Idiopathic Hypersomnia has come a long way, and so have I
Michelle Chadwick is the founder of Hypersomnolence Australia (HA), the world’s first not for profit organisation to be dedicated to Idiopathic Hypersomnia (IH). In the same year, 2013, that Michelle started HA she created the worldwide Idiopathic Hypersomnia Awareness Week. In 2022 she gave a presentation at the Idiopathic Hypersomnia & Narcolepsy Education Day. This was an event she organised and included local and international speakers including Prof Yves Dauvilliers. You can learn more about the education day here. This includes links to all of the presentations. HA has received a lot of positive feedback from individuals expressing how deeply Michelle's presentation resonated with them. Michelle said at the time, “I knew people would relate to my presentation but I didn’t realise there would be so many tears. It’s sad but also reassuring to know none of us ever need to feel alone again”.
Following is from Michelle’s presentation... Public speaking does not come easy to me. I never intended to create a platform for myself. I do what I do for Idiopathic Hypersomnia (IH) because someone needed to stick up for, what researchers themselves call, “A neglected disorder”.
When I started out 10 years ago, I had two choices: I could do something; or I could do nothing. If I’d had any idea how hard it was going to be, I’ll be honest, I probably would have chosen to do nothing. But I didn’t and, a decade on, I’m still passionate and determined to make a difference.
People often ask me what sparked my passion and determination. Meeting someone else with Idiopathic Hypersomnia for the first time had a profound impact on me, it changed me. Jess is half my age. I saw my 23 year old self in her and knew I needed to do something. I didn't want young people like Jess to have to go down the same bumpy road that people my age with IH had travelled. It’s important for health professionals to know that my story is not unique within the IH community, it’s actually quite typical. How do I know this?
My friend Amanda, who also has IH, once asked me, “How many people diagnosed with IH do you think you’ve spoken to? As in, had meaningful conversations with?” I’d never even thought of that question before. My thoughts skimmed through the last 10 plus years of connections with people with IH. I started the ‘Idiopathic Hypersomnia Australia’ Facebook group in 2012. I then established the IH patient registry, which is Australia’s only record of people diagnosed with IH. There are approximately 700 people on that registry. I’ve met and had conversations with many of them, and their families too.
I created the worldwide ‘Idiopathic Hypersomnia Awareness Week’ in 2013, which connected me with people all over the world. I started ‘Living with IH’ communities in Australia/NZ, the US, Canada, and Europe/UK. I also have IH friends in South America and Japan who I regularly chat with. I also set up the Australian ‘Living with Narcolepsy’ support group too. The answer to Amanda’s question was many hundreds of people. I realised that I’ve had meaningful conversations with more people diagnosed with IH (and Narcolepsy) than any doctor in Australia will probably ever have.
My journey started many years ago. I first noticed the symptoms that would consume the rest of my life when I was in my first year of high school. I was 11, 40 long years ago. Due to my apparent scholastic abilities, my parents were told I’d been offered a place in a private school. Only recently, my mum said that the reason I turned it down was because I felt strongly about the public school system, which does sound like me, but I suspect that my decision had more to do with my struggles. I probably knew that the state school system was going to be easier for me to manage. This turns out to be true because what I got away with during my school years would never fly in a private school. I was often late to school. I slept through multiple alarm clocks. My brother, who was always pedantic about getting to school on time, would often frantically wake me as he dashed out the door. There was never any time for breakfast. I barely brushed my hair. In winter, I would sleep in part of my school uniform so that when I did finally drag myself out of bed all I had to do was throw my tunic over my head, slip my shoes on - I literally had shoes with no laces - grab my bag and rush out the door, still in a sleep-drunken haze. My struggle in the mornings was despite a long, deep sleep the night before. In fact, I was never without adequate sleep - I slept every opportunity I got! I slept during lessons. I would skip class and sleep in the library. I slept when I got home from school then I would still sleep another 9-10 hours overnight. But I never ever felt awake.
Life never got any easier after school. Adulting is tough for people with IH because we are expected to behave like everyone else. The average person wakes up then gets ready for school or work. Some people may also have a family that they need to get ready as well. They attend school or work and social engagements. They interact with family and friends, and participate in sports or hobbies. They care for themselves, a home and often a family. These are all very normal things that are expected of anyone, right? But, people with IH have difficulties with all of those things, all day, every day. I faked my way through my teenage years and now I was beginning the long journey of faking my way through adulthood. I’ve spent my entire life trying to participate like ‘normal’ people do, and the whole time I was a wreck inside. People with IH will know what I mean, right?
I often failed at it too because nothing changed. Instead of being late for school, I was now late for work. In fact, some days I didn’t wake up until lunch time and I would only be awake briefly before falling back to sleep for the rest of the day… then I would sleep again that night. Fronting up to work the next day, after not ringing in sick the day before, had me full of anxiety – and it happened a lot. Needless to say, I had a lot of jobs when I was younger, a lot of them very important ones too. But, the struggle to stop sleeping, to wake up and stay awake, was intense. Relentless. In 40 odd years, I’ve had absolutely no reprieve. I don’t know what it feels like to be fully awake but I’m certain this is not it.
Waking up is the hardest thing I do every day and I know this is the case for others too. This is a severe and disabling symptom of IH which is often neglected by doctors. In the words of Dr Yves Dauvilliers, “Sleep inertia is a frequent and disabling symptom in IH, but it is often underestimated by physicians... In IH, sleep inertia may be severe and long lasting, and is sometimes associated with confusion, disorientation and clumsiness, i.e. sleep drunkenness that may be more problematic than the excessive daytime sleepiness.” So what is sleep inertia and sleep drunkenness? Sleep inertia refers to the transitional state between sleep and wake. It is marked by impaired performance, reduced vigilance, and a desire to return to sleep. Its effects may last minutes to several hours. In simple terms, sleep inertia is when you find it extremely difficult to wake up. People with severe sleep inertia sleep through multiple alarms and will typically fall back to sleep several times, involuntarily. They often require humans to physically wake them, to make sure they stay awake. People with IH who have sleep inertia usually experience it every time they wake up, both in the morning and when waking from naps. Sleep drunkenness manifests as confusion, disorientation, poor motor coordination, and slowness. People with sleep drunkenness may say irrational or unintentional things, then have no memory of doing so later. Their speech may be slow or slurred. They may be clumsy, such as dropping things, walking into doorways or bouncing off walls. Some people report sleep drunkenness lasting as much as 4 hours or more, which is why it can be more problematic than the daytime sleepiness that is experienced in IH. Difficulty awakening from sleep (sleep inertia) is common in healthy people, especially in adolescents (42% of adolescents report difficulty getting up almost every morning). Sleep inertia is also not uncommon in several medical conditions such as sleep deprivation, delayed sleep phase syndrome, non-rapid eye movement (NREM) arousal disorders, sleep apnea, insomnia, and mood disorders although it is less frequently seen in narcolepsy type 1 (with cataplexy). While regular healthy people and people with medical conditions, including other sleep disorders, may experience sleep inertia and/or confusional arousals, IH researchers suggest that the extreme difficulty waking up (sleep inertia) and sleep drunkenness seen in people with IH is typically much more severe than that which occurs in other individuals. Extreme difficulty waking up (sleep inertia) and sleep drunkenness have been noted as “highly specific (in IH), as clear-cut sleep drunkenness is not found in controls”. Research suggests that the reason people with other sleep disorders, and even otherwise healthy people, experience difficulty waking up and confusion at awakening is likely due to poor quality sleep and lack of sleep. It is important to understand that people with IH do not have poor quality or insufficient sleep. In fact, studies have shown us that patients with IH had the largest frequency and duration of sleep inertia, but also of undisturbed nocturnal sleep. Whereas laboratory studies on healthy subjects found that cumulative disrupted sleep and sleep deprivation are associated with increased sleep inertia. Similarly, sleep inertia reported by patients with obstructive sleep apnea and insomnia have also been linked to sleep fragmentation and sleep restriction… This suggests that the underlying cause of sleep inertia and sleep drunkenness in IH may not be the same as it is in other individuals. The take home message for doctors is that some people with IH experience a form of sleep inertia and sleep drunkenness that they may have never seen before. Doctors should not assume it’s like anything they have seen in other disorders. They should not brush it off as something that is insignificant. Waking up is the first thing humans need to do every day. A good start to the day is important, as it sets you up for the rest of the day. So please remember, some people with IH have an absolutely horrendous start to every day. References for the facts on sleep intertia/sleep drunkenness can be found here: https://www.hypersomnolenceaustralia.org.au/single-post/when-waking-up-is-the-hardest-thing-you-do-every-day Along with the constant need for sleep and the dreadful process of trying to wake up and stay awake, I also struggle with the deterioration of my cognitive abilities. Anyone, including doctors, who thinks that IH is simply ‘feeling sleepy during the day’, doesn’t understand IH.
Idiopathic Hypersomnia is more than just sleepiness. Cognitive ability is defined as a general mental capability involving reasoning, problem solving, planning, abstract thinking, complex idea comprehension, and learning from experience. People with IH can struggle with all of that. We can lose track of time, get distracted easily, have poor memory recall, and experience difficulty expressing and understanding verbal communication – all of which can cause us to feel frustrated and irritable. Even noise, and it doesn’t have to be loud, just people talking, can be too much to cope with. My IH friends and I know all too well what “too much peopling today” means. To the loved ones of people with IH, please don’t take it personally - sometimes withdrawing ourselves from whatever is going on around us is the only way we can cope.
Most people experience feeling tired, fatigued or excessively sleepy, particularly when they do not get enough sleep. What’s different for people with Idiopathic Hypersomnia is that they experience extreme sleepiness despite getting adequate, or typically more than adequate, hours of sleep. Their sleep is typically deep and uninterrupted but it is not refreshing. Despite extraordinary amounts of good quality sleep, people with IH are in a constant state of sleepiness. I always knew I wasn’t ‘normal’. As a teenager and young adult, I was easily the most determined person I knew. If I could have overcome the extreme difficulty I had waking up and my need for excessive sleep, I know I would have. I knew that if everyone felt like I did, the whole world would literally stop functioning the way it does. That is how significant the symptoms of IH can be - they certainly were for me. It took 20 years to find a doctor who could get their head around the severity of my exasperated pleas for help: ‘I’m ALWAYS tired’; ‘I sleep A LOT’; ‘I CAN’T wake up’; and ‘I CAN’T stay awake’. When my sleep specialist told me that I had Idiopathic Hypersomnia and explained what that was, I couldn’t believe that I’d finally found someone who knew and understood so well what I had been experiencing for so long – and it had a name! That diagnosis took 20 long years but my relief and positivity were short lived.
My doctor told me there was no cure for IH. He warned me that the only medication that was available didn’t treat the cause and it had potentially unpleasant side effects which prevented some people from taking it at all. Oh, and if it did work, I could build up a tolerance to it over time, which may cause it to stop working. There were no support groups and no organisations anywhere in the world that represented IH, so there wasn’t anywhere I could go for more information and advice. Great. So, I had a name for the disorder I had, and a medication that may help me but even if it did, it could eventually stop helping, and that was it. That was literally it. Rather than get depressed, which under the circumstances was difficult to fight, I set out to change all that. To change it, not for me, but for those who came after me. Nothing I’ve done or continue to do will change my lived experience. My hope is that what I do will help others. I don’t want one more person to have to travel the same rocky road other people with IH my age have travelled.
Acceptance can be defined as actively embracing the experience of thoughts, feelings, and bodily sensations and allowing them to come and go without struggling with them. Acceptance can be something that many of us don’t even realise we need to do. I can assure you that, until you accept your situation and live your life accordingly, the people around you will find it difficult to reach the level of acceptance you expect and need from them. This is important, so I will say it again, “Until you accept your situation and live your life accordingly, the people around you will find it difficult to reach the level of acceptance you expect and need from them.” I am the happiest I have ever been in my life, but it hasn’t come without struggle to get to this point. Some time ago, I realised that I had to stop fighting against what I have no control over. In doing so, it has allowed me to be the best person my brain/body is capable of being rather than continuing to have unrealistic expectations and being constantly disappointed with the outcomes. I honestly don’t know how I knew what I needed to do to turn my life around but I’m guessing it came about through desperation. I had hit rock bottom. My symptoms had become so difficult to manage, I naturally assumed that my IH had gotten worse. So, I started by looking into what may have caused it to progress. Much to my surprise, I found that research suggests IH reaches its peak in young adulthood and generally remains stable, that is, it doesn’t get worse. So why was I struggling more than ever? Why did I find some days, weeks or months more difficult than others? I spoke to and read the comments of hundreds of people diagnosed with IH. I spoke to doctors and other healthcare professionals, including clinicians and scientists that have studied IH for decades. What I found is that, aside from the people who have other medical and/or psychological conditions which can account for or contribute to their symptoms, the most likely reason IH can appear to have worsened is because the person's ability to manage their symptoms is compromised by other external factors they’re not taking into consideration. This was certainly the case for me. Let me explain… We know that chronic stress can have a huge impact on cognitive function. We also know that people with chronic illness are at a greater risk of developing depression and anxiety, and that this too impacts how well someone with IH manages their symptoms. But just how significant can the stress be for someone with IH? As I mentioned earlier, for many people with IH, every morning is a struggle. Once they’re awake, they’re expected to stay awake all day, despite an overwhelming and insatiable need for sleep. And that’s irrespective of how much good quality sleep they’ve had. There is no reprieve from the sleepiness; the challenge is never ending. But, all too often, this constant struggle is compounded by both the expectations of others and the expectations which people with IH place on themselves. Can you imagine what that would be like, day in, day out, for years and years? Many people with IH go years without even knowing they have a neurological disorder that is responsible for what they experience. They have no “excuse” to offer those who criticise them. Then, they get diagnosed, but with a condition which is often misunderstood by even the medical profession. It isn’t recognised appropriately in many parts of the world (I doubt it is recognised appropriately anywhere in the world). This diagnosis quite often ends up creating more questions than answers. The stress this can cause is enormous and quite often, but not surprisingly, it results in depression and anxiety. This stress is chronic and its effects are damaging and long lasting. I’m 50. I’ve been living with IH for 40 years. It took over 20 years to be diagnosed - 20 long years of constant criticism and judgement from both myself and others. I wanted many things in life and I tried so hard to work toward them. Not achieving my goals wasn’t something that I accepted lightly, but then I also had to face the judgement of others. On top of that were the numerous medical tests and doctor’s appointments to endure, and the subsequent judgement which came from many of them too. When someone is considered a hypochondriac often enough, it’s not hard to understand how they may start to believe it. But not me. I have a drive and determination that I just didn’t see in many of the people in my life. So why was I so hard on myself?
I don’t know exactly, but I do know that there was a lot of pressure on me to be “normal”. I certainly knew that being “normal” would have made my life a whole lot easier. Perhaps I subconsciously pushed myself beyond what I knew my brain and body was capable of because I was just so desperate for a “normal” life. I expected more of myself. Within a few years of diagnosis, after spending the entire time learning to understand Idiopathic Hypersomnia, I finally realised that I had to accept my situation and work with it, not against it. But it was by no means an easy road to that realisation. I’m a wife and mum of two children (who were toddlers when I was diagnosed). I was working fulltime, mostly from home (due to my condition) plus I did a lot of charity work. I’m not going to lie. Externally, everything may have looked ok, but it wasn’t. I was a mess. When I wasn’t asleep, I was struggling to wake up and stay awake so that I could do everything that “normal” people did. I resented the pressure of this and the demands of life. It made me angry; I cried and screamed. My marriage was hanging by a thread. Hell, my sanity was hanging by a thread! And if that wasn’t bad enough, my symptoms were now harder to manage than ever. I had a diagnosis and I had medication too, yet neither of them changed my situation much at all. What changed was me and, when I did, my whole world changed for the better. There wasn’t one specific thing which was my lightbulb moment for change. What I’m verbalising now didn’t exist in the context of Idiopathic Hypersomnia. Back then you could Google ‘Idiopathic Hypersomnia’ and nothing but old research papers would come up. There were no words written by other people with IH to tell me that it was ok to give in, surrender or, as I say, “accept” my situation. There was nothing which explained how chronic stress, depression and anxiety would make my symptoms more difficult to manage, but I now know they do. Miracle cures aside, Idiopathic Hypersomnia is a lifelong disorder. It does not magically disappear. That doesn't mean that the current treatments on offer won't help, rather that the underlying problem is not going to disappear. It is ok to mourn the loss of who we were prior to the onset of IH – in fact, it’s necessary. It is ok to grieve for who or what we hoped to be but we need to accept that we will never be that person again. Acceptance allows us to move forward and be grateful when treatments do work. It allows us to start building a life that is suited to our condition. It allows us to create our version of normal, and live a life that is free of unrealistic goals and expectations. We can replace self-criticism and struggle with revised goals and more appropriate expectations. It also frees us from the guilt and shame that so many of us feel and that alone has a huge impact on how much happier and brighter our future will be. Worth doing, right? Absolutely. You’re worth it. Take home messages for health professionals with idiopathic hypersomnia patients
The relief patients may experience when diagnosed with IH, the confirmation that they have a genuine disorder, is typically short lived. Prepare your patient for this and help them to manage their expectations. Your support may include a variety of resources such as follow-up appointments, a referral to a counsellor or psychologist, community groups and services, fact sheets, credible online resources and patient support groups. Encourage them to educate and help themselves throughout their journey.
Be honest about the medication they can be prescribed for IH. Clarify expectations, limitations and side-effects. Remember, medication is designed to help manage some of the symptoms, it’s not intended to make symptoms disappear.
Chronic stress, depression and anxiety will make IH symptoms more difficult to manage. Please acknowledge and validate this then work with your patient to support them.
Discuss with them the impact their condition/treatment may have on driving or operating machinery, and their reporting obligations within your state or territory. Help them navigate whether their disorder affects the safety of themselves and others on the roads and in the workplace.
Support your patients as they navigate the inevitable challenges of how their disorder will impact work, study, having a family and their relationships.
The best way to manage Idiopathic Hypersomnia is with a holistic approach. Discuss a care plan with your patient. Explain to them what it is and how it can help them.
Finally, thank you to everyone who has ever donated to Hypersomnolence Australia. Your support has ensured that there is an organisation for IH, a place for people to go to for information and support. It also ensures that there is a place for doctors to refer to for information. Our information is unique. We are guided by medical professionals but also share patients’ lived experiences, which are invaluable to a well-rounded, educational experience for medical professionals. I would like to specifically thank Amanda Vernon, Ellen and also Tiffany, who has been a generous supporter of Hypersomnolence Australia for many years. Your support does not go unnoticed. I would also like to express my sincere gratitude to all of the clinicians and researchers who have assisted me along the way. I appreciate the time that each of them has given me, to assist my knowledge and understanding of Narcolepsy and Hypersomnia, and particularly Idiopathic Hypersomnia. Click here to watch Michelle's presentation. Read other words written by Michelle:
We feel bad enough about what we can’t achieve and what we miss out on. "...imagine what it is like for someone who suffers from a chronic disorder that for many means NO amount of sleep guarantees they will get their “spoons” back. This is what living with Idiopathic Hypersomnia is like for most of us... The spoon theory for people with Idiopathic Hypersomnia can mean that they may never know how many spoons they are going to have from one day to the next because sleeping does not give us back a new supply of spoons. On top of this the medication we are prescribed doesn't treat the cause and it often makes the symptoms worse so it doesn't guarantee a new set of spoons either... So the next time you have an opinion about someone with Idiopathic Hypersomnia or some words of advice please remember these key points: Read more here What is important for the health and well being of someone with chronic illness? There is no one size fits all approach to managing chronic illness but there are things we can do that will help us make the most of living with a life altering condition. Read more here Thank you for caring for someone with Idiopathic Hypersomnia I’ve spoken to many people with Idiopathic Hypersomnia over the years, very few have the help and support or understanding from loved ones that they need. Many of them are carers themselves, either as parents of young children or carers of elderly family members or other people with illness. Every so often I speak to concerned parents, partners or friends of people with Idiopathic Hypersomnia. These people really care about their loved ones and it is such a pleasant change. Usually, the first thing I say to them is, thank you. I let them know that it might not seem like they are doing much to help but just believing in someone with Idiopathic Hypersomnia makes a big difference. Having to constantly explain yourself, or make excuses or apologise for something you have no control over is exhausting and it can become quite depressing. Read more here Journal article - Bedřich Roth: pioneer in Sleep Medicine Published in Sleep Medicine 3 November 2020
We initially shared Michelle's story back in 2015, and it resonated deeply with many individuals who found solace in her words. They expressed how it made them feel understood and acknowledged, as it was not common to see a story about IH online. It was around this time that we recognised the importance of prioritising the sharing of individuals' IH stories and perspectives during the annual Idiopathic Hypersomnia Awareness Week. As a result, HA's Living with IH page now features a diverse collection of IH stories and perspectives from individuals worldwide.