Thursday 3 February 2011

Acquiring a label

Last I posted, I noted my lack of energy.

The whole thing started back ... well, I suppose in around September 2009, when the symptoms first started to ramp up beyond what I could dismiss as simple depression or apathy. By January 2010, I had been through 3 doctors, each of whom told me there was nothing wrong with me, despite me sleeping 20+ hours a day, every day, and feeling increasingly unwell (sick, nauseous, faint, dizzy) when I was awake.

In April 2010, I finally found a doctor who took my issues seriously. She helped me discover my casein intolerance, which improved things somewhat - I was feeling well (if sleepy) while I was awake, and I was awake for something that was kind of normal - sleeping 14hrs a day. But the sleepiness didn't go away, no matter what I did, so I did a sleep study in August 2010. The results from that test came back, showing that my overnight sleep wasn't so much good, as pretty near medically perfect. With sleep like that, a normal adult would be full of life and energy during the daytime, not barely staying awake like I was. I was referred to a sleep physician, who after talking to me, recommended that I do a Multiple Sleep Latency Test to determine my actual level of daytime sleepiness. This is not a test that can be faked; you either go to sleep, or you don't. Your brainwaves reflect this, or they don't. You do an overnight sleep study first - to make sure it's going to be an accurate test - then during the day, you're asked to try to nap at several intervals. I did this test in December 2010. On Wednesday, I saw the doctor, and got the results of this test. He was very sympathetic. 'I can't imagine how you can live like this, it must be horrible' were his exact words. Apparently I'm a very bad case. Even for people with my disorder, it is relatively unusual to have someone who, after a full night of excellent quality sleep, can fall asleep at 8am, 10am, 11.30am, and 1pm - that last being within 30seconds of being told to try to nap.

I was given a formal diagnosis, and medication. The diagnosis is Idiopathic Hypersomnia, which is a polite way of saying 'We know you sleep far too much, but there doesn't seem to be a reason we can pin down'. I don't have narcolepsy, hormone imbalances, endocrine imbalances, sleep apnea, restless movement, or anything similar. It's a somewhat wishy-washy diagnosis, but it at least comes with medications which will alleviate the issues I experience every day. It does mean, though, that I'll be on said medications lifelong. Or at least, the parts of my life where I want to be awake. The medication is ... problematic. Highly restricted, used illegally as a recreational drug, that sort of thing. It's going to make travel interesting, that's for sure.

My overwhelming emotion is relief. Relief that there is some diagnosis at all. Relief that there's a good chance I can function like a normal person, even if it does mean taking pills for the rest of my life. Sheer joy that I will have an extra 12 hours a day of alertness.

I do worry that the side-effects of the medication might cause me issues, especially since it's prone to causing emotional issues. I am worried about the reaction of people to the exact medication I'm on. I'm worried about the paperwork I'm going to have to carry around. I'm worried that it won't work.

But for all of that, I'm glad. Glad to finally be done with the testing, glad to finally have a way forward, glad to have a chance to get my sparkle and life back.


  1. no matter how wishy-washy the diagnosis, being able to point your finger to something and say "that's the issue" and "here's a solution" is the greatest relief. The rest you will deal with, with the bounce and vigour that you're going to get back.

    Take care...

  2. Thanks for the encouragement Cherie :)

  3. I'm so glad you found a doctor who cares. Most I've come across are pill pushers who upon encountering anything slightly out of the ordinary, are completely out of their depths.

  4. tau-iota-mu-c: As we both know, I'm anything but ordinary ;) More seriously, it does seem to be that I come down with things that are rare - 2% of the population or less. So far, I think I'm up to 4 separate ongoing conditions that fit that bill, and a number of other characteristics etc that are relatively common, but not so much in combination.

    Eh, on the bright side, I'm a happy person, and I think, this time, I've finally sorted myself out.

    I'm just hoping that I don't get torpedoed by yet another mystery condition in the future, at least not for a decade or so.