Really need help/advice

[K90]

Hi everyone. This is my first post so I'll introduce myself a bit. My name is Kelsey and I am 24 years old from Canada!

So, there have been times in the past where I thought I might have narcolepsy but I never really pursued it as it really didn't interfere with my life that much.
I've always fallen asleep fast, can fall asleep anywhere (not that I generally do) and such.

Well, then a couple of weeks ago, I guess I kept nodding off in class and when I went to get up at the end of class to leave, I couldn't. I could move but I couldn't get up, I just felt so dizzy and like I was half asleep. This kind of episode has happened a handful of times in the past but that set me off. I felt "out of it", like I was constantly in a dream. Now I just assume that that is due to sleep depravation for the narcolepsy. I was watching a movie with my dad a couple of Friday nights ago and kept nodding off and am convinced that that's a sign too.

I've been obsessively googling narcolepsy, even found a forum and read that for two hours straight and convinced myself that this is what I have. I'm convinced that I have "micro sleeps". I figure that I must have always had it and now it's getting worse.

I posted on the forum, saying my symptoms and someone commented back saying that I needed a sleep study because I am severely sleep deprived and that if my doctor doesn't refer me for one, to ask them whether that want to wait until I have a micro sleep while driving.

So now I am terrified to drive or do anything, even though I don't even know for sure if I have ever had a micro sleep. I am scared that I might have one of these micro sleeps at any time. I was in class the other day and I must have lost focus because I missed what the prof was saying, until he said class was over. I fretted over that for hours thinking that it was a micro sleep.
I am paralyzed with fear, really.
Over the last few nights, I've been waking up every couple of hours and I read that that's a symptom of narcolepsy so that's further fuelling the fire.I wake up in the morning and panic/obsess over having narcolepsy. I have been to three doctors in the past few weeks and they all tell me that no, it's not narcolepsy but then someone on the forum told me that general practitioners are not qualified to diagnose it so now I am doubting them.

I am losing my mind, I am so freaked out over this. I am a university student and can't focus on anything, am missing so many classes. I constantly feel dizzy, tired and "out of it" like I am in a dream and I attribute that to the fact that I have narcolepsy. I don't know if I am actually sleepy, tired or just dizzy from anxiety.

I don't know where else to turn. My anxiety about this is taking over and I feel smothered. I am in a constant panic and again, am terrified to drive.

Any help or advice would be so appreciated. One of the doctors did refer me for a sleep study, but not because she thinks that I have narcolepsy. She also referred me to a psychiatrist but I have to wait months to see him. I really need help now.
I should mention that before this started, I had the same fear about having bed bugs, for no apparent reason. i was constantly checking myself for bites, checking my bed, etc etc. Maintenance even came to check and they said they didn't find anything but I still doubted them. So anxiety has been a big thing for me but I am convinced this time that these are real symptoms.

Thanks all!

[K90]

Anyone?? Any advice would be greatly appreciated!!

[Iblametheparents]

When I started reading this I thought it sounded a bit like a conversion reaction, or like a fugue state. I'm not sure how you'd like to be advised. It's difficult because we're not meant to give one another medical advice. All I can safely say is anxiety causes so many weird and not so wonderful symptoms. How about keeping a diary of your symptoms and trying to identify a pattern?

[angrry]

hi Kelsey...sorry you didnt get any responses...I posted a while ago too and didnt get a response until today as well, so I know how depressing that can be..Unfortunately I don't know anything about narcolepsy..I do think you should stop googling though and see your doctor again..really stress badly this is affecting your life...I really hope you can get to the bottom of this and get back to normal quickly

[FeelLikeNeo]

Hey. I hope you haven't disappeared from this forum (unless you've got better!) and you come back.

Narcolepsy is rare, affecting less than 1% of people (meaning about 99.5% of people don't have it). It's usually first seen in children or young adults. It's also usually noticed by other people before the sufferer. Most people with it go undiagnosed.

To me, your symptoms sound like classic anxiety and being a young adult. I've been there (am there!) with ALS (don't google it!). The problem which you identify, because you're smart, is how do you tell the difference? Is being dizzy and out of it because of your anxiety or your non-existent illness? It's a hard call.

I think of it in probabilities. What's the probability of having narcolepsy? Pretty damn small. Very small at this point.

What's the probability of this being down to anxiety, a condition which you know you suffer from? Well...

We can't tell you that you certainly don't have it. In fact, doctors will struggle to. You can't just run a test or a scan. It's one of those that's diagnosed by excluding other causes (causes which are *way* more likely, by the way).

Look. You probably - almost certainly - don't have it. Just chill. Have a drink and a bath.

From another 23 year old University student who has all of your symptoms and is worried about another more unlikely disease.

[Iblametheparents]

I thought ALS was more a disease of older people fwiw.

[K90]

Hey, thank you all so much for all of your replies! It is reassuring to know that there are people going through the same thing!
FeelLikeNeo, thanks for your awesome long post! It feels great to not feel so alone.

I think the thing that is worrying me now is the amount that I am sleeping, and today I lay down for a quick nap and was dreaming. I was sleeping I think but really lightly and woke up a couple of times and then went back into dreams. But they weren't like, vivd, story dreams. Just kind of like, visions or thoughts in my head. Not hallucinations either. Then I googled it, and read that you should never dream while napping (it was a really short nap) and that that's another sign of narcolepsy soooo, I started freaking again.
But then, I met one of my good friends and a couple hours and was fine. I still had the thought in the back of my head but felt fine and had fun hanging out.
Now that she's left, I'm feeling the panic start to creep in again and I feel like my head is spinning and I am feeling like I am in a dream again. The cycle continues.

[K90]

This morning I was back to panicking about narcolepsy. I just can't shake it.
I woke up at around 7 AM, not having slept too well. Then I fell back asleep for about 20 mins just before I went to class. I drifted in and out of sleep in that time but I was dreaming.. not real vivid dreams just like thoughts and images. I read that you should never dream during naps and that it is a sign of narcolepsy so that set me off again,
I felt okay-ish for the rest of the day but when I was sitting in class and then talking to someone later, I felt weird, kind of like I was lapsing into a dream. I am freaking out that I am just going to fall asleep randomly!
Ugh! Anyone ever experience anything like these things?

[frosty2901]

sorry I haven't had any experience of this but I will give you one bit of advice lease try to stay away from google it doesn't help it makes things worse infact I can tell you that learning about a new symptom of your suspected illness makes you experience that symptom I have had first hand experience of that one.
what are you hoping for and where will it stop. its the same with all health anxiety sufferers you go to a doctor get told that your fine but you don't believe them and want a second or third opinion. I think what you need to do is forget all about your suspicions I know easier said than done but the more you think about it the more fuel you give it. get your self into a proper routine of going to bed at a certain time try listening to some guided meditation and make sure you try to get a full nights sleep for at least a few days. lack of sleep is a big cause of anxiety and panic to worsen.

[K90]

Thank you frosty! I totally agree that I need to not think about it.
Yesterday was a good day.. I had strange spells (like I was dreaming) but then my friend and I studied in the library until 11:00 at night and I didn't go to bed until midnight. Slept not so great. And then this morning as soon as I woke up, it started. I started panicking again about it. Does this happen to anyone? I felt fine last night, was like I probably don't have it and then this morning I am convinced that I do again. I'm so tired of this, I can't take it!

[K90]

Hey everyone. Sorry for being so annoying but I need to get this out.
Today was going fine until I was sitting in one of the buildings at the university doing work and felt really sleepy. I don't know if I nodded off or not.
Then in class, in the last 20 minutes I think I kept nodding off. When I have googled narcolepsy, they talk about "microsleep" which is when you fall asleep for a few seconds or minutes. I think this is what was happening.
I am panicked again about having narcolepsy! Yesterday was good, and so was the day before. I saw a doctor again today who said that my symptoms weren't consistent with narcolepsy but I really think that they are. She said that anxiety/depression would cause similar things like the fatigue and such. I don't know what to think.
Help! :(

[nivekc251]

Best thing to do is remain calm, and trust the doctors. Stay away from google because it will drive you crazy. I knew a man with narcolepsy and it doesnt aound like you have it. I'm not going to go into details because your anxiety will only convince yourself that you have them. You may have some sort of vitamin deficiency. Keep your head up ull be ok ^^

[K90]

Thanks, nivekc!
I am trying to stay off Google and the forum that I found.
I just have this feeling of being so out of it, kind of like I am in a dream, and like the lights are so bright. I know this sounds odd but that's how I describe it. Anyone else feel this way? I'm still stressing about the narcolepsy thing! Ugh.

---------- Post added at 15:59 ---------- Previous post was at 14:49 ----------

Gah, I know that I am really being annoying but this just happened.
I was sitting doing work and got really sleepy. I don't know if I nodded off but I think I kind of went into a dream and I read that that is a sure sign of narcolepsy sooo, freaking out again!