Living With Idiopathic Hypersomnia: How to Reclaim Your Life
Living with Idiopathic Hypersomnia can feel really overwhelming. Especially when it has just been diagnosed. The constant daytime sleepiness, difficulty waking up despite already sleeping longer than everyone else you know, feels like a huge burden to carry.
It’s a lot. After going through a sleep study and a Multiple Sleep Latency Test, hearing the news that you have a rare sleep disorder is daunting. Idiopathic hypersomnia is a condition like narcolepsy that is classified as “a central disorder of hypersomnolence”. You learn there is no cure, only learning to cope.
It might feel like getting back to day-to-day life is impossible.
Luckily, getting back to normal is possible; there are treatment options that can help improve your life and sleep quality.
Moving Forward: Daily Living with Idiopathic Hypersomnia
The symptoms of Idiopathic Hypersomnia don’t have to destroy your quality of life. But before we talk about what can help, let’s talk about IH Symptoms and how they can impact day-to-day life:
Amount of sleep needed- One of the main symptoms of Idiopathic Hypersomnia is increased sleep duration or hours of sleep. For someone with IH, their bodies actually need more time asleep compared to someone without IH.
Morning inertia/sleep inertia- It’s a struggle to wake up and become alert. This is also called sleep drunkenness because of how disorientating it can feel just to wake up in the morning.
Excessive sleepiness during the day- People who experience IH describe it as an overwhelming need for sleep, even if they have been getting what they consider to be adequate rest.
Brain fog- This can include cognitive difficulties like mental cloudiness and memory problems.
Effects on focus and attention- Over time, IH can start to impact work performance and productivity because it zaps your energy and can make focus and attention particularly difficult.
Safety considerations- When it’s difficult to wake up and become alert, the possibility of an accident becomes higher. The tiredness that comes from IH can affect a person's decision-making abilities, increasing those safety concerns.
Social and relationship challenges- IH impacts your relationships and social life because feeling so tired can make you less likely to spend time with the people you love, and when you do spend time with them, the excessive sleepiness makes it difficult to be yourself. This impacts your relationships with both family members and friends.
Emotional toll- The isolation that excessive sleepiness causes is a huge emotional burden. Frustration and guilt can build because of the lack of energy and difficulty doing things that used to be easy or fun. They worry that they appear “lazy”, which impacts self-esteem.
Mental health impacts- The emotional toll mentioned above, as well as the longer amounts of sleep that are needed, can contribute to negative thought patterns and, in the long run, to a higher rate of depression.
Now that we know the impact IH can have on a person's life, let’s talk about the ways to improve your quality of life.
How IH is Different From Other Sleep Disorders
Idiopathic Hypersomnia is different from other sleep disorders like Narcolepsy Type 1 and Type 2, because it doesn’t come with uncontrollable sleeping spells, sometimes called “sleep attacks”. Instead, it can feel like an ever-present exhaustion that is rarely relieved. In fact, for those with IH, daytime naps and even nighttime sleep are not rejuvenating in the way that they are for other people.
Also, unlike insomnia, someone with IH can get to sleep when needed and stay asleep most of the night. In fact, the chronic excessive sleepiness IH sufferers experience exists despite spending a long time asleep and in bed, more than non-IH patients.
Idiopathic Hypersomnia is a condition where the traditional sleep advice isn’t helpful.
When Sleep Hygiene Advice Doesn’t Apply or Makes Things Worse
The problem with standard sleep advice when it comes to IH is that the underlying issue isn’t a lack of sleep hygiene. Brains with IH function differently when it comes to sleep. This means that just going to bed earlier or sleeping longer isn’t necessarily going to make their sleepiness any better.
This means that many of the standard sleep hygiene tips make absolutely no difference or make things worse when you have IH. Which is really frustrating when you’re desperately searching for ways to wake up.
Some sleep hygiene tips do help, but they need to be adjusted for the realities of Idiopathic Hypersomnia.
Lifestyle Tips That Can Improve IH
When it comes to sleep hygiene, the modifications that need to be made for IH are focused on scheduling and helping the person work with their own circadian rhythm.
The suggestions about going to bed and waking up at the same time are very helpful, but keep in mind that sleep deprivation makes IH symptoms much worse.
The focus should be on creating a strategic schedule that works for your brain and sleep cycle. Depending on your IH, this strategic scheduling might include daytime naps.
Getting out of bed can be one of the hardest parts of IH, so it’s important to try out different types of wake-techniques and alarm strategies to get past the morning inertia. It’s also important to keep the sleep drunkenness in mind; you need to give yourself space to wake up and adjust.
Talk to both your work and family so that they understand what’s going on. You may also be able to get certain workplace accommodations, like space to rest during the day and possibly a modified work schedule.
Pay attention to your schedule. Make sure that you’re creating a schedule that is sustainable with enough rest and space to sleep built into your day.
You also want to reach out to support groups and other organizations like the Hypersomnia Foundation, which might help you to feel less alone. It’s also important to set boundaries with the people in your life so that you are able to care for yourself.
Living with a chronic illness like IH requires you to put yourself first.
After Diagnosis With IH: Grief, Identity, and Acceptance
Once you’re diagnosed, you may go through quite an emotional journey. Finding out that you have a chronic sleep disorder can be life-changing news.
There may be some grief in learning that your new normal will be different from the future you might have imagined for yourself. It’s likely that your energy will always be lower than it was.
As your brain gets used to the idea of the changes in energy and functioning that you’re experiencing, it will take time to redefine a new definition of productivity.
This often includes reexamining your self-worth and identity, if it was once intertwined with your productivity.
As you move towards acceptance, it will be easier to hang onto hope and feel better about the future.
How Your Mindset Affects Your Symptoms
Chronic illness symptoms and mental health are deeply intertwined. With a sleep disorder like IH, there is a cycle of poor sleep quality, which results in fatigue, and then the fatigue turns into depression and anxiety. When you feel hopeless about things improving, the depression intensifies as well.
Stress from your symptoms, their impact on your daily life, and everyday stress can intensify the symptoms you’re already having.
Since these are so intertwined, it’s important to treat both parts of you. Cognitive Behavioral Therapy treats both aspects of IH.
Cognitive Behavioral Therapy Can Improve Life with Idiopathic Hypersomnia
Cognitive Behavioral Therapy is a treatment option that can be used on its own and with medications like sodium oxybate to improve nighttime sleep quality, and sometimes stimulants to improve alertness during the day.
It’s part of a well-rounded treatment plan that can address the stress mentioned above, as well as help you improve your sleep quality and daily functioning.
CBT plays a big role in managing the symptoms of chronic diseases like IH. It lowers stress and uses cognitive therapy techniques to help with negative thoughts and feelings, for example, guilt, self-judgement, and frustration.
CBT helps you rearrange your thought patterns to improve your sleep and reduce stress.
Cognitive behavioral therapy also includes behavioral strategies to help you get into habits that will improve your daily life. It also helps you find ways to manage stress and anxiety, and communicate with your loved ones and employers.
For some people, CBT is enough on its own, but often it is utilized with medication and is part of a holistic treatment plan that addresses all sides of IH.
Build a Support Team, Including A CBT Therapist
When you are living with a chronic health condition, the next step after getting a proper diagnosis from a sleep specialist is building a team of both healthcare providers and support.
Cognitive Behavioral Therapy is an effective treatment. You also may want to reach out to support groups and community resources. Project Sleep and Living with IH are fantastic organizations that provide educational resources, helpful advice, and even advocacy efforts to help with IH to feel empowered.
It’s important to focus on treating both your mind and body, including a CBT therapist, to improve living with Idiopathic Hypersomnia.
If you are ready to start building your support team, reach out today for a consultation to learn how a CBT therapist at Rhythm Wellness can help.
