63 replies to this topic

[dormir]

APRIL 2, 2013 UPDATED SLEEP STUDY RESULTS IN POST #52!

 

 

 

 

 

Original post: 

 

Hello everyone!

I can't tell you how excited I am to find a board like this.

I have been lurking the past few days, reading about many of your experiences and I am both encouraged and discouraged at the same time. Let me tell you why. This is kind of a long post, so please bear with me. I would love feedback.


History:

For as long as I can remember, I have struggled with extreme exhaustion, vivid, non-stop, disruptive dreaming, even as a child.

I also had and have frequent sleep paralysis and hallucinations. Growing up in a religious environment, I could not talk about those things, though, because the few times I mentioned it, I was told I was possessed by demons.

Usually though, most people thought I had an active imagination or anxiety problems (admittedly, I have both). But I always felt it was beyond just these two things. I felt that I should never have to wake up exhausted because my dreaming was and is so disruptive.

I am almost 30. I don't have insurance so it was a struggle for me to find a doctor willing to refer me to a somnologist. I finally went to consult with one in January. It took 11 months for me to have a sleep study, but I just had one this past weekend.


Just backtracking a little bit:

My doctor (also a psychiatrist) treated me for clinical depression for a while, but Prozac and Lexapro gave me night terrors, I can't even speak of them today because they were so disturbing. They did not help me much with the daytime exhaustion, though there were some mood benefits. I struggle with depression and SAD so I noticed a slight upbeatness (is that a word? ), but the sleep disruptions were not worth the small benefits.

She also tried Wellbutrin, but that didn't help much. I didn't experience any relief with the dreaming.

She ruled out depression and started to treat the sleep problems as insomnia, though she did not want me on Ambien because she said it sounded like I got too much REM sleep (she was heading in the right direction, I think!). I tried Trazadone, hydroxyzine, and carbamazipine, but all gave me terrible sleep paralysis and hallucinations, though I felt sedated.

I have also tried valerian root and melatonin and both gave me nightmares similar to what I had with the Prozac in addition to terrible sleep paralysis.

Everything got much worse when I started working 3rd shift. I was a mess. That is when she referred me to the somnologist.

In the meantime, she diagnosed me with ADHD, which fits much better than the depression. You would think with ADHD I would have energy to balance out the exhaustion, but it unfortunately doesn't work like that. The exhaustion compounds the lack of focus.

I take Ritalin for the ADHD. I can still fall asleep after taking Ritalin sometimes.



January 2012 to present:

I never considered narcolepsy because I also thought of narcolepsy as extreme cataplexy.

I went to a teaching hospital that works with uninsured patients and the doctor, who was a fellow at the time, was really confused about what I was talking about. I felt crazy telling him. I didn't even go into a lot of detail about the hallucinations and sleep paralysis because I was concerned as being written off as being schizophrenic or something like that.

The doctor went to get the director of medicine and almost immediately after he sat down, he asked, "Has anyone ever told you that you may have narcolepsy?"

And I started giggling!

He went on to explain a lot about it, that it wasn't just the cartoon-ish version most people understand narcolepsy to be.

Even after this, I didn't go into the detail about hallucinations or sleep paralysis, but he was very understanding and did not write me off as needing to be admitted to their inpatient mental health clinic. The more I thought about what he said about narcolepsy, the more I thought this, I thought this could be me.

He also asked me about cataplexy experiences, which at the time, I never though I have had, but I have. My arms and legs have a lot of weakness during extreme laughter or excitement. I have only collapsed a few times, but I thought that was just because I was laughing a lot. It was uncontrollable muscle relaxing. Sometime I get lightheaded if I'm extremely angry, but have never collapsed.


Sleep study:

I am extremely nervous that my sleep study won't have good data. I'm afraid I'm going to be stuck where I am now. I stopped all medication, even MVIs, for 2 weeks. The doctor wanted me to have toxicology urinalysis done, but I couldn't get to the lab. This makes me more anxious. Hopefully he will take my word for it that I stopped. I fell asleep in class a few times (I haven't done that since I started the Ritalin last year) and napped more than usual because while the Ritalin isn't perfect, it helps me be more alert and focused.


At my sleep study, it took me forever to fall asleep, which is extremely uncommon. I was extremely anxious. I apologized to the sleep tech over and over. He said it was okay. Every time I woke up during the night, my heart was pounding, which is also unusual, but I guess the tech said that is kind of common because the body senses it is in a weird environment. The overnight tech said that I didn't have any apneas or snoring, so that is good.

During the MSLT, I don't think I slept during all the naps because I was also extremely anxious. I now understand how sleep latency is scored so I wish I would have paid attention to nap start and stop times. I know for sure I slept 2 times, but I don't know about sleep onset/REM onset time. The other 3 naps, I'm not sure.

Napping for me has always been weird though because I have the same problem everywhere I nap: I don't realize I'm napping until I wake up and my heart is pounding, I feel like I'm fighting sleep, or I have sleep paralysis. I sometimes can't tell if I'm dreaming or just having weird, random thoughts, but then my heart starts pounding upon "waking." Almost like my body is scared that it has been "sleeping." Does this make sense? When I try to describe it, I feel like it doesn't make sense.


Closing arguments:

I guess I'm extremely worried I won't be diagnosed with anything and be told everything is fine because my anxiety got in the way of "real" results.

Everything is not fine. I don't know what it is like to sleep restfully. I don't know what it is like not to remember my dreams, not to smell, taste, hear, feel, and see vividly in my dreams EVERY NIGHT. My dreams aren't usually pleasant. The fellow doctor said that even if my dreams don't terrify me, they still count as nightmares. That means I have nightmares every night. I just want peaceful sleep. I have dreamed enough for 5 lifetimes. I don't want to remember my dreams. I want to feel refreshed during the day. I don't want to fall asleep in class or at work or just sitting down for a few minutes.


Please, give me your opinions! I guess I need encouragement, reassurance, but also honesty. Maybe this is all in my head.

[DeathRabbit]

Hello everyone!

I can't tell you how excited I am to find a board like this.

I have been lurking the past few days, reading about many of your experiences and I am both encouraged and discouraged at the same time. Let me tell you why. This is kind of a long post, so please bear with me. I would love feedback.


History:

For as long as I can remember, I have struggled with extreme exhaustion, vivid, non-stop, disruptive dreaming, even as a child.

I also had and have frequent sleep paralysis and hallucinations. Growing up in a religious environment, I could not talk about those things, though, because the few times I mentioned it, I was told I was possessed by demons.

Usually though, most people thought I had an active imagination or anxiety problems (admittedly, I have both). But I always felt it was beyond just these two things. I felt that I should never have to wake up exhausted because my dreaming was and is so disruptive.

I am almost 30. I don't have insurance so it was a struggle for me to find a doctor willing to refer me to a somnologist. I finally went to consult with one in January. It took 11 months for me to have a sleep study, but I just had one this past weekend.


Just backtracking a little bit:

My doctor (also a psychiatrist) treated me for clinical depression for a while, but Prozac and Lexapro gave me night terrors, I can't even speak of them today because they were so disturbing. They did not help me much with the daytime exhaustion, though there were some mood benefits. I struggle with depression and SAD so I noticed a slight upbeatness (is that a word? ), but the sleep disruptions were not worth the small benefits.

She also tried Wellbutrin, but that didn't help much. I didn't experience any relief with the dreaming.

She ruled out depression and started to treat the sleep problems as insomnia, though she did not want me on Ambien because she said it sounded like I got too much REM sleep (she was heading in the right direction, I think!). I tried Trazadone, hydroxyzine, and carbamazipine, but all gave me terrible sleep paralysis and hallucinations, though I felt sedated.

I have also tried valerian root and melatonin and both gave me nightmares similar to what I had with the Prozac in addition to terrible sleep paralysis.

Everything got much worse when I started working 3rd shift. I was a mess. That is when she referred me to the somnologist.

In the meantime, she diagnosed me with ADHD, which fits much better than the depression. You would think with ADHD I would have energy to balance out the exhaustion, but it unfortunately doesn't work like that. The exhaustion compounds the lack of focus.

I take Ritalin for the ADHD. I can still fall asleep after taking Ritalin sometimes.



January 2012 to present:

I never considered narcolepsy because I also thought of narcolepsy as extreme cataplexy.

I went to a teaching hospital that works with uninsured patients and the doctor, who was a fellow at the time, was really confused about what I was talking about. I felt crazy telling him. I didn't even go into a lot of detail about the hallucinations and sleep paralysis because I was concerned as being written off as being schizophrenic or something like that.

The doctor went to get the director of medicine and almost immediately after he sat down, he asked, "Has anyone ever told you that you may have narcolepsy?"

And I started giggling!

He went on to explain a lot about it, that it wasn't just the cartoon-ish version most people understand narcolepsy to be.

Even after this, I didn't go into the detail about hallucinations or sleep paralysis, but he was very understanding and did not write me off as needing to be admitted to their inpatient mental health clinic. The more I thought about what he said about narcolepsy, the more I thought this, I thought this could be me.

He also asked me about cataplexy experiences, which at the time, I never though I have had, but I have. My arms and legs have a lot of weakness during extreme laughter or excitement. I have only collapsed a few times, but I thought that was just because I was laughing a lot. It was uncontrollable muscle relaxing. Sometime I get lightheaded if I'm extremely angry, but have never collapsed.


Sleep study:

I am extremely nervous that my sleep study won't have good data. I'm afraid I'm going to be stuck where I am now. I stopped all medication, even MVIs, for 2 weeks. The doctor wanted me to have toxicology urinalysis done, but I couldn't get to the lab. This makes me more anxious. Hopefully he will take my word for it that I stopped. I fell asleep in class a few times (I haven't done that since I started the Ritalin last year) and napped more than usual because while the Ritalin isn't perfect, it helps me be more alert and focused.


At my sleep study, it took me forever to fall asleep, which is extremely uncommon. I was extremely anxious. I apologized to the sleep tech over and over. He said it was okay. Every time I woke up during the night, my heart was pounding, which is also unusual, but I guess the tech said that is kind of common because the body senses it is in a weird environment. The overnight tech said that I didn't have any apneas or snoring, so that is good.

During the MSLT, I don't think I slept during all the naps because I was also extremely anxious. I now understand how sleep latency is scored so I wish I would have paid attention to nap start and stop times. I know for sure I slept 2 times, but I don't know about sleep onset/REM onset time. The other 3 naps, I'm not sure.

Napping for me has always been weird though because I have the same problem everywhere I nap: I don't realize I'm napping until I wake up and my heart is pounding, I feel like I'm fighting sleep, or I have sleep paralysis. I sometimes can't tell if I'm dreaming or just having weird, random thoughts, but then my heart starts pounding upon "waking." Almost like my body is scared that it has been "sleeping." Does this make sense? When I try to describe it, I feel like it doesn't make sense.


Closing arguments:

I guess I'm extremely worried I won't be diagnosed with anything and be told everything is fine because my anxiety got in the way of "real" results.

Everything is not fine. I don't know what it is like to sleep restfully. I don't know what it is like not to remember my dreams, not to smell, taste, hear, feel, and see vividly in my dreams EVERY NIGHT. My dreams aren't usually pleasant. The fellow doctor said that even if my dreams don't terrify me, they still count as nightmares. That means I have nightmares every night. I just want peaceful sleep. I have dreamed enough for 5 lifetimes. I don't want to remember my dreams. I want to feel refreshed during the day. I don't want to fall asleep in class or at work or just sitting down for a few minutes.


Please, give me your opinions! I guess I need encouragement, reassurance, but also honesty. Maybe this is all in my head.

MSLT and Sleep Study often give people with anxiety issues quite a rough time in in falling asleep. The whole idea of feeling like you have to fall asleep or you are failing is rough. Often times, they'll schedule two a few weeks apart and just throw the first one out as a dry run. But it's very possible you slept every nap. I thought I had only slept 1 nap, but I slept 4 out of 5.

[dormir]

Thank you!

Sorry for how long that post is. I will keep everyone updated and try not to be so anxious.

[SleepyRaffie]

Thank you!

Sorry for how long that post is. I will keep everyone updated and try not to be so anxious.

I was really stressed on my PSG and MSLT. I thought I had not slept in the naps (except one), but it turns out I had.

[dormir]

Interesting. When your nap was complete, did you feel like you hadn't slept at all? Like you awoke tired, but not feeling as if you had slept?

[munky]

My naps are always like that, both during the MSLT and now with my scheduled naps. I get up feeling a little bit better than when I laid down, but I never at any point feel like I'm actually sleeping. On the other hand, I know I must have, because I'd've been bored out of my mind if I'd just laid there awake for 20 minutes, and I'd feel like I'd been lying there for hours.

The MSLT was the same way. Two of my naps, when the tech asked if I'd slept, I said I must have because I remembered dreaming. The other three, when asked if I'd slept, my answer was, "I guess I must have, if it's been 20 minutes. Doesn't feel like it's been that long."

Any other time I have to do nothing for 20 minutes, it drives me guano. I have to have something to do--read, write, play a game, watch tv, pretty much anything.

[Megssosleepy]

Well it def sounds like you have N to me, and as long as you have a decent Doc even if your test results lack everything needed they should be able to give you a DX from your symptoms. You only need EDS and one other symptom to be considered an N, I think your SP and HH should make your DX easy as pie. Oh and make sure you tell the Doc about your catiplexy! I didnt realize I had that until way after my DX. But apparently no other disorder has C so that should help as well.

For my MSLT, I remembered dreaming but my test showed no REM... although I feel asleep for all 4 naps. I didnt have to take the 5th due to the fact that all four naps I feel asleep with in a minute No Caffeine will do that to me!
I was also struggling to stay awake between naps. That day was pure torture I thought they were waking me as soon as I fell asleep, didnt realize I got a full 20mins lol.

I am not sure if you will beable to get Xyrem w/o insurance, but if you can that will help with the SP and HH. I still have vivid dreams but none of the other crap. Many people dont even dream at all while on it!

Good Luck! and keep us posted.

[dormir]

munky: Thank you for the reassurance. That is really interesting about your naps!

megs: Thank you for the reassurance, too. I will be sure to talk about it at the follow up. I have to give the doctor the two week sleep journal I have, too, so hopefully he (or she) will spend enough time with me to talk about it.

[munky]

It's going to depend a lot on your doctor, I think. As far as I know, the only symptom I have is the EDS. But, then, I'm not sure I understand what cataplexy even is or how to identify it. Based on what I read on sites like WebMD before my first appointment with the neurologist, cataplexy requires some sort of "extreme" emotional trigger, and then you pretty much collapse. I can only think of two occasions in my 37 years when something like that happened--once, in 5th grade, and once several years ago. Then again, I'm not what I would call an emotional person. I mean, yes, I love my family and friends. Yes, I get angry, disappointed, amused, etc., and I was hearbroken when my father died, but "extreme" emotion? Not really. And I don't have attacks when I laugh. A few months ago, an old man on a bicycle rode out in front of my car in the dark--scared the bejeezus out of me, but no cataplectic attack. (Turned out to be minor. I hit the brakes, he bounced off the front of my car, cut open his forehead when he landed in the road, but no other injuries, thankfully.) So, as far as I know, I have no real cataplexy. Neurologist's report causes it "not significant cataplexy."

On the other hand, for the PSG, I actually slept for 7 or 8 hours, with something like 92% sleep efficiency. In the following MSLT, I fell asleep for all 5 naps, with a mean sleep time of 8 minutes, and 2 SOREMs. Neurogloist said that the 8 minute mean sleep time was borderline, but he diagnosed Narcolepsy anyway for 2 reasons:

• the 2 SOREMs
• In his words, "After sleeping as long as you did for the PSG, with that high a sleep efficiency rating, you shouldn't have been able to fall asleep at all for any of the naps. No one should--unless they have Narcolepsy."

As for dreams, mine are always very vivid and generally strange--and yes, they engage all my senses, too. I don't remember all of them, but I remember most of them, and there's been more than once when I've told someone about a strange dream I had and their response was, "What a terrible nightmare!" I always found that strange, because I thought nightmares were supposed to be frightening, and regardless of the content my dreams almost never scare me. "Almost never" in this case means I can only remember twice in my life that I had a dream that actually scared me. But, I have to qualify that with saying that there really isn't much that scares me. Still, a dream can be unpleasant without being frightening, and I wouldn't classify my dreams as "unpleasant," either--even when the RBD had me waking up with bruises, bloody knuckles and broken toes. I've always considered them to be mini-movies that are far more entertaining than anything Hollywood could ever create.

(Incidentally, for the RBD, I took a very low dose of clonazepam for about a month, many years ago, but hated it. Moved my bed out of the corner of the room so I didn't have a wall along one side, so I no longer hurt myself. It means less open floor space in the room, but it also means fewer blood-stained sheets, and a room that wouldn't look like a scene from CSI if anyone sprayed luminol on the walls.)

... Aaand, I'm babbling again. Sorry!

[Hank]

It's going to depend a lot on your doctor, I think. As far as I know, the only symptom I have is the EDS. But, then, I'm not sure I understand what cataplexy even is or how to identify it. Based on what I read on sites like WebMD before my first appointment with the neurologist, cataplexy requires some sort of "extreme" emotional trigger, and then you pretty much collapse. I can only think of two occasions in my 37 years when something like that happened--once, in 5th grade, and once several years ago. Then again, I'm not what I would call an emotional person. I mean, yes, I love my family and friends. Yes, I get angry, disappointed, amused, etc., and I was hearbroken when my father died, but "extreme" emotion? Not really. And I don't have attacks when I laugh. A few months ago, an old man on a bicycle rode out in front of my car in the dark--scared the bejeezus out of me, but no cataplectic attack. (Turned out to be minor. I hit the brakes, he bounced off the front of my car, cut open his forehead when he landed in the road, but no other injuries, thankfully.) So, as far as I know, I have no real cataplexy. Neurologist's report causes it "not significant cataplexy."

I was certain I did not have Cataplexy. As it turns out, it was hidden in plain sight. I certainly do have Cataplexy, I just didn't know what it was. You may not have Cataplexy.
Because my Cataplexy was "brief and transient", sometimes causing my knees to buckle, other times causing my face to sag, or my hands to loose their grip. Because it was always different, I just never picked up on any pattern.


I found that over time, I restricted my emotions and avoided situations that are actually triggers for my Cataplexy. For "extreme emotion"- a good belly laugh makes my head drop forward. That was embarrassing when it happened, so I just laugh. I haven't had a good belly laugh in a long time, so my head has not dropped in a long time either.

Sometimes my wife would tell me I looked "angry" when I was not. What she was noticing was slack facial muscles which looked like a frown or scowl. She was labeling that with an emotion, which became really annoying to me. I honestly thought there was something wrong with my wife that she kept accusing me of emotions I did not feel. I wish she or someone had just said- hey, your face is sagging- what's up with that.

I got a minor speeding ticket. The police officer noticed my slack face and suspected I had been drinking. Backup arrived and they searched my trunk, which just made it worse. I could not understand why people were so odd. My Cataplexy had been giving off "non-verbal" cues that caused others to respond differently to me- how odd.

Sometimes I would drop a coffee cup, for example. I focused on the cup and the hand that dropped it. I never noticed that both hands/arms dropped. I just knew I dropped my coffee.

So, if you do not have Cataplexy, good. But it really can be tricky to figure out. If you have "odd things" happen to you, or people's responses seem to be extra odd, see if there are any common threads, consider it. Hopefully, you do not have Cataplexy.

[munky]

Thanks, Hank! I've been thinking about it since I started reading the posts here, and there have been times when I've dropped something for no reason, but its generally from my right hand, and since I have an "essential tremor" in that hand (I asked that neurologist if that meant I'd die without it, since its essential. He said no, it means that essentially, they have no idea what causes it. Years ago, different neurologist, but this one is aware of it.), I always associated dropping things with the tremor. And there have been times when, walking--or just standing in line at the store, once--my right ankle just folds up under me and I go down like a sack of bricks, usually ending up with a sprained ankle. There, again, I've always had weak ankles, and associated it with that. Thinking back on those incidents, I can't think of anything that might have been a trigger, though: not laughing hard, not angry or upset, just going about my daily business. Still, I have a follow up appointment with the neurologist in March, and I plan to discuss it with him then--I'm already making notes. In the meantime, I'm watching carefully for moments like that and will add them to my notes.

I've never noticed anyone reacting oddly to me, but I don't spend a lot of time around people and I'm not sure I'd recognize it if they did. I'm face blind, on top of everything else, so I don't like being around even small groups of people. With strangers, I can't tell who's who, and groups of people who know me are sometimes worse--they expect me to know who they are and respond as such, but I have no idea who they are and treat them like strangers. So, I've always preferred my own company and never developed much in the way of social skills. In other words, I don't really know what an odd reaction would be!

[dormir]

hank:

That is really interesting about cataplexy. I have to talk to the doctor more about it. The more I think about it and instances where I have had unexplained, sudden muscle weakness, the more I wonder if it is cataplexy.

I was afraid that it may depend on the doctor, too. I'm hoping that I have a doctor that would be willing to treat for narcolepsy.

With the sleep paralysis, it is normally worse during naps, though I have it when I'm trying to wake up from a night's sleep, too.

The hallucinations usually only occur upon wakening, but once in awhile will occur as I'm falling back asleep. I don't hallucinate any other time.

My hallucinations are actually much more neutral than my dreams. Usually I hear music or quiet talking, though I never understand anyone or have heard the song before. If I have a visual hallucination, it is usually someone I know walking through the room or turning off/on lights. The hallucinations are very quick and now that I know what they are, I can go back to sleep very easily.

The sleep paralysis scares me more, but now that I know it isn't some evil presence holding me down, I just try to let it pass or try to fall back asleep.

My dreams are where the problems are. They're so disruptive!


munky: do you have something like a REM sleep behavior disorder?

[munky]

munky: do you have something like a REM sleep behavior disorder?

Yup. Diagnosed in my 20s with primary ideopathic insomnia and REM behavior disorder. Had both all my life, always knew I was an insomniac, but had no idea what the RBD was, aside from knowing I sometimes acted out my dreams, at least to some extent. In my case, it means I move a lot when I sleep, and if I have a dream where I'm fighting something, I punch, kick and even bite. I don't usually sleepwalk, though. At the time, my insurance wouldn't cover sleep studies, so the sleep doctor diagnosed me based on my history. Since the narcolepsy diagnosis, I sometimes wonder if it might actually have been found then, if I'd had better insurance. No worries, though, since the EDS was never really disruptive until this year, anyway.

[stoic]

Yup. Diagnosed in my 20s with primary ideopathic insomnia and REM behavior disorder. Had both all my life, always knew I was an insomniac, but had no idea what the RBD was, aside from knowing I sometimes acted out my dreams, at least to some extent. In my case, it means I move a lot when I sleep, and if I have a dream where I'm fighting something, I punch, kick and even bite. I don't usually sleepwalk, though. At the time, my insurance wouldn't cover sleep studies, so the sleep doctor diagnosed me based on my history. Since the narcolepsy diagnosis, I sometimes wonder if it might actually have been found then, if I'd had better insurance. No worries, though, since the EDS was never really disruptive until this year, anyway.

How common is it to act out dreams? My wife said she was saw me taking a basketball shot once in a dream. But I don't think she's ever seen me act out any other dreams.

[munky]

With me, acting them out only happens with certain types of dreams--dreams where I'm fighting something. Most people have occasional dreams where they're being chased by something (or so I've read), but I never really do. When a dream starts out with me being chased, I turn and fight. I was taught from a very young age to defend myself (both my parents were Navy, and I lived on naval bases until I was nearly 7), and I was taught to fight dirty. So, when I have these dreams, I'm punching, kicking, clawing, biting, and once, when I had a knife in the dream, a friend who saw me sleeping said it looked like I was stabbing someone.

Those dreams were a lot more common when I was younger. Apparently, most people have those "chase" dreams when they're stressed out, and I tended to be stressed out a lot when I was younger. These days, I just don't let things stress me out, most of the time. When I do feel stressed, I'll have dreams like that again.

Some people with RBD sleepwalk, sleep-drive, sleep-eat ... but those can all also be cause by other issues.

Although, when I think about it, I can't really say that those dreams where I'm fighting are the only times I act out my dreams. I suppose I could also be acting out the more pleasant dreams and just not realize it, since those wouldn't generally result in the injuries I inflicted on myself when my bed was by the wall. And I sleep alone, so there's no one to tell me if it happens. I mean, the cats aren't talking. When I have the violent dreams, I'll wake up with them at the far corner of the bed and glaring at me, instead of curled up around me, but if I have a pleasant dream, there might not be that much movement.

The other day, for example, I dreamt that I was lying in a hammock, reading a book. Yes, I dreamt I was reading. I even vaguely remember the plot of the book I was reading--which, in the light of day, was awful, but didn't seem so bad in the dream. Only real motion then would have been page-turning, so if the cats reacted at all, it would've been to move up under my hadn to get an incidental petting while it was moving. But also, there was no mention of RBD as a result of my PSG, and the dream I had then was not one of the violent ones. Don't remember what it was, but I remember that it was surprisingly calm and soothing, despite all the wires and contraptions and the strange bed and stranger watching me and all.

Wikipedia has a good overall description of it, including a mention that RBD and Narcolepsy may well be related. Dunno much about that.
http://en.wikipedia....havior_disorder

[Megssosleepy]

hank:

That is really interesting about cataplexy. I have to talk to the doctor more about it. The more I think about it and instances where I have had unexplained, sudden muscle weakness, the more I wonder if it is cataplexy.

I was afraid that it may depend on the doctor, too. I'm hoping that I have a doctor that would be willing to treat for narcolepsy.

With the sleep paralysis, it is normally worse during naps, though I have it when I'm trying to wake up from a night's sleep, too.

The hallucinations usually only occur upon wakening, but once in awhile will occur as I'm falling back asleep. I don't hallucinate any other time.

My hallucinations are actually much more neutral than my dreams. Usually I hear music or quiet talking, though I never understand anyone or have heard the song before. If I have a visual hallucination, it is usually someone I know walking through the room or turning off/on lights. The hallucinations are very quick and now that I know what they are, I can go back to sleep very easily.

The sleep paralysis scares me more, but now that I know it isn't some evil presence holding me down, I just try to let it pass or try to fall back asleep.

My dreams are where the problems are. They're so disruptive!


munky: do you have something like a REM sleep behavior disorder?

What is your sleep schedule like? Do you drink alcohol? Do you sleep with loud white noise? On your back or side?

When I was in my early 20s I worked two jobs and went to school... Nanny in the am, school late afternoon, and then a restaurant at night... then drinking after work... home late to bed... during this time period I has so much SP and constant Hallucinations every night and any time I would nap (Naps where always the worst, I would fight out of the SP only to get trapped in terrible dream longer)... I also had a real hard time fighting off sleep attacks and am lucky I never hurt myself or anyone else for that matter.

I find the more busy, stress, and unscheduled I am the worse my dreams and sleep issues are. I stayed awake with energy drinks and slept with Alcohol.

I am not saying you are anything like I was, but wonder if there is anything you can change in your life style to help? I feel so awful for you, knowing what it was like! I bet we could write some amazing horror books/films with our vivid dreams/SP/HH. I found that having loud white noise as well as sleeping on my side helped with the SP. If you notice during SP you are normally on your back... sleeping on your side for some reason helps! The white noise usually causes some far off music, but also helps with getting out of SP. I wouldn't suggest music or TV because for me the variables in the noise created a whole world of trouble.

Hope something I wrote was new to you, and you will find some relief.

[dormir]

Thank you for the suggestions!

Ironically, my sleep habits are pretty healthy, I think. I have a sleep journal to give to the doctor at my follow up so I guess he could tell me for sure, but I have tried to do everything I can to help with good rest since I've had sleep problems my whole life. I can thank google research for this and magazine articles back before there was google.


- I try to sleep consistently at the same time every night as much as I can. This one gets me sometimes, but I try to go to sleep before 11 pm.

- No eating, drinking (anything - alcohol included), exercise, or naps 3 hours before sleep.

- Fan by my head. I use it more for noise reduction because of years of apartment living.

- Sleeping in loose, light colored, cotton only pajamas.

- No caffeine, almost ever.

- Rarely drink alcohol.

- Room is completely dark.

- No TV, books, or music right before/during bedtime. I don't have anything like that in the bedroom at all. My room is for sleeping and that's it because of the creepy factor you mentioned!!

- Room temperature is kept around 70 degrees.

- No medications that might interfere with sleep, even multi-vitamins, after noon.


I wonder if I'm missing something. Let me know! This site is awesome!


Yes, you are right about the back sleeping SP! I used to have it more when I slept on my back, but now my SP seems to be more evenly divided between both sides and back. I don't stomach sleep. I usually fall asleep on my side and will wake up at various times either on my back or on my side.


Oh my gosh, what you just described about how to get out of sleep paralysis is exactly what I do during naps, but I know what's coming when I force myself to go back to sleep: more creepy, bizarre dreams. I could have written that myself. Thanks, you guys. This board is amazing.

We should totally write some screenplays. David Lynch, you ain't got nothin'.

[Megssosleepy]

Wow, you have a better sleep routine then I do! I was trying to think of anything else I could mention. I do know that when my SP was really bad my bedroom became almost taboo for me... I was terrified that demons had a demonic stairway under my bed...

Have you tried switching your room around, changing colors, moving furniture, ect ect

I find that sometimes the placement of stuff can disrupt a room. Think it has something to do with Feng Sway (not sure how to spell that) Peaceful colors make for a peaceful room. When I had a red room (yeah bad idea) was when my SP with demon troubles was the worst... now I am blues and grays seems to be working a bit better

If I come across any other suggestions I will let you know!

[munky]

Now that I own my own house, I was finally able to paint my bedroom exactly the way I wanted it. My bedroom is actually two small bedrooms that I joined up by having a contractor take the closet out of one room and cut an archway through the adjoining wall. On one side: my bed, some bookshelves with collectibles on them, my bedside table--small stuff. The other room has my dresser, closet, Tower O Yarn (stacking storage drawers crammed full of yarn, pattern books and crochet hooks), and cat stuff (food, water, litter box, etc.). In both sides of the room, I painted three of the walls a nice, medium blue, and the adjoining wall and through the archway are a very dark blue. Obviously, I like blue, but using the darker shades means it's easier to keep the room dark when I need to sleep during the day. Plus, when I wake up in the evenings and turn on my light, it's like I'm in a big light-box without having to actually buy one.

I have blackout curtains, but haven't gotten around to putting them up yet. I'm thinking that one of them will go up over the archway, so that I can leave the blinds up in the dressing/cat room for the cats to enjoy the view. Even with the blackout curtains, though, it's sometimes not dark enough--light can leak around the edges, after all, and then there's the light from the digital alarm clock, even with the dimmer switch turned all the way down. I've tried several sleep masks in the past, but hated the way they lie right over top of my eyes. This week, though, I found one at Walgreen's that does NOT lie directly over your eyes! The part that goes over your eyes is formed kind of like a lightly padded bra, so it actually arches over your eyes. The only thing I don't like about it is the adjustable strap. It uses velcro, and I despise velcro ... but it's worth it. Didn't cost much, either.

I also make sure that the bedding itself is not a vibrant color or pattern, because even that much will distract me. And I have no analog clocks or watches anywhere close to my room, because the ticking drives me nuts. I love pocket watches, but the one I had got left in my bathroom every day (when it was still working), in a drawer, wrapped in a washcloth because my bathroom is fairly close to my bedroom. I'll do the same with the new one when I get around to replacing it.

I only wear pajamas in my bedroom. I get dressed either in the bathroom, or in the "dressing room" half of the room (through the archway). And I keep the temperature in the house around 72 in the summer, 68 in the winter, because I like to sleep under heavy blankets. Trying to sleep under just a sheet or a light blanket leaves me feeling ... exposed, I guess, and tends to contribute to those "chase" dreams ("fight" dreams, in my case) that mean I don't get much sleep.

Don't know if any of these things will help you any, but thought I'd share what I do, just in case.

Also, a question: multivitamins might interfere with sleep? I'd never heard that! I'll have to start taking mine when I wake up, instead of just before bed.

[dormir]

Great ideas about moving furniture and bedding colors, you two!

Right now, I can't really move the furniture, but I wonder if switching some of it out for different stuff/different colors would be a good idea. My bedroom is black, white, gray, and some yellow, but mostly black and gray.

I love these ideas so much! Any excuse to try to redecorate is okay with me.


About the multivitamins: some people are sensitive to certain B vitamins and they may cause sleep disruptions/too much energy, though I don't know if all doctors and pharmacists agree about it. I figure it's just not good to risk it just because I covet good sleep. If you haven't had any problems then keep doing what you're doing!