I'm new here, though I've been reading the forums for a few weeks. I am frustrated with my doctor who diagnosed me with idiopathic hypersomnia and would like to present my scenario to all of you.
I'm 27 years old, and have been experiencing daytime sleepiness regularly since I was 16 or 17, and have been napping daily since I was 19 or 20. I never really thought much of this until the past couple of years since I left university and have a desk job. I always thought I was a good sleeper because I fall asleep almost instantly and can take short, refreshing naps almost anywhere.
However, in the past couple of years, I've started needing 2 - 4 naps a day instead of just one or two and I've started falling asleep involuntarily at work and in other situations. I've also experienced the need to sleep rather than just a desire in the past couple of years. I've pulled over on the bike path for a nap, for instance, to prevent myself from falling asleep while riding.
Since I was a teenager, I have been experiencing sleep paralysis and hypnagogic/hypnopompic hallucinations regularly (perhaps SP between 1 and 3 times a week and HH once a month). I had assumed this happens to everyone, but have since learned this isn't the case. I also occasionally have what I'll call "night terrors" where I hop out of bed terrified about something and need to be consoled before going back to sleep. In about half of these night terrors I have only a vague recollection of that happening (in the other half I end up waking up all the way and remember the aftermath clearly).
With all of this in mind, I was referred last year to a doctor who knows about sleep disorders who then referred me to the sleep centre. I had a PSG/MSLT last week.
During the appointment with the first doctor, he asked me about cataplexy. I'm not sure if I have it, but I described how I always sit in the bench seats of booths at pubs so when I'm laughing with my friends I don't fall over when my head gets heavy. I experiencing the feeling of my jaw being heavy in some situations, particularly when I'm having sex/have an orgasm. I'm generally clumsy in social situations, particularly if I'm caught by surprise (e.g. running into a friend unexpectedly). I also had one dramatic experience of laughing that lead to me lying on the floor, unable to move until I stopped laughing (some of my muscles were still contracting involuntarily, but I couldn't move anything voluntarily except for my eyes). He seemed to think some of that might be cataplexy, might not, but was willing to investigate for narcolepsy so he sent me to the sleep centre.
The second doctor I saw was at the sleep centre. She told me I am "too thin to be a narcoleptic" when I first saw her (I am on the slim side of average), but ordered the PSG/MSLT anyway with some reluctance. I reviewed the results with her last week. I did not receive a copy of the results, but will repeat what I can remember:
Sleep latency: 5 minutes
REM onset: 260 minutes
Lower than usual percentage of REM (can't remember the distribution of the different stages of sleep)
No significant breathing events
Sleep latencies in each nap:
1: 1.0 minutes
2: 3.5 minutes
3: 3.5 minutes
4: 1.0 minutes
5: 11.9 minutes
Average: 4.2 minutes
No SOREMs observed
I was feeling pretty stressed out during the entire test. During the PSG, I was extremely itchy from the electrodes, etc. which made led me to ask the tech for suggestions on getting back to sleep after I went to the washroom. Apparently I'd been sleeping on and off during the time I thought I was awake. For the last nap on the MSLT I had lost track of the time and had run in from sitting in very bright sunlight only seconds before they plugged me into the machines and told me to go to sleep, which I think explains the longer sleep time for nap 5. I do recall dreaming during both the PSG and MSLT, including one dream in the MSLT that woke me up.
Because no SOREMs were observed and because of the long REM onset during the overnight, my doctor diagnosed me with idiopathic hypersomnia. I was surprised, particularly given that my understanding of "idiopathic" was that extensive testing would need to be done to determine there is no known cause. I didn't realize this is a diagnosis unto itself with a specific set of symptoms.
In any case, once I got home, I googled IH and found that it doesn't seem to describe me at all. I have a regular sleep time at night (7-7.5 hours), take a few short (5-15 minute), refreshing naps every day and almost never experience any sleep inertia, never mind sleep drunkenness. I sometimes wake in the morning without my alarm and if I'm still asleep when it goes off, I am up within 5 or 10 minutes. I feel I sleep easily, but I don't sleep deeply and I am frequently awakened.
I truly don't feel I have any problems with waking up, a problem that seems to be associated with idiopathic hypersomnia. I do, however, have a lot of trouble with staying awake, which seems more indicative of narcolepsy. I feel like my doctor saw my lack of SOREMs and because she didn't have a clear sense of what's actually going on, she'd call it idiopathic hypersomnia even though the rest of the symptoms don't seem to fit.
That said, I only want to figure out what's going on with my body and treat it in the most effective way possible. I am not committed to a narcolepsy diagnosis if that's not what's wrong with me.
I guess all of this was a long story to ask three things:
1. If you are presently diagnosed with narcolepsy, were you previously diagnosed with idiopathic hypersomnia?
2. If your diagnosis changed, what was the trigger?
3. If your diagnosis changed, or if it remains idiopathic hypersomnia, did it have any effect on your care and treatment?
Thankfully, I don't feel it's particularly urgent for me to have a proper diagnosis. I have no other symptoms or known health conditions, so I'm not too worried that my sleepiness is secondary to another condition. I was managing ok and holding down a job untreated with just scheduled naps and eliminating caffeine (gives me rebound sleepiness). Though the naps are inconvenient, my sleepiness is not threatening my livelihood or general health, it seems.
To my doctor's credit, she thought my sleepiness would benefit from treatment and prescribed Modafinil. The medication seems to be helping a lot so far, though I'm still trying to find a dose that doesn't make me jumpy yet lets me stay awake (this, incidentally, is another strike against the diagnosis of idiopathic hypersomnia, which apparently is not as responsive to medication as other causes of sleepiness). And though she was skeptical, she also provided a letter for my employer stating that I need nap opportunities during the day because I said naps are helpful. I am very grateful for these things which are already helping me feel a little more awake.
Thanks a bunch for reading.