[DawnS]

I have just gotten diagnosed with idiopathic hypersomnolence which is a form of narcolepsy. I also have sleep apnea. I have always battled being so tired and in a way I am glad I know what has caused it. Now we have to find a way to help me stay awake. The Doc has put me on Adderall XL after the Provigil did nothing for me. Not surprising since the last time they used it 3 years ago it didnt work either. The Adderall XL works for the most part but I am still napping; however, just not as much. I was wondering if anyone else has this diagnosis?

Thanks,

~Dawn

The word idiopathic means "without known cause". And you already know that hypersomnolence means you feel the need for huge amounts of sleep. So that diagnosis means....well...no one know why, but you are VERY sleepy. :-)

Sounds like you have a doc who is helping, and you're on your way to a better life already. Good luck!

emmy

[(JD)]

((((dawn))))) This is tough to function with, I'm sure! Sometimes regular doctors don't think about allergies.... it would be nice if that was your reason for this... if you have some EMT who is active with allergy testing, at the very least contact them for their questionaire... that would help you evaluate what things in your life might be causing or adding to this problem. Of course, there has to be a reason your body is doing this... I hope now that they've dx'd you, they will work with you to find the answers. TC

[DawnS]

Hi Emma and _Sky,

Since I am waiting on my blood work to come back, which is one way they can determine narcolepsy, I am thinking I was given the Idiopathic Hypersomnolence since he was not 100% sure. All I was told is that I have a form of narcolepsy, but like anything else that involves the brain, I think they just give their best educated guess unless blood work or such can show what is really causing the problem. On the insurance paperwork I got back from my carrier they listed it as Narcolepsy/Idiopathic Hypersomnolence so at this point I am not sure what they are thinking. I guess I am just glad that there is some reason - even if unknown - that I sleep so much and I am just not lazy, which is how I have felt for so long. I have had allergy testing when I was dx'ed with asthma. I do think that adds to the tiredness. It will be an interesting appointment next month to see what the Doc has to say. All I want is to feel better and start living like others around me - to enjoy my family.

Thank you for the replies,

~Dawn

[cms39]

I was having a problem staying awake during the day too. Narcolepsy was a consideration, but was ruled out in my case. I had sleep apnea and hypothyroidism. My thyroid medicine helped me lose weight and gave me more energy. The CPAP machine helps me get a good night's sleep so I'm not falling asleep every day just before I have to go to work!

I hope things get better for you soon!