Tips for Newcomers to Idiopathic Hypersomnia (IH)

I was diagnosed in 2020, and I now help out for newly diagnosed people who are joining the sleep disorder community.

I mainly do it by commenting on posts on the the subreddit r/narcolepsy or on Discord. It doesn't feel that long ago that I was looking for answers for my own sleep issues.

Now I'm super deep into writing about my IH, running the Narcolepsy discord, and speaking at conferences!

It's wild to see how many people join the community after being freshly diagnosed or how many have been lurking before deciding to join in!

New idiopathic hypersomnia diagnosis? Where to start

Now as someone who has been diagnosed for a while I find myself answering questions from those who are newly diagnosed.

It makes sense, people might not know about IH compared to narcolepsy.

What I would say to someone who is newly diagnosed is, read scientific journals, visit websites such as idiopathic-hypersomnia.net or the Hypersomnia Foundation, etc.

Although, I don't recommend reading scientific research to everyone! If you don't have the knowledge on how to read scientific journals then they can be confusing and hard to understand.

I also recommend doing a follow-up appointment with the sleep professional that gave the diagnosis to ask them questions.

Finding sleepy communities through websites is my go-to answer. A lot of them have helpful information for those who are newly diagnosed.

5 tips for a new IH diagnosis

My top advice for those newly diagnosed with idiopathic hypersomnia is:

1. There are medications out now for IH! Although, there is a chance of being prescribed medication time and time again with none of the medications working. But even then there are continuous research trials so new medications are sure to come.
2. You are not alone! There is a plethora of online support communities through Facebook, Discord, Reddit, etc. that newcomers can use to find other IHers who can relate. It's also a cool way to make friends who understand the struggle. There's also in-person meetups happening and people also meetup at conferences such as Narcolepsy Network or Rare Disease Week.
3. IH is a spectrum! Some people have more intense symptoms causing them to be unable to drive or work, more trouble waking up in the morning, etc. so there is not a one size fits all for the disease. It's not all sunshine and rainbows and some people struggle more than others.
4. Talk to a sleep professional. People online can share their experiences with medications but people online are most likely not medical providers. We don't know what medications interact or don't, people's medical history, etc. So always talk to a medical provider about medication switching, or starting a new medication. And make sure it's a sleep doctor and not a psychiatrist or therapist!
5. Participate in medical trials. There are a lot of medication trials happening across the USA and London. It's a way to trial a medication if you don't have insurance or are having insurance issues!

Being new isn't the worst and a lot of information is easily findable with some Google searching. The condition is not a death sentence but it can be challenging to live with.