7 replies to this topic

[bongosmama]

I am writing with tears pouring down my face. For the last few months, I've KNOWN that something was very wrong with my 16 yr-old daughter, but first I ignored it, and then I joined the doctors in calling it depression. And yes, she IS depressed, but that's new. Her crazy sleep patterns are not. Reading other peoples' posts here has opened my eyes, and I realise that I've been ignoring what was right in front of me... the fact that she is EXACTLY like me at her age.

Her sleep has been increasingly disturbed for the last two years, but I put it down to 'teenage' stuff (though my other two kids never went through this). Her grades have dropped, she's totally disoriented when she wakes up, and she falls asleep anywhere and everywhere. She feels disassociated from herself, irritable, and as she beautifully said yesterday..."My feet are concrete and my head is helium".

I knew exactly what she meant. I'm just so devastated that she got this terrible thing from me - and just as I've managed to come right for the first time in 30 years, thanks to GHB. I feel so bad. I've been ignoring this, because I just did not want to think about it. I just do NOT want to believe that she has to deal with this. It caused such havoc in my life for so many years. Why does it have to touch my little girl too?!

Sorry - enough self-pity. I just needed to let this rant out so I can get on with dealing with it tomorrow. It's just such a long road ahead of her, you know?

[ohiolor]

Bongosmama...don't beat yourself up over this....I know it must be hard coming to the realization that your daughter may also have N...but I hope that you can see the bright side of this...I know, there really isn't a bright side but....you've been there and done that. So many people diagnosed with this have no family history...and spend forever trying to be understood and accepted. You understand what your daughter is going thru...you can now be her advocate...push the doctors to get the official diagnosis...get her on a treatment that will work for her....get accommodations in school if needed...and continue to read and post here for help and support. If you and/or your daughter are on facebook, there are lots of online support groups...start out at Narcolepsy Networks facebook page and go from there. http://www.facebook.com/?ref=logo#!/groups/narcolepsynetwork/

Wishing you the best!

Lorrie

[TiredNikki]

I am writing with tears pouring down my face. For the last few months, I've KNOWN that something was very wrong with my 16 yr-old daughter, but first I ignored it, and then I joined the doctors in calling it depression. And yes, she IS depressed, but that's new. Her crazy sleep patterns are not. Reading other peoples' posts here has opened my eyes, and I realise that I've been ignoring what was right in front of me... the fact that she is EXACTLY like me at her age.

Her sleep has been increasingly disturbed for the last two years, but I put it down to 'teenage' stuff (though my other two kids never went through this). Her grades have dropped, she's totally disoriented when she wakes up, and she falls asleep anywhere and everywhere. She feels disassociated from herself, irritable, and as she beautifully said yesterday..."My feet are concrete and my head is helium".

I knew exactly what she meant. I'm just so devastated that she got this terrible thing from me - and just as I've managed to come right for the first time in 30 years, thanks to GHB. I feel so bad. I've been ignoring this, because I just did not want to think about it. I just do NOT want to believe that she has to deal with this. It caused such havoc in my life for so many years. Why does it have to touch my little girl too?!

Sorry - enough self-pity. I just needed to let this rant out so I can get on with dealing with it tomorrow. It's just such a long road ahead of her, you know?

Sorry that your dealing with this. I do understand how you feel. I was diagnosed with Narcolepsy with Cataplexy a year and a half ago. Since my diagnosis and treatment, I started to notice my youngest daughter age 10 was also suffering from it, after her sleep study she too was diagnosed with N w/C. Then I recently noticed my 12 yr olds hand writing was like that of a kidnergardener at times. Her teachers said she is very involved and intelegent but her work didnt show that. After her sleep study she also has N w/C. So I do know where your comming from and the guilt is horrible. But, you are her best advocate. My girls are lucky they dont have to go 20 yrs like I did with no diagnosis. If you would like to chat more on how we are coping feel free to contact me. All I can say is both of my girls are doing so much better on treatment. I had their teachers read Narcolepsy a funny disorder that's no laughing matter. I think it helped a bit.

[Lis]

hi! I'm so sorry. . I went through this recently with my own daughter. She was tested at 17 years old and positive. Narcolepsy without cataplexy. She bawled her eyes out. She witnessed so much of what I went through as a result and did not want the same thing. The strangest part about all of this is I do NOT have genetic narcolepsy, yet developed severe cataplexy during provigil treatment. (didn't have cataplexy when first diagnosed) My daughter developed hers after a bad bout of lymes disease. So annoying.

Sorry that your dealing with this. I do understand how you feel. I was diagnosed with Narcolepsy with Cataplexy a year and a half ago. Since my diagnosis and treatment, I started to notice my youngest daughter age 10 was also suffering from it, after her sleep study she too was diagnosed with N w/C. Then I recently noticed my 12 yr olds hand writing was like that of a kidnergardener at times. Her teachers said she is very involved and intelegent but her work didnt show that. After her sleep study she also has N w/C. So I do know where your comming from and the guilt is horrible. But, you are her best advocate. My girls are lucky they dont have to go 20 yrs like I did with no diagnosis. If you would like to chat more on how we are coping feel free to contact me. All I can say is both of my girls are doing so much better on treatment. I had their teachers read Narcolepsy a funny disorder that's no laughing matter. I think it helped a bit.

[Lis]

thank you for your kind words. I wish I could make my daughter get treatment. She's now 20 years old and sleeping in cycles. She found out that she could not work and keep up with college at the same time because of her sleepiness. She chugs coffee throughout the day between naps. I set her up with my doctor for better treatment than she was getting through the sleep doctor she was seeing. She shows up, but forgot to have her sleep study records sent, so she had to reschedule another appointment...which she never did. Keeps saying "I will...I haven't had the time,etc.". It's hard because I now live 220 miles away from her, and I am helpless in helping her to take responsibility for herself and her health. (she's living with her dad and going to college....he is NOT supportive, and refuses to believe there's any such thing as "narcolepsy". My narcolepsy played a HUGE factor in our divorce)
My daughter doesn't even connect the fact that the road she's taking is actually much harder and it will get her nowhere as far as treatment control goes. I'm more than willing to help her, but she needs to take an active role in wanting it. I'm not angry with her, there was a long period of time where I did similar things until I could do them no more. I think she's inherited my hard headedness, and won't do anything until the last ropes been yanked from beneath her, lol. In the meantime, I worry most that she will get into a car accident if she's not careful. :S

[Kayra]

I can speak from the perspective of a 20 year old who was in the process of being diagnosed with N. The first sleep doctor I saw misdiagnosed me with sleep apnea and she knew I didn't meet the criteria for apnea but rescored it because she thought I was young and my body was overcompensating. After being put on a cpap and it not working and me just hating it I gave up. I didn't look into the sleep studies for several months till my main doctor said to get a new sleep study because my other sleep doctor was no longer covered by my insurance. So she scheduled the apps over summer which seemed to workout because I didn't work much and my one summer class was over. If it wasn't for that main doctor I probably never would have found out I have N though so I'd just say tell your daughter to tough it out and get it done. Especially if in college because you can get accommodations which are really useful.

[sleepywriter]

I'm so sorry you're feeling so upset. Just remember - this is NOT your fault. None of it.

Maybe your daughter is resisting treatment and refusing to acknowledge that she has narcolepsy because of the way her father reacted towards you?

You touched on a very important thing - you cannot MAKE her do anything at this age. She's got to WANT to get help to manage her symptoms. Eventually, she will hit rock bottom and realize she cannot successfully continue to live this way if she wants to be happy.

[Lis]

I'm so sorry you're feeling so upset. Just remember - this is NOT your fault. None of it.

Maybe your daughter is resisting treatment and refusing to acknowledge that she has narcolepsy because of the way her father reacted towards you?

You touched on a very important thing - you cannot MAKE her do anything at this age. She's got to WANT to get help to manage her symptoms. Eventually, she will hit rock bottom and realize she cannot successfully continue to live this way if she wants to be happy.

thank you so much, I agree with you. I also think she may not be doing anything about it because she is living with dad and doesn't want him to get mad at her. (she's seen enough of that in her lifetime)She was raised with me and only moved in with dad because I was moving too far away for her. She didn't want to leave her boyfriend. :S. I know she's been trying to get out of living there. I only found this out through my friend, who told me my daughter asked if she can stay there, lol.