4 replies to this topic

[sleepy zzz]

I was wondering if anyone could offer some advice. My daughter has been newly diagnosed with narcolepsy in 2010 even though she has had some symptoms since six years old. The medication helps most attacks and we have been excited by the improvement. However we are still left with some events that medication has not helped.

Last night after she had been to bed for a short period of time I heard crying, coughing and talking coming from her room. I was alarmed as we were the only ones in the house so I ran to her room to see what the disturbance was. She was in bed and was very upset and looked like she was chocking and was terrified to say the least. She cried and chocked and she kept saying as though she thought there were doctors in the room “please don’t put tubes down my throat I am awake”. She also cried about doctors were trying to give her many, many needles and she was really in a distressed state.

After a long ten minutes I calmed her down and I reassured her that she was safe and no one was there. She then went back to sleep and had no more disturbances.

Please can anyone help me what do I do in these circumstances? Do I try and comfort her or does that make them worse? Do I try and wake her? Originally when I first went into her room I think she thought I was one of the doctors as well and this only made it worse.

If was hard as a parent to witness this as I felt so helpless and it came out of nowhere. She has had this in the past but more in the day time sleeps. She told me as she is getting a little older that they occurring more and more as she goes to sleep. She feels crazy and like she is losing her mind and she hates to go to sleep lately because the dreams feel so real.

I am reluctant to talk to doctors about what is happening because in the past she was labelled with conversion disorder/stress disorder and I don’t want them to think this proves their old theory and that she is losing her mind? The MSLT was very positive for narcolepsy but due to how long we were told she had this other disorder it is hard to know what to believe any more.

I want to help her so please if anyone can offer any advice it would be really appreciated.

Many thanks

[magpie]

How old is your daughter? Night terrors are usually not a cause for serious concern, usually people who have them have them when they are kids, and tend to outgrow them by their teens. I had night terrors when I was younger (I'm 33 now) but never remembered them. In fact I only this past year found out that I had episodes when I was around 6 from my mother who didn't know what they were. Apparently I would be sitting up in my bed yelling with my eyes open and my mom just thought I was being difficult and would yell at me. I remember none of it!
The summer when I was 9 or 10 I would wake up my tent-mates at sleep-a-way camp screaming "don't kill me I'm already dead". And counselors would come in to find me tangles in my mosquito netting, or at the foot of my bed. I would wake up the next morning thinking I slept fine- my tent mates and mom were the ones bothered by my night terrors, I was fine as far as I knew.

From your description of the events, it sounds like your daughter is remembering her nightmares, which must be truly frightening for her, and that she maybe wakes up during the episodes. That coupled with the intimation that she has had some negative experiences with doctors, and doctors are in her nightmares, might mean that there are other issues contributing to her nightmares that need to be addressed. It might be that she is going through a very stressful time and does have a stress disorder- but that doesn't mean that she is losing her mind, or that she doesnt also have Narcolepsy. I know first hand that having a sleep disorder undiagnosed for years does cause a lot of stress, depression and frustration at times. I would definitely encourage your daughter (or you) to talk with the sleep specialist who diagnosed your daughter with N about her sleep disturbances.
I can understand why you are reluctant to bring this up with the medical community who misdiagnosed and negatively labeled your daughter all that time. Hopefully the sleep doctor she is working with her now is someone you both trust and can provide the treatment to help her sleep soundly soon.
Good luck

I was wondering if anyone could offer some advice. My daughter has been newly diagnosed with narcolepsy in 2010 even though she has had some symptoms since six years old. The medication helps most attacks and we have been excited by the improvement. However we are still left with some events that medication has not helped.

Last night after she had been to bed for a short period of time I heard crying, coughing and talking coming from her room. I was alarmed as we were the only ones in the house so I ran to her room to see what the disturbance was. She was in bed and was very upset and looked like she was chocking and was terrified to say the least. She cried and chocked and she kept saying as though she thought there were doctors in the room “please don’t put tubes down my throat I am awake”. She also cried about doctors were trying to give her many, many needles and she was really in a distressed state.

After a long ten minutes I calmed her down and I reassured her that she was safe and no one was there. She then went back to sleep and had no more disturbances.

Please can anyone help me what do I do in these circumstances? Do I try and comfort her or does that make them worse? Do I try and wake her? Originally when I first went into her room I think she thought I was one of the doctors as well and this only made it worse.

If was hard as a parent to witness this as I felt so helpless and it came out of nowhere. She has had this in the past but more in the day time sleeps. She told me as she is getting a little older that they occurring more and more as she goes to sleep. She feels crazy and like she is losing her mind and she hates to go to sleep lately because the dreams feel so real.

I am reluctant to talk to doctors about what is happening because in the past she was labelled with conversion disorder/stress disorder and I don’t want them to think this proves their old theory and that she is losing her mind? The MSLT was very positive for narcolepsy but due to how long we were told she had this other disorder it is hard to know what to believe any more.

I want to help her so please if anyone can offer any advice it would be really appreciated.

Many thanks

[sleepy zzz]

Thank you Magpie so much for your helpful way of looking at what happened. I ended up ringing a narcolepsy help line and they were very informative. She is fourteen years old and it took her a couple of days to really talk about what had happened as she felt embarrassed and crazy.

They said that after talking to her and listing to how she was drifting off when it happened and how it wasn’t a dream to her it was so real she could feel them trying to put the needles in that it wasn’t night terrors it was hypnogognic hallucinations.

If anyone out their suffers from these types of hallucinations could they please give a mum some advice on how to handle an attack?

She has had them in the past but as she is getting older they are intensifying. If they get to out of control and we are not their yet is there any medication to help stop them??

Take care everyone!!

[kendajs]

I know this thread is old, but I'm 23 and have narcolepsy without cateplexy (though I question the without cataplexy part) and OCD. For most of my life I thought the nightmares were just bad dreams since they tended to be centered around my obsessions (watching myself die different ways as if watching a movie of it). Once I started SSRIs for the OCD, I hardly had them any more. After being diagnosed with N, I now know these are hypnagognic and hypnapomic hahallucinations. I have found quite a few peer reviewed articles stating that SSRIs greatly decrease their frequency. I don't get them nearly as often as I did without the meds, which was nightly. However I do get them frequently when napping (I think this is due to narcoleptics falling into REM sleep so quickly). Hope this helps! Oh, and as for how to help, my mom would always wake me up and that was usually fairly easy. While the dream would feel real for a bit no matter what, sometimes I would take an Ativan if it was particularily bad. Sometimes I would wake up and vaguely remember something though or someone would say they heard me talking in my sleep and I would have no recolection or only a vague memory of the event, so I guess it can go either way, even for the same person. Encourage your daughter to talk about it because when you do, you will figure what works best for her.

[Megssosleepy]

Once again I know this post is old, but maybe a newbie will stumble across it...

Things that have helped, not sleeping on my back, white noise, and just knowing its not real no matter how real it actually is. Also, when I nap it happens a lot. Those dreams where you think you have woken up 10 times only to realize you are still in bed, and things just keep getting worse.

Now that I am a bit older I realize why I was such a scared little girl. These dreams are not dreams they are actually going on in your room. Its hard to believe its not real when it seems like hours have gone by, and you cant breath or move or scream! When my Sleep Doc told me its only seconds that I am frozen, I try to remind myself that.

I am so sorry to anyone who suffers from this, I read on here that some people actually have good HH! Hopefully one day I can experience that instead!