Sleepie Tells All


In 6th grade was the first time I realized I was different. To stay awake I would stab myself under the desk in my leg with a pencil to cause pain. Its a very temporary effect & doesnt really help. I am surprised I made it through High School. LOTS of very embarressing days and incodents. Getting married and pregnant and not diagnosed I was carried the entire day..blame it on the heat?? Was the beginnings of the cataplexy I am sure. SO now I am 20 I am watching Saturday Night Live and my EX-Husband laughs and slaps me on the back...THATS YOU!!! They were doing a little skit THE Sally Jesse Raffelle Show and her guests were MALE NARCOLEPTIC STUDS. That was in fact in the early 1990's and the first time I heard the word NARCOLEPSY. I made an appointment and happened to see a Doctor it was his last day working and I was crying telling him my problems and he said ...NO big deal, you mean you dont know, youre a Narcoleptic dear. I was put on Ritalin then... That was a freaking roller coaster ride everyday but Im not sure much was out in the way of meds in those days. I have been on lots of meds since then and constantley struggled to stay awake with every job I have ever held. STAYING gainfully employeed is a constant battle in my life. Going to school is not an option. I sit down it gets warm Im asleep. I am now on Nuvigil 250mg daily and its just not enough. Recently iwas also on Veneflexin/Effexor XR and that did help me to regain muscle control (enough to help me walk down the aisle on my recent 2nd marriage all on my own!)...But it made my vision blurry with to much eye pressure so I am now backing off of it slowly. I am unemployeed and need to find appropriate employment and also I have never informed the Motor Vehcle place of my Narcolepsy/Cataplexsy.
My story is probably typical? I would nt mind hearing others and what meds they are on and if they are able to hold down jobs and if they worry to about having their drivers license taken away from them or limited. And is there any websites with these types of statistics on them? My struggle is being employeed and I am at my wits end ...I am very open to any and all suggestions anyone may have. I am thrilled to see new/younger Narcoleptics and the information on the internet is out there for them.I will be spending more time researching information on medications and on employment. If any one knows of any websites that may help me PLEASE do chime in!
Thanks so much for reading my story ... I am hoping to read yours and learn everything I can to help myself with this very embarressing condition!!!


Sleepie Sleepie
41-45, F
2 Responses May 9, 2012

My family does support me but it has taken years for that to happen...ihave had to educate them all...I have had to explain that it is a chemical thing happening in my body...i cant fight it...they only person who completely knows is my husband cause he is with me night and day...HAVE you been diagnosed? did you do the overnight sleep test? Are you able to work and drive home safely? What kind of Dr do you see? What meds do they have you on? Im on ..nuvigil 250mg and venlafexine 37.5mg and Adderall 10mg X2daily and Melatonin 10mg nightly just before bed...AND after all of that the Narcolepsy and Cataplexy still shine through its a crying shame...I hope you have someone in your life who understands that you have no control over being awake and being is very embaressing condition to have..I do recommend making sure ur family understands ...please do educate family still makes fum of me but thats just their nature..if anyone else would make fun of me they would have my back...I am adding you to my prayer list..If you dont mind please do tell me all..I am curious to see what other Narcoleptics are on and if it helps them cause i still feel like I am struggling staying awake and working a full time job is almost impossible and Im not sure what to do about that!! Take Care!

Wow your story starts EXACTLY where mine did. I was also in sixth grade stabbing myself under the desk to stay awake unsuccessfully. I too fear that my license might be taken. Narcolepsy is the devil....No really I'm starting to feel that way because it's such a negative, depressing thing that HITS you unexpectedly everyday and just RIDES your back almost as if to torture you. Did your family support you? Mine doesn't seem to take Narcolepsy as an "excuse" .... they just don't understand.