[AllyIsHopeful]

I also posted this thread in the "health" forum because I am not sure which is the most appropriate forum for this topic. I'm hoping to gain some answers, stories, advice, support, etc. from somewhere...

Does anyone have personal experience, or perhaps a relative, who suffers from narcolepsy?

I am beginning to think narcolepsy runs in my family and I am suspicious I have it. My biggest concern is: How do I go about receiving a formal diagnosis? Do I need to see a specialist? Are there any tests absolutely necessary to officially diagnose someone with narcolepsy?

I am at a loss and I am beginning to think this could be the cause of my depression and why this depression is so medication-resistant. I used to think my sleep issues were caused by depression but now I think it may be the other way around.

Any advice would be greatly appreciated.

[tinyrabbit]

I have a form of narcolepsy. Can you tell me what country you're in and I'll do my best to offer some advice?

[shabur]

You should start by seeing your GP/PCP for a checkup. He/She will be able to determine if there is something medically causing your narcolepsy. Based on what he/she finds, he/she can then refer you to a specialist.

[tinyrabbit]

Well you need to go to a check-up armed with some facts as most doctors don't really have a clue (they receive little to no training in sleep disorders).

There are indeed tests required for a diagnosis. You would usually have blood tests to rule out other causes, wear an oxygen monitor on your finger for a few nights to rule out sleep apnoea, and would then need to be referred for an overnight sleep study and multiple sleep latency test (MSLT) which tests how quickly you fall asleep in a controlled environment. You must do this test to be diagnosed.

If your sleep latency (average time to fall asleep during the test) is under five minutes, you have either idiopathic CNS hypersomnia or narcolepsy. If you go into REM on short naps, you have narcolepsy. It doesn't make that much difference in the grand scheme of things.

To get referred, I would advise you do the following:
- Fill in a copy of the Epworth Sleepiness Scale (you can easily find this online) and bring it with. It's supposed to be used as an initial indicator of whether you have a sleep disorder but doctors don't always know about it.
- Complete a sleep diary for two weeks covering when you fall asleep and wake up, how you feel when you wake up, when you have caffeine, chocolate, alcohol and anything else that might affect your sleep, and a rough idea of what you did that day. You will often need to do this before you can get a referral so may as well bring it with.
- Emphasise the following if they are true: that you have experienced excessive daytime sleepiness for more than 3 months, that you have good sleep hygiene (look this up and check you are doing it) and that it is not just healthy tiredness.

Unfortunately many people with sleep disorders find it takes on average 7 years to get a diagnosis. You would stand a much better chance of getting what you need if you do all I suggested here. You could also check out talkaboutsleep.com which has some good information and forums.

Nobody can diagnose you over the internet but can I ask exactly what makes you think you have narcolepsy? Do you often fall asleep? How is your sleep at night - is it disrupted at all and do you wake up feeling refreshed? Are you keeping a good schedule with enough time to sleep?