Re: desperate to managing my sleep cycle. any one want to join?

[Anonymous]

cynthia, I agree with you on this point: I was prescribed sleeping pills when I first complained about my sleep issues 20 years ago (my mom had just been diagnosed with narcolepsy and she was sure I had it too). The doc (well-known and highly respected, but not a sleep specialist) told me not to come back for more. I never took it, I was afraid to. I know that sleeping pills don’t give you the kind of refreshing sleep that you need, they are only a very temporary solution and a poor one.

It’s not accurate to say that it’s an exercise of self-control either, there could be a lot more going on. With narcolepsy, we don’t have control over when we fall asleep or the type of sleep we get (it’s different than non-narcoleptics). This results in EDS (excessive daytime sleepiness) which is not under our control, among other symptoms. Even people who have sleep apnea will have trouble with alertness during the day – my husband was just diagnosed with severe sleep apnea, my mom had it, and I know others with it. I used to think, as you did, that it was just that they didn’t get enough sleep and had no motivation. But that’s not true, they have a disorder that impairs them because they stop breathing or almost stop breathing many times during the night and the brain goes into overtime trying to wake them up to breathe. As a result, they do not get a proper night’s sleep but are usually unaware of why. It shows up very clearly in a sleep study.

Anyone who has trouble sleeping and has alertness problems during the day, even someone who just has headaches when they wake up, should see their doctor and have a proper assessment, which might include a sleep study. I should have been properly diagnosed 20 years ago and I wasn’t. So you may need to be persistent. Sleep disorders and ADD can be present at the same time, as my ADD specialist told me, and as I’ve found out, now having met a few people with narcolepsy who also have ADD.

Getting by with little sleep is dangerous.

Stepping off soapbox now.

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