Idiopathic Hypersomnia
Hello, I am Virginia. I was diagnosed about 12 years ago with IH. I'm supposed to use a machine but never got used to it. I'm miserable every day because I am so tired all the time. It's so awful to live this way. I had to quit working in 2014 because I couldn't stay awake. That's after I took a half hr break & took a nap In my car. I don't know how to improve my life. I'm suffering so much. I am hoping bu talking to people who have IH it might help me learn new things. I need to know the best way to manage this condition.
It's good to meet you all.
Hi Virginia! I’m glad you are here. This is a great place to chat with others who really get it. Alot of people have success on a treatment of sodium oxybate.
Something I’m realizing about my EDS… If I am not actively stimulated my symptoms are impossible to push through. If I veg out on couch/bed or doom scroll for hours I will easily fall asleep. I’ll sleep a total of 12-15 hours easy. Same for sitting in meetings, sitting in traffic.
When I drive, I always talk on the phone hands free or singing/rapping along with the music playing. While working and I’m typing, thinking, etc I can push through. I’m currently learning how to crochet. My hope is that doing it while relaxing on coach is stimulating enough to keep me up.
Is there anything specific you’d like to know more about?Hi
welcome! This is a great community of people who know exactly what you're going through. Appreciate you sharing your story with us!
Warmly,
Reggie (team member)Hi Virginia. Welcome to the community! I'm glad you found us and that reached out about the issues you're facing. Treatment has changed in the past two decades, so, hopefully, there are more options now.
You mentioned that you were prescribed a machine. Is that a CPAP and do you also have sleep apnea? If so, there are other treatments for sleep apnea that don't involve machines, including a pill for obstructive sleep apnea that should receive FDA approval next year. Here is an article about the types of sleep apnea and the treatments that are available: https://sleepapnea.sleep-disorders.net/clinical/treatment. You'll see lots of options beyond CPAP.
When did you last see a sleep specialist? If you don't have one now, finding a new doctor would be a great first step. Most sleep specialists have backgrounds in pulmonology, but you might want to look for someone with a background in neurology since you were previously diagnosed with IH. There are prescription medications that can help tremendously with staying awake during the day and might even allow you to return to work, if you like. Here is an article about IH treatments that might interest you: https://idiopathic-hypersomnia.net/treatment. You will probably have to undergo a new sleep study, but that's a good thing. Your condition might have changed and you might benefit from different approaches.
Managing IH can seem overwhelming, but it doesn't have to be. You can simplify it by tackling one task at a time. Maybe start by making that appointment and picking one lifestyle change that you think might help. You can incorporate more when you feel ready.
I hope this helps and that you'll stick with us on your journey to a fuller life. I'd love to hear about your progress. Know that we're here for you whenever you need us. Best wishes. - Lori (Team Member)
