Share Your Journey | Taking a Stand for a Proper Diagnosis

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I have always been a person who could not get enough sleep. Regardless of how long I slept—13 or 14 hours a night was commonplace—I still never felt refreshed upon waking.

My teenage years were tough. My school attendance record was appalling, but I could never bring myself to give “tiredness” as a reason, so I used to invent headaches, stomach pains, sickness, etc., as a way to skip school. I guess I was worried that saying I was too tired to go to school would be laughed at.

Thankfully I was a “naturally bright child,” so I left school with very good grades. This enabled me to follow my ambition of working in the financial markets in the city of London. I soon found that working for a living and being constantly tired didn’t mix well. I struggled. Big time. For years, my life literally consisted of getting up (which was a challenge in itself), going to work, coming home, and going straight to bed. Somehow I managed to progress through the ranks, and, in my early 20s, I became a trader. It was a high-pressure job, but I knew that my increasing fatigue wasn’t being caused by my occupation. I often slept in the restroom during my lunch break, and it got to the point where, with my boss’s permission, I would curl up under my desk for a nap several times a day. Even though my boss was understanding, she insisted I seek medical help. And that is where the real struggles began.

Although a fantastic concept, the UK’s free National Health Service isn’t ideal when it comes to ailments that don’t fit neatly into a particular box. Within the space of a year, I probably saw my general practitioner 10 or 11 times. Each time, I was made to feel like I was wasting his time, and I would leave his office with a different suggestion: no caffeine after 4 pm, no exercise (I wish that would have been possible!) after 5 pm, a little exercise before bed, a hot bedroom, a cold bedroom, lavender oil on my pillow, blackout blinds, a change of diet, vitamins, relaxation tapes, yoga, turn my bed so it faced a southerly direction. The list was endless.

On one such visit, in desperation, I physically refused to leave, saying that either my doctor had to refer me to a specialist (although, at the time, I had absolutely no idea what kind of specialist I would need to see) or he would need to call the police to have me removed. Thankfully, he gave me a referral to a narcolepsy clinic.

Although I knew I didn’t have narcolepsy, I was relieved that I had now been placed into the “system.” Having waited over 6 months for this consultation (another downside to free healthcare is the waiting times), I was told less than a minute into the appointment that I didn’t have narcolepsy and that there was nothing the doctor could do to help me. I cried. And I believe it was only because of my visible distress that he said he would do me a “favor” and ask a friend of his (who was a specialist in sleep and respiratory conditions) to see me.

By the time I had my first sleep study, I was 27 years old. After the study, I was told that I had idiopathic hypersomnia. I cried again, this time out of relief that there was actually something “officially” wrong with me and that it wasn’t “normal” to be feeling like I had for so many years. I was prescribed modafinil, and, for the first time in my life, I experienced what it was like to be “normal.” I used to think it was amazing to be able to go to work, be productive, and then be able to go out in the evening, too. But, of course, for everyone else, this was just life.

About a year later, the continual tiredness began to creep slowly back in. I had become tolerant to that drug. I was then put on methylphenidate. Once again, I experienced what it was like to be alive. After a few years (with regular increases of dosage), this drug also started to be less effective. I was then prescribed dexamphetamine. It became clear that, despite being on the maximum dose, this drug didn’t work as well as the methylphenidate I had recently been prescribed. So, I returned to that. I was acutely aware that I was now on the “best of a bad bunch” and that l was unlikely to return to a normal active life for some time, if ever.

The methylphenidate slowly became less and less effective. I was put back on modafinil but suffered horrendous side effects. I moved back to, and I’m currently on, dexamphetamine. This also has little effect but is better than nothing.

I long to return to the life, a life I experienced in my late 20s whilst on modafinil for the first time. I am now 37, and, during my adulthood, I can honestly say I have only “lived” for two, maybe three, of those years. My specialist has said I have exhausted all drugs currently allowed for IH in the UK. I have mentioned flumazenil and clarithromycin but was told these weren’t currently an option.

Life is short enough as it, and thus far I feel I’ve been robbed of most of it. I truly hope further research, better medications, or, ideally, a cure is found for this awful illness soon.

B.H.- UK
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