Jean

Weddings and the stress

8 posts in this topic

My daughter just had a big wedding with all the trimmings and she can't remember half of the day or some of the things we did leading up to the wedding. I know the wedding was beautiful and that she had a wonderful time, but it is difficult to ask her about a particular portion of the wedding week and have her say "what really". Her sister showed her a picture of me offering a toast at the rehearsal dinner and she asked what I was doing? She has no recollection of the toast, or several other things that occurred that evening. She also remembers me going with her for her gown fitting, but can't remember me being in the room when they fitted her with the gown, veil, and jewelry. She said she wished I'd seen her in her veil with the gown. :( Any one else have any of these experiences with their children? She has been seen at both Hopkins and Stanford (Mignot) and she has atypical Narcolepsy, with many mini sleep episodes. She doesn't appear to be asleep, just "not paying attention". She is now trying to regroup from the weddding stress. Her husband is Great about the Narcolepsy and she is fine with enough sleep and little stress. Any one else been through a celebration that didn't all register?

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i totally understand what you mean.. i married 3 months ago.. and i also have sleep episodes where i appear awake.. conversations.. phone calls .. it could be anything and i dont recall a thing.. i worried myself sick i would'nt be able to make it through the day or because i also have cataplexy i would fall walkin up the aisle.. i had my day and it was wonderful .. although i was aware at certain points that i needed to leave the room the heavy eyes would take over.. i was diagnosed a year ago but suffered for several years before that .. i think havin the cataplexy confirmed the narcolepsy.. as i was told the 2 go together.. i have taught my children and my close family the signs to be aware of .. and although my eyes appear to open I AM NOT AWAKE. . your daughter i think will understand what i mean.. certain signs .. my speech maybe a little slurred my eyes glazed .. sometimes i even talk about things i might have had on my mind.. things that dont mean anything to anyone..

i am new to this site but have found it reassuring that im not crazy or weird.. i have narcolepsy and cataplexy .. i still dont talk to people who dont have it.. but each step i take im closer to being able to live with it ..

i know that my mum struggles to cope when i upset myself about it.. i guess she feels that its out of her control.. i know my mum is totally there for me.. and although she cant make it go away or make it better..

havin HER around is my medication..your daughter sounds also like one of the lucky ones. keep her close..

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I didn't know it was called "mini sleeps" . wow, that explains most of my life. Everytime I tell my doctor about my bad memory, he has no explanation for it. So...........it's the narcolepsy I assume. Due to the mini sleeps? the ... Im here, but not really? I was afraid it was pre-alzheimers.

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Boy, I know weddings are stressfull, esp. being the bride with N/c! The best part of it was when it was OVER! ;) My husband is wonderful and so understanding about all my medical problems! :)

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I wish I hadn't read this, now I'm afraid of getting a cataplexic attack up at the alter when I'm about to say "I do" :P. At least that will be a few years off, or so the plan goes :)

Chris"Toph4er"

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I tried to go to a wedding about a year ago, I wound up not being able to handle the energy of it all and i started yelling at my wife about some nonsense, of coarse she didnt deserve it and then I stormed off. even though I dont have any memory of the event I do remember her waking me up in the car and it was much much later. I cant even handle it when three family members want to come up for a visit at the same time. wihtout fail I wind up locked in the barn doing anything to distract my mind from the stress.

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I was married a year and a half ago, I also don't remember bits and pieces of my day. In pictures during the cerimony, my head is tipped off to the side (kind of unnaturally), and now that I know what that is, you can see I'm checked out, but eyes open and smiling! Our minister made a few jokes, everyone was laughing. But, I never bailed on my reception, and from the pics I had a great time! :wub: And, I'm married to a wonderful man.

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I have been wanting to write an article on this subject for some time now and have gotten very little in way of responses! If anyone would like to share their Narcoleptic Wedding stories and how they coped and what adjustments they made in order to function, I would love to hear them! I believe Sara and I are aiming for the spring newsletter. (though since I am busy moving it might be summer) Please email your stories to me at [email protected]

Thanks!

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