Chronic illness SLEEP

Everything You Need To Know About Idiopathic Hypersomnia

Hypersomnia is a condition in which a person can sleep for 12 to 15 hours and still wake up feeling tired.

everyone is so quick to blame their lack of energy on a busy work and social life. In some situations that is the case, but for others it isn’t as easy. Imagine feeling those same levels of exhaustion BEFORE your day has even started, before you’ve even got dressed.

Is it normal to be feeling this sleepy upon waking every morning? Nope, which is why I wanted to shed more light on Idiopathic Hypersomnia, to help those that are beginning to question their levels of exhaustion.

Read on to hear more about this underdiagnosed condition…

WHAT IS IT?

Idiopathic hypersomnia (IH) is a chronic neurological disorder marked by an insatiable need to sleep. Someone suffering with IH can sleep for longer than the recommended 8 hours at night with no issues. Yet wake up feeling worse and still excessively sleepy during the day.

Those who have IH, like myself, will experience sleep drunkenness upon waking. I have great difficulty being awakened from sleep. I rely on multiple alarms and family members to get me up in the morning. I will often take day time naps whenever possible. My naps are often long, unfreshing and uncomfortable. No amount of prolonged nighttime sleep or extra day time sleep will reduce my excessive levels of sleepiness.

Idiopathic means there is not a clear cause, little is known about the condition, it is unheard of by many and treatment specific to this condition is unavailable.

How is my tiredness different from yours?

Every day feels like a hangover for me, a constant state of never feeling awake or energised. The worst kind of hangover, the one with the pounding headaches, the strong desire to just keep sleeping, the kind that keeps you confined to your bed all day. Anything that involves you having to move or think, requires too much effort and energy that you don’t have. A hangover is never pleasant, your body is heavy, aching all over, but you know that after a good night’s sleep it will be gone… right? 

Wrong.

My ‘hangover’ will still be there in the morning, and the one after that and so on. You can’t fight off the tiredness that comes with Idiopathic Hypersomnia. I have fallen asleep mid conversation, whilst eating dinner, and whilst working at my desk. You can’t think of anything else but sleep, I am so eager to crawl back into bed and close my eyes whenever possible. To rest my achy body. It’s like an addiction, my body craving more and more of it. Statistics say we spend one third of our lives sleeping but I spend two thirds of mine asleep. My stimulant medication helps me manage my symptoms, improves my quality of life, providing me momentary respite but it does not cure me. My medication acts as a plaster or a bandage.

My tiredness will always be there.

The Symptoms

IH is a neurological sleep/wake disorder characterised by the following symptoms:

  • 10 or more hours of nighttime sleep
  • Excessive daytime sleepiness
  • Difficulty waking from sleep even with the aid of multiple alarms, lights, and help from other people.
  • Sleep drunkenness – impaired physiological state after awakening, which usually involves confusion, disorientation, and poor coordination.
  • The transition from sleep to wakefulness can be long and difficult to manage.
  • Taking long, unrefreshing naps.
  • Cognitive dysfunction – memory problems, automatic behavior, difficulties with concentration and attention.

Diagnosing Idiopathic Hypersomnia

Diagnosing this condition isn’t simple. It takes multiple tests and requires a lot of patience to diagnose this condition. 

Below is a list of all the tests I have had in order to receive my diagnosis:

  • Epworth Sleepiness Scale – A set of questions asking you to rate your sleepiness. A tool to help determine how sleep affects your daily life. This is reviewed every 6 months.
  • Sleep diary – I was asked to keep a diary for a month, where I logged my daily sleep and wake times to help show a pattern.
  • Polysomnogram. A polysomnogram monitors your brain activity, eye movements, leg movements, heart rate, breathing functions and oxygen levels as you sleep, I wore this for 72 hours.
  • Actigraphy – I had to wear a small Fitbit style medical watch for 2 weeks. It is a non-invasive method of monitoring human rest/activity cycles.
  • Multiple sleep latency test – I spent a day in hospital and I was asked to fall asleep at random intervals throughout the day. Whilst wired up to a machine that was measuring my sleepiness and the types and stages of sleep I go through during daytime naps.
  • Lumbar puncture/Spinal Tap – To collect cerebrospinal fluid for diagnostic testing, to help diagnose diseases of the central nervous system
  • Blood Tests
  • MRI Scan of the brain

For more information go check out https://www.hypersomniafoundation.org/about-idiopathic-hypersomnia/

2 comments on “Everything You Need To Know About Idiopathic Hypersomnia

  1. Thanks for making me aware of your blog! The struggle that I’m finding is getting doctors to listen to me and take my fatigue seriously. Did you struggle with that?

    Liked by 1 person

    • Oh massively! I spent a few years being told I was lazy! It wasn’t until I broke down crying in front of this one Doctor, that I was finally listened to. I also explicitly asked to be referred to a sleep clinic

      Liked by 1 person

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