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05/19/2009 09:36 AM

Hello

jesie47415

My name is Jesi and I was just diagnosed, yesterday, with Narcolepsy. I haven't even met with the Dr yet to discuss treatments or what this really means. My symptoms are daytime sleepiness only. I'm very interested in learning more from people who have been living with this. What can you tell me?

Jesi

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05/19/2009 03:44 PM
MissStacey
MissStacey  
Posts: 14845
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I'm an Advocate

Welcome to the group, you have come to the perfect place for support. When are you meeting with your doctor? The road is long and hard but with the right treatment and support you will be able to get through it. I am always here if you need to talk. Keep us posted after your drs visit too. Smile

05/20/2009 08:54 PM
candybutterflies
candybutterflies  
Posts: 7
New Member

that is so hard to belive..it took four years of daytime sleepiness and falling asleep everywhere and lots and lots of test...i hate it...hope you do well with it..ttyl elizabeth

05/21/2009 03:54 AM
jesie47415

Stacey, I couldn't get an appointment with my Dr until June 4th. I am anxious to get information from him.

Candy, I too had sleepiness for years. In the last two months it has gotten so bad that I finally went to the Dr and said, something is wrong! They did a bunch of tests that all came back normal and then finally I got a sleep study.


05/21/2009 09:24 PM
candybutterflies
candybutterflies  
Posts: 7
New Member

hi ..well for me im sleepy all day and have to take naps..i was told to take atleast 3 twenty min naps a day

im on provigal,dex.....and methadate.....and they are not helping much at all..im falling asleep where ever i am .i even have to pull car over and call someone to get me ..pretty ruff. i also have a cpap machine..i dislike it too..have a great night


05/30/2009 11:18 AM
MissStacey
MissStacey  
Posts: 14845
VIP Member
I'm an Advocate

Welcome to the group, its nice to have you here. I am also sleepy all day. I dose off constantly and pass out now and then. They say the naps are the most important trick to keep away the episodes. I also take Provigil but it doesnt work all thatsince well for me. I havent been able to drive since Jan of last year due to my episodes. I dont have sleep apnea so I dont have a cpap machine, that must be annoying. Anyway feel free to post or pm me anytime. I look forward to seeing more from you. Have a great day! Smile

05/30/2009 11:28 AM
MissStacey
MissStacey  
Posts: 14845
VIP Member
I'm an Advocate

Jesie its almost time for your appointment keep us posted!!! Wink
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