Newly Diagnosed With Idiopathic Hypersomnia? Here's What You Should Know

Medically Reviewed by Neha Pathak, MD on March 22, 2024
7 min read

After getting a diagnosis of idiopathic hypersomnia, you may wonder what treatment looks like and how your everyday life may change. Here are the first things to know about IH, from who will be on your care team to support resources.

Because we don't know what causes idiopathic hypersomnia, the goal of your treatment will be to help you manage your symptoms. There are a few options your doctors may try after a new IH diagnosis.

Medications. These will usually be stimulant medicines that are designed to help you stay awake. Keep in mind that you may need to try different medications and dosages to get there.

Lifestyle changes. The first thing your doctor will likely do is help you get on a consistent sleep schedule. They may also suggest you steer clear of things that can disrupt your sleep, like night work, activities that keep you up, alcohol, and caffeine.

Therapies for other conditions. Your treatment could also work to address health and sleep issues you may have along with IH. If you have a circadian rhythm disorder, you may use light therapy to readjust your wake and sleep cycles. Or your doctor may treat sleep apnea by having you use a PAP machine to keep your airways open as your sleep.

Because IH isn't as common as other health conditions, a lot of doctors don't have experience with it. After a new IH diagnosis, you'll want to find a sleep medicine doctor – also called a sleep medicine specialist – who specializes in hypersomnias.

Your care team can also include other specialists who work together to give you a comprehensive treatment plan. This can include doctors trained in:

  • Primary care
  • Lung and breathing conditions (pulmonary medicine)
  • Neurology
  • Ear, nose, and throat conditions (otolaryngology)
  • Psychology and psychiatry 
  • Dentistry

You can expect your care team to help you with everything from medication choices to suggestions on how to get better sleep. They can also refer you to a mental health professional with sleep medicine experience, or connect you to support groups so you can reach out to others going through the same IH journey.

It's important to know what you should do or have with you before any hospital stays since your IH will change the typical routine if you go to the hospital or have an emergency. Changes to your sleep or medication schedules can cause your symptoms to get worse. Here's where to start:

Make a care plan. Work with your sleep doctor to put together guidelines for any hospital care. This includes any planned hospital stays, procedures that involve anesthesia, and emergencies. They may share some ways you can manage your symptoms and sleep schedule during your stay. They’ll also outline special concerns about anesthesia since it can affect your medications, IH symptoms, and post-surgery response.

Meet with other doctors involved. If you have a planned surgery, you can prepare by meeting with that doctor to review and adjust your care plan. If you need anesthesia for the procedure, meet with one of the anesthesiologists on the team too. These specialists should work with your sleep doctor to create a final plan for you.

Share your care plan. Have your care plan added to your medical record so it's shared with any doctors who may need it. You might also want to bring printed versions with you to any planned surgeries so you can place it in your hospital room for extra visibility.

Set up a medical alert. You can put this on your smartphone, print a medical alert card, or wear a medical alert device. You might even want to set up all three so the information is easier to find in an emergency when you can't explain your IH symptoms to others. Make sure the alert includes a link to a personal online folder that holds important medical documents and other information, such as possible reactions to sedating drugs.

The Americans with Disabilities Act (ADA) doesn't list conditions that it classes as disabilities. Instead, it has its own definition of what a disability is. If your condition meets that definition, it can be considered a disability. According to the ADA, it is a physical or mental impairment that seriously impacts your ability to do one or more major life activities. Sleep is considered a major life activity.

Disability insurance. If you can no longer do your full-time job because of your IH symptoms, you may be able to get some of your income from disability insurance. You'll want to explore this option and set your plan up as soon as possible, ideally before your symptoms make it hard to work. 

Common types of plans include:

  • Short-term disability 
  • Long-term disability
  • Social Security through the Social Security Disability Insurance (SSDI) program (also called Disability Insurance Benefits, or DIB)
  • Social Security through the Supplemental Security Income (SSI) program

Getting your health insurance to cover your treatments and medications can take a little extra work with IH. There are a few things to prepare for when you’re navigating insurance with a new diagnosis for this condition.

Denials. This is when your insurance says it doesn't need to pay for your treatment or medications under your current policy. To avoid getting a denial for your hypersomnia medicines, you'll need prior authorizations, also called pre-approvals or pre-certifications.

Ask your doctor for support with this. They can follow up with your insurance's prior authorization process when they prescribe you medication or use the diagnosis code that matches FDA approval for your medicine. Once you're approved, save copies of your approval letters and set a reminder for the date that they expire so you know when to update them.

Appeals. If you believe a denial is incorrect, you can file an appeal. With this, you or your doctor explains why you need that health service and why your insurance should reconsider their decision. U.S. law gives you the right to one internal (reviewed and decided by your insurance) and one external (reviewed and decided by an outside group of doctors) appeal for each denial. 

Sometimes your insurance gives you more than one internal appeal, but you usually have to use all of them before you can try an external appeal. You can also ask for a faster appeal if you need your medication urgently, as is usually the case with hypersomnia.

If you lose all your appeals, you can still try to get coverage by:

  • Using the Consumer Assistance Program, if your state has one, through your state department of insurance
  • Switching insurance providers at your next chance

IH can affect your ability to do your job. To help, you can ask for workplace accommodations under the ADA. There are many possibilities for what form they can take, depending on your job and the tasks that become harder with your new IH diagnosis. You'll usually work with your employer to decide what works best for you. Some examples could include:

  • Giving you a device or alarm to keep you alert
  • Making sure you're scheduled for longer, shorter, or more frequent breaks
  • Allowing a shift change for when you are most alert 
  • Being flexible with your start time, end time, or both
  • Giving you time to take naps as needed

A new IH diagnosis can cause a lot of sudden changes in your life, but you don't have to go through them alone. There are plenty of support resources you can take advantage of to help with everything from finances to mental health.

There are a few specific therapies and mental health tools you can seek out to help you manage your mental health better with IH.

Cognitive behavioral therapy (CBT). This can help you improve your emotional response to symptoms, boost your confidence and coping abilities, and lessen anxiety and depression. You can also find CBT specifically for hypersomnias.

Psychotherapy. This can help you after an IH diagnosis by supporting your adjustments to new lifestyle changes.

Meditation and mindfulness. While not formal therapies, these can help make therapy have a greater impact.

Support groups. Support groups can help you feel less alone after a new IH diagnosis. You can search for many of them online or on social media. They may meet in person, on video calls, or online. 

Organizations. There are many organizations that can help you adjust to the different aspects of living with IH. Consider tapping into the following organizations for resources and support with lifestyle changes, insurance coverage, work accommodations, and more: