Discussions By Condition: I cannot get a diagnosis.

Was told Narcolepsy a year ago now specialist said Idiopathic Hypersomnia

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: Anonymous
  • January 12, 2011
  • 09:07 PM

After yrs and I do mean yrs of always being tired, taking caffine pills from the age of 13 to 29 to aid with not falling down sleeping I went to see a sleep Dr. who gave me a over night w/ naps test . Went back got results I was told you have borderline sleep apnea however you have a very bad case of Narcolepsy (Wow I'm thinking I'm 29 have 5 kids what the ***l IS NARCOLEPSY and how can it be cured). I must have been the only person in the free world who didnt pay attenion to the movie Duece Bigalo cause that was the first thing outta friends mouths do people have to hold your hair to keep you up right lol. Well Doc put me on Provigil well no change after 3 months so now Doc puts me on a new drug called Nuvigil so heres the big drum roll NOTHING , NODDA ,still sleeping 10+ hours a night and passing out during the day. So now this Doc sends me to another Doc he talks to me now were gonna add Ritalin to Nuvigil so 250mg Nu's and 10mg Rit's. well that started in sept./oct. 2010 now were at 250mgs of Nuvigil and 20mgs Ritalin at 5am then 10 mgs Ritalin at 10/11am then 10mgs Ritalin at 4pm, that was ok for about 2months but the sleepiness is so bad even with meds I was on the back of a crotch rocket during the summer and was out cold( I know the laws of gravity were on my side). So this Doc becomes floored and sends me to IU medical center to see a Doc there and get some Recomendations well first her asst. Resident comes in talks listens asks then talks to her now another Doc comes in she sits down and here we go you dont have NARCOLEPSY(hmmm now I feel like Im crazy I know I fall sleep faster than a coma patient). This Doc explains I could not have NARCOLEPSY I used to be a bad acholic and people with NARCOLEPSY are missing the chemical in the brain that allows them to be addicted to anything and from looking at my sleep test results I would be out full blown not cohearant and not refreshed after naps of 10/15 mins I have no cataplexy and when I explain how I feel it's like being put under for a surgery or swimming in an under current you can feel it comming but your helpless to fight it. It really does feel like your fighting an unknown unseen thing your fighting for the ability to remain awake . So if anything you can shower,take care of your family/children,clean your house,make dinner and last but not least to be a girlfriend/wife/bestfriend. Because now due to the fact that my Doc is waiting on the written responce from this other Doc they upped me again to 250mgs NUVIGIL& 20mgs RITALIN at 5am by alarm then 20mgs of RITALIN at 10/11am and last 10mgs of RITALIN at 4pm this is still not working I yawn every 5/10 mins and feel exhusted as well as fall asleep riding in the car,watching tv writting this I've nodded off . Now I had to have a hysterectomy in Nov of 09 and hormone levels are messed up but with this added to it its hard for my fiance as I will come to bed with the idea of making love get his hopes up but 2 mins after climbing in the bed I pass out cold and wont wake until the alarm wakes me for meds @5am not even remembering falling asleep in the first place......... Now after much to say and getting all this off my chest WHATS NEXT WHAT MEDICINES WORK THE BEST FOR THIS DISORDER SO I CAN FUNTION AS A MOTHER AND WOMAN I BEG YOU IF ANYONE READING THIS HAS ANY ADVICE OR COMMENTS PLEASE I REPEAT PLEASE LET ME KNOW . I JUST WANT TO KNOW I'AM NOT ALONE OUT THERE THAT MAYBE JUST MAYBE SOMEONE ELSE HAS/IS DEALING WITH THE SAME THING......

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4 Replies:

  • Have you looked at your diet? Is there any association between eating certain foods and drowsiness? I have found that I am more drowsy after taking in simple sugars, such as soda or maybe even an energy drink.
    Anonymous 42789 Replies
    • January 30, 2011
    • 02:44 PM
    • 0
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  • Narcolepsy is extremely frustrating, especially when most people think cataplexy is the same thing. It is complicated and confusing, since it is difficult to diagnose. I have struggled with narcolepsy for many years and am familiar with your description of symptoms and medications. I have yet to bear children, but I do find a common link between my narcoleptic symptoms, stress, and hormones - this makes me pretty terrified about getting pregnant, so I'm curious to know what - if any - narcoleptic symptoms you had during your pregnancies. If you haven't found it already, the narcolepsy network (link added below) is pretty helpful - especially when it comes to relationships. Let me know how the Nuvigil works out. I'm on Provigil now along with Methylphenidate/Ritalin, but my insurance won't approve Nuvigil for whatever reason. I can't imagine how you are raising five kids, because I am so frightened if I even have the opportunity to raise one without falling asleep on the job! Mad props to you!!! :) http://www.narcolepsynetwork.org
    Anonymous 42789 Replies
    • February 21, 2011
    • 10:20 AM
    • 0
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  • Wow! That sounds exactly like my story, only i get cataplexy. Everytime someone makes me laugh or get upset, i gradually lose control of my muscle control. i take provigil and zoloft, but i am still falling asleep EVERYWHERE. I got diagnosed when i was 30. now i can't even work and the cataplexy makes it embarrassing to even leave my house, talk to my kids friends, their parents, teachers...Basically anyone. Im starting to just prefer being alone and emotionless just so i can be in peace not worrying about my future and my kid's future because of illness. What makes it worse is that everyone around me has an opinion about the topic and/or how it is effecting my life, that i spend most of my days and time convincing others that it is what it is, and it is very real and scary. I am addicted to smoking and was close to becoming an alcoholic. Interesting comment to make and i would have never thought to look into that.
    Anonymous 42789 Replies Flag this Response
  • Nuvigil is a histamine. It's not really a stimulant and it only works on patients that are missing a very specific type of histamine in the brain hat very few narcoleptic patients have. It's new, not controlled, and cheap so doctors try patients on that first, more often as a placebo effect (though it does actually work for some). I'm currently on double the highest dose of vyvanse (the strongest of the stimulants that can be legally prescribed, and still fall asleep, while other people who take that dose don't sleep for a week. It's frustrating, but your journey is just beginning. Mine has hit a dead end, but perhaps you will find a stimulant that fits you. It mainly sounds like you're going to inadequate doctors. Research the best narcolepsy-seep doctors in your area and go see them, not some novice who pulled out his Fischer Price doctor kit and thinks his knowledge is god. Not much is known about narcolepsy, but there are better doctors who know more about the available knowledge.
    Anonymous 1 Replies
    • December 9, 2015
    • 10:04 PM
    • 0
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