LIVING WITH IDIOPATHIC HYPERSOMNIA
My name is Wendy. Living with Idiopathic Hypersomnia is only part of my story.
I was formally diagnosed with Idiopathic Hypersomnia (IH) 4 years ago in 2015, however, I had actually undergone sleep studies and investigations as far back as 13 years earlier. Back then I was working shift work as a nurse. I was told back then that I didn’t have the definitive brain wave criteria for narcolepsy but that the studies were suggestive that I did have some type of sleep condition but they didn’t know what, so the suggestion was to give up shift work. Great I thought, the majority of nursing work involves shift work.
My symptoms at the time were extreme sleepiness about 40 minutes after waking up for an early shift ... unfortunately for me (& other motorists) this usually meant that the sleepiness hit smack bang as I was driving on City Link, and I would sometimes have to pull over, get out and walk around the car a few times to wake up enough as no other tactics (windows down, slapping face, wetting eyelids) seemed to work. A dangerous place to be stopping! I would wake up enough to complete the drive to the city hospital where my work would begin.
As long as I was on my feet and busy, I was fine. No evidence of tiredness but the moment I sat - in meetings, at the desk to write my notes, in the car to drive home ... bam! Overwhelming sleepiness, nodding off; if I was in a work meeting, I remember I would be trying desperately to focus my brain to stay concentrated on meeting content, focusing on trying not to nod off, or let my face betray my sleepiness lest it be construed as boredom or disinterested, both of which would be totally unprofessional and not what was expected of someone holding a senior role. Pulling over to sleep on my way home wasn’t an issue but despite doing this one day, the cruncher came when I actually momentarily fell asleep again as I was on the exit ramp of the freeway on my way home from work and I hit someone... only mild damage thank goodness but that was the prompt for the first initial investigation.
Following the suggestion to give up shift work, I found nursing work that was Monday to Friday, day hours. For many years I was able to manage my symptoms and the extreme tiredness wasn’t such an issue driving to work, and my new role had minimal desk sitting time so no chance for sleepiness when I was physically on the go. I would still get drowsy driving home but managed this with pull over naps. As long as I kept my weekends busy with active movement, I was fine. Usually one day was crammed with a mix of the domestics, a smidge of exercise walking the dogs or bike riding with them, and a smidge of social life to round things off. The second weekend day was a write off if I had no concrete plans to be up and doing something. I would struggle to wake up and I could easily lose an entire day to bed just catching up on sleep, often surfacing around 5pm to be up for a few hours before hitting bed again.
My final diagnosis came about by accident. I had taken my Mum into see a respiratory consultant because I believed Mum had undiagnosed sleep apnea. Mum was answering ‘No’ to some of the assessment questions being asked by the doctor, but I was answering ‘YES’ in my head. One of the main things I recall was that I was constantly waking up with a pounding headache day after day. Because I have Occipital Neuralgia, pounding headaches are, unfortunately, no stranger to me and I’d just thought I was going through a bad patch again and must be due for another round of acupuncture. In addition to the headaches on waking, I was finding it increasingly difficult to physically get out of bed due to an almost drunken state. My brain would struggle to focus and I was literally like a zombie of a morning. When I spoke to the consultant at the end of Mum’s appointment, she suggested I see my GP. So that led to me being re-investigated and finally being diagnosed.
Hallelujah! Now I had an answer. Something to explain the re-emergence of the symptoms appearing at work. By now I held a much more senior role, and my sleepiness during meetings was becoming harder to hide and created the illusion of me being lazy, sloppy and disinterested; none of which was true. The worst meetings to fight falling asleep in were where there was only one other participant and myself - conducting job interviews, performance managing staff, sometimes I totally vagued out and have no idea what I said. My note taking at the time was no help either because the more I fought sleep, the more indecipherable my writing became.
I shared the diagnosis with the other manager I shared my office with, along with my boss who was partially supportive and allowed me to start later on a Wednesday so that I had a midweek opportunity to have a bit more of a sleep in. I had been turning up later and later to work of a morning and then staying later and later at the other end of the day to make up for my late start. I’m not sure though that by staying back I was any more productive as I would be fine one minute and then it was literally like a switch had been thrown and I would be nodding off at the computer. I would try desperately at this point to save any work and shut down my computer but my brain seemed to struggle with the simple act of even knowing how to save work to the correct file path, which resulted in there being a few pieces of work that I lost altogether in moments like these.
Starting Modafinil gave me back some life, alertness and energy. Sadly, it only seemed to work for a while and if I was extremely tired, despite having taken a tablet, I could still override it too easily by falling into a big sleep that would often last for hours. I’m on Armodafanil now and that does hold me better but by 5pm (drive home from work time), any effect from the day seems to have worn off and I find myself fighting falling asleep. The doctor suggested I take only a half tablet in the morning with the second half at lunchtime. He reasoned that staggering the dose might work better for me. It doesn’t. While I still had Modafinil, I would take one of them to top me up and get me home safely. The doctor said he could write a script but it wouldn’t fall under the government subsidy so I would have to pay the full cost of it myself. It’s quite expensive so I chose not to get a script.
I’ve found since my diagnosis, that when my sleepiness is out of control, I eat more sugary junk food which spirals the weight up. Then depression follows and because I’m just so damn tired all the time I can withdraw from social things, so it can become a real vicious cycle. I also get more stressed with work stuff and tend to lose some resilience to deal with the political crap that can so often accompany a senior role.
I’m about to start job hunting for something new. I won’t be sharing about my idiopathic hypersomnia diagnosis at the interview, but I feel I will need to say something to my immediate manager after I’ve been hired. It’s a tricky one, because I don’t want to be discriminated against, but even if I was, unless they came right out and said these are the reasons we are not employing you, you would have a hard time proving discrimination. I may need to negotiate some flexible start times so I will need to share about my circumstances for this. There are some current role openings that I would have pursued once but because they involve a bit of car travel time from one site to another it’s not wise nor probably even safe for me to knowingly take on a role that involves travel.
I’m so glad for Hypersomnolence Australia. Despite being given information from me, friends and family don’t really get what I have and how it affects me. I’m not lazy, slack or anything else. We do need to raise awareness and educate those around us. If I’m feeling good and my natural underlying night owl tendencies re-emerge, I don’t need to be made to feel guilty by those closest to me for choosing to go to bed later once in a while. I’m sure some think it’s a load of !@$(+&%)! but it’s really not.
If you are newly diagnosed, take heart. Together with your doctor, you will figure out how to navigate this ‘new normal’ you have just had bestowed upon you. For me, I firmly believe there is a cause and effect relationship with stress. I try not to give in to this wretched sleep thingy too much and allow it to drain my life and joy, but if I need to have a day or an afternoon in bed, I do. I jam pack a lot of into my life. I have traveled, including to my dream destination of Antarctica. I love sunset beach walks, gardening, catching up with friends and extended family including a regular 3hrs of travel on a weekend day to visit my elderly father. I’m my own worst enemy in lots of ways but I’m also learning to be my own best friend.
Andvord Bay, Antarctica