What Managing Idiopathic Hypersomnia Has Taught Me

I think that one of the hardest things about getting support for idiopathic hypersomnia, or any chronic illness, is that what works for one person might not work for another, and there are so many opinions about how one should treat their illness.

There are countless factors that go into managing idiopathic hypersomnia. For most chronic illnesses, treatment usually refers to managing symptoms. It’s difficult to get care that addresses the root issue ... if there even is a single root cause.

Managing idiopathic hypersomnia is challenging

I am not exaggerating when I say I have literally tried everything to feel better.

Acupuncture, Ayurvedic massages, Reiki, hypnosis, EMDR, and ketamine therapy.

I’ve done year-long elimination diets, contrast therapy, and driven 14 hours in one day to get in with a specialist after a last-minute cancellation.

I’ve had endoscopies, allergy tests, mold tests, and given vials and vials and vials of blood.

I’ve done yoga teacher training, drowned myself in holy water, and consulted Vedic astrologers. I’ve worked with holistic nutritionists and functional medicine doctors across the country.

I’ve been studied at teaching hospitals. I’ve made appointments with specialists booking out two years into the future.

I’ve seen pulmonologists, gastroenterologists, neurologists, rheumatologists, geneticists, cardiologists, physical therapists, chiropractors, dietitians, and psychiatrists.

Name an SSRI and I can guarantee I’ve tried it, and I can tell you the horrible side effects I experienced as well.

IH management requires mental, physical, and emotional challenges

Part of being chronically ill, especially with idiopathic hypersomnia, which steals your energy, means that my attempts to seek help have not always been consistent or 100%. You cannot always be trying to get better, because it is emotionally and physically exhausting.

The hope I’ve felt that maybe this time, this medication or this practitioner will be the one to “cure” me has almost always resulted in a dead end. I then mourn that possibility, rest, and save up enough to try again.

All of this is to say that some things have worked and have substantially improved my symptoms of IH. I’m not a doctor or an expert, this is simply what has worked for me.

How I manage my idiopathic hypersomnia in 2026

For the past five months, I’ve completed a 15–20 minute meditation almost every day. Even when I’m tired and don’t want to, or when I’m already in bed, I still do it, just horizontally.

Meditation

It’s honestly insane how much this simple and free practice has improved my energy and happiness, more than literally anything else I’ve tried. I assume that part of this is because I am forced to stop and breath deeply which has a positive impact on my nervous system.

Walking

I also try to walk for 20 minutes every day. This is usually a walk to the coffee shop or during my lunch break. Being able to move my body in this way, without overdoing it, is key to my mental well-being, which directly affects everything else in my life.

Infrared sauna

I also use an infrared sauna two to three times a week. Since using the sauna, my joint pain has decreased, I sleep more deeply, and my chronic pain is less intense.

Meeting myself where I'm at

The last thing I do is reject society’s expectation that we always give 110% in workouts—and that workouts are only worthwhile if they are high intensity, extreme, and painful.

I do not subscribe to “no pain, no gain,” because if I overdo it, I’m in bed for the next week.

People with chronic illness should not overdo it; instead, we should build sustainable consistencies so that we have enough energy to live our day-to-day lives.

Idiopathic hypersomnia is time-consuming and exhausting

When I look back on all I’ve done, I feel overwhelming grief. I can’t even begin to quantify the time, energy, and money I have spent trying to get better. It is lonely, and you have to show up for yourself again and again, even when you’d rather give up.

But I have also learned so much about the world and the collective knowledge of human beings. There is truth in every type of healing that I have tried. I’m focused on controlling what I can and listening to what my body truly needs.