everything around you happening. It was strange I would get a weird "aura" too and know it was going to happen, everything would sound either extremely loud or kind of unreal, sometimes a weird roaring noise, and my body would feel "heavy", and get this weird tingle in the back of my neck. The theory is that it was anxiety/stress related because I would feel extremely nervous before it happened. I've always struggled with panic attacks so we think that is the "trigger". They seemed to cluster up which I think was the anxiety feeding off itself and me constantly worrying that it would happen again, therefore making it happen. And I've fallen out of my chair multiple times but they still tried to tell me it was a blood sugar/blood pressure thing.

So it sounds to me you read that story about the train, felt disgusted/freaked out/anxious which lead to nausea and subsequent cataplexy. One thing, the weird dream you had when it happened. Was it a dream, or was it more of a feeling like "everything is so unreal". That always happens to me.

Anyway I'm assuming that you have also always struggled with Excessive Daytime Sleepiness? You can't really have narcolepsy without that.

Oh and one thing about EEGS that I learned. Did they put you on a 24 hour one? I read they are pretty much useless unless they can "catch" an episode while you are all hooked up. They put me on a 24hour video monitored EEG and caught an episode. No change in brain waves at all. But yeah I would ask about that because seizures are common in people with traumatic brain injury. They can develop years later.

About the sleep results - I'm not a doctor! - but I always thought in narcolepsy you went into REM fairly quickly, and jumped around the different stages. I know for the nap test you have to fall asleep in a certain amount of time and enter REM in a certain amount of time. Although a lot of people don't think the test is that accurate. *shrug*

I don't know if they can take your license away, I would assume you would have had to be in a wreck first or your doctor would have to say it was severe enough that you would be a danger to yourself or others. My experience is doctors are hesitant to tell someone they can't drive. My mom was very concerned about that after my head injury and took me to a bunch of doctors who did driving evaluations, but they never said one way or the other. Didn't say I was safe, but didn't say I was dangerous either.

#4 shakysleppy

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Posted 18 July 2012 - 01:28 PM

Tabster is right in what was said it is weird how you know its coming and can hear things but not much you can do about it. I know i fall into REM stage in 4 min, but my EEG's never showed anything. The sleep tests and nap tests is what showed mine along with the sleep apnea. Excessive daytime sleepiness is the biggest problem i have. the cataplexy is controlled through Xyrem, the EDS is trying to be controlled through Aderol.

#5 smg08009

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Posted 18 July 2012 - 06:25 PM

Thank you both so much for taking the time to read and reply to my ridiculously long post. :)

@tabster1: Wow! It's crazy how much we have in common! (And pretty cool that we're so close in age!) I've also had panic attacks, but they were always about feeling sick to my stomach (I'm emetophobic.). The story about the girl being hit by the train reminded me of my accident. I can't quite find the words to describe how it made me feel other than extremely emotional. While "unconscious" (I was totally aware of what was happening in the kitchen) I dreamed I was listening to a man giving a speech, and I was seeing blobs of colors everywhere and had this weird feeling of detachment...so yeah I guess it was an everything is unreal sort of feeling lol. As for the EDS, I never really thought I was sleepier than anyone else until college. I was the kid who did everything in high school, but I was absent a lot because I was always exhausted. Then in college I was diagnosed with depression/seasonal affective disorder after complaining of all the physical symptoms (but I didn't feel sad!) and given ritalin after the bad celexa episode. It worked wonders for me...I was able to focus in class...I didn't feel like I needed a nap...I was doing stuff instead of lying on the couch. I stopped taking the ritalin after the fainting/cataplexy episode because I was worried I was having a cardiovascular reaction. I do have a habit of falling asleep in weird places (the front lawn during a fireworks show) and I'm pretty sure I've had sleep attacks. Once I had to keep biting my cheek and pinching myself to stay awake during a 20 min drive home. I only had the 45 min EEG and my neurologist basically told me "You're fine. It's just stress." I did jump around the stages of sleep during my initial PSG, but the REM is what has me worried. :(

@shakysleepy: That's awesome you've had such a good response to the xyrem! Did you have any of the weird side effects? I've also read about people getting a hungover feeling the next day. I don't know if you've experienced SP/HH, but if you did has the xyrem helped it?

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Posted 21 July 2012 - 11:59 AM

Yup I got the emetophobia too. Made me stop eating entirely for a few months and vegetarian for over 8 years, until I realized you can get food poisoning from any food, not just meat. Someone put me on Cymbalta and it really really helped.( Although I don't recommend it because it is pretty much impossible to go off of. SSRI withdrawal syndrome is almost as bad as going off hard drugs according to my doctor. I tried a few times and I thought I was dying.) I get anxious thoughts that get stuck in like a loop, and I had started developing compulsions too. Really, really weird things I had to do because if I didn't I would get sick. They come back if anyone around me is sick or if I hear about a virus going around. Which also triggers the narcolepsy.

During my episodes I never dreamed anything. I would hear everyone kind of at a distance, and it would sometimes *feel* like a dream but if I talked to people about it later they would confirm that everything I heard actually happened. Maybe you fell asleep for a second? I dunno it's weird that you knew you were dreaming and could hear everything else going on around you at the same time.

I had a bunch of episodes all really close to each other over a 6 month period. Then they mysteriously stopped. The only thing I can think is the first one happened and it freaked me out, which made me anxious all the time and made them keep happening. I did notice they were more likely to happen if I did not sleep enough the night before, which I think is common in PWN. The less sleep I get, the more emotional and stressed I am. Then again, I had almost a nervous breakdown at one point and I didn't have any "full" episodes. More of a heavy weakness/shaky feeling but no completely falling over. So either it's not stress related, or they are triggered by multiple factors I'm not aware of yet, or it's something else entirely. I think it's possible that when I feel the warning signs I'm not letting myself get so worked up over them and it lessens the severity. I dunno. We stopped trying to figure it out.

I don't think cataplexy affects everyone the same way. The doctors try to label everything, and then they get confused when nothing fits neatly into one label. But I think there are quite a few people with "atypical" symptoms. After going to so many doctors I finally realized they call it "practicing medicine" for a reason. It's mostly a ton of educated guesses.

Do you dream a lot? My sister and I both have narcolepsy and we can lay down for a 15 minute nap and start dreaming almost immediately. That's one way you can tell if you are going into REM too early. Also, if you put us in a dark quiet place, it doesn't matter how much we slept the night before, if we haven't taken our medicine we will fall asleep right away.

Let us know your sleep study results. (and I apologize for the absurdly long reply)

#7 smg08009

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Posted 29 July 2012 - 08:05 PM

Well, I had the PSG/MSLT...and I really have no idea how it went. I was up all night the night before the test worrying about it...so I slept really well on the PSG :D . The first nap was really strange. I think I was having auditory hallucinations (again) because I kept hearing this loud zap noise whenever I felt I was falling asleep. I'm pretty sure I fell asleep/went into REM because I had sleep paralysis right before the tech woke me. The 2nd, 3rd, and 4th I told the tech I wasn't sure if I slept or dreamed...I was having weird thoughts while trying to sleep...like I would suddenly remember I was napping and none of what I was thinking about was happening...so I may have been dreaming. The last nap I'm 90% sure I didn't sleep. After the first nap I just felt really anxious about falling asleep again. :(

When I left the sleep center I was pretty upset, thinking my anxiety had kept me from sleeping on the other naps and would keep me from being diagnosed, but I've read other people have been sure that they didn't sleep only to find out that they did.

Last night I had the worst sleep paralysis episode of my life. It was one of those "snowball" effect things where I'll have one episode after another after another. I had had a glass of wine and dozed on the couch for a bit. Then when my boyfriend and I went up to bed the sp started. I didn't have my CPAP with me, so the sensation of not breathing made me come out of them a lot more dramatically than usual, which scared the crap out of my boyfriend. In the span of 15 minutes I had more episodes than I could count, with the zapping noise, and auditory hallucinations of kids talking and someone making annoying duck noises (what the hell is going on with my brain?!).

My sister's being tested for narcolepsy too. We were discussing our symptoms the other day and she reminded me of our weird "knee giving out" thing. Sometimes we'll be walking and suddenly one of our knees will just not support our leg and we kinda fall over. I got sent for physical therapy for this when I was 11, but still have it. In fact, the other day I was out for a run and it happened. I fell and cut up my legs pretty bad. I'm starting to think it's cataplexy because in the past it's happened when I'm laughing with friends, and the other day it happened when I saw I'd beat my goal time for the day and felt really excited.

I don't see my sleep specialist 'til Thursday, and my neurologist on the 16th...so I guess it's just a waiting game now.

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Posted 01 August 2012 - 08:57 AM

Well, I had the PSG/MSLT...and I really have no idea how it went. I was up all night the night before the test worrying about it...so I slept really well on the PSG :D . The first nap was really strange. I think I was having auditory hallucinations (again) because I kept hearing this loud zap noise whenever I felt I was falling asleep. I'm pretty sure I fell asleep/went into REM because I had sleep paralysis right before the tech woke me. The 2nd, 3rd, and 4th I told the tech I wasn't sure if I slept or dreamed...I was having weird thoughts while trying to sleep...like I would suddenly remember I was napping and none of what I was thinking about was happening...so I may have been dreaming. The last nap I'm 90% sure I didn't sleep. After the first nap I just felt really anxious about falling asleep again. :(

When I left the sleep center I was pretty upset, thinking my anxiety had kept me from sleeping on the other naps and would keep me from being diagnosed, but I've read other people have been sure that they didn't sleep only to find out that they did.

Last night I had the worst sleep paralysis episode of my life. It was one of those "snowball" effect things where I'll have one episode after another after another. I had had a glass of wine and dozed on the couch for a bit. Then when my boyfriend and I went up to bed the sp started. I didn't have my CPAP with me, so the sensation of not breathing made me come out of them a lot more dramatically than usual, which scared the crap out of my boyfriend. In the span of 15 minutes I had more episodes than I could count, with the zapping noise, and auditory hallucinations of kids talking and someone making annoying duck noises (what the hell is going on with my brain?!).

My sister's being tested for narcolepsy too. We were discussing our symptoms the other day and she reminded me of our weird "knee giving out" thing. Sometimes we'll be walking and suddenly one of our knees will just not support our leg and we kinda fall over. I got sent for physical therapy for this when I was 11, but still have it. In fact, the other day I was out for a run and it happened. I fell and cut up my legs pretty bad. I'm starting to think it's cataplexy because in the past it's happened when I'm laughing with friends, and the other day it happened when I saw I'd beat my goal time for the day and felt really excited.

I don't see my sleep specialist 'til Thursday, and my neurologist on the 16th...so I guess it's just a waiting game now.


Well let us know! And also from what I've read, a lot of people don't put too much stock in those nap tests. A lot of PWN fail those the first few times around. So it's not completely fool-proof, and if you fail it it doesn't necessarily mean you don't have narcolepsy.

#9 smg08009

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Posted 02 August 2012 - 09:48 PM

Well, I officially have N w/C. My PSG showed mild apnea, controlled by my CPAP with a much closer to normal distribution of sleep stages. My MSLT was not so great. (You know it isn't good when the doctor starts talking in that kinda creepy really gentle voice.) My mean sleep latency was 7.1, with 2 SOREMS (one 2.5 min after sleep onset, the other 4.5 min after sleep onset.)...and the SP that happened during the first nap was "technically cataplexy."

The doctor really took his time with me talking about what this means for my future, but I'm still so confused and...upset? My family seems upset and dismissive at the same time. The doctor gave me a prescription for nuvigil and a bunch of samples to try until my insurance approves the script. He told me to notify my nursing school so they can accomodate me, but I've heard from other people that I absolutely should not tell them unless absolutely necessary because they can kick me out of the program with some other excuse. When I asked if the cataplexy would worsen over time he paused and reluctantly nodded. He made it sound like eventually I'll be on xyrem (really really don't want it unless nothing else works), but for now I'll be trying the nuvigil with ritalin as needed.

While I'm happy to know that I'm not lazy, or getting stupider, or crazy...I'm pretty overwhelmed with the diagnosis. I'm feeling very isolated, scared, and sad. I've told 3 close friends since I saw the neuro last month...the first outright laughed because she thought I was joking (and has continued to crack jokes), the second kind of rolled her eyes and tried to rationalize my symptoms ("How do you KNOW you're not asleep during these 'sleep paralysis' episodes? Maybe you're just dreaming you're paralyzed."), and the third didn't react at all. I feel like no one understands how much this has impacted my life, and it really upsets me that my family wants me to hide it. :(

#10 shakysleppy

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Posted 03 August 2012 - 12:52 AM

I know how you feel, it really does impact your life a great deal and most people will never understand. That is one reason I have come to this site as well as sleep connect site in order to talk and meet people who do understand and that will not laugh and make jokes at my expense. It is a disease that can't be cured only some what controlled and it's a never ending life changing problem that we have to try to overcome and find a routine that works beat for us individually.

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Posted 04 August 2012 - 01:50 AM

At least you know what's wrong now. It's so frustrating to be diagnosed with everything under the sun first and nothing helps til they finally stumble on Narcolepsy. I actually got sent to a bunch of doctors after my diagnosis for what turned out to be cataplexy all along. The Nuvigil, really, really helped me. Don't be scared to take it. (I saw you mention it in your other post but I'm just replying to this one). I got a massive, killer headache every day for 2-3 weeks when I started it but they did go away eventually. I also lost my appetite, so make sure you eat small meals throughout the day because otherwise you can go the whole day without eating and it makes you feel awful.

Don't be scared to use the accommodations!!! I don't know how it is for nursing school specifically, but I can't see how they could kick you out. (I'm doing veterinary technology and no one has said anything about how it could be a problem for me, AND I have a lot of other problems on top of that). I got a private room with mine and also get priority scheduling so that I don't need to take early morning ones. My doctor wrote a really fantastic letter to the school disability office. The accommodations are there to help you succeed.

Also, the cataplexy varies from person to person. Some people find it gets worse over time, in others it gets better.

And yeah, people are kind of weird about narcolepsy. Especially the cataplexy. Most people think you are faking or being overdramatic. I had a few people tell me that I read about the symptoms and made them happen to myself. Don't know how you can do that when you're asleep but whatev.....the only thing you can do about that type of attitude is to either ignore it or try to educate them. That's how I finally got through to my dad that I wasn't just a lazy bum.

#12 Lang1725

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Posted 08 August 2012 - 04:42 PM

I haven't done too much research on Xyrem because, quite honestly, it kind of scares the crap out of me. But based on the prescribing information, the incidence of vomiting seems fairly low. The highest number I see is 22.9%, but that was on the highest dose and out of a patient population of only 35. The more realistic numbers seem to be between 1% and 8% based on the dose. So I wouldn't worry about it too much (in regards to the emetophobia). Although, like I said, I've avoided doing a lot of "real world" research, so the incidence may be much higher. I'm more afraid of the whole GHB aspect.

One of the other posters suggested an antidepressant. If the phobia is controlling your life, then that is certainly a viable option. I wouldn't be too afraid of Cymbalta (although everyone is different). I've been on almost every SSRI and SNRI that they make. Personally, the first week or two are usually pretty bad, but if you can get through those you're golden. I have not had any problems coming off of them. (But, again, that's me.) As someone who has been treated with these drugs for years (plus the fact that I'm a medical writer and have my degree in psychology) my number one suggestion is to also get a script for a benzo like Xanax or Klonopin. Try taking it for the first week or two while on the antidepressant, and then try taking it for the week or two while weaning yourself off. That will usually make the process much easier. HOWEVER, I do know that Xyrem and benzos are contraindicated, so that's something you'll want to discuss with your doctor. You may be able to take them together, just not at the same time. I'm not sure. If the fear of vomiting is only minor and not affecting your day-to-day life, then a benzo without an antidepressant may do the trick. You can also try a drug called Inderal or one called BuSpar. They are much safer and are not habit forming. Just make sure your doctor knows EVERYTHING that you're taking (including over the counter meds, vitamins, and supplements) to make sure nothing is interacting. The Inderal in particular messes with your blood pressure, which can be dangerous if you're on a stimulant. I think BuSpar is fairly safe but, unfortunately, I didn't have any luck with it. And I was so hopeful. :(

My test is a week from today and, if I'm diagnosed, I have decided that I'm willing to at least give Xyrem a shot. I spoke to a therapist this morning and she's going to wait to make any decisions about meds until after the sleep test, but her feeling is that if I can function ok on the narcolepsy meds then I may not need an antidepressant at all. That would be awesome. Not that I want to be diagnosed with narc, but all roads are pointing in that direction. And as someone who has suffered for over a decade to find the right treatment for my "issues," I'm thinking that maybe narcolepsy is a better option than this whole mystery panic, anxiety thing that I've never been able to fully control. It's not like my illness is new. I've been "sick" since I was in my early 20s. Now it just may have a different name. If I look at it that way, it makes me feel slightly better.

#13 Lang1725

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Posted 08 August 2012 - 04:51 PM

BTW If you're taking anything that's causing nausea, there are things you can take to combat it. I'm a big fan of ginger and peppermint (even just the smell of it can help). I always carry Dramamine with me too (although I'm not sure if that's safe to take with everything). That was always my secret hangover cure because it eliminates the nausea and helps you sleep.

#14 Megssosleepy

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Posted 10 August 2012 - 11:57 AM

So I just wanted to let you know a little about Xyrem, I was so scared to take it myself and started only because all the stimulates were making me crazy. (I am currently still taking the fast acting Adderall 2 to 3 times a day)

I started Taking Xyrem on Saturday so what like... 6 days ago, the first night was just terrible I cried all night saw some mild hallucinations. But, I tried it again the next night and slept pretty darn good. I have only had a very mild headache in the morning and a little bit of a stomach ache. While taking Xyrem I fall asleep at what I would consider a normal time, and have had some really strange dreams (but nothing scary and no SP!) I am really excited to continue to take it mostly because not waking up a million times a night is just wonderful. I am hoping to see some change in my EDS, but only time will tell.

Also, as Lang1725... it is really hard for people who do not have N to understand and trying to explain never seems to really work. Every now and then I will be talking to a friend who knows and I will say something like I slept 12 hours last night and was still falling asleep behind the wheel, and something will click... like wow that really does suck. I do steer clear from telling most people, I normally just say I have a sleeping condition lol. I come on here a lot because like you I am pretty upset about this diagnosis and how people have responded. Its nice to know others feel the same and understand what you are going through.

Good luck with the new meds... remember keep trying them until you find one that works for you. None of them should make you feel worse then when you don't take them!!

#15 smg08009

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Posted 22 August 2012 - 09:13 PM

Hey everyone! Sorry for the delay in getting back to you. I had a pretty rough few weeks after my diagnosis and just kinda had a pity party...especially after my dad told my sister that this was all from us being too stressed and if we'd relax it would go into remission. We brought him with us to my sister's PSG/MSLT follow-up last week so the doctor could explain that this was the result of a lack of a neurochemical and is out of our conscious control. The doctor really took his time answering my dad's questions, and discussing treatment with my sister and I. As we were leaving, my dad says he thinks xyrem is our best option and "I hope you both heard, he said this IS from stress." I'm starting to accept that even though he spent most of his life battling severe sleep apnea, he's never going to understand how narcolepsy feels.

My boyfriend had to deal with more than a few crying spells, preoccupation with researching medication interactions and side effects, and just plain old grumpiness. The day I was diagnosed we went to my bf's friend's house for a dinner party. One of the guests would not stop saying "oh my GOD...I am SO TIRED. YOU DON'T EVEN KNOW. " This made me so ridiculously angry that I had to excuse myself from the table. And it wasn't even something that SHOULD make me angry!

When I was waiting for my MSLT results, I decided that if my "maybe" diagnosis of N turned out to be a "definitely" I'd turn it into something positive and work on raising awareness. However, my parents are insisting that I keep this to myself to avoid issues with future employment. Keeping my narcolepsy a secret has made me so angsty I feel like a teenager again. My boyfriend's stepmom and stepsisters have made comments about how if they hadn't known me for so long they'd think I was a "mean girl" because I'm so quiet. This has really stuck with me, and I know other people must think the same. When I try to go out with friends on Friday or Saturday nights, I have so much trouble just staying awake that I can't even pretend to concentrate on a conversation. I know this makes me look bored, or rude, or snobby and I hate that I can't explain what's really going on. I can't think of ANY other condition that is so misunderstood that it would have to be kept secret EVEN when someone is working in healthcare.

I'm trying to not let it bother me that no one who has been told about my condition has asked how I'm doing. Everyone outside of my immediate family has been very nonchalant about the whole thing.

As of now I'm trying to remember that no one is every going to really understand unless they have it, and focus on doing whatever I can to get well.

@Lang1725, thank you so much for your information about the antidepressants. My emetophobia is much more under control than it used to be. I did try celexa once a few years ago, but ended up with serotonin syndrome from only 5 mg of my prescribed 10 mg. It was the worst experience of my life (and I've been run over by a pickup truck! lol) and has caused me to be extremely cautious about starting new medication, and to avoid anything that touches serotonin. I was prescribed 0.5 mg ativan last year for my SP (ha!) but I've used it when I get a little panicky about nausea. I haven't had a panic attack in at least a year. Until I found this forum, I'd only ever met one other person with this fear (strangely enough, he's my sleep doctor). Maybe there's some sort of connection? (Or maybe the awful bout of food poisoning that gave me the phobia triggered the autoimmune issue that gave me N....?)

#16 sleepywriter

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Posted 24 August 2012 - 04:04 PM

I was in your place almost a year ago. As I begin to reflect on my own journey over this last year and learning how to best manage my symptoms, your post really struck me.

My dad is very much like yours. He did not want to accept the diagnosis and would constantly blame external forces - stress, boredom at work (I am never bored at my job!), too much going on with the family, school, etc, etc, etc. He had a million reasons why I was so tired all of the time with none of them being a chronic disorder. He suggested I was depressed more times than I care to count until I finally told him, "I'm I am depressed, it's BECAUSE I'm so sleepy."

Stress IS a major contributor to severity of symptoms, at least for me. Even with medications, if I'm feeling stressed out about anything, I am more likely to have a bad day of EDS, cataplexy, SP/HH, you name it. However, even when things are going perfect, the narcolepsy is always there. It doesn't go into remission. It's more of an ebb and flow. Some days are simply better than others.

My husband also has sleep apnea. Since his symptoms improved a lot once he started CPAP therapy, he thinks it should be the same way with narcolepsy and medications. It isn't. There isn't a one-size-fits-all approach with narcolepsy. Medications affect us in different ways. What works for one person causes terrible side-effects in another. What works for someone at one time may not work a few months later. It's constant trial and error to find what works in terms of medications.

As for keeping your diagnosis quiet, only you can make that decision. It didn't sit well with me to be quiet about it because I felt that it meant I was ashamed and was doing something wrong. Therefore, I told my co-workers, friends, and whomever else would listen. I started a blog so that even more people would listen and learn a little bit about what it's like. It's empowering to be able to help others, and the e-mails and comments I receive make any negative attention I receive worth it. I wrote a post in my blog about advocating for yourself and for others if you're interested. http://stridesagains...about-advocacy/

Your decision to focus on yourself an not on how others are acting. You can't control them, but you can control how you respond. Oh, and the pity party? Happens from time to time. I remember my own first big pity party. I'd started on Nuvigil and was not tolerating it well at all. On the second day, I was so sick and couldn't sleep when I needed to sleep. I was so frustrated that THIS was the life I'd been dealt. I started crying so hard that I couldn't breathe and eventually made my husband take our daughter out of the room so that I could cry in peace. After that, I decided to go easier on myself and give it time. There are still days - probably one every few months - where I go into a tailspin and end up having another pity party. I allow myself fifteen minutes before moving on.

Like I said, it has been almost a year since I was in your shoes. It has been a year of ups and downs, but if I look at where I was last year compared to where I am now, I am happy to report that I'm much more alert and productive. It takes a long time, but you'll get there. :)

#17 Megssosleepy

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Posted 27 August 2012 - 10:09 AM

When I was waiting for my MSLT results, I decided that if my "maybe" diagnosis of N turned out to be a "definitely" I'd turn it into something positive and work on raising awareness. However, my parents are insisting that I keep this to myself to avoid issues with future employment. Keeping my narcolepsy a secret has made me so angsty I feel like a teenager again. My boyfriend's stepmom and stepsisters have made comments about how if they hadn't known me for so long they'd think I was a "mean girl" because I'm so quiet. This has really stuck with me, and I know other people must think the same. When I try to go out with friends on Friday or Saturday nights, I have so much trouble just staying awake that I can't even pretend to concentrate on a conversation. I know this makes me look bored, or rude, or snobby and I hate that I can't explain what's really going on. I can't think of ANY other condition that is so misunderstood that it would have to be kept secret EVEN when someone is working in healthcare.

I'm trying to not let it bother me that no one who has been told about my condition has asked how I'm doing. Everyone outside of my immediate family has been very nonchalant about the whole thing.

As of now I'm trying to remember that no one is every going to really understand unless they have it, and focus on doing whatever I can to get well.


GIRLLLLLL, I feel the same way! My parents don't think a big deal, no one does, no one understands. I feel like coming on to this site is the only place where anyone "GETs IT". Also, everyone has always called me "bored, or rude, or snobby"... until they get to know me. I'm just sleepy, and have the need to sit when I am in a "new" situation or my legs buckle. This N stuff is crap. It's taken me a few months to really get a grips on this... Ive done the crying and grumpy thing to. I just feel like if I can grasp this I will pull through... some days are def. harder then others... not really sure what the future holds, but at least we have site, where we can express how we feel and why we feel the way we do, and everyone understands!

#18 doctahjay

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Posted 05 September 2012 - 11:32 AM

The doctor really took his time with me talking about what this means for my future, but I'm still so confused and...upset? My family seems upset and dismissive at the same time. The doctor gave me a prescription for nuvigil and a bunch of samples to try until my insurance approves the script. He told me to notify my nursing school so they can accomodate me, but I've heard from other people that I absolutely should not tell them unless absolutely necessary because they can kick me out of the program with some other excuse. When I asked if the cataplexy would worsen over time he paused and reluctantly nodded. He made it sound like eventually I'll be on xyrem (really really don't want it unless nothing else works), but for now I'll be trying the nuvigil with ritalin as needed.

While I'm happy to know that I'm not lazy, or getting stupider, or crazy...I'm pretty overwhelmed with the diagnosis. I'm feeling very isolated, scared, and sad. I've told 3 close friends since I saw the neuro last month...the first outright laughed because she thought I was joking (and has continued to crack jokes), the second kind of rolled her eyes and tried to rationalize my symptoms ("How do you KNOW you're not asleep during these 'sleep paralysis' episodes? Maybe you're just dreaming you're paralyzed."), and the third didn't react at all. I feel like no one understands how much this has impacted my life, and it really upsets me that my family wants me to hide it. :(



Hey I am a 24 yr old medical student, with N+C. I have had it for 6 years, but recently started getting treatment in May... Why did it take so long? Well, like most of us, people didn't believe me. Then, my family/friends started seeing the SP and C episodes, and totally got on board. Sticking to a strict sleep schedule is the NUMBER ONE way to help lessen your symptoms/episodes. Med school exacerbated my symptoms like crazy... no time to sleep like I need to... and every time I shut my eyes I was going into sleep paralysis. Therefore, I decided to make my relationship with N official :-) Here is a SP hint that works for me:

When I get SP, I have two choices.
1. Breathe deeply, clear my head, and focus on going into a deeper sleep. This of course, does not work if I am trying to wake up.
2. If you try rrrrreeeeaaaaally hard, sometimes you can mutter. Get your family and friends to realize this as a signal you are in SP. Then, have them shake/move your shoulders and head. It may instantly snap you out of it. Works for me every time. When I am by myself, I focus on trying to roll over. Sometimes that works.

Anyway, a few comments :-)

In your first post, the fainting episode does not really sound like cataplexy. Cataplexy, for me anyways, usually occurs when I experience a surprise emotion (usually laughter), and I can briefly feel my muscles contracting/twitching, and that usually gives me time to sit down and breath deeply, in an attempt to not fall the entire way down (this works when I'm not exhausted, but when I am really tired, I tend to go the whole way down). You can imagine, that this would seem like a problem for anyone, especially a healthcare provider. I am not taking meds for cataplexy, bc in my mind the less meds the better, and I try really hard to do things to make the episodes less, like stick to a concrete schedule (again, this is VERY hard in med school, but it is SO important). Also, I try to psych myself up when I'm going out in public or to the hospital for clinic. By psyching yourself up and being really focused, you are less likely to be "surprised" by something and have an attack. This is really important while driving too, the more aware and focused you are, the better. I know this can be really hard, but try making a conscious effort to be psyched up haha

Second: about driving. You will see people say a bunch of different things about this topic, especially because narcolepsy, unless you have it, is an extremely misunderstood condition, even amongst healthcare providers, and even worse, amongst a lot of neurologists. But, here is the rule: if your daytime sleepiness is under control, you are absolutely allowed to drive. This means that you just have to be self-aware about how your body is feelng, make the decision to not drive when ridiculously tired, and pull over if you are driving and start to get sleepy.

About school: you can definitely inform your nursing school about the disorder, and it should remain confidential and not follow you to any profession (unless you are trying to obtain a government/military position). Go to the COUNSELING center at your program, as they have the necessary paperwork, and also the professionalism to keep it on the downlow. Some accommodations that would be beneficial would be for your boards (is that what nurses take?), and once you get a job, working a shift that you are more awake on (afternoon, nights, etc). In reality, narcolepsy can be extremely debilitating. But, we can't let it. I refuse to let this disorder dictate what I can and cannot do. We just have to have the discipline to work twice as hard when our brains are "clicked on," as I call it :-), therefore not giving anyone a reason to question our being in a program, etc.

So, what does N mean for your future? Nothing. It mean you're going to be tired, but you've been living tired for years. It means that you may have awkward social situations sometimes, but who doesn't? It means that you will have to take medication, so what? It means that you will have to try harder when you're awake, but shouldn't we anyway? Narcolepsy WILL run your life, but only if you let it. Totally okay to be upset, pissed, annoyed, and uncomfortable with it. Mainly because it is so hard to get other people to understand and it's just not FAIR that we are tired all the time and people don't get that. But, you know what? We have so many other things to be thankful for, and life's not fair everywhere. At least this is not a terminal illness or an extremely life-changing event. Meds will help (if you want, i can give you a quick rundown of that, it's super cool from a nerd standpoint haha).

As far as you and your friends go. Eventually, you will have to get to the point where you can laugh about it. I mean, "who gets NARCOLEPSY!??! It's that crazy sleeping disease that makes people fall over. I mean have you seen the dog videos? They are hilarious!!!" Right? Well, no. They actually show those videos in our med neuro class. Everyone laughed, but I was kind of offended. Then I thought, you know what? I have narcolepsy and I can really feel for those dogs and I think it's sad. But, my classmates and professors cannot. Does that make them bad people? No. Everyone who knows me knows I sleep everywhere, and knows that if I say I don't remember a conversation that I'm not lying, I just must have been tired. Narcolepsy didn't come as a surprise to anyone who knows me. Therefore, when I tell people, it's more of a "Hey, guess what!?! I have narcolepsy! How bout that?" People respond better to a light-hearted conversation. Then you can kind of describe what it is like for you, and then move on. Give your friends some time to consider it, you are probably the only person they know/will know with N, so it is unfamiliar territory for them, and they think "it's that crazy sleeping disease that makes people fall over," because society does not understand what N is like.

#19 smg08009

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Posted 12 September 2012 - 06:32 PM

@doctahjay Thank you so so much for your reply. I loved the last two paragraphs so much I printed a copy to keep in the back of my binder for school for days when I need a little pep talk. & congratulations on med school! We really need more healthcare providers with familiarity with sleep disorders.