new diagnosis finally for the sleep issue

[kittee2015]

Hi all I've just had my MSLT and been diagnosed with "Idiopathic Hypersomnia" it's all new to me and apart from understanding the concept I know very little.

Please can someone shed some light on managing this etc and which forum I need to post in.Its a rare neurological sleep disorder.

[jentucs]

I have been dealing with the diagnoses of idiopathic Hypersomnia for about 14 years now.   Fancy way of saying you're REALLY sleepy and we are not sure why.  

  For me the reason for my condition being called that versus Narcolepsy is because I do not have cataplexy and did not go into REM within 5 mins of falling asleep.  I did fall asleep within 3 mins but that wasn't "good enough"  

Unfortunately what it means as far as insurance companies are concerned is that we do not get meds that can help us like Provigil.  
My insurance covered Provigil for 14 years and it really helped me a lot but now they do not cover it and I can't afford $500.00 a month.  

I can't take Ritalin which is the other med that is often RX'd for this condition.  

Hope you have  good Dr's that will help you improve your quality of life.