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Hypnogogic Hallucinations

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#1 msmcd

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Posted 09 December 2013 - 07:49 PM

I am the mother of a 13-year old son with Narcolepsy--diagnosed 2 years ago.  Until recently, he had managed the EDS with naps and supplements.  About 6 weeks ago, he began having much more frequent and terrifying hallucinations as he fell asleep, both for naps and at night, and occasionally during the night.  We hypothesized that he was stressed or run down and overtired, so have made every effort to be really consistent with nap times and bedtime, and have lightened his load at school. We also wondered if the sugar around Halloween could contributed to this pattern. Two weeks ago he started Provigil so that he can nap once instead of twice at school, which has been helpful.  We don't think the Provigil has changed the frequency or intensity of the hallucinations, but the jury is still out.

 

I wonder if anyone has any thoughts about why the hallucinations are worse at some times versus others.  And, has anyone identified triggers or strategies for lessening them?  It is really heartbreaking to watch him go through this, and he is of course, really frustrated.

Thanks for your thoughts.



#2 Hank

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Posted 09 December 2013 - 08:39 PM

No tips from me- others will be better suited. I just wanted to say that you are a very good mother and your son has a good future ahead of him.

 

Just reassure him that what he is experiences, while still scary, is just a bad dream that is happening with his eyes open. It is a bad dream happening in the wrong place. It can cause him no harm. It has no power over him. It will pass. He is ok and he will be ok.

 

And, since this is a symptom, it is important to communicate with his doctor about this.



#3 britneyadams

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Posted 09 December 2013 - 10:43 PM

I noticed that mine tend to be on nights that I go to bed before I'm ready.  By that I mean, going to bed at 11 because its getting late but I am not really tired.  So, I understand the importance of the afternoon nap or to maintain a consistent bedtime, but perhaps reading a book or something relaxing in bed. This may allow him more time to calm his mind down.  Those of us with narcolepsy can fall asleep on demand, but that doesn't necessarily mean our mind isn't still working.  This has just been my experience.

 

My hallucinations didn't start until college, but they are vivid and frightening.  Not to mention, they add a level of intensity to the disorder.  It gave me an icky feeling of being crazy.  BUT it has NOTHING to do with mental health and EVERYTHING to do with narcolepsy.  Please tell your son that he is not alone in this.  There are many more of us dealing with it too, and its a VERY NORMAL symptom of narcolepsy.

 

About a month and a half ago, I started on Xyrem.  Xyrem is a journey and not to be taken lightly.  It has been a difficult transition for me, but I have not had a hallucination since.  Maybe mention it to your doctor.

 

I hope this is helpful.  Best of luck!



#4 msmcd

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Posted 12 December 2013 - 08:40 AM

Thank you Hank and Britney for your replies. That is all really helpful. Your words of support, understanding and encouragement, mean the world.  Britney, I think we're on our way to trying Xyrem.  I think you said it beautifully when you said, "Xyrem is a journey and not to be taken lightly."  Yes, it seems from all I've heard and read, that that is true.  It's hard to ask our son to take that journey, but if it improves his quality of life, it will be so worth it.

Thanks again.



#5 browndog319

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Posted 12 December 2013 - 10:34 PM

I go through stages where it's really bad and then through some where it's fine or they're cool - like I've levitated and was really happy and excited about it. I have tried to do it again and then realized that it was a hallucination! That was disappointing, but it was still really cool.

 

I also do it when I'm in strange places, like hotels. Which is really awesome because I travel A LOT for work. But I always do the bolt lock because sometimes I act out my hallucinations and need to escape. I try keep myself crazy alert on planes because once I did it on a plane. You know what really upsets a lot of people at 35K feet? A girl freaking out, trying to get out of her seatbelt begging the guy not to hurt her, screaming her head off. I wish that wasn't real. It was mortifying. I'm sure the flight crew thought I was on drugs or having some sort of psychotic break and then they realized I was waking up.



#6 Hank

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Posted 12 December 2013 - 11:02 PM

I go through stages where it's really bad and then through some where it's fine or they're cool - like I've levitated and was really happy and excited about it. I have tried to do it again and then realized that it was a hallucination! That was disappointing, but it was still really cool.

 

I also do it when I'm in strange places, like hotels. Which is really awesome because I travel A LOT for work. But I always do the bolt lock because sometimes I act out my hallucinations and need to escape. I try keep myself crazy alert on planes because once I did it on a plane. You know what really upsets a lot of people at 35K feet? A girl freaking out, trying to get out of her seatbelt begging the guy not to hurt her, screaming her head off. I wish that wasn't real. It was mortifying. I'm sure the flight crew thought I was on drugs or having some sort of psychotic break and then they realized I was waking up.

I lost my sense of humor for a while and just getting it back. You made me laugh. I am also reluctant to sleep on planes.

 

If the flight is not full and you want an empty seat next to you, here's a tip. Sitting with an air-sick bag on your lap during boarding increases your chances to keep that empty seat with no questions asked.



#7 browndog319

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Posted 12 December 2013 - 11:24 PM

Hank, always glad to be able to make someone laugh. My goal in life is to try and find something funny in everything. Our disease stinks but it's part of who we are, so we might as well get material out of it. I'm really sorry you lost your sense of humor for awhile. I hope things are a bit brighter.

 

That is an excellent tip... I hope to employ that on my next trip!



#8 Ferret

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Posted 13 December 2013 - 12:17 AM

Oh! Cool! Somebody else who levitates. I've mentioned it a few times on here but nobody responded so I thought I was "special" :(

I used to fight it like hell now I just go with the flow because it doesn't scare me anymore. Feels like you levitate first, then start spiralling faster and faster in an upward motion...up, up into the blackness and the stars...then you're just floating and it feels like a gentle cool breeze wafting over you...very peaceful.

Unfortunately, it happened once when I was having an eeg and the tech completely flipped out and started screaming at me that I was moving and she couldn't see what I was moving...I was asleep and she woke me up rather rudely with her screaming.







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