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#321 purpley

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Posted 27 February 2015 - 09:41 PM

Thanks Purpley.  Of course you are right - I need to advocate for myself.  I will demand the sleep study, which I know I should have done long ago if only to rule out sleep disorders.  I just seem to have lost all confidence in my own judgement - which is really not like me.


Unexplained symptoms and doctors that pooh-pooh them are a nasty combo. I've seen wonderful, highly competent people lose confidence in the face of that. It's normal because you're stuck trusting someone else who's supposed to be the "expert." Trust me, I know medicine, but I don't know cars. I hate taking the car in to be fixed because for all I know they're lying through their teeth about what I need. And if I were hearing some obnoxious sound from my car engine and took to it to five different mechanics and all of them told me it was running fine, you'd better believe that I'd start to wonder if the car was fine and I was just having auditory hallucinations!

So just go back in there imagining you have a big, tough crowd of NN members with you who have your back. ;)

#322 ffm

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Posted 28 February 2015 - 04:04 PM

Unexplained symptoms and doctors that pooh-pooh them are a nasty combo. I've seen wonderful, highly competent people lose confidence in the face of that. It's normal because you're stuck trusting someone else who's supposed to be the "expert." Trust me, I know medicine, but I don't know cars. I hate taking the car in to be fixed because for all I know they're lying through their teeth about what I need. And if I were hearing some obnoxious sound from my car engine and took to it to five different mechanics and all of them told me it was running fine, you'd better believe that I'd start to wonder if the car was fine and I was just having auditory hallucinations!

So just go back in there imagining you have a big, tough crowd of NN members with you who have your back. ;)

Will do.  Appointment on Wednesday so will report back.



#323 starfish

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Posted 12 March 2015 - 03:21 PM

Ive nearly exhausted all my options everything seems to give me allergic reactions 😭 next option is antidepressants which i dont want to take ever AGAIN bcus of past horrific experience.

#324 girlboheme

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Posted 14 April 2015 - 05:48 PM

Hi, I'm Aimee. Finally diagnosed with N w/o C yesterday.  FINALLY.  I'm 42.  I have been excessively sleepy since I was 20 after I had mono.  

 

I was a self diagnosis going in. I knew I had all symptoms other than Cataplexy.  First began experiencing Sleep Paralysis and Hypnagogic Hallucinations when I was 12. I was very embarrassed and didn't tell anyone. When I was 14 I fell asleep standing up which resulted in 9 stitches in my eyebrow where my head hit the wall.  I fought falling asleep in inappropriate places all my life. I began to become extremely sleepy after I had mono in 1991.  I had insomnia for a year and then after that my daytime sleepiness escalated. I had numerous tests but NONE of them sleep studies.  This was in the 90's.  In 1997 I fell asleep driving and totaled my car.  Two summers ago I nodded off and ran someone off the road.  I always fall into dreaming immediately, even while I'm still half awake.

 

My sleepiness at this point is so bad that I've contemplated ending my life because after 20 years of feeling half dead, sleeping my whole life away,being accused by partners of being lazy and weak, losing touch with my friends, any chances of having children and a relationship, I couldn't really imagine 20 more years in this nightmare.  My life currently consists of sleeping 14 hours a day and work. I have no life.  I can't walk to the bathroom without wanting to drop to the floor and take a quickie.  I accidentally face-planted in the snow trying to scrape my stuck car out of the snowbank last winter and literally fell asleep because I couldn't resist catching a few zzz's. I am not exaggerating, I honestly wish I were.  I take micro naps constantly.  At my desk, at the grocery store, at a stop light, while I'm walking...bad idea, shouldn't try it but I seriously can't help myself.  I've ran into walls or knocked things over at work so many times that I've lost count.  I'm past embarrassment, I don't even care anymore.  I have told my coworkers that I have this and they are very cool with me....so that's a plus.

 

So here I am.  I feel vindicated a bit considering it took 20 years and my own brain to see the signs.  But since I've been diagnosed, I found out that my cousin has it and I'll be honest with you all.  My dad had every symptom too.  And he's passed on now but I would bet all my money that he had it too.  And because I grew up watching someone sleep constantly and fall asleep eating and half standing, I think I didn't see my signs as anything out of the norm.  And lets face it.  Narcolepsy has a big stereotype.  And I didn't really see that I fit that stereo type (the cataplexy) but once I looked deeper, I realized I have everything else.  There is so much more to Narcolepsy than falling asleep in weird and dangerous places. i wish more people realized this outside of this community.  I mean, I really wish there was more awareness because I would have been diagnosed YEARS ago.  And my life would not be like this.  

 

Do I sound half mad?  I am out of my mind with exhaustion right now and I even took my first dose of 150mg of Nuvigil that proceeded to nothing for me other than make me feel like I hit a brick wall of blinding nausea and exhaustion 6 hours after taking it.  I didn't even realize I'd been awake enough to make it all worthwhile!  And I"m afraid to take it again.  Who wants to go through that at work?  Not I!

 

Anyway, there is my story(book) and I'm sure there's more to it but I'm too knackered to remember right now.  I hope I learn how to cope by learning more and using the tools around here.  Thanks for reading ;)



#325 DeathRabbit

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Posted 14 April 2015 - 05:57 PM

Congratulations on your diagnosis and finally being vindicated. Yeah, the media's portrayal of N as ppl falling asleep in mid-sentence or while standing , and never even mentioning the cataplexy causes a lot of people (and even some doctors) to not even think of diagnosing it in people. It's like the media merges cat and sleepiness into one thing where you get sudden attacks like someone flicked an off switch and put you to sleep. Also, N manifests itself in a variety of ways, and even gives some people insomnia, so that muddies the waters further. A word of caution, though, I hate to dampen your enthusiasm, but it's important to manage your expectations after diagnosis. None of the meds that exist out there are a cure for N. They only treat the symptoms. It may take you a while to find the cocktail you need, but with patience, you can find a combo that will improve your quality of life, though the feelings of hypersomnolence will never be erased completely. Good luck and welcome to the forums.



#326 wolfluvr80

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Posted 21 April 2015 - 03:53 PM

I wish I had the time to write the book thats in my head. I just spent the only fifteen minutes i had with internet trying to figure out how to start. My name is Shannon and I was diagnosed in Nov. 2014. Never knew anything about N like most. The only time was Duece Bigalow and if you've seen it you know what I mean. I just knew I wasn't right, somethings off, I feel like I'm 100 years old. I have all the symptoms and the more I read the more I find out about. times up, schools out. Till next time just wanted to say hi and thank you.

#327 girlboheme

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Posted 22 April 2015 - 11:10 AM

Hi Shannon and welcome! I didn't really know much either but this forum is helping.  The more I read about it the more I get freaked out because I am reading about people who are experiencing the same exact thing as me and I think I'm a bit in denial.  I wanted to be diagnosed with something that wouldn't last my whole life, dangit!  But I'm hopeful now and I hope you can be too.



#328 wolfluvr80

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Posted 22 April 2015 - 03:57 PM

I went to the Dr. last year because I was falling asleep everywhere, it didnt matter where or what I was doing. Driving, riding on the back of a motorcycle, standing up at a rock concert, signing the papers for our house(god knows what that woman thought I was conscious long enough to sign my name) it has gotten progressively worse over the last ten years. Was on adderall, first twenty then twenty and ten the next month, third month cut off for weed after I told the man the previous two that I smoked to sleep at night then I find out from online records he never mentioned the cataplexy which is what made me think narcolepsy to begin with. Makes me wonder if he heard anything I said. Now I'm lost more than I was before I knew what was wrong.

#329 crumples

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Posted 23 April 2015 - 12:21 PM

Shannon, you sound exactly like me. I was diagnosed Nov 2014 as well, after finally realizing that I was way more sleepy than everyone else. I too had the same vision in my head from watching Deuce Bigalow a ton of times when I was younger with my brother. It was actually my brother who jokingly said "maybe you have narcolepsy," when I fell asleep on his couch one time (one time out of many many times), and that's what prompted me to see a sleep dog. Hang in there...it's certainly not "fixable," but my doc has already helped me feel so much better than I did before. 



#330 DeathRabbit

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Posted 23 April 2015 - 01:55 PM

... and that's what prompted me to see a sleep dog...

LOL. Sorry couldn't resist. I make so many hilarious typos myself, due to fatigue/microsleeps.



#331 crumples

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Posted 23 April 2015 - 11:03 PM

LOL. Sorry couldn't resist. I make so many hilarious typos myself, due to fatigue/microsleeps.

 

Oh man, I didn't even notice that. It took me a few minutes to type this out because that made me laugh really hard. 



#332 daffodil225

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Posted 14 May 2015 - 01:54 AM

Hello, I'm Rachel and I was recently diagnosed around  September  with CVID and narcolepsy. I went straight from undergrad, to a year long masters program that ends soon, and will begin work later this summer. To say the least, it has been a long year. Meeting so many new people right in the midst of this hasn't been my favorite experience. When I try to just be honest and explain to classmates I'm treated with either pity, judgment and disbelief like I'm exaggerating, or just lack of understanding. My closest friends still don't really understand why this is bit difficult and daunting for me. So I figured I'd make an account, to have a chance to talk to people who can understand first hand. 

My doctor hasn't really gone over terminology with me at all, except that my tests showed idiopathic hypersomnia with still possible narcolepsy, and she has now just labeled me narcolepsy. I'm totally unsure what qualifies as sleep attack, micro sleep,hypnagogic hallucinations, and cataplexy. 

 For example, I read somewhere that double vision can be a sign of cataplexy but others said it's not? (I get extreme double vision and begin to feel extremely sleepy, I'm conscious and can hear but if you asked me to repeat something back, no way I could. This also happens when I see color changes, or colored blobs.) I had a doctor who said I just got "grey outs" I could hear just fine, but suddenly my vision would be tunnel or like covered in a thick mist, and I'd tend to fall to my knees or have to grab hold of something. Always stayed conscious and never last more than a few seconds, now I wonder if this is somehow related

I read somewhere else that cataplexy can make the person then feel the extreme sleepiness. So how can you tell if your eyes and head just dropped from the sleep attack or cataplexy? 

 

So hear's to looking forward to getting to talk to people going through the same questions and people who already have gone through it and came out the other side :)



#333 crumples

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Posted 14 May 2015 - 11:26 AM

Hi Rachel,

 

I'm relatively new to all of this too, but I've found that through talking to people on these boards, talking to my doctor, and paying close attention to my body, I am getting better and better at recognizing my cataplexy and its triggers, as well as differentiating between sleep attacks, microsleeps, and recognizing HH. 

 

Cataplexy does make me feel sleepy usually, but the big way to tell the difference (for me) is the trigger. Cataplexy is usually triggered by emotion (nervousness, anger, laughter are big ones for me), and I feel it in my muscles, then I get sleepy afterward, whereas with a sleep attack, I just feel an overwhelming desire to sleep, and more often than not, I find myself waking up and saying "dang it! when did I fall asleep?"



#334 daffodil225

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Posted 16 May 2015 - 06:44 AM

It's been rather confusing me, especially since it's my neurologist (who I've been seen for years due to extreme chronic migraines) has been the one dealing with all of it. While she is a beyond fantastic doctor, and I have confidence in her treatment plans, I also kinda feel like she's a little unfamiliar with all the little extra stuff. 

 

 I'll be seeing my doctor again once the school year is over, but I realized I have no idea if she thinks I have cataplexy or not. 
Interesting, it doesn't always have to be full body though, right? Have you heard at all of just high stress being a trigger? I don't want to look for symptoms if they aren't there, but it all still seems so similar to me.Like you mentioned, feeling it in your muscles, does it sometimes just feel like totally draining weakness and you simply can't will your body to move? Trying to sort out if some of my weird pre-sleep attack stuff is actually possible cataplexy and what is just the natural progression of fighting the sleep 



#335 crumples

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Posted 20 May 2015 - 01:36 PM

I also kinda feel like she's a little unfamiliar with all the little extra stuff. 

 

Interesting, it doesn't always have to be full body though, right? Have you heard at all of just high stress being a trigger? I don't want to look for symptoms if they aren't there, but it all still seems so similar to me.Like you mentioned, feeling it in your muscles, does it sometimes just feel like totally draining weakness and you simply can't will your body to move? Trying to sort out if some of my weird pre-sleep attack stuff is actually possible cataplexy and what is just the natural progression of fighting the sleep 

 

I feel like all doctors are a little unfamiliar with cataplexy, but it's a strange thing.

 

It's not always full body for me. Sometimes I just feel it in my hands, arms, legs, face, or any combination of those. It's difficult to describe, sometimes it's just super butterfingers and I get frustrated (which only makes it worse) because it feels like my hands just will not work. Sometimes my knees just buckle. When I laugh really hard I crumple down slowly (hence my name  :) ), or, if I can grab onto something, I'll just kind-of dip down. High stress and nervousness makes me feel "jello-y" and shaky, almost as if there's like a toilet flusher handle thing on my head and someone just hit it and flushed all the energy out of me. When I'm startled, I guess I feel a quick "prickly" kind-of feeling before the weakness. If you feel like you can't will your body when you're really sleepy, that might be sleep inertia (google it). But, as we learn here, we all have different experiences, and different ways to describe them, so it's definitely best to write down your observations and talk to your doctor about it.