LIVING WITH IDIOPATHIC HYPERSOMNIA
OLIVIA BAKER

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I suffer from a rare condition called Idiopathic Hypersomnia. It is not well understood, and has a huge impact on the life of the affected person, and the people around them.

 

I wanted to take the time to write about my experiences, frustrations, and perhaps even educate a bit on what it's like to live with Idiopathic Hypersomnia.

So what is it?

 

Well, it's in the name. It's an "idiopathic" illness, but in layman's terms essentially means - there's something wrong, but we still haven't figured out why. It's widely believed to be a central nervous disorder, and wreaks havoc on a person's body and mind.

How has it affected me? When did I realise I had a problem?

 

I think it's always been with me. It's certainly been progressive. I remember struggling in my later years of high school. I spent less time pulling all nighters like my peers. Sometimes I had to nap as soon as I got home from school, sometimes missing dinner altogether. I remember in my later teens, I slept for 36 hours. I went to sleep in the afternoon, woke to find it was morning, then was startled to realise it was actually the morning after the day I was supposed to wake up.

 

It wasn't until I got my first full time job around 21/22 that things became noticeably wrong. Over a few months, my cognition had started to decline. I was falling asleep at my desk frequently, and sometimes at red lights driving to and from work. I was downing 6 energy drinks a day, with little effect to try and fight it. I was sleeping 8-12 hours a night at regular cycles, and I couldn't work out what was going so wrong.
 

I took myself to the GP, who sent me for a ton of testing. So. Much. Blood. (and yet somehow I still faint during a blood draw). Nothing ever showed in these tests, and I became increasingly more frustrated. I got sent to a sleep clinic for overnight testing. There was enough of a result to push for further testing, which was about 24 hours in a hospital clinic. I was kept in a room by myself under observation. Every now and then I'd be instructed to lay down and fall asleep. I fell asleep in under 3 minutes each time (I think from memory). Way faster than any person should during the day after a full night’s sleep.

 

While it was a relief to have a diagnosis, there's so little information and treatment available for my condition.

 

Since my initial diagnosis, my health has been on a steady decline. In the last 2 years, it's taken a huge dive, which is admittedly terrifying.

I used to love dancing and hiking and rock climbing. I used to enjoy going for long walks, and even going to the gym. Now, I find it hard to get out of bed. Most days I have so little energy, that I have to choose where to spend it. That means often having to forgo things that I need, like home cooked meals, household chores, or even showering. Things that take a lot of physical energy that we take for granted. I often lose my train of thought in the middle of a conversation. I don't mean once in a blue moon, I mean almost every single conversation I have. I can be looking right at you and listening to what you say, and immediately forget everything you just said, like it completely failed to absorb. I find it really hard to absorb audio information. I can't watch video without subtitles, despite having perfect hearing (yes, it was tested recently).
 

I had to drop out of school because I would nod off in class, despite being interested in what I was learning. I fall asleep in social situations, especially where more than one person is involved. This often leads to well-intentioned jokes, but rather than finding it funny, it just makes me shy away from participating in future events. With this comes shame, and I'm not sure it's something I will ever be able to completely overcome. My energy levels are unpredictable. I couldn't even tell you if I'll be awake 15 minutes from now.
 

I've given up looking for work. The insane degree of flexibility I need to work just isn't something any employer is willing to provide. I'd apply for about 1000 jobs a month, get a handful of interviews, and never a call back after disclosing my condition, despite a promising working history. 
 

People get angry with me for not listening, or for forgetting things and missing deadlines. I feel like a constant failure. I often find myself sitting on the floor by myself, head in my hands, crying and wondering what on earth is wrong with me.
 

Some days are so bad, that I feel so overcome with fear that I may one day be so overcome by memory problems that I'll forget who I am by the age of 40. Of course, that's not something that's been noted with my illness, but it's hard not to feel this way when it's progressed so much so quickly.
 

I've put on a lot of weight. The mix of low energy, not being able to exercise, and having to eat cheap and easy to prepare foods has made things difficult. Not being able to work means being stuck on welfare, which means being severely limited by my options financially.

 

So what can I do to treat this? What have I tried?

 

In Australia, we have only a small selection of treatments available. First line treatments are: Modafinil, Dexamphetamine and Ritalin.

Second line treatments are: Armodafinil, Vyvanse and Ritalin LA. These are essentially newer, longer acting versions of the first line treatments.

 

Modafinil was a nightmare. On the lowest dose, I had intense brain fog and inability to concentrate. My hair fell out in literal handfuls. I had some tics in the form of twitching in my hands face, eyes and neck. My speech was often stuttered, and sometimes slurred. My asthma intensified, I would feel nauseous and my side effects would cause me to become panicked.

 

Next was Dexamphetamine. It was okay. Just okay. It never really resolved my sleepiness. It was like my body was awake but no-one was home. My dose was gradually brought up to 40mg, at which point my heart rate would increase dramatically, with little in the way of symptom relief.

 

Then we were on to Ritalin. It seemed okay at first, but I experienced issues with severe crashes due to the short acting nature.

 

As a result, we moved on to Ritalin LA. This was extremely expensive, and I'm extremely grateful to my specialist for petitioning the hospital to cover most of the expense of the medication for me. Unfortunately, this medication didn't work out. It was like the opposite of the Dexamphetamine. My brain was wide awake, but my body was tired, so I couldn't physically do anything. I would desperately need to nap, but my brain would refuse to turn off. This caused me to become irritable and angry at the tiniest things.

 

This didn't leave much in the way of anything to try. Vyvanse wasn't likely to work, as Dexamphetamine barely helped. And I was terrified of trying Armodafinil due to all the side effects I experienced with Modafinil. There are some "off-label" treatments, but none are well tested and can have some serious effects on the body, and the potential benefit just doesn't outweigh the very possible risks.

 

In the end, I chose to go for the Armodafinil, on the grounds that I could have someone to contact at short notice if I had adverse reactions. I've been on this for a while, and I'm on the maximum dose. The only negative effect I've got from the ones I had with Modafinil is the hair loss. I'm awake more often. I still don't have much energy though. But it's nice to be conscious and actually experiencing life a bit more than I was.

 

That's all we have legally approved by the TGA in Australia. There is one more option available called Xyrem, but you have to jump through legal hoops just to get it, and I'm told it will run about $20,000 per year for treatment. That's more than I get in 18 months on welfare.

 

There are several other medications in the US and Europe, such as Sunosi, Wakix and ritanserin that we still don't have here. Some of these other options have been used as frontline treatment for decades overseas, but because there isn't any major funding or awareness in Australia outside our very small community, we are stuck using outdated medications as a band-aid solution.

 

Life often feels like it's not worth living, and if all available treatments don't work for you, you're thrown to the wolves.

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