Living with Idiopathic Hypersomnia. How to live with Idiopathic Hypersomnia?

Yes with the right treatment doctors and support plan

Yes, it is okay to live with IH. You may quite possibly experience depression after your diagnosis, because your previous life has ended. It is best to have a good support system (family or friends) to help you through the hard points.

I try to make time for a two-hour nap every day. This allows me to function ok most of the time. I am a teacher, I have friends and family I do things with, and I'm happy.

This is a strange question, to me. As with anyone, we choose to be happy or not. No person, disease, or other issues can make you feel anything. I try to stay positive, but sometimes hard, when you know that your symptoms are getting worse.

I was diagnosed with IH five years ago at age 66. The IH is getting much worse and my doctors have had to consult with the Mayo Clinic on how best to help me. I am very grateful for their care and concern. I look at my cup as half full and not half empty. Had the IH manifested at birth since it was within me then, perhaps my parents would not have known how to care for me. Perhaps the doctors would not have known what was wrong. Would there have been drugs available? Would I have been able to attend school? Would someone have wanted to marry me? Would I have had a successful career? I led a wonderful life before my IH manifested all of a sudden. I have been researching why it manifested so late in life and now have some good ideas of what happened. I am extremely interested in researching. Yes, it is still difficult for me to believe I have a rare genetic disease. But, I have to live with it.

In retirement I am very active. I am an author, an artist, and I love to travel. I will not allow the IH to get in the way of my life. I observe strict sleep hygiene. I take only "power naps" that are no longer than 20 minutes in length. I have learned if you sleep longer than that you wind up getting too much sleep and it will make you more fatigued the next day. I take perhaps three power naps during each day and evening. I have had to experiment when I take my Nuvigil and Ritilin to make it work best for me. I wear a tracker that monitors my deep sleep v. light sleep. That is helpful.

Sure, there are some things I just can no longer do. I have reduced my volunteer activities, but that is okay. I do what I most enjoy and it is be with my family, write books, paint, and travel. Life is good.....even with IH.

Forget about the clock. Let time go . Let judgment go . Ignore public opinion and except who you are . Sleep when it's best for you. But a decent mattress. Quilt and magnet bed protection. Black out curtains. Pain gone pen . Get on modafinil. Melatonin. Serotonin. Study lIke mad about your condition. Knowledge is your friend. Join the Facebook group. Remember to be proud of yourself for surviving. Audible is my sleep budy and voice in my head distraction. Except you have anxiety. Try live the best you can. Smoke what you want wink wink.