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Hypnagogic Hallucinations


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#21 sweetest_shone

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Posted 10 March 2013 - 02:53 PM


It's possible that you were not as awake as you thought you were. If you were comfortable, and browsing away you may have started to go to sleep without realizing it. That could explain the HH. I now that I have many times started to drift off while browsing the web without really noticing what is happening. You could have even started to slip into the realm of Automatic Behaviour if you were still reading and clicking through to links. I usually only get HH and SP under very specific conditions though.



#22 sweetest_shone

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Posted 10 March 2013 - 03:06 PM

Besides the TV thing I have never had other issues. Does this mean my N is progressing? My EDS that day was very bad.. I was at a breaking point and in tears by days end.
I just want to know if its getting worse, I'm scared. I know that might not be something that can really be clear cut answered from what I've said... And I'm not trying to get medical advice. I'm just scared.

#23 MINItron

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Posted 10 March 2013 - 03:41 PM

Narcolepsy ebbs and flows in most people. It really responds to the stress in your life, and there are a thousands little things that could make you have a bad day or a bad week.

Is there something stressing you out in your life that maybe you haven't noticed?

Have you changed your routine in some small way that may have affected you sleep patterns?

Have you added a new food or personal hygiene product to your daily routine that is out of the ordinary for you?

Did you eat more refined sugars or other carbohydrates than normal for some reason?

 

These are all little things that alone or compounded could make your EDS worse. Having a bad EDS day is definitely going to put you at risk for having HH or SP. If you are really sleepy you could easily have a microsleep, have a HH, wake up, and never notice that you were ever asleep.

 

It could be something as simple as an extra spoon of sugar or a different creamer in your morning coffee, or skipping your morning coffee all together. I know that mine gets better and worse all the time. Often I can pick out what has changed, and undo the change, but sometimes it is just a mystery. 



#24 sweetest_shone

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Posted 10 March 2013 - 04:16 PM

My meds were changed and i started them that day. That's the only thing I can really think of that changed... Oh and a new alarm clock.
There are a few things that are stressors in my life at the moment. The new N Dx being one of them and changing meds and my husband working nights leaving lots on my plate are the main constant ones.
I don't normally notice a change in my N or N symptoms when I change small things around but that is something that I will definitely keep in mind b/c I did not know that!!

#25 MINItron

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Posted 10 March 2013 - 04:52 PM

Sounds like you had a lot of little things pile up on you at once. N is good at making mountains out of mole hills. Little things that maybe would have been no big deal to you in the past now can trigger a swing in symptoms. On the other hand you may find at times that a dreaded big change has no effect at at all. Everyone is different, and every new situation is different. That is part of what makes treating N so difficult.



#26 sweetest_shone

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Posted 10 March 2013 - 05:28 PM


Sounds like you had a lot of little things pile up on you at once. N is good at making mountains out of mole hills. Little things that maybe would have been no big deal to you in the past now can trigger a swing in symptoms. On the other hand you may find at times that a dreaded big change has no effect at at all. Everyone is different, and every new situation is different. That is part of what makes treating N so difficult.



#27 sweetest_shone

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Posted 10 March 2013 - 05:28 PM



Sounds like you had a lot of little things pile up on you at once. N is good at making mountains out of mole hills. Little things that maybe would have been no big deal to you in the past now can trigger a swing in symptoms. On the other hand you may find at times that a dreaded big change has no effect at at all. Everyone is different, and every new situation is different. That is part of what makes treating N so difficult.



#28 sweetest_shone

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Posted 10 March 2013 - 05:29 PM



Sounds like you had a lot of little things pile up on you at once. N is good at making mountains out of mole hills. Little things that maybe would have been no big deal to you in the past now can trigger a swing in symptoms. On the other hand you may find at times that a dreaded big change has no effect at at all. Everyone is different, and every new situation is different. That is part of what makes treating N so difficult.



#29 sweetest_shone

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Posted 10 March 2013 - 05:32 PM

Yeah, that's seems to happen: mole hills become mountains around here! Lol.
Thanks for your advice.
I sound like a crazy person.

#30 MINItron

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Posted 10 March 2013 - 07:42 PM

Yeah, that's seems to happen: mole hills become mountains around here! Lol.
Thanks for your advice.
I sound like a crazy person.

 

Nope, you don't sound like a crazy person. You sound like a narcoleptic with too much on their plate right now. 



#31 sweetest_shone

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Posted 10 March 2013 - 09:28 PM

Thank you. Really.

#32 dormir

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Posted 12 March 2013 - 10:57 AM

I am still missing a narcolepsy diagnosis, but I have HH 3-5 nights a week.  

 

 

It is not always with SP.  SP happens 2-4 times a week and almost always during naps (spontaneous and planned).  

 

 

My SP increases when I'm extremely stressed out.  The past few weeks have been very stressful and I'm having SP nightly.  I hate it.  

 

 

My disruptive vivid dreams occur nightly, but tend to become more conflicted during stressful times.

 

 

My HH does not usually change with stress.  

 

 

HH used to freak me out because while I've had SP, HH, and EDS my whole life, I heard growing up that I was demon possessed and/or crazy.  Imagine trying to work through SP and HH thinking it was demons torturing me because I did something bad?  Because of this, my HH used to be much more ominous and scary, usually involving very loud, hurtful noises and big, shadowy figures trying to hurt me.

 

 

Once I met with the pulmonologist who suggested narcolepsy, my HH didn't decrease in frequency, but they're no longer scary.  They're neutral and I can usually recognize them now. They usually involve:

 

 

- quiet music that I've never heard

 

- muted conversations or radio (someone else said this, too.  I'm not involved in the HH if I hear conversation and I don't understand what they're saying)

 

- lights slowly blinking on or off 

 

- silhouettes of family members walking through the bedroom (no one is in the room or even home when this happens)

 

- once in a while, a family member talking to me, but no one is really there 

 

- a doorbell  (we don't have a doorbell)

 

- the room swaying back and forth  (*** this may be part vertigo for me because my ears ring really loudly when this happens sometimes. It may not be a HH, but I want to put it out there, too.  The room swaying usually only happens when I'm going into sleep or coming out of sleep.)

 

 

 

If I can give you any advice, it is to fully and consciously recognize what HH is.  Once you do this, your HH may become less terrifying and less frequent.

 

 

Like I said, once my doctor told me it may be narcolepsy, and I researched it, I felt like everything made sense!  I'm not crazy!  I'm not demon possessed!  I felt validated!  But then my MSLT was inconclusive so... :(

 

 

Anyway, hang in there.   :)



#33 sweetest_shone

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Posted 12 March 2013 - 05:42 PM

Well I think this goes w/o saying.. But i do not want HH. It almost seems like now that I do have a Dx I have more issues or symptoms of N, I guess you could say. I'm not sure if its b/c now I am not excusing everything away and I have a reason for 'this or that' or b/c I'm so paranoid or what, I don't know.
But I truly have been under more stress lately and its all tied in together...

#34 dormir

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Posted 12 March 2013 - 05:49 PM

No one really wants HH.  

 

 

But the more you understand and acknowledge it, what it is, what triggers more episodes, and the less you fear it, they may decrease.  Acknowledging doesn't mean to think about it all the time, but more like recognizing everything involved and trying to develop strategies that may work for you.

 

 

For me, my anxiety doesn't seem to cause more HH, but causes more SP.  For you, and for a lot of people, more anxiety tends to increase HH.  

 

 

Sleep is disturbed with stress no matter who the person is. Now that you seem to recognize your HH increases with increased anxiety, you can acknowledge that and try to manage waking stress better (if possible), plus maybe improve your sleep hygiene as well (if it needs to be improved).  

 

 

It is really difficult to not let stress interfere with sleep, though.  I think if you can figure out how to do that, not just for yourself, but for others, you will be a very rich person.   :D



#35 sweetest_shone

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Posted 13 March 2013 - 07:31 PM

I was going to say I always feel like I sleep really great and then I wake up tired and not refreshed at all! So, I have no idea how to improve sleep quality or hygiene or any of that! Haha
I think it would be really hard for me to eliminate stress even in the least given the situation I am in -because of the N. I can't get an evening routine down for me and the little one b/c I can't get it done.. But it all has to be done. I usually end up sacrificing my own meal or shower or I leave the kitchen and livingroom an insane wreck. I just can't get it all done... And that is extremely stressful for me!

#36 munky

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Posted 13 March 2013 - 10:09 PM

It almost seems like now that I do have a Dx I have more issues or symptoms of N, I guess you could say. I'm not sure if its b/c now I am not excusing everything away and I have a reason for 'this or that' or b/c I'm so paranoid or what, I don't know.

 

I don't think it's that you're having more issues or symptoms of Narcolepsy, just that you're starting to recognize them for what they are.


As an example, for me, HH is one of those things. They've been present all my life, though I never knew what they were called. I remember, even as a child, saying to someone, "You know those weird half-dreams you have when you're right on the edge of sleep, but not really asleep yet?" and almost invariably they'd say they had no idea what I was talking about. I always just shrugged that off, and went on to describe whatever craziness I'd been intending to tell them. It never occurred to me that it might indicate something actually being wrong, I just blew it off as yet one strangeness, one more way I was different from everyone else. And it never bothered me to be weird, I rather took pride in the fact. It wasn't until my Narcolepsy diagnosis last year, when I started doing more research about symptoms and effects of Narcolepsy, that I realized those "weird half-dreams when you're right on the edge of sleep, but not really asleep yet" were probably HH. And even then, since it's something that's happened all my life, it didn't really mean much. It was just a moment of, "Oh, that's what that is!"

 

As you've said, it's been happening for years with the TV. Now, you've got another one with your hubby coming home. That doesn't mean it's worse, just that you have a greater repertoire of hallucinations. Heck, mine almost never repeat, though certain elements might. I might be having a conversation with my cat about the latest discoveries in astrophysics (I'm a total nerd!), or I might see someone or something moving around in my room, or I might hear my mother talking to me from the hallway, or hear a vehicle pull into the driveway (terribly unlikely, considering where I live). Once, I heard a helicopter landing in the front field, and my mother telling me she'd been called back to active duty on an emergency basis (she's been out of the Navy for 40 years), and she was headed for the space station, so she'd leave my dinner in the crock pot and would I please feed the dogs before I left for work?

 

Since it's been happening for years, long before teh Narcolepsy diagnosis, I've got a question. Did it bother you before you knew it was likely caused by the narcolepsy? Or did you reach a point that you knew it wasn't real and you just ignored it? I ask because it sounds like it wasn't more than mildly irritating before, but now you're angry about it. And I'm not saying there's anything wrong with that! But if that's the case, it sounds like you're angry about the diagnosis and having a lot of difficulty with accepting it. It's very hard to help someone through that stage from a distance. Is there anyone at all among your friends of family whom you could sit down with and vent all the anger, fear, and whatever else you're feeling? Sometimes, it helps just to get it all out where someone you trust--someone who will llisten without giving you inane advice like "go to bed earlier"--can hear it, acknowledge it, and help you come to terms with it.

 

I know it helped me. I ranted to my neighbor about all of it, after which she asked me questions about narcolepsy, what it really means, how I could expect it to affect my everyday life, and offered suggestions for ways I could help mitigate some of the effects, like cutting down the number of classes I was taking, refusing to do anything that would interfere with what I need to do to keep myself happy--like refusing to do anything on Saturday or Sunday when I've had to work Friday or Saturday night. She also made the very helpful suggestion that I carry some of my meds in my purse, just in case I forgot to take them before I left for work. Hadn't been an issue before, but it happened a week later and, thankfully, I'd done as she suggested. Anyway, that conversation--the ranting to reduce all the built-up emotional baggage, followed by the rational discussion of exactly what it all meant--was a huge help to me. And I ranted about it all--the HH, the sleep attacks, the pure exhaustion, the brain fog--all things that have been with me pretty much my entire life and I'd always just dealt with it, but now I had a cause, something to blame, and it all blew up.



#37 sweetest_shone

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Posted 14 March 2013 - 06:04 AM

I don't think it's that you're having more issues or symptoms of Narcolepsy, just that you're starting to recognize them for what they are.

As an example, for me, HH is one of those things. They've been present all my life, though I never knew what they were called. I remember, even as a child, saying to someone, "You know those weird half-dreams you have when you're right on the edge of sleep, but not really asleep yet?" and almost invariably they'd say they had no idea what I was talking about. I always just shrugged that off, and went on to describe whatever craziness I'd been intending to tell them. It never occurred to me that it might indicate something actually being wrong, I just blew it off as yet one strangeness, one more way I was different from everyone else. And it never bothered me to be weird, I rather took pride in the fact. It wasn't until my Narcolepsy diagnosis last year, when I started doing more research about symptoms and effects of Narcolepsy, that I realized those "weird half-dreams when you're right on the edge of sleep, but not really asleep yet" were probably HH. And even then, since it's something that's happened all my life, it didn't really mean much. It was just a moment of, "Oh, that's what that is!"

As you've said, it's been happening for years with the TV. Now, you've got another one with your hubby coming home. That doesn't mean it's worse, just that you have a greater repertoire of hallucinations. Heck, mine almost never repeat, though certain elements might. I might be having a conversation with my cat about the latest discoveries in astrophysics (I'm a total nerd!), or I might see someone or something moving around in my room, or I might hear my mother talking to me from the hallway, or hear a vehicle pull into the driveway (terribly unlikely, considering where I live). Once, I heard a helicopter landing in the front field, and my mother telling me she'd been called back to active duty on an emergency basis (she's been out of the Navy for 40 years), and she was headed for the space station, so she'd leave my dinner in the crock pot and would I please feed the dogs before I left for work?

Since it's been happening for years, long before teh Narcolepsy diagnosis, I've got a question. Did it bother you before you knew it was likely caused by the narcolepsy? Or did you reach a point that you knew it wasn't real and you just ignored it? I ask because it sounds like it wasn't more than mildly irritating before, but now you're angry about it. And I'm not saying there's anything wrong with that! But if that's the case, it sounds like you're angry about the diagnosis and having a lot of difficulty with accepting it. It's very hard to help someone through that stage from a distance. Is there anyone at all among your friends of family whom you could sit down with and vent all the anger, fear, and whatever else you're feeling? Sometimes, it helps just to get it all out where someone you trust--someone who will llisten without giving you inane advice like "go to bed earlier"--can hear it, acknowledge it, and help you come to terms with it.

I know it helped me. I ranted to my neighbor about all of it, after which she asked me questions about narcolepsy, what it really means, how I could expect it to affect my everyday life, and offered suggestions for ways I could help mitigate some of the effects, like cutting down the number of classes I was taking, refusing to do anything that would interfere with what I need to do to keep myself happy--like refusing to do anything on Saturday or Sunday when I've had to work Friday or Saturday night. She also made the very helpful suggestion that I carry some of my meds in my purse, just in case I forgot to take them before I left for work. Hadn't been an issue before, but it happened a week later and, thankfully, I'd done as she suggested. Anyway, that conversation--the ranting to reduce all the built-up emotional baggage, followed by the rational discussion of exactly what it all meant--was a huge help to me. And I ranted about it all--the HH, the sleep attacks, the pure exhaustion, the brain fog--all things that have been with me pretty much my entire life and I'd always just dealt with it, but now I had a cause, something to blame, and it all blew up.



#38 sweetest_shone

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Posted 14 March 2013 - 06:21 AM

The TV thing was admittedly confusing before but I did just shrug it off. And i was the same as you w/ my Dx- like " oh! thats what the Tv thing is!! wow!"
Hearing my hubby come home when I thought of myself as 100% awake was just plain scary. I was telling him about it the next day and i was in tears. It's the only other HH that I have ever had. I was scared and part of me seriously felt like a crazy person.
Of course I'm upset and haven't really come to terms w/ the N Dx yet, I guess that was part of the reason that I was asking if it meant it was getting worse b/c I would be almost devastated at this point. It would be like someone telling me "oh yes, you have N and it seems to be progressing".
As far as talking so someone about it.... I have talked to my Pcp at my last appt. She is great. She was in the room w/ me for an hour and a half. Not the few min usual! She actually has N herself so she can relate and she gave me some really great advice. She could sense that I'm not taking the Dx very well, I think I actually said that. And she told me about a few resources I had available to me, etc.
Anyways, being upset about this recent HH about hearing my hubby come home was scary to me and truly made me feel crazy. I don't think it was an underlying issue I'm having w/ N.
So apparently I'm going to have N for the rest of my life so I figure N and I have a really long time to work things out!! ;)

#39 exanimo

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Posted 14 March 2013 - 03:01 PM

I was going to say I always feel like I sleep really great and then I wake up tired and not refreshed at all! So, I have no idea how to improve sleep quality or hygiene or any of that! Haha
I think it would be really hard for me to eliminate stress even in the least given the situation I am in -because of the N. I can't get an evening routine down for me and the little one b/c I can't get it done.. But it all has to be done. I usually end up sacrificing my own meal or shower or I leave the kitchen and livingroom an insane wreck. I just can't get it all done... And that is extremely stressful for me!

 

I'm sorry to hear that things are so stressful! I can only make suggestions here, and maybe you have all ready tried some of them, but I wanted to give what I can. 

 

Routine is highly-overrated, especially for us PWNs. If we can manage a routine, that's great. But more often than not, our N gets in the way of that. Having a little one is only going to make that more difficult. Rather than trying to squeeze everything in, perhaps you should prioritize things? I have had my own problems with this in the past. But it is imperative to understand that especially with EDS, we only have 'pockets of good time' to use. So if I'm feeling good, but know that in a few hours I will probably be tired and need a nap, I know I have to use that time for something. So what is most important in that time? If it's the kitchen, then I do the kitchen. If I still have energy after that, I have to be careful not to use it up with a 'break'. This tends to happen a lot. When I'm done cleaning or doing my homework, I think, okay well I'm going to take a break now. But that break can lead to a lot longer than it needs to be, and before I know it, I'm leaving my computer for a nap. Getting very little done that I had wanted to do.

 

But even if that does happen, you have to be realistic. That's OKAY. If you got the kitchen done, but maybe not the living room, that's okay! The living room is not going to punish you for it. It can always be done later. You have to make room for N in your life, accepting the pockets of good time, as well as those foggy interruptions. Fighting N is only going to take energy from those times where you do feel good and not tired. If you ease up and let things go, then you will not only be less stressed, but hopefully be able to get more done.

 

I can relate to trying to come to terms with N. It's not easy, and it's something that you can't really force to happen. It will just go it's own course. I thought I'd come to terms with it, but realized that I haven't, especially not emotionally. I haven't found a way to deal with the shame and guilt I feel when I miss something due to sleep, nor have I dealt with the anger of others asking me about why I missed that or didn't do that. But I will, it just has to take time I guess.

 

And even though you have a name for these symptoms, doesn't make them any different. It just means you understand them a little better. But it shouldn't make them scarier! Try and look at the positives of knowing about N, and working from there. I'm not saying to not acknowledge the negative emotions from it, but that you need to keep perspective of things. Hopefully things will get better for you, and I hope that maybe some of my suggestions might help. Or at least, knowing that other people are here for you might bring you some comfort. :) 

 

Good luck!



#40 sweetest_shone

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Posted 14 March 2013 - 06:14 PM

I'm sorry to hear that things are so stressful! I can only make suggestions here, and maybe you have all ready tried some of them, but I wanted to give what I can.

Routine is highly-overrated, especially for us PWNs. If we can manage a routine, that's great. But more often than not, our N gets in the way of that. Having a little one is only going to make that more difficult. Rather than trying to squeeze everything in, perhaps you should prioritize things? I have had my own problems with this in the past. But it is imperative to understand that especially with EDS, we only have 'pockets of good time' to use. So if I'm feeling good, but know that in a few hours I will probably be tired and need a nap, I know I have to use that time for something. So what is most important in that time? If it's the kitchen, then I do the kitchen. If I still have energy after that, I have to be careful not to use it up with a 'break'. This tends to happen a lot. When I'm done cleaning or doing my homework, I think, okay well I'm going to take a break now. But that break can lead to a lot longer than it needs to be, and before I know it, I'm leaving my computer for a nap. Getting very little done that I had wanted to do.

But even if that does happen, you have to be realistic. That's OKAY. If you got the kitchen done, but maybe not the living room, that's okay! The living room is not going to punish you for it. It can always be done later. You have to make room for N in your life, accepting the pockets of good time, as well as those foggy interruptions. Fighting N is only going to take energy from those times where you do feel good and not tired. If you ease up and let things go, then you will not only be less stressed, but hopefully be able to get more done.

I can relate to trying to come to terms with N. It's not easy, and it's something that you can't really force to happen. It will just go it's own course. I thought I'd come to terms with it, but realized that I haven't, especially not emotionally. I haven't found a way to deal with the shame and guilt I feel when I miss something due to sleep, nor have I dealt with the anger of others asking me about why I missed that or didn't do that. But I will, it just has to take time I guess.

And even though you have a name for these symptoms, doesn't make them any different. It just means you understand them a little better. But it shouldn't make them scarier! Try and look at the positives of knowing about N, and working from there. I'm not saying to not acknowledge the negative emotions from it, but that you need to keep perspective of things. Hopefully things will get better for you, and I hope that maybe some of my suggestions might help. Or at least, knowing that other people are here for you might bring you some comfort. :)

Good luck!