Question:
Has anyone had the sleep study done and was told you have idiopathic hypersomnia ?

I was told i have idiopathic hypersomnia (cousing to narcolepsy). I stay tired all the time and stay sleepy all the time. Was anyone told that they have this? My doctor has me to take ritalin and i am scared to take it. Has it helped anyone? I have heard so many bad things about ritalin. He said it would give me energy and i wouldnt stay tired all the time. I am glad it would help that but still nervous about taking it.    — sheri shelby (posted on November 6, 2003)

November 6, 2003
Welcome to my world! I was diagnosed in 1997, so have been living with it for quite a few years. I did just Ritalin for about 2 years and then started taking Provigil which is actually a narcolepsy drug. It was a wonder drug for me. The Ritalin works fine but the sustained release did not work well for me so I had to use the short acting. Consequently ever 3-1/2 hours I was crashing, then take my meds and was awake then crash, awake etc. etc. I do admit that having it treated with anything is better than living with the condition. I literally was a basketcase. The doctor told me I was so bad that in some states my driver's license would have been taken away till I was regulated. I had an 88% sleepiness index after 7-1/2 hours of 87% efficient sleep. I fell asleep in all 4 nap studies in less than 5 mintues and one was 2-1/2 minutes, so I am very bad. But medication makes me normal, or at least as normal as I get. LOL When I asked about trying the Provigil my pulmonologist had no problem but he was convinced it would not work for me because I was so severe or if it did I would need 400mg. Well he was wrong on both fronts. 200mg works great for me and it's so much more normal and minimal ups and downs. I do supplement it with 5-10mg of Ritalin at lunch and 5:00. This is enough to tweak the effect and get me through to bedtime, when I crash fairly quickly because the meds are disappearing. I was shocked how things changed by one month after treatment. I would wake early and totally slept out and refreshed because for the first time in years I was getting restorative sleep. It was amazing. It's not quite the same effect any more but I do sleep pretty well. However, if I don't take my meds within an hour or so of waking then I start to get very tired again and can fall asleep. It is amazing how our brains don't know to be awake. Definitely go with the drugs and work with your doctor. Also ask him about the Provigil. It is expensive, but for me, it along with a little Ritalin is the answer. I was on 20mg 3 times a day when I was on just Ritalin. My doctor has always given me my Ritalin meds in 5mg pills so I could adjust the dose as needed, rather than bigger pills that you can only break once or something. So I would get tons at once. Please feel free to contact me directly. I'd be more than willing to answer any questions you have.
   — zoedogcbr