Idiopathic hypersomnia: Severe excessive daytime sleepiness
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Idiopathic Hypersomnia...rare and mostly unheard of and more rare at age 65 ! Sleep waves that pretty much control my brain. Modafinil did not work more than 10 days. Tried d-amphetamine which seemed to work but cardiac side effects were not tolerated. Then to Nuvigil....worked great for a month but then needed to double the dose. That worked for a couple of months. Knowing that brain chemicals are involved in both IH and Clinical Depression....I started taking the Nuvigil with the Wellbutrin upon arising. It was a miracle day !!! I nearly cried because I felt so good. I then took the second Nuvigil and the second Wellbutrin about 11:30 am...and that took care of the afternoon sleep wave...for about 2 1/2 months. Now it has waned as well. I can usually work through the morning sleep wave attack but the afternoon one often wins. I suffered for 6 years being told to exercise more and lose more weight. That made no difference and I knew it wouldn't. Before being diagnosed...I would rise about 7:30 am and have to nap from about 9:30 am to 11:00. The afternoon sleep wave attack had me sleeping up to 3 hrs. This is not a life of quality. Now when I have to sleep it is usually just an hour each time so at least that is improved. I have no clue what to do next. There are some new drugs out there but haven't had full studies done yet. Any suggestions please.
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I find the fact that you are putting out false information regarding people with idiopathic hypersomnia who are supposedly on your site, and taking suboxone, to be reprehensible. It's cruel. You have no one on your site with idiopathic hypersomnia that takes suboxone. You have no respect for anyone suffering from idiopathic hypersomnia
Mother of 3 s/p RNY surgery 2008 (had OSA, resolved with RNY surgery) then dx with Nacrolepsy in 2011. Recently re did sleep study and MSLT for increased sleepiness even on Nuvigil 250 and told no longer have narcolepsy I have Hypersomnia. I fell asleep with 5.4 minutes on all 5 of my naps. Now What???
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