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#1 Duck Master AJ

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Posted 13 November 2012 - 01:02 PM

Hi everybody!

My name is AJ. I’m sure this happens all the time, but I suspect that I’m suffering from some sort of sleep disorder and I was hoping for some outside opinions. Here’s my story:

I’m a 21-year-old female and a junior at a small, private, four-year college where I’m studying biochemistry. Ever since I was 12 or 13, I have been falling asleep whenever I sit down and am forced into a passive role (listening/taking notes in class, watching movies, reading/studying, etc.), regardless of the amount of sleep I get. I am naturally hyperactive – I was diagnosed with ADHD, combined type after I had to repeat kindergarten due to an inability to sit still, follow directions, and stop talking – so I’m not usually overly tired if I’m moving, but once I sit down, I become exceedingly groggy and will fall asleep anywhere, in nearly any position, if I’m not actively talking or eating.

I’m a very good student and have always had high marks despite sleeping through nearly every single class period in high school. However, it became more difficult to maintain that level of success once I got to college because the classes moved at a much faster pace – I needed to be able to stay awake during the lectures. I assumed that it was just a symptom of my ADHD and finally consented to medication (up until that point I had resisted, disliking the idea of having to take a pill every day). I was put on Adderall last fall and it worked beautifully. I was alert, attentive, and succeeding once again.

However, my brain is dysfunctional in more than one way: I also suffer from a bizarre mood disorder. In short, I am easily set off by minor frustrations and instantaneously lose my ability to control my emotions, usually resulting in a meltdown in which I will cry and/or throw things, and ending with temporary mutism. I was put on Lamictal in the hopes that it would decrease the intensity of my outbursts. Instead, it decreased the effectiveness of the Adderall, or so it seemed.

After we reached a clinically significant dose of the Lamictal (it has to be slowly titrated into the system to prevent shock), I thought that the interference had abated – this was around January. We continued to increase the dose of the Lamictal until we reached the recommended maximum for mood disorders, at which point we supplemented the mood stabilizer with an antidepressant (Celexa) around March because it still wasn’t as effective as we would have liked. A few weeks later, my psychiatrist ordered a blood test and discovered that I also have a mild case of hypothyroidism, which we started treating with Cytomel and later Synthroid when my free T4 wasn’t high enough.

I finished out the semester well enough, and I was selected to stay on over the summer and do research with one of the chemistry professors. This was, without a doubt, the best summer I’ve ever had. Lab work is perfect for someone like me, what with all the activity. However, when I would sit down to type up some data, read an article, or listen to the Friday afternoon meetings, I would pass right out. I still couldn’t watch movies, go for long car rides, or even watch the fireworks on the Fourth of July without falling asleep.

Once this semester started, I realized that my difficulty staying awake in class was back in all its glory. As a junior, staying awake is absolutely imperative due to the fact that the courses are so demanding. No matter what, I couldn’t seem to keep myself awake. I asked one of my professors if I could stand at the back of the room and take notes; she said it was fine. That’s when I discovered that I can fall asleep, or at least begin to fall asleep, standing up if motionless for too long. The Adderall definitely still helps, but I find that I need to take the instant releases every 3-4 hours (rather than the 5-6 hours) if I want the possibility of remaining conscious.

Unlike going to bed at night, falling asleep in class is like being drugged or hit with a mallet. I can’t fight it and often don’t realize it’s happened until I jerk awake. Once I go under the first time, the rest of the class period feels like I’m attached to a yo-yo. I fight as hard as I can to keep taking notes, but my hand slides down the page and I’m left with a bunch of unintelligible scribbles. Although I’m only under for a few seconds or a minute, I’m actually capable of having a dream. It doesn’t happen every time but, when it does, the plot is very bizarre, like in most of my dreams.

I am so frustrated by my inability to control my behavior. I hate it. I HATE it. It wouldn’t be as bad if it wasn’t such an unpleasant sensation. I love chemistry and I love my professors. The topics interest me but I can’t listen to or understand the lectures because I’m constantly passing out. I’ve talked to them and they’re all very sweet about it, but that doesn’t make it any better. In fact, their kindness makes me feel even guiltier for falling asleep in their classes.

My psychiatrist brought up sleep apnea in one of our first meetings and mentioned a sleep study, but I told her slept well and I never woke up with any difficulty breathing. When we started talking about this issue again, she reintroduced the idea; my reply was the same. It was my therapist who brought up narcolepsy. I looked up some basic information and it seems plausible, but then again, it could also be a desperate attempt to match up my symptoms with an actual disorder in the hope that it will expedite treatment, especially since narcolepsy frequently goes hand-in-hand with cataplexy. I mean, I’m not falling down all over the place, but I’ve read that milder forms exist so I’m not really sure what counts and what doesn’t. I can say that I am one of the least coordinated people I know and I startle worse than a baby deer. I have no balance and frequently trip over things that aren’t there, and I have been known to drop things. If I start falling asleep sitting down, my pencil will trail off in little scribbles before I drop it, or I’ll start to fall over if I start dosing on my feet but I think that a normal sleep reaction.

I’m meeting with my psychiatrist this week and I fully intend to bring up the idea and see what she thinks, but I would really appreciate some feedback from people who have actually been diagnosed.

Thanks for reading.

-AJ

#2 Megssosleepy

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Posted 13 November 2012 - 02:01 PM

Hi everybody!

My name is AJ. I’m sure this happens all the time, but I suspect that I’m suffering from some sort of sleep disorder and I was hoping for some outside opinions. Here’s my story:

I’m a 21-year-old female and a junior at a small, private, four-year college where I’m studying biochemistry. Ever since I was 12 or 13, I have been falling asleep whenever I sit down and am forced into a passive role (listening/taking notes in class, watching movies, reading/studying, etc.), regardless of the amount of sleep I get. I am naturally hyperactive – I was diagnosed with ADHD, combined type after I had to repeat kindergarten due to an inability to sit still, follow directions, and stop talking – so I’m not usually overly tired if I’m moving, but once I sit down, I become exceedingly groggy and will fall asleep anywhere, in nearly any position, if I’m not actively talking or eating.

I’m a very good student and have always had high marks despite sleeping through nearly every single class period in high school. However, it became more difficult to maintain that level of success once I got to college because the classes moved at a much faster pace – I needed to be able to stay awake during the lectures. I assumed that it was just a symptom of my ADHD and finally consented to medication (up until that point I had resisted, disliking the idea of having to take a pill every day). I was put on Adderall last fall and it worked beautifully. I was alert, attentive, and succeeding once again.

However, my brain is dysfunctional in more than one way: I also suffer from a bizarre mood disorder. In short, I am easily set off by minor frustrations and instantaneously lose my ability to control my emotions, usually resulting in a meltdown in which I will cry and/or throw things, and ending with temporary mutism. I was put on Lamictal in the hopes that it would decrease the intensity of my outbursts. Instead, it decreased the effectiveness of the Adderall, or so it seemed.

After we reached a clinically significant dose of the Lamictal (it has to be slowly titrated into the system to prevent shock), I thought that the interference had abated – this was around January. We continued to increase the dose of the Lamictal until we reached the recommended maximum for mood disorders, at which point we supplemented the mood stabilizer with an antidepressant (Celexa) around March because it still wasn’t as effective as we would have liked. A few weeks later, my psychiatrist ordered a blood test and discovered that I also have a mild case of hypothyroidism, which we started treating with Cytomel and later Synthroid when my free T4 wasn’t high enough.

I finished out the semester well enough, and I was selected to stay on over the summer and do research with one of the chemistry professors. This was, without a doubt, the best summer I’ve ever had. Lab work is perfect for someone like me, what with all the activity. However, when I would sit down to type up some data, read an article, or listen to the Friday afternoon meetings, I would pass right out. I still couldn’t watch movies, go for long car rides, or even watch the fireworks on the Fourth of July without falling asleep.

Once this semester started, I realized that my difficulty staying awake in class was back in all its glory. As a junior, staying awake is absolutely imperative due to the fact that the courses are so demanding. No matter what, I couldn’t seem to keep myself awake. I asked one of my professors if I could stand at the back of the room and take notes; she said it was fine. That’s when I discovered that I can fall asleep, or at least begin to fall asleep, standing up if motionless for too long. The Adderall definitely still helps, but I find that I need to take the instant releases every 3-4 hours (rather than the 5-6 hours) if I want the possibility of remaining conscious.

Unlike going to bed at night, falling asleep in class is like being drugged or hit with a mallet. I can’t fight it and often don’t realize it’s happened until I jerk awake. Once I go under the first time, the rest of the class period feels like I’m attached to a yo-yo. I fight as hard as I can to keep taking notes, but my hand slides down the page and I’m left with a bunch of unintelligible scribbles. Although I’m only under for a few seconds or a minute, I’m actually capable of having a dream. It doesn’t happen every time but, when it does, the plot is very bizarre, like in most of my dreams.

I am so frustrated by my inability to control my behavior. I hate it. I HATE it. It wouldn’t be as bad if it wasn’t such an unpleasant sensation. I love chemistry and I love my professors. The topics interest me but I can’t listen to or understand the lectures because I’m constantly passing out. I’ve talked to them and they’re all very sweet about it, but that doesn’t make it any better. In fact, their kindness makes me feel even guiltier for falling asleep in their classes.

My psychiatrist brought up sleep apnea in one of our first meetings and mentioned a sleep study, but I told her slept well and I never woke up with any difficulty breathing. When we started talking about this issue again, she reintroduced the idea; my reply was the same. It was my therapist who brought up narcolepsy. I looked up some basic information and it seems plausible, but then again, it could also be a desperate attempt to match up my symptoms with an actual disorder in the hope that it will expedite treatment, especially since narcolepsy frequently goes hand-in-hand with cataplexy. I mean, I’m not falling down all over the place, but I’ve read that milder forms exist so I’m not really sure what counts and what doesn’t. I can say that I am one of the least coordinated people I know and I startle worse than a baby deer. I have no balance and frequently trip over things that aren’t there, and I have been known to drop things. If I start falling asleep sitting down, my pencil will trail off in little scribbles before I drop it, or I’ll start to fall over if I start dosing on my feet but I think that a normal sleep reaction.

I’m meeting with my psychiatrist this week and I fully intend to bring up the idea and see what she thinks, but I would really appreciate some feedback from people who have actually been diagnosed.

Thanks for reading.

-AJ


I would suggest doing a sleep study to rule out apnea and then a MSLT (day time naps) Its really the only way to know. I think a lot of people who have sleep apnea have no idea they have it until they have been tested. My mom is finally getting tested for it, she sleeps great at night but is so so so tired all day and falls asleep very easily.

Good luck!

#3 Hank

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Posted 13 November 2012 - 02:04 PM

Hi everybody!

My name is AJ. I’m sure this happens all the time, but I suspect that I’m suffering from some sort of sleep disorder and I was hoping for some outside opinions. Here’s my story:

I’m a 21-year-old female and a junior at a small, private, four-year college where I’m studying biochemistry. Ever since I was 12 or 13, I have been falling asleep whenever I sit down and am forced into a passive role (listening/taking notes in class, watching movies, reading/studying, etc.), regardless of the amount of sleep I get. I am naturally hyperactive – I was diagnosed with ADHD, combined type after I had to repeat kindergarten due to an inability to sit still, follow directions, and stop talking – so I’m not usually overly tired if I’m moving, but once I sit down, I become exceedingly groggy and will fall asleep anywhere, in nearly any position, if I’m not actively talking or eating.

I’m a very good student and have always had high marks despite sleeping through nearly every single class period in high school. However, it became more difficult to maintain that level of success once I got to college because the classes moved at a much faster pace – I needed to be able to stay awake during the lectures. I assumed that it was just a symptom of my ADHD and finally consented to medication (up until that point I had resisted, disliking the idea of having to take a pill every day). I was put on Adderall last fall and it worked beautifully. I was alert, attentive, and succeeding once again.

However, my brain is dysfunctional in more than one way: I also suffer from a bizarre mood disorder. In short, I am easily set off by minor frustrations and instantaneously lose my ability to control my emotions, usually resulting in a meltdown in which I will cry and/or throw things, and ending with temporary mutism. I was put on Lamictal in the hopes that it would decrease the intensity of my outbursts. Instead, it decreased the effectiveness of the Adderall, or so it seemed.

After we reached a clinically significant dose of the Lamictal (it has to be slowly titrated into the system to prevent shock), I thought that the interference had abated – this was around January. We continued to increase the dose of the Lamictal until we reached the recommended maximum for mood disorders, at which point we supplemented the mood stabilizer with an antidepressant (Celexa) around March because it still wasn’t as effective as we would have liked. A few weeks later, my psychiatrist ordered a blood test and discovered that I also have a mild case of hypothyroidism, which we started treating with Cytomel and later Synthroid when my free T4 wasn’t high enough.

I finished out the semester well enough, and I was selected to stay on over the summer and do research with one of the chemistry professors. This was, without a doubt, the best summer I’ve ever had. Lab work is perfect for someone like me, what with all the activity. However, when I would sit down to type up some data, read an article, or listen to the Friday afternoon meetings, I would pass right out. I still couldn’t watch movies, go for long car rides, or even watch the fireworks on the Fourth of July without falling asleep.

Once this semester started, I realized that my difficulty staying awake in class was back in all its glory. As a junior, staying awake is absolutely imperative due to the fact that the courses are so demanding. No matter what, I couldn’t seem to keep myself awake. I asked one of my professors if I could stand at the back of the room and take notes; she said it was fine. That’s when I discovered that I can fall asleep, or at least begin to fall asleep, standing up if motionless for too long. The Adderall definitely still helps, but I find that I need to take the instant releases every 3-4 hours (rather than the 5-6 hours) if I want the possibility of remaining conscious.

Unlike going to bed at night, falling asleep in class is like being drugged or hit with a mallet. I can’t fight it and often don’t realize it’s happened until I jerk awake. Once I go under the first time, the rest of the class period feels like I’m attached to a yo-yo. I fight as hard as I can to keep taking notes, but my hand slides down the page and I’m left with a bunch of unintelligible scribbles. Although I’m only under for a few seconds or a minute, I’m actually capable of having a dream. It doesn’t happen every time but, when it does, the plot is very bizarre, like in most of my dreams.

I am so frustrated by my inability to control my behavior. I hate it. I HATE it. It wouldn’t be as bad if it wasn’t such an unpleasant sensation. I love chemistry and I love my professors. The topics interest me but I can’t listen to or understand the lectures because I’m constantly passing out. I’ve talked to them and they’re all very sweet about it, but that doesn’t make it any better. In fact, their kindness makes me feel even guiltier for falling asleep in their classes.

My psychiatrist brought up sleep apnea in one of our first meetings and mentioned a sleep study, but I told her slept well and I never woke up with any difficulty breathing. When we started talking about this issue again, she reintroduced the idea; my reply was the same. It was my therapist who brought up narcolepsy. I looked up some basic information and it seems plausible, but then again, it could also be a desperate attempt to match up my symptoms with an actual disorder in the hope that it will expedite treatment, especially since narcolepsy frequently goes hand-in-hand with cataplexy. I mean, I’m not falling down all over the place, but I’ve read that milder forms exist so I’m not really sure what counts and what doesn’t. I can say that I am one of the least coordinated people I know and I startle worse than a baby deer. I have no balance and frequently trip over things that aren’t there, and I have been known to drop things. If I start falling asleep sitting down, my pencil will trail off in little scribbles before I drop it, or I’ll start to fall over if I start dosing on my feet but I think that a normal sleep reaction.

I’m meeting with my psychiatrist this week and I fully intend to bring up the idea and see what she thinks, but I would really appreciate some feedback from people who have actually been diagnosed.

Thanks for reading.

-AJ



AJ- so much of what you have written about sleepiness during inactivity sounds like how I would describe myself.

When I was first ever asked about sleep- I said I was a great sleeper. I was such a great sleeper I had to fight doing it all the time. I had to fight the hardest when I was sitting still, especially in a lecture setting. I successfully kept myself awake every day- I just didn't realize how hard I was really struggling.

If you do not have Narcolepsy, then you don't. If you do, you will know what you are dealing with. The only way to know is to have a sleep study, including a MSLT (daytime nap study) which is where a Narcolepsy diagnosis is made.

You will want to start with a Sleep Medicine Specialist- usually a Neurologist who is Fellowship trained in Sleep Medicine. Be wary of Board Certified in Sleep Medicine- which is not the same thing.

Lamictal increased REM and decreases slow wave sleep. This is referred to as disrupting sleep architecture.

I was on a medication that altered my sleep architecture when I went for my first MSLT. I began reducing that medication, did the test which would not be conclusive, but it did show that I was severely sleepy. After I was off that medication for 1 month, I repeated the MSLT and was correctly diagnosed with Narcolepsy.

If you decide to persue the sleep studies, and it sounds like you have good reason to, you will need to work with your Sleep Medicine doctor to guide you regarding Lamictal. It may be a process rather than an event to get the tests and the results. You may want to choose the timing to coincide with a summer or winter break, so it does not interfere with your school work.

I hope you find the right doctors and eventually the answers. Please make sure you choose your doctor carefully- they will only find what they are looking for. Only a few know how to look for Narcolepsy.

#4 Ciraeyna

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Posted 13 November 2012 - 11:02 PM

Hi AJ,

You may be interested to know that there are links between ADHD and sleep disorders. Apparently, getting little and/or poor sleep results in ADHD symptoms for some people. Have you ever seen a small child who is over-tired? They can be completely wired, out of control, bouncing off the walls, emotional, irrational, etc. etc.

With all the symptoms you list, I think a visit to a good sleep clinic is a necessity. I tend to think narcolepsy over sleep apnea, but only an official sleep study will rule out the apnea. You may be surprised to find out that ALL your symptoms are related to a sleeping disorder. They may not...but I think it's a possibility. Keep that in mind. If you do end up with a diagnosis for narcolepsy or other sleep disorder, you may want to consider whether you need all those different meds. Adderall is a stimulant (yes, they use a stimulant to treat ADHD) and interestingly is also used by some people with narcolepsy for the alerting effect. I'm having a hard time finding a clear cut answer for Lamictal, but it appears it can also be stimulating and has been shown to cause insomnia in some people. Even more interesting for Lamictal is this: "Studies with small numbers (10-15) of patients reported that lamotrigine [Lamictal] increases sleep stability (increases the duration of REM sleep, decreases the number of phase shifts, and decreases the duration of slow-wave sleep)." That's exactly what Hank said too. If you have narcolepsy, this is NOT what you want happening. Sleep stability is good - but people with narcolepsy don't need more REM and less SWS. They need the opposite.

I encourage you to follow Hank's advice about finding a good sleep doc (lots of sleep docs are pulmonologists because sleep apnea is by far the most common sleep disorder). You don't want a pulmonologist trying to diagnose, treat and manage narcolepsy...if indeed that's what you have.

Best of luck,
Cira

#5 trying_to_cope

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Posted 21 November 2012 - 10:19 PM

Hi AJ,

You may be interested to know that there are links between ADHD and sleep disorders. Apparently, getting little and/or poor sleep results in ADHD symptoms for some people. Have you ever seen a small child who is over-tired? They can be completely wired, out of control, bouncing off the walls, emotional, irrational, etc. etc.

With all the symptoms you list, I think a visit to a good sleep clinic is a necessity. I tend to think narcolepsy over sleep apnea, but only an official sleep study will rule out the apnea. You may be surprised to find out that ALL your symptoms are related to a sleeping disorder. They may not...but I think it's a possibility. Keep that in mind. If you do end up with a diagnosis for narcolepsy or other sleep disorder, you may want to consider whether you need all those different meds. Adderall is a stimulant (yes, they use a stimulant to treat ADHD) and interestingly is also used by some people with narcolepsy for the alerting effect. I'm having a hard time finding a clear cut answer for Lamictal, but it appears it can also be stimulating and has been shown to cause insomnia in some people. Even more interesting for Lamictal is this: "Studies with small numbers (10-15) of patients reported that lamotrigine [Lamictal] increases sleep stability (increases the duration of REM sleep, decreases the number of phase shifts, and decreases the duration of slow-wave sleep)." That's exactly what Hank said too. If you have narcolepsy, this is NOT what you want happening. Sleep stability is good - but people with narcolepsy don't need more REM and less SWS. They need the opposite.

I encourage you to follow Hank's advice about finding a good sleep doc (lots of sleep docs are pulmonologists because sleep apnea is by far the most common sleep disorder). You don't want a pulmonologist trying to diagnose, treat and manage narcolepsy...if indeed that's what you have.

Best of luck,
Cira


Cira~ Im not sure if you'll see this but I was wondering why is a pulmonologist not good in treating narcolepsy? Im just wondering, who is a good doctor? Im new to all this thats why Im asking. Thank you so much.

#6 Ciraeyna

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Posted 18 December 2012 - 08:22 PM

Hi trying_to_cope!

I'm really sorry I haven't been on the boards in awhile. I saw your question today, and I've also seen quite a few posts in other threads that are pertinent. DeathRabbit has some, and Hank has a good one that I copied below.

All credit for the following goes to Hank! I just couldn't figure out how to link to his post, so I copied it here (hope he doesn't mind):

The best doctor for a person with Narcolepsy is a Sleep Medicine Specialist. This is generally a Neurologist who is fellowship (additional 1-3 years training beyond residency) trained in Sleep Medicine.

Several other specialties can received Board Certification (passed a test they studied for or took a course or seminar) in Sleep Medicine: Pulmonary Medicine, ENT (Otolaryngology), Dentistry, Neurology.

Board Certification in Sleep Medicine does not come remotely close to the expertise of a Sleep Medicine Specialist.

Those physicians who are Board Certified in Sleep Medicine, like your Pulmonologist, primarily focus on Obstructive Sleep Apnea, which is common and relatively straight forward to treat. This makes a nice addition to their Pulmonology practice where they treat lots of people with respiratory problems.


Narcolepsy is a completely different ball game than Obstructive Sleep Apnea, which is common. It is likely your Pulmonologist has never treated someone, or only a few, with Narcolepsy.

Ultimately, it is your call who you decide to be your doctor. Doctors tend to treat patients who go to them, doctors tend to see themselves as capable, and doctors tend to be confident in their decisions. Problems begin when you trust a physician more than their expertise to treat you deserves.

You may want to consider a second opinion with a Sleep Medicine Specialist and see if there is a difference before making a decision.

I hope this helps! You may want to explore a few other threads if you haven't already. There are a few posts out there on finding good docs.

All the best,
Cira


#7 Duck Master AJ

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Posted 19 December 2012 - 08:41 PM

Hello all,

It’s been a while, but I do want to thank you for your responses – they were exceedingly helpful! Now that I’m officially on winter break, I can add to this less-than-enjoyable story.

I talked to my psychiatrist and she doesn’t think it’s unreasonable. Either way, we rechecked my blood work to make sure it wasn’t my thyroid acting up (it wasn’t). We’re also going to have a Lyme disease test done while I’m on break. I have a consultation appointment on Friday with a sleep doctor. Thanks to your warnings, I chose a guy who is a “neurology and sleep medicine specialist” who did his fellowship at Harvard Medical School. I’ll let you all know how that pans out.

As for the last month of classes, things went from bad to worse. I found it impossible to make any reasonable progress on any of my assignments, including studying for exams. If I wasn’t sleeping, I was sobbing because I kept sleeping instead of working, which wasn’t increasing productivity (if you can imagine…). I communicated with my counselor, the Dean of Academic Advising, and all my professors, and we made a command decision to issue medical incompletes. I’ll have the entire winter break and the first few weeks of next semester to finish up outstanding assignments, at which time I’ll get my course grades. It’s not ideal, but it was definitely for the best.

During that last month, I had several episodes that I was so tired, I was legitimately staggering with my eyes closed. It took me 20 minutes to make a 4 minute trip, during which I ran into a raised flower bed because my eyes wouldn’t stay open. I didn’t fully fall over, but there were many close calls. Then, there was another incident – that I’m not sure is entirely related to this mess – where I was completely exhausted, my body hurt, my head hurt, and I had very little strength. My suitemates called the campus police to see if they thought the hospital should check me out. They did, so we took a ride down there, only to discover… nothing of consequence. I came home a few hours later, then slept for 25 of the next 30 hours (and was still tired).

Since giving up on school work, I just sleep whenever I can. I’ve tried to track it, and I definitely sleep more than 12 hours a day. I did an experiment yesterday and decided not to take the Adderall at all to see if it made a difference – it definitely did. I was much sleepier and slept for about 15 hours (which would have been higher had I not needed to make dinner and wrap presents). I would love to have all of my problems be connected to this one disorder, and I would love to ditch as many of the medications as possible. I will be talking to the sleep doctor about the Lamictal, for sure. Things definitely got worse once we started it last year, but it just kind of exploded into awfulness this semester.

Anyway, I’ve been doing some reflecting on myself and my behaviors to try and decide if certain things are relevant to bring up with the sleep doctor, especially since each person can have a different experience with the same disorder. Something I’ve always thought was weird is this thing that happens when I’ve just gotten into bed. I’ll lie down and immediately I’ll be watching my fan. Here’s the kicker: there’s no fan in my dorm room, yet it happens in there too. I’ll be watching my fan, and I know it’s going to fall, but I can’t move. It falls in slow motion – still can’t move – and crushes me, at which point my body spasms like crazy. I can’t tell if I’m awake or asleep for the whole thing, but it’s pretty terrifying. Thankfully, it doesn’t happen that frequently (maybe 10-15 times a year). Another thing is what happens when I get set off. I briefly described the process in my original post, but I didn’t fully deconstruct my behavior. After the initial stimulus, I may immediately go into sadness, or take a short detour through anger, but it all ends up being the same in the end. The first thing that happens is I’ll start to cry (though almost anything can trigger that, including being startled, laughing, thinking about something happy OR sad). Then, I inexplicably lose the ability to keep my head up and speak. Most commonly, I will gradually find myself sinking to the floor, either to wait out recovery (which usually takes anywhere from half an hour to several hours) or to fall asleep. Also, the sleepiness definitely seems to be worse after I’ve eaten, though I don’t think it matters what the food is (I haven’t noticed a difference so far).

That’s where things are. Thanks for your responses! Your input really is invaluable.

-AJ

#8 munky

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Posted 20 December 2012 - 01:18 AM

I would say that pretty much everything you've mentioned in your post is something you need to discuss with your sleep doc. It might not hurt to print out your original post, and the last one, and take hard copies with you, to be sure you've covered everything.

Anyway, I’ve been doing some reflecting on myself and my behaviors to try and decide if certain things are relevant to bring up with the sleep doctor, especially since each person can have a different experience with the same disorder. Something I’ve always thought was weird is this thing that happens when I’ve just gotten into bed. I’ll lie down and immediately I’ll be watching my fan. Here’s the kicker: there’s no fan in my dorm room, yet it happens in there too. I’ll be watching my fan, and I know it’s going to fall, but I can’t move. It falls in slow motion – still can’t move – and crushes me, at which point my body spasms like crazy. I can’t tell if I’m awake or asleep for the whole thing, but it’s pretty terrifying. Thankfully, it doesn’t happen that frequently (maybe 10-15 times a year). Another thing is what happens when I get set off. I briefly described the process in my original post, but I didn’t fully deconstruct my behavior. After the initial stimulus, I may immediately go into sadness, or take a short detour through anger, but it all ends up being the same in the end. The first thing that happens is I’ll start to cry (though almost anything can trigger that, including being startled, laughing, thinking about something happy OR sad). Then, I inexplicably lose the ability to keep my head up and speak. Most commonly, I will gradually find myself sinking to the floor, either to wait out recovery (which usually takes anywhere from half an hour to several hours) or to fall asleep. Also, the sleepiness definitely seems to be worse after I’ve eaten, though I don’t think it matters what the food is (I haven’t noticed a difference so far).


You especially need to mention the things in this last paragraph. The fan thing sounds to me like hypnagogic hallucinations with sleep paralysis. The rest sounds a lot like cataplexy to me. I sincerely hope someone with more experience of those things than I will chime in on that, since I haven't experienced them and my opinion on both is based entirely on reading articles and other people's experiences.

Good luck on Friday. Whatever the results, whether it turns out to be narcolepsy or not, at least you should finally be able to find out what it is and find a treatment for it! Just remember, finding the right treatment for your narcolepsy (if that's what it is and, honestly, it sure sounds like it from here) might take some time. The best treatment for each person is different, and you might have to try several before you hit on the one that works for you. Stick to it, though, and it'll be worth it in the end.

#9 Megssosleepy

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Posted 21 December 2012 - 12:30 PM

Anyway, I’ve been doing some reflecting on myself and my behaviors to try and decide if certain things are relevant to bring up with the sleep doctor, especially since each person can have a different experience with the same disorder. Something I’ve always thought was weird is this thing that happens when I’ve just gotten into bed. I’ll lie down and immediately I’ll be watching my fan. Here’s the kicker: there’s no fan in my dorm room, yet it happens in there too. I’ll be watching my fan, and I know it’s going to fall, but I can’t move. It falls in slow motion – still can’t move – and crushes me, at which point my body spasms like crazy. I can’t tell if I’m awake or asleep for the whole thing, but it’s pretty terrifying. Thankfully, it doesn’t happen that frequently (maybe 10-15 times a year). Another thing is what happens when I get set off. I briefly described the process in my original post, but I didn’t fully deconstruct my behavior. After the initial stimulus, I may immediately go into sadness, or take a short detour through anger, but it all ends up being the same in the end. The first thing that happens is I’ll start to cry (though almost anything can trigger that, including being startled, laughing, thinking about something happy OR sad). Then, I inexplicably lose the ability to keep my head up and speak. Most commonly, I will gradually find myself sinking to the floor, either to wait out recovery (which usually takes anywhere from half an hour to several hours) or to fall asleep. Also, the sleepiness definitely seems to be worse after I’ve eaten, though I don’t think it matters what the food is (I haven’t noticed a difference so far).

That’s where things are. Thanks for your responses! Your input really is invaluable.

-AJ


I used to have something similar... I did have a fan but it would be turned off. Yet there it would be moving on high speed. I would get out of bed turn the light on see it was off, start falling asleep hear it spinning again open my eyes there is was again full speed, could even feel the air!

Make sure you tell your doc everything in that last paragraph!

Good Luck!

#10 Megssosleepy

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Posted 21 December 2012 - 12:31 PM

I would say that pretty much everything you've mentioned in your post is something you need to discuss with your sleep doc. It might not hurt to print out your original post, and the last one, and take hard copies with you, to be sure you've covered everything.



You especially need to mention the things in this last paragraph. The fan thing sounds to me like hypnagogic hallucinations with sleep paralysis. The rest sounds a lot like cataplexy to me. I sincerely hope someone with more experience of those things than I will chime in on that, since I haven't experienced them and my opinion on both is based entirely on reading articles and other people's experiences.

Good luck on Friday. Whatever the results, whether it turns out to be narcolepsy or not, at least you should finally be able to find out what it is and find a treatment for it! Just remember, finding the right treatment for your narcolepsy (if that's what it is and, honestly, it sure sounds like it from here) might take some time. The best treatment for each person is different, and you might have to try several before you hit on the one that works for you. Stick to it, though, and it'll be worth it in the end.


You are 100% correct- the fan, HH with SP and everything else C.

#11 SleepySiren

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Posted 21 December 2012 - 01:03 PM

You are 100% correct- the fan, HH with SP and everything else C.


I have recurring visions of ceiling fans when falling asleep and we do not have them in my house that I live in now and have been in for 6 years, I have had these recurring visions upon falling asleep since my twenties and thought I just related them to bed time as I always used fans for the white noise effect. I have always just fancied myself an insomniac due to a really hard time falling and staying asleep at night when everyone else sleeps and would almost always suffer the next day! I am a bit of a superstitious person too having read or hearing somewhere once that you sleep 1/3rd of your life I always felt I was missing out cause I NEVER am able to sleep all the way through the night and my dreams are so vivid was convinced that there were some underlying reason, like they were prophetic or something, lol. I guess sleep deprivation will play tricks on a mind after so many years!

#12 Duck Master AJ

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Posted 21 December 2012 - 06:41 PM

I had my initial consultation appointment with the sleep doctor today; it didn’t go as well as I had hoped.

First off, I didn’t really get a chance to explain much of anything (even though I printed out my posts – thanks for the suggestion, munky!). He asked questions, like what time I went to bed on average, which I had a very difficult time answering. The problem with those “on average” questions is that my responses vary with the situation. I don’t know how to compress my experiences into an average answer, which is why I’m terrible at the “rate yourself on a scale of 1-whatever” tests.

Most of the other questions didn’t touch on the important topics, but when we got close, I tried to shove the vital information in there. He asked about paralysis upon waking, and I told him the whole fan story to which my mother commented about relevance (“that’s not what he asked…”). In retrospect, bringing my mom back with me – while I love her dearly and she wants nothing more than to help me – was not a good plan. She kept trying to “get me back on task” when I was trying to go out of my way to mention the important things. I didn’t get a chance to bring up the loss of vocal control because he only asked if I collapse when startled, to which I told him about my unfortunate habit of crying in reaction to any emotional stimulus, but I didn’t really get to elaborate before he moved on.

When he started crafting a set of sleep rules for a sleep routine, I started to get upset. He told me I wasn’t allowed to nap, and I was not happy about that. I’m sleepy all the time, damn it! The Adderall keeps me up, but it doesn’t alleviate the sleepiness. I just want to feel rested. I know you can all relate :). I mentioned having to go back to school in a month, and he was like, “Oh, I’m sure they have sleep specialists up there.” Basically, he wanted to wait another week to schedule the sleep study. From his prospective, it makes sense. However, on my end, I know what I’ve been dealing with, and I know I have a very limited time with which to get treatment started (I’m not naïve – I know it’s not going to be solved that easily, but I really want something with which to work). I already took medical incompletes this past semester, which means I need to finish that work over break and be ready to take exams when I get back. I can’t have another semester like this one. I’m not looking for him to throw pills at me, but I want to get the sleep study done so we can start the treatment process.

I broke down crying, ran out of the office, and flopped down next to our car (because the thought of making no progress before next semester was distressing). It wasn’t too severe, so the crying was only accompanied with loss of voice rather than the head/body control issues. My mom came to find me and everything she said was only making it worse, but I couldn’t response, so I just ignored her. We went back to the room to get my stuff (the appointment was over) and check out, he swung by to say good bye, but I still couldn’t say anything (it probably would have been prudent to stop him and gesticulate wildly :)).

Anyway, we’re meeting with him again in a week. I’m certain his sleep routine isn’t going to help; I’ve been fruitlessly trying to force my body to do what I want it to (keep normal sleeping patterns) throughout the semester, much to my chagrin. But, I can’t schedule the sleep study until then, so I’m seriously concerned about getting things underway in time. I don’t expect the first treatment we try to be perfect, but like I said, I can’t have another semester like this last one. I know all of my professors very well, so if I have something to work with, I know they’ll work with me (and if I’m working with Academic Advising from the beginning, things will definitely run more smoothly, even if they aren’t what they should be).

So basically, I need to return to taking the full quantity of Adderall if I’m going to make it through the week. I’ve been cutting back the dosage to just one in the morning instead of 3-4 throughout the day, because it interferes with my ability to rest voluntarily without helping me feel rested. Since I’m on break, I’d rather have the naps. Besides, the vivid dreams are usually pretty awesome. I mean, they don't do much for the sleepiness (they probably make it worse), but they're just so strange, which is frequently amusing. Of course, that means I can whip up some pretty horrifying nightmares... but I digress.


You especially need to mention the things in this last paragraph. The fan thing sounds to me like hypnagogic hallucinations with sleep paralysis. The rest sounds a lot like cataplexy to me. I sincerely hope someone with more experience of those things than I will chime in on that, since I haven't experienced them and my opinion on both is based entirely on reading articles and other people's experiences.


You are 100% correct- the fan, HH with SP and everything else C.


It’s unfortunate for the symptoms to exist, but it’s wonderful to have an explanation. I was thinking about it yesterday – if my breakdown response (crying, mutism, etc.) is actually a cataplectic attack, then that would explain perfectly why the mood stabilizers aren’t working whatsoever. It also means that said response isn’t associated with a mood disorder, which would explain why it really doesn’t fit the pattern for any of the documented mood disorders and it could potentially controlled with medication. I nearly cried last night because I was so happy at the thought of being able to control my reaction (the irony isn’t lost on me ;)).

I’m not terribly knowledgeable about how the body works, but do you (any of you) know if/think that the crying is connected to cataplexy? I don’t know how the tear ducts are controlled, but it would explain why any essentially stimulus (positive or negative) causes me to cry.


Good luck on Friday. Whatever the results, whether it turns out to be narcolepsy or not, at least you should finally be able to find out what it is and find a treatment for it! Just remember, finding the right treatment for your narcolepsy (if that's what it is and, honestly, it sure sounds like it from here) might take some time. The best treatment for each person is different, and you might have to try several before you hit on the one that works for you. Stick to it, though, and it'll be worth it in the end.


Thank you for the encouragement. I know it’s going to be a long and winding road, and perhaps this will be a good lesson in patience (something in which I’ve always been lacking!).


Anyway, thank you for giving me hope.

-AJ

#13 SeeBee

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Posted 21 December 2012 - 10:51 PM

In my experience, simply the presence of a specific emotion (sudden anger/frustration, and finding something really funny are my biggies) is what sets my cataplexy off. I'm not saying that you don't have cataplexy, because everyone experiences these things differently, but it's interesting to me that the trigger is a specific action (crying,) instead of specific emotions (like anger, hurt, shame, or gratitude.) Do you find that the intensity of the crying affects the intensity of the attack, or that the intensity of the attack is pretty much the same all the time?

A little advice to help your doc out - draw or print out a daily chart, with a little box for each hour of the day. First, black out all the time in which you've slept, including naps. Second, mark the time at which you've eaten a meal with an "M." Then, mark any snacks you ate with an "S", and any crying episodes like those you described with an X. On another sheet of paper, write down the date of the crying episode, and what you were thinking or feeling when you started to cry. Do this for each day that you're following his sleep regimen, and bring it all in to him next week. This will help give him a clearer picture of just how tired you are, and might give both of you a better idea of what's going on with your crying. Do at least try to follow his sleep regimen, too - it's only fair ;)

Good luck in finding the answers you want, and the diagnosis you need!

#14 munky

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Posted 22 December 2012 - 01:26 AM

I had my initial consultation appointment with the sleep doctor today; it didn’t go as well as I had hoped.


I'm so sorry to hear that! Unfortunately, from everything I've read, that's entirely too common. I wish everyone could be as lucky as I was!

It’s unfortunate for the symptoms to exist, but it’s wonderful to have an explanation. I was thinking about it yesterday – if my breakdown response (crying, mutism, etc.) is actually a cataplectic attack, then that would explain perfectly why the mood stabilizers aren’t working whatsoever. It also means that said response isn’t associated with a mood disorder, which would explain why it really doesn’t fit the pattern for any of the documented mood disorders and it could potentially controlled with medication. I nearly cried last night because I was so happy at the thought of being able to control my reaction (the irony isn’t lost on me Posted Image).


It's amazing how much better it can make you feel just to know what's wrong and to start working toward a treatment! Even just knowing that everything you tried before may have been the wrong thing, and you're finally working toward finding out the truth and getting the right treatment is such a relief!

I’m not terribly knowledgeable about how the body works, but do you (any of you) know if/think that the crying is connected to cataplexy? I don’t know how the tear ducts are controlled, but it would explain why any essentially stimulus (positive or negative) causes me to cry.


Keep in mind, I'm neither a doctor nor an anatomist. I'm just a science geek who reads a lot. And, since I have a lot of free time at work, I have the time to look this stuff up. If I'm understanding what I'm reading correctly, the mechanics of crying involve a muscle contracting and expanding to put pressure on the lacrimal gland (or maybe the lacrimal sac?), thus forcing the tears out through the tear duct.

It's my understanding that in cataplexy attacks, your body basically loses control of certain muscles. So, I'm wondering if it's possible that cataplexy can affect those muscles that are involved in crying and, in so doing, cause crying as a cataplectic attack. I've heard it can affect other eye muscles and cause a twitch/tic (though I haven't done that research yet), so it could make sense. When you say you start crying, do you mean the whole experience? I mean, are you actually sobbing, or just have tears running down your face? I ask because, if it is a cataplexy attack, I'd expect it to be just the tears running down your face--the result of those muscles around your lacrimal gland/sac contracting--without the actual sobbing, which is associated more with emotional attacks.

Then again, some people "cry"--or at least have tears running down their faces--from seeing or hearing something beautiful or in some other way emotionally moving, which would mean a heckuva lot of people having minor, unknown attacks of cataplexy, right? So the crying itself may not be related to the cataplexy at all. It may, instead, be related to the fact that you're sleep deprived--and stressed out because of it--and not entirely in control. That doesn't make it a mood disorder, but a side effect, if you will, of the underlying sleep disorder.

The inability to speak or hold your head up, however, definitely sounds like cataplexy.

#15 Duck Master AJ

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Posted 22 December 2012 - 10:58 AM

In my experience, simply the presence of a specific emotion (sudden anger/frustration, and finding something really funny are my biggies) is what sets my cataplexy off. I'm not saying that you don't have cataplexy, because everyone experiences these things differently, but it's interesting to me that the trigger is a specific action (crying,) instead of specific emotions (like anger, hurt, shame, or gratitude.) Do you find that the intensity of the crying affects the intensity of the attack, or that the intensity of the attack is pretty much the same all the time?


Ah, I may not have explained myself clearly – I am very prone to that, much to the annoyance of my friends and family. The emotion is definitely the trigger, and the crying is the immediate and uncontrollable response to the strong emotional stimulus. For example, when the doctor made it seem like we wouldn’t make any kind of headway before I had to leave for school, I got sad and frustrated, so I started to cry and lost my voice. The intensity of the emotion absolutely affects the intensity of the attack. Mild emotional stimuli may just result in tears. Stronger stimuli will make me lose my ability to speak, while even stronger stimuli will make my head fall forward such that I can’t bring it upright. Usually those kinds of attacks will result in me crumbling to the floor, more or less motionless (depending on the trigger). As I’m coming out, it usually recedes in that order. I may get motion back in my head in 15 minutes, but I won’t be able to speak for an hour. The crying does typically stop first, though.


A little advice to help your doc out - draw or print out a daily chart, with a little box for each hour of the day. First, black out all the time in which you've slept, including naps. Second, mark the time at which you've eaten a meal with an "M." Then, mark any snacks you ate with an "S", and any crying episodes like those you described with an X. On another sheet of paper, write down the date of the crying episode, and what you were thinking or feeling when you started to cry. Do this for each day that you're following his sleep regimen, and bring it all in to him next week. This will help give him a clearer picture of just how tired you are, and might give both of you a better idea of what's going on with your crying. Do at least try to follow his sleep regimen, too - it's only fair.

Good luck in finding the answers you want, and the diagnosis you need!



Thank you! I have always favored the pictorial representation of information because it’s much easier for me to follow without getting distracted. I really like this idea. I will try – I did try. He wants me up before 7, but it’s Saturday and I’m on break… I woke up by 7:45 and was in the shower by 8, so I think that counts :).


It's amazing how much better it can make you feel just to know what's wrong and to start working toward a treatment! Even just knowing that everything you tried before may have been the wrong thing, and you're finally working toward finding out the truth and getting the right treatment is such a relief!


True! It was that realization more so than the actual appointment that made me feel better about things.


Keep in mind, I'm neither a doctor nor an anatomist. I'm just a science geek who reads a lot. And, since I have a lot of free time at work, I have the time to look this stuff up. If I'm understanding what I'm reading correctly, the mechanics of crying involve a muscle contracting and expanding to put pressure on the lacrimal gland (or maybe the lacrimal sac?), thus forcing the tears out through the tear duct.

It's my understanding that in cataplexy attacks, your body basically loses control of certain muscles. So, I'm wondering if it's possible that cataplexy can affect those muscles that are involved in crying and, in so doing, cause crying as a cataplectic attack. I've heard it can affect other eye muscles and cause a twitch/tic (though I haven't done that research yet), so it could make sense. When you say you start crying, do you mean the whole experience? I mean, are you actually sobbing, or just have tears running down your face? I ask because, if it is a cataplexy attack, I'd expect it to be just the tears running down your face--the result of those muscles around your lacrimal gland/sac contracting--without the actual sobbing, which is associated more with emotional attacks.


Yep. The tears just kind of well up and fall. It’s awful. I feel like it’s very hard for adult to take me seriously when I’m so prone to crying. That said, when I’m really, really upset, I will sob. But, that doesn’t happen initially. Perhaps the transition is where the cataplectic attack ends… because I usually can’t sob if I can’t speak (if that makes sense).


Then again, some people "cry"--or at least have tears running down their faces--from seeing or hearing something beautiful or in some other way emotionally moving, which would mean a heckuva lot of people having minor, unknown attacks of cataplexy, right? So the crying itself may not be related to the cataplexy at all. It may, instead, be related to the fact that you're sleep deprived--and stressed out because of it--and not entirely in control. That doesn't make it a mood disorder, but a side effect, if you will, of the underlying sleep disorder.


Yes, that’s true. I don’t know the biological basis for emotional crying, so it could be that I’m just a little trigger happy. I’m sure that it’s exacerbated by the sleepiness – I’ve always been much more emotionally charged when tired, even as a kid – but I don’t think that accounts for all of it. I would be perfectly happy just being a bit less sensitive, which I think adequate sleep will provide. Oh man, I would get to drop the Lamictal and the Celexa. That would be fantastic.

I’m anxious about my sleep test, though. I mean, I know I’m constantly tired, and I know when I do sleep, I spend an inordinate about of time in REM because I remember several disjointed segments of very vivid dreams. Yet, it frequently takes me more than 10 minutes to fall asleep voluntarily. I feel like that has to do with the Adderall in my system; when I did a mini-experiment and went off it for a day, I was much more exhausted, and I think I fell asleep faster. At least, I know I slept more that day than usual. That would probably explain why it takes me about 20-30 minutes into class to start dozing before I can’t fight it anymore and it turns into a sleep attack, often with REM. Before the meds, I’m pretty sure I was falling asleep within the first 15 minutes, but it’s difficult to recall… I just worry that the test won’t be an accurate reflection of everything I’ve experienced in the last 8 years, with emphasis on the last 4 months, especially since so much is riding on this.


The inability to speak or hold your head up, however, definitely sounds like cataplexy.


That would explain SO MUCH.

#16 SeeBee

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Posted 22 December 2012 - 05:17 PM

Hey, you got up earlier than I did, so that definitely counts :) As in most things, you don't have to follow it exactly, the trying is what counts. Glad you liked the chart idea! The first neurologist I saw had me do that after I couldn't clearly explain my situation to him (I had no idea what cataplexy was, and hence had no way to explain why I occasionally fell for no reason) and it's what brought it to his attention that there really was something abnormal going on. I hope it has the same result for you!

The stronger and strongest reactions definitely do sound like cataplexy. Yours last a LONG time though, that must be scary :( Do you dream at all in that time? I know that happens for some people. Cataplexy for me comes so fast that I sometimes don't have time to catch myself, and leaves just as quickly - all but a couple of mine have come and gone in under 30 seconds.

Kinda-funny, kinda-relevant story - Like you, Mom's entire family cries when they get really angry or frustrated. I used to, and I found it humiliating, which always upset me even more. I used to pray that I'd stop, or "grow out of it," I hated it so much...and shortly thereafter, started falling on my face instead :rolleyes: I've come to the conclusion that it must be my body's "oh sh*t" button, for when I feel too much, or something.

Try not to worry too much about the test, though; anxiety will only keep you awake, which will change your results! Ask your doc which meds he wants you on at the time, too. Let us know how it goes :)



#17 Duck Master AJ

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Posted 23 December 2012 - 01:05 AM

Okay so I was in bed, about to fall asleep (I know because I started thinking about grass-covered alligators in shopping carts), when I felt something touch my leg. I thought it was just my pajamas until it started moving up my leg. It felt like two fingers (thumb and pointer) traveling up my legs with very light grabbing motions. I kicked out, but it didn't stop. It didn't get more forceful, but it didn't stop. I got so scared that I got out of bed and ran to my bathroom. I came back to bed (where I am now), and even though I'm extra tired (no naps today), I'm scared to try to sleep... I don't even know what happened. It's never happened before :(.

#18 munky

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Posted 25 December 2012 - 12:47 AM

Okay so I was in bed, about to fall asleep (I know because I started thinking about grass-covered alligators in shopping carts), when I felt something touch my leg. I thought it was just my pajamas until it started moving up my leg. It felt like two fingers (thumb and pointer) traveling up my legs with very light grabbing motions. I kicked out, but it didn't stop. It didn't get more forceful, but it didn't stop. I got so scared that I got out of bed and ran to my bathroom. I came back to bed (where I am now), and even though I'm extra tired (no naps today), I'm scared to try to sleep... I don't even know what happened. It's never happened before Posted Image.


Sounds like a hypnagogic hallucination to me. Again, I hope someone who's experienced them will chime in, but from everything I've read both here and elsewhere, HH can be tactile, as well as visual, auditory and olfactory. Pretty much, they run the whole gamut. Another thing to bring up with the doctor.

And what SeeBee said about the medications is a very good point. Some medications can suppress REM sleep, so they will affect the results of any sleep study. She's also right to say not to worry about the study, though. I was sure I'd have a hard time sleeping for the study. I never sleep well in a bed that isn't mine--visiting friends, hotels, whatever, I have a hard time falling asleep and staying there. When you add in all the wires stuck to you everywhere ... thought I'd never get to sleep. However, the tech who wired me up was very friendly and understanding, the environment in the sleep center was very calm, and I was nice and relaxed when I climbed into bed. It helped that I was the only one there, I'm sure, but I fell asleep faster than I normally do at home. Probably also helped that I kept telling myself that this test was the first step to answers, and the sense of relief I got from that was like a ton of weight lifted off my shoulders.

#19 Duck Master AJ

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Posted 28 December 2012 - 02:39 PM

I had my second meeting with the sleep doctor. This one went much better; I was able to squeeze the important information (loss of voice/head control) into the conversation. I had to repeat myself a few times to get him to focus on what I was saying, but he eventually picked up that I was harping on something relevant.

He scheduled me for a PSG followed by the MSLT on the 9th and 10th respectively, though they’ll let me know if a sooner slot opens up (I return to school on the 15th, so that doesn’t give us much room to discuss treatment options). Either way, this is movement in the right direction! I’m still nervous that it’s not going to tell us anything useful and I’m going to be left in the same place I am now. That would be horrendous.

A little advice to help your doc out - draw or print out a daily chart, with a little box for each hour of the day. First, black out all the time in which you've slept, including naps. Second, mark the time at which you've eaten a meal with an "M." Then, mark any snacks you ate with an "S", and any crying episodes like those you described with an X. On another sheet of paper, write down the date of the crying episode, and what you were thinking or feeling when you started to cry. Do this for each day that you're following his sleep regimen, and bring it all in to him next week. This will help give him a clearer picture of just how tired you are, and might give both of you a better idea of what's going on with your crying. Do at least try to follow his sleep regimen, too - it's only fair.


I did this – he loved it! I think it really helped him see the extent of my problem. I also wrote in when I took the Adderall and how dramatic a difference it made on the amount of time I spent asleep. It’s a shame it alone can’t fix the sleepiness; otherwise I’d be set!



The stronger and strongest reactions definitely do sound like cataplexy. Yours last a LONG time though, that must be scary. Do you dream at all in that time? I know that happens for some people. Cataplexy for me comes so fast that I sometimes don't have time to catch myself, and leaves just as quickly - all but a couple of mine have come and gone in under 30 seconds.


Yeah, they do. I’ve never clocked the head thing, and it’s likely that my sense of time is warped – it usually is during the more severe reactions. The voice thing definitely lasts a while though – I’m usually more aware of my surroundings with the more mild episodes. If I’m on the floor, there is a definitely possibility I will fall asleep there, which pretty much equals dreaming. For the voice and head, they come on very quickly such that there’s nothing I can do; however, if the full body crumble happens, it’s a more gradual onset.


Kinda-funny, kinda-relevant story - Like you, Mom's entire family cries when they get really angry or frustrated. I used to, and I found it humiliating, which always upset me even more. I used to pray that I'd stop, or "grow out of it," I hated it so much...and shortly thereafter, started falling on my face instead. I've come to the conclusion that it must be my body's "oh sh*t" button, for when I feel too much, or something.


Yeeeep. That’s where I am, all right. Perhaps falling on my face is in my future as well. I think I’d prefer that, actually. I feel like it would be easier for me to explain to people that I have cataplectic reactions to strong emotional stimuli than I just cry all over the place because… I do. I feel like that detracts from my adult credibility…


Sounds like a hypnagogic hallucination to me. Again, I hope someone who's experienced them will chime in, but from everything I've read both here and elsewhere, HH can be tactile, as well as visual, auditory and olfactory. Pretty much, they run the whole gamut. Another thing to bring up with the doctor.


I mentioned it. I don’t know how much he paid attention to it – or my fan story from the last meeting – but the important thing is that he got the voice thing. That one happens more often and is more disruptive to my normal function.


And what SeeBee said about the medications is a very good point. Some medications can suppress REM sleep, so they will affect the results of any sleep study. She's also right to say not to worry about the study, though. I was sure I'd have a hard time sleeping for the study. I never sleep well in a bed that isn't mine--visiting friends, hotels, whatever, I have a hard time falling asleep and staying there. When you add in all the wires stuck to you everywhere ... thought I'd never get to sleep. However, the tech who wired me up was very friendly and understanding, the environment in the sleep center was very calm, and I was nice and relaxed when I climbed into bed. It helped that I was the only one there, I'm sure, but I fell asleep faster than I normally do at home. Probably also helped that I kept telling myself that this test was the first step to answers, and the sense of relief I got from that was like a ton of weight lifted off my shoulders.


That’s reassuring. I am curious, though, what they count as being asleep. I mean, I will frequently start having dreams before I’m completely asleep. I know it’s a dream (and not my imagination) because I’m not controlling it. It’s definitely bizarre, like all of my dreams. I really don’t know what to call it, though. That kind of thing almost always happens within 10 minutes of trying to go to sleep, but at what point I actually fall asleep, I’m not sure. Also, is it possible to have sleep attacks right after waking up? I’ll wake up from my alarm, switch it off, fall asleep, have a whole dream, and wake up two minutes later.

In the interim, I have to figure out how to get all my course work finished since it’s looking like I won’t be getting much – if any – medicinal help before I have to go back to school. Ugh… I just want to nap.

#20 dormir

dormir

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Posted 29 December 2012 - 01:11 PM

Stopping medication that helps you get through days is tough, but important for sleep studies. Try your best to stop anything that involves stimulants or medication that affects sleep cycles.

I stopped Ritalin and Flexiril before the sleep study, but it was very hard. I was falling asleep in class, totally unfocused and disorganized other times, and the Flexiril (for TMJ) was my way to not being in so much pain. I didn't notice an improvement with the hallucinations or sleep paralysis (or super vivid dreaming that wakes me up), but I still had to/wanted to stop the medication just in case.