confused about what is happening

[aunt_lucy]

Hello,
I am another newbie & have taken great comfort in the descriptions here of other people's symptoms. I have suffered from daytime sleeping episodes for 8 yrs since I was 16, & after sleeping through university I have only just approached my doctor now I am working full-time and it has escalated to a stage where I am terrified of going to presentations or meetings because I know I will fall asleep. I have avoided trouble so far but feel it's only a matter of time before I lose my job. My dr referred me to a neurologist who has reccommeded sleep tests. I'm glad he takes me seriously but I'm afraid of what they might find, or even finding nothing. I also feel like such a fraud - partly because I can't help feeling I am just lazy and this shouldn;t happen, but also because I have a friend who suffers from severe narcolepsy with all the associated symptoms and mine seem rather paltry in comparison.

So I haven;t been diagnosed with anything (yet) but basically I get uncontrollable sleepiness avg. twice per day, at any time regardless of how much sleep I've had (though exacerbated if I'm tired), in addition to in almost every presentation I attend, meetings, most one to one chats, theatre, long drives,some cinema, occasionally watching live sports events. I have tried energy drinks, caffeine, food, nicotine gum, but nothing helps, sometimes I don;t wake up properly even when I get up to walk around and am in a daze. I sleep in the afternoon on w/ends but find I often feel worse when I get up than I did in the first place. My father has said he used to get the same sleepiness thing but it has become less noticeable now he's older.

Does anyone know how common this sort of thing is? And does anyone else feel guilty about it?

auntlucy

[iconfetti@webtv.net]

Hey Lucy, you've come to the right place. All of us in the group are victims of EDS...or leatwise have a family member or someone close who has it.
By all means have yor sleep studies. I sure hope you can find a good sleep doc/neurologist preferrably who is board certified in you area.
Don't you ever feel guilty about being sleepy. It's not something we have any control over...it is very real and very dis-abling. Some of us are on disability.
Do you have any other symptoms other than EDS? Cataplexy, Sleep Paralysis, HG Hallucinations, etc.? Make sure you tell the sleep doc everything, write it down before you go and make sure he listens. Some of us have had to see several docs before finding any help.
Please keep posting and let us know how it goes. We are here to help if we can.

Faye 2sleepy2care