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Original poster

I have Narcolepsy - Ask Me Anything

19 replies

POTC · 05/01/2023 20:21

Going through my watched threads I just found one where numerous posters believed that making excuses to disappear for half hour and randomly falling asleep were sure signs of drug addiction. I had responded on that thread to say they'd confirmed my worst fears about having narcolepsy- that people assume I'm drunk or drugged up rather than that it's symptoms of a medical condition.

There were also some who said they fall asleep randomly who quite possibly don't know they have Narcolepsy, so, in an effort to make others more aware of the condition ask me anything!

OP posts:

BettyOBarley · 05/01/2023 20:23

What age did it start at and how did it start?

How often do you have an 'episode' and does anything trigger it?

I'm asking as my son potentially has a condition which is usually always linked to narcolepsy, but he has no signs of it. (He's only 5).

Original poster

POTC · 05/01/2023 20:51

I was 16 about to turn 17, I'd been abroad with 6th form and caught flu. I just didn't seem to recover from that, went from hardly needing any sleep to dad struggling to get me up for school and falling asleep as soon as I got home. Had to give up alevels as it took over 2 years to get a diagnosis and they don't like you sleeping through lessons!

OP posts:

Original poster

POTC · 05/01/2023 20:53

I don't have Cataplexy and there is thinking that my type of Narcolepsy sort of lies dormant unless triggered, my brother and my mum have the classic slow recovery from general anaesthetic for example which I have been warned about, but they don't have full blown N.

OP posts:

Original poster

POTC · 05/01/2023 20:55

I'm guessing he has cataplexy? When I had my diagnosis it was still believed that you couldn't have one without the other but that has changed in more recent years as they get more data.

OP posts:

ShinySquirrel · 05/01/2023 20:56

How do you feel after an episode? Is it like normal sleep, and can leave you feeling refreshed, or is it draining?

I used to work with a woman who had narcolepsy and always wanted to ask.

Original poster

POTC · 05/01/2023 21:01

@ShinySquirrel I usually explain it as being like a dodgy mobile phone battery, doesn't matter how long you charge it the power still drains within a few hours! I can nap for half an hour and feel refreshed but still start to feel tired 3 hours later the same as I do after a full night sleep. When I've had sleep attacks it's just the same as planned naps after, without the planning part!

OP posts:

ShinySquirrel · 05/01/2023 21:08

That's a good analogy, thank you for answering.

Nimbostratus100 · 05/01/2023 21:10

I have had students with this condition. I always thing the day must seem incredibly short to them. WHat is your perception of time like?

Thanks for the thread

Evenstar · 05/01/2023 21:39

I am interested to hear about the slow recovery from anaesthetic, I am completely knocked out by it and it is very difficult to wake me up and I am the same with sedation.

SouthOfFrance · 05/01/2023 22:02

Thanks for starting this thread, honestly its something I've never thought about but reading some of your replies already it sounds really hard. Here are my questions:

Has anyone ever not believed you? How do you handle this?

Is there any cure? If not how do you manage it?

If you have an important event coming up is there anything you can do to try and stop it happening? Im thinking for example if it was your wedding day or something?

Have you got children? How does childbirth work, could you sleep through it? Or is that a stupid question?!

How does having this condition make you feel? Do you feel like you have a good quality of life or does it make you feel sad to be missing out sometimes?

How can friends help you? Is there anything you wish they would do to support you?

Avidnamechange · 05/01/2023 23:42

Could someone wake you up if you feel asleep? As in if you nodded off and someone nudged you awake and made you finish off something (like about to set off for a walk), can you do it, albeit tired?

Beexo · 06/01/2023 00:21

It's lovely to see another narcoleptic we are so rare! What treatment are you on? I'm on modafinil are you managing to drive?

Beexo · 06/01/2023 00:25

Evenstar · 05/01/2023 21:39

I am interested to hear about the slow recovery from anaesthetic, I am completely knocked out by it and it is very difficult to wake me up and I am the same with sedation.

Sorry for jumping in I had an op 6 weeks ago. It took me hours to properly wake up. And I was in and out until the next day. Oh my gosh though when it wore off it was the most refreshed I had ever felt in my entire life which sucked because I wasn't very mobile and in pain. I normally sleep through illnesses etc, I finally got to experience what refreshed feels like. We don't get enough restorative sleep so the GA makes you have a very deep one.

SouthOfFrance · 06/01/2023 07:35

One more question...

In 24 hours how much sleep do you usually have on average?

BettyOBarley · 07/01/2023 16:53

Oh that's really interesting thank you for replying.. yes suspected Cataplexy.

Beexo · 07/01/2023 19:36

SouthOfFrance · 06/01/2023 07:35

One more question...

In 24 hours how much sleep do you usually have on average?

Answering this when I'm medicated probably about 8 hours on my days off 10-12 hours. If I'm poorly rundown can be like 16 hours.

Beexo · 07/01/2023 19:37

Avidnamechange · 05/01/2023 23:42

Could someone wake you up if you feel asleep? As in if you nodded off and someone nudged you awake and made you finish off something (like about to set off for a walk), can you do it, albeit tired?

I get severe sleep drunkenness I can talk , be angry abrasive but I don't really remember . If I haven't taken my meds and I nap it's highly likely that no I wouldn't want to go on a walk or do the activity.

ThaliaLuxurySpa · 11/01/2023 10:26

I heard that narcolepsy can present with sleep paralysis hallucinations.

Do you experience those? If yes, how do you cope with them? It sounds very scary.

Mxflamingnoravera · 16/10/2023 08:30

I know this an old thread but I've been suffering with symptoms which look like narcolepsy but I'm nervous to go to the doctors because of not being able to drive. I drive to my job safely every day (it's 6 miles, there is no bus route).

My symptoms have come on since I've been taking gabapentin, but the research I've done suggests this drug is given FOR narcolepsy which seems odd.

I want to control it but I don't want to take anti depressants which seem like the cure all for anything not understood at the moment (including neuropathy which is why I take the gabapentin).

I always feel like a fraud for going to the doctor. It's mad that I feel like this. But last night I had such awful sleep paralysis and the day before I was unable to stay awake that I think I need to see a doctor.

If you were calling the doctor would you say it was routine or urgent?

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