What a sleep disorder feels like

I sat on a stool in the corner of the meeting room, ready for the monthly brand research meeting, the room would soon fill up, so I hoped nobody would notice me. The clock struck 2:01pm and we kicked off promptly, there were still lots of empty seats at the table so I moved to a seat next to the Director sitting opposite a row of General Managers. ‘Well this will keep me awake’ I thought. Believe me I wasn’t planning on having a nap, what a sleep disorder feels like is going into a dream world in completely inappropriate situations, which as you can imagine is quite embarrassing in a professional environment.

That was 3 months ago in June 2017, and granted I had only landed back from the UK the day before so you could blame jetlag, however, this wasn’t the first time. In fact over the past few months since I went to doctor about my uncontrollable napping, I’ve been rewinding back through my adult life and realised that this has been happening regularly since I was 19 years old. That’s 15 years of trying to keep my eyes open. Now don’t get me wrong, I’m not saying this happens all day, every day, but it’s been noticeable to colleagues for many years now.

You have probably heard of Narcolepsy, that’s a very similar sleep disorder to what I have, I’ve been diagnosed with Idiopathic Hypersomnia (IH). I wanted to share my experience in case it helps anybody look at their napping / drowsiness and thinks it may not be right. I’ve shared some resources at the bottom of the page for more information and further reading for you.

What is idiopathic hypersomnia?

“The main symptom of IH is excessive daytime sleepiness despite adequate, or more typically, extraordinary sleep amounts (e.g., > 10 hours per night). Additional symptoms and complaints commonly include unrefreshing or non-restorative sleep, and sleep inertia and sleep drunkenness (difficulty awakening from sleep, accompanied by feelings of grogginess and disorientation upon awakening).”

As I research IH and read other patients stories, it’s amazing how much everything I have experienced over the years makes sense now. I haven’t found a story just like mine yet, I don’t take myself away for a nap in the day, I’ve purposely not napped and now I realise that I’ve been fighting the condition instead of having a nap. Some people schedule naps into their working day, they might work from home, book a meeting room or some may be unable to work. The severity of the condition varies from person to person.

I first googled the symptoms of Narcolepsy in 2009, even then my naps had been happening for 7 years. I was started to get my teeth into my Marketing career, and realised I was struggling to stay awake in meetings.

Everyday scenarios when my daytime drowsiness strikes:

  • Reading a lot of information sitting at my desk or in a classroom environment
  • Being present in a meeting where I am unable to move around and am being presented to. This could be with a group of people or just 1 other person.
  • Travelling – on any mode of transport, I can fall asleep in a few minutes
  • Reading a book on the sofa or in bed
  • Driving long distances

In each job, as colleagues have got to know me personally they started making jokes about it (not in a malicious way, I think it’s from confusion and fascination), “oh yeah I must have narcolepsy or something” I tried to laugh it off, but it was so embarrassing.

Believe me I have tried every strategy under the sun to try and stop myself from falling asleep:

  • Caffiene tablets before a big meeting (ironically I don’t drink Tea or Coffee)
  • Sucking hard boiled sweets
  • Drinking Berocca
  • Drinking water throughout the meeting
  • Drinking sugary hot chocolate
  • Pinching myself – like digging my nails into a part of my body 
  • Chewing gum
  • Taking notes – which have been compared to hieroglyphics because I’m sleep writing
  • Having a friend nudge me
  • Taking layers on and off to alter my body temperature
  • Fidgeting in my seat
  • Concentrating really hard on what the speaker is saying
  • Look around the room a lot

You name it, I’ve tried it, but the truth of the matter is my brain is just wired this way. There is nothing I can do to stay awake. In meetings when I’m presenting or am engaged in conversation I can stay away, it’s not like a cartoon where suddenly I’m talking and the next I’m asleep. My condition isn’t as extreme as that, with mine I feel the drowsiness coming on, my eyes roll, my head drops, I may even make a noise sometimes (which is mortifying!). I’m like a nodding dog.

When I first started noticing the symptoms...

Who can resist a flashback pic? Especially when it involves having pink hair! ha ha
IH hasn't stopped me from achieving great things, I have always been running at a million miles an hour with multiple activities alongside Uni and my full-time jobs. It affects people in varying levels.

It can take a long time to get diagnosed, for me I first noticed my symptoms at Uni, as I couldn’t stay awake in an hour long lecture. That’s Uni life for you though right? It’s chaotic, you party hard, you stay up late and you skip lectures. I wasn’t skipping lectures because I was lazy, I did it because I was embarrassed for the lecturer to see me falling asleep, and when you have short spiky bright pink hair, it’s not hard to stand out in classes of only 30-40 people.

“Symptoms often first appear in the mid-to-late teens or early twenties, although they can begin in childhood or at a later age.”

So back to the brand research meeting I attended in June, I had the option to dial in from my desk, but the meeting room was a 30 second walk from my desk so I went into the room. I spent most of the hour with my eyes closed, and I came out so embarrassed that I booked an appointment with the doctor straight away.

It was such a relief to talk about it, it was incredibly emotional and she referred me to a sleep clinic. I had some fasted blood tests so we could see if there were any warning signs of something else, but luckily there weren’t any red flags (for any other underlying conditions).

How is it diagnosed?

“IH is diagnosed by a night-time sleep test (polysomnogram) followed by multiple sleep latency testing (MSLT) the day after. The polysomnogram can identify other causes of excessive daytime sleepiness, such as obstructive sleep apnea. During the MSLT, the patient is given an opportunity to fall asleep on 4 or 5 occasions at 2-hour intervals. Current criteria for the diagnosis of IH by MSLT requires falling asleep in an average of less than 8 minutes in all the nap opportunities, without frequent dream sleep (which distinguishes it from narcolepsy).”
My private room for the night, with my pillow from home
Everything that was about to get stuck to me
What shall we call this facial expression?! Fear of no sleep tonight??

My sleep study

Wed 26th July: I took my pillow, iPad loaded with Netflix shows, my laptop and a book to hospital ready for my 24hrs hooked up to the machines. I was well fed at least, 3 courses for dinner, breakfast and lunch – even a chocolate cream cake at 9:30am! (Really!!?) At 7pm the lab technician came in to start attaching the electrodes to my leg, face and head. He taped all the wires to my clothing so I could still move around. At 10pm he came back to plug me into the equipment, and add some more wires and tubes. I had a tube in my nose to monitor my breathing, a strap around my chest to monitor my chest movements, a strap around my waist, and one of those white blocks strapped to my finger to take readings of my pulse.

Well that should have me covered...

I read for about 15 minutes before bed, something which I rarely do because I normally fall asleep after 1 page, tonight however, when someone is actually monitoring me, I feel like I could read for ages. Typical. I slept quite normally, which for me is restless, I completely woke up at one point, but I couldn’t move as much as usual because the wires meant I couldn’t sleep on my stomach, so I was limited to sleeping on my side or back.

At 6am the technician came in to wake me up and disconnect the wires from the machines. I could move around again now, but I had to carry the unit that all my wires were attached to because everything was still attached to my body, except the breathing tube and the finger block. Woohoo I can go to the bathroom after 8hrs!

I had breakfast at 6:15am and watched Netflix until my first nap test at 8am. I fell asleep straight away, in 3 minutes.

I had a total of 4 naps throughout the day, approx. 20mins each. The doctor came in each time to reconnect my unit to the machines, turn off the lights, and then it was up to me to fall asleep on demand.

  • 8am nap = this felt quite easy to go to sleep.
  • 10:15am nap = harder to nap, I was feeling the pressure. My thoughts kept wandering, so I had to bring them back to focus on going to sleep.
  • 12:45pm nap = I wanted to cry when I was left to sleep. I was starting to worry that the tests weren’t going to show what I had been experiencing for the past 15 years.

When I woke up from my 3rd nap I told the doctor my concerns. “I’m sat here not doing anything, but on a normal day when I’m at work I am very drowsy, how will the tests show that when the situations aren’t the same?” She explained that she can see I am falling asleep in the naps and she wouldn’t be able to do that in the day. OK, I’m feeling relieved about that.

  • My 4th and final nap happened at 2:45pm, which was the hardest to get to sleep, but I still managed it. Well I’m a pro sleeper, what can I say?! ha ha

When the doctor woke me up it was time to get out my pyjamas, wash the gunk out of my hair that had held the electrodes on my head, get some fresh air and go home.

The next step...

I received my diagnosis a week later, and the 24hrs leading up to the appointment were very emotional. I was extremely anxious, because I needed a diagnosis so I could begin treatment. The consultant, Dr. Lewis at Sydney Sleep Centre is amazing, he has a lovely manner, explained everything so well, and answered any questions I had. That said, it didn’t stop me from dissolving into tears when I left his office.

I think it was relief. To finally find out that I could stop feeling like this, I still had to wait for my prescription to be approved, as the IH medication is not something they can give away easily (it ended up taking 4 weeks). There’s also no cure, I’ll be treating my condition with medication for the rest of my life. So long as I don’t suffer any side effects, I appreciate how lucky I am that I can manage the condition. 

The biggest impact is on my ability to drive a car. Understandably, I’ve had to to say goodbye to my driving license in the short-term. I can get it renewed once a year by going back to hospital for a polysomnogram, and the daytime alertness tests. This time around I have to stay awake in 4 x alertness tests, which are 40mins long and I need to sit in a chair (doing nothing, no reading, TV, phone) in my dark hospital room being monitored by the electrodes and monitors on me. Providing I can stay awake – whilst on my medication – I’ll be approved to drive again. 

Tues 10th October: I’ve been on medication for 6 weeks now, and it has made a massive difference to my life, my work life mostly. I’m present in meetings all the way through, and my anxiety about meetings has pretty much gone. I keep living my life as normal. I can keep training hard, living my healthy lifestyle and I could probably do with exercising a little patience with myself.

I wrote this blog post in hospital in July, and I’ve just made a few updates today before posting it as I’m back in hospital having my tests done to get my driving licence back. I could have posted this at anytime in the past month since I knew my meds were ok, but I’ve been really nervous about sharing this. I wanted to share my experience in case it helps anybody look at their napping / drowsiness and thinks it may not be right. I’ve shared some resources at the bottom of the page for more information and further reading for you.

Please reach out if you have had a similar experience and would like to talk hello@lucylovesfitness.com 

Resources

The Epworth Sleepiness Scale

Dr Johns was the Founding Director of the Sleep Disorders Unit at Epworth Hospital, Melbourne, Australia. Dr Johns developed the Epworth Sleepiness Scale (ESS) initially so he could assess the daytime sleepiness of patients in his own private practice. The ESS was first published in 1991. The questionnaire was subsequently modified slightly in 1997 (see below). It has become the most frequently used method worldwide for assessing a person’s average level of daytime sleepiness in daily life.

If you think you might have a sleep disorder take this test and use it to go and talk to a medical professional.

Helpful links for further reading:

 

Take care, Lucy x

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