OUR HISTORY

LIVING WITH IDIOPATHIC HYPERSOMNIA

TONI O'NEILL

Throughout my life I have always had symptoms of idiopathic hypersomnia. When I was a child my parents would constantly comment on my ability to sleep anywhere or at any time. A car ride, watching a movie or even in a camp chair while watching my siblings play sport. There were very few weekends that I would get through that didn’t require a nap despite adequate sleep at night. My need for sleep was not like my peers or my siblings and the ongoing label of being lazy continued to follow me because of it. I also experienced ongoing memory issues. Unless it was song lyrics or simple directions recalling information or remembering people’s names was something that would render me feeling stupid. To this day, my memory is aided by my sister’s recollection of my childhood, friendships and my experiences. Without this support, my memory is a jigsaw puzzle that has many pieces that have been misplaced.

Since then, my need for sleep, my memory challenges and other deficits that have presented themselves have escalated. A few years ago in my mid-twenties my ability to stay awake throughout the day was nearly impossible. At the time I was battling a chronic illness that impacted my ability to function and engage in most life activities. So, when my need for excessive sleep became more debilitating the natural conclusion was that my body was experiencing fatigue and was part of my current illness. It wasn’t until 2019 when my chronic illness provided me an extended break and my need for sleep, memory challenges and other symptoms continued to escalate despite this that a question was raised about the cause.

In October 2019 my dentist was concerned that I may have had sleep apnea. There was the possibility that I was grinding my teeth at night so after further discussions about my sleep I was referred to a sleep specialist. The sleep specialist felt it was necessary to investigate with an overnight sleep test followed by a day sleep test called MSLT. I also had a full blood count and an MRI to rule out possible causes. During my consultation the sleep specialist was alarmed to hear that I had recently experienced 5 micro sleeps while driving within 4 days. Due to this my driving was suspended, my sleep study was moved forward and stimulant medication was commenced immediately until the sleep study could be completed.

In December 2019 I was diagnosed with idiopathic hypersomnia. Since my diagnosis, I have been required to learn and understand the condition. Many symptoms once believed to be normal for me now have a reason. I take armodafinil every day and require Ritalin as a further aid on days I find my symptoms particularly difficult to manage. Medication has helped me function better throughout the day but my symptoms are still present every day on some level of debilitation. With the medication I am able to lower my experience of excessive tiredness but it has not in any way got rid of the excessive tiredness, debilitation, and memory issues or other symptoms associated with idiopathic hypersomnia.

One Tuesday morning recently I noticed that I was unable to find my purse. I didn’t think much of it and figured it would be somewhere within my house as I was used to losing everything. It wasn’t until the following Thursday afternoon when a manager from Woolworths drove into my driveway and handed me my purse that I realised it wasn’t in my home. The manager mentioned to me that the purse had been left at Woolworths on the Sunday night. Not only did I not realise I had left my purse somewhere, I did not remember going to Woolworths at all that week. Losing things and forgetting everything is one of my worst symptoms. I constantly have to ask others to repeat themselves when telling me how to spell their name, email address or giving me their contact numbers as my brain has trouble taking in and retaining the information.

 

As a professional social worker, my job requires me to remember important details regarding families’ risks. I engage with a lot of professionals daily where my ability to remember details and use specific language is important. It can be challenging to ask others to repeat themselves multiple times and listen to the sighs or the frustration provided back to you. My memory challenges leave me feeling frustrated and stupid, they leave me feeling unprofessional, despite that I know I have the professional capabilities.

Due to my level of symptoms and the inability of my medication to have enough of an impact on them I continue to have driving restrictions. This will probably be ongoing for me. I am limited to the amount of km’s I can drive from my home address. This limits my job opportunities and my ability to visit my family and friends. I am also unable to drive between the hours of 9pm-6am as without my medication (I can’t take stimulant medication at night) my symptoms are too serious to drive a car. My restrictions are not just set by my sleep specialist they are on my driver’s licence put in place by VicRoads, my State’s drivers licencing authority. My driving restrictions cause me to feel further isolated and alone with my experience as I rely on others to plan a simple visit to my parents’ home or my best friends.

Since my diagnosis there has been many different changes in my life. My role at work was changed and my work hours have been reduced to involve a day off every fortnight instead of full time. I have been required to put multiple strategies in place to address each symptom I experience which include:

  • Setting alarms every morning to help me get out of bed while also having those around me help me wake up when my body decides to rebel against me.

  • Creating routines for where I put things and for details I need to remember. Everything I have to remember needs to be in my calendar or set as an alarm to ensure it is not forgotten. This includes a reminder to take meat out of the freezer or turn on the oven. I put my car keys in a storage box as if I do not follow this routine I will lose them.

  • I avoid going to bed prior to my scheduled time to ensure I do not impact on my sleep routine. Majority of the time I attempt to give myself at least 9 hours sleep a night with fluctuations of less and more on occasion.

  • I attempt to complete tasks slowly with regular rest breaks to avoid my tiredness impacting me so badly that my body shuts down.
     

My diagnosis has helped me have some understanding of my symptoms and helps me feel less abnormal or weird. My diagnosis has provided me with opportunities to engage with others with idiopathic hypersomnia and help create awareness and understanding of the condition. The diagnosis has helped me gain access to PBS (affordable) medication to support me to stay awake throughout the day. My diagnosis has helped me be kind to myself and to accept my limitations and accept the symptoms are part of a condition that I can’t control. However, my diagnosis has not changed my experience or how idiopathic hypersomnia affects me. My medication allows for a little respite from my excessive sleepiness but it does not keep me from struggling to stay awake every day, it does not stop my memory problems or my experience of brain fog (which leaves me unable to speak coherently and stay focused), it does not stop my body from shutting down at night resulting in the inability to walk to bed or the sleep drunkenness I experience in the morning as my brain fights against me for more sleep.

 

Prior to my diagnosis I had never heard of idiopathic hypersomnia, even now there is so little known or understood that it is challenging to know how to manage my illness and lessen the impact on my daily life. Idiopathic hypersomnia is not just feeling tired it is feeling like you are constantly in a day dreaming state even when you have had lots of good quality sleep. I hear everyone around me and I see everything around me but I can’t always focus or acknowledge everything that is happening in my environment. My body is constantly seeking out the right amount of sleep to feel refreshed which is never achieved because no amount of sleep is ever enough. The slightest overexertion of tasks can leave me completely exhausted and burnt out for days. Living with an illness that has no medication to decrease the symptoms, no knowledge to understand the reasons behind it and that is rare is a very challenging, lonely and is frustrating. I live every day trying to manage an illness that I don’t understand, can’t control and is widely misunderstood and unknown. It is a lonely journey that impacts my mental health and my confidence.

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