pkathyb

I never knew such an organization existed. I am 69½ years old and am just finding out about hypersomnia due a dear friend's diligent research. I was diagnosed with sleep apnea in 2020 at the University of Utah after family members highly suggested it. I simply knew I snored but wasn't aware of how much I woke up. But I also knew that I had trouble with often sleeping 20 or so hours approximately 4 days a week ever since my teens. I was ashamed of it, so I worked really hard to cover it up. I knew I didn't have narcolepsy, so I just never discussed it with anyone due to my shame. Since I didn't talk about it, I thought it was just a failure in me. I didn't know there was such a disease as hypersomnia. It made it hard for me to hold down permanent jobs and have much of a social life.

In my most recent position, I was a live-in caregiver. My client's wife and I became great friends. Since I was a widow, and we knew his Huntington's Disease was terminal, a few years before he died, his wife Sharon invited me to continue living with her after his death. So at age 67, after he died, I retired. It was during this past year&½ that she started noticing how much I actually slept. She never berated me like my 1st husband did. She never shamed me. The former school teacher simply started doing research.

She started to gently ask questions. We went through checklists she found online. She agreed I did not seem to have narcolepsy but perhaps Kline-Levin Syndrome. We started looking for sleep-disorder specialists who could help me. Disappointingly, even though the UofU has a sleep-wake center, they have no services that address hypersomnia, only apnea. So I found a local doctor online, Dr. David Peterson (Salt Lake City, UT), and saw him last week. I started crying with relief as we talked. After asking some of the same questions Sharon and I discussed, he explained that what I have is due to a disconnect in my brain. There is a glitch between the part of the brain that handles sleep and the circadian-rhythm-connection to the part that handles the awake times. It can't be "fixed", but he can help me retrain my brain to get used to artificially having a circadian rhythm. He also prescribed Ambien 1 hr before bed and Armodafinil in the morning, along with the lights-on-off & bedtime-routine therapy.