Hello Sleepystar, sorry to hear about your diagnosis, this is a great group, very supportive.

I think it's now thought that N can be caused by a misguided autoimmune response, possibly to strep. So your body mistakenly attacks cells in the hypothalamus part of the brain destroying them as well as the strep. It can also be caused by damage to the brain from a head injury or inflammation. Oh,,,and I think some people can be genetically susceptible to N, although I don't fully understand this and the implications. It can pass from one generation to the next I think.

This is a very basic explanation, there's detailed info out there on the net. If I'm wrong on this I'm sure someone will post the correct info.

I don't know what to say regarding progression, there's kind of mixed feelings about this. It seems Dr's say once the cells are destroyed, they're destroyed, but it doesn't take into account what comes after. What does a lifetime of sleep deprivation and having to use unpleasant meds do to you? Again I'm sure there are other opinions on this.

I don't think it gets easier, you learn to adapt more.

I don't know about the C, for me it has become more of a problem.

There are meds that can help with the nightmares.

Yep, it can affect the smell, I get it all the time.

Good luck sleepystar I hope you find what you need here.

hi, i was diagnosed 3 yrs ago and sent on my way with no answers i had to learn from this site and the net, my cat went from tingling arms to falling on the floor, so you will see we are all different i wouldnt go by how others are because you may stay how you are, i had terrible HH chlomipramine has about illimimated them, good luck xx

The Stanford University Narcolepsy site is great. I understand wanting answers I went to the Narcolepsy Network Confenetion just months after my diagnosis. The possible streph trigger is one of the newest discoveries. Most like many autoimmune disorders it seems to be a varitey of factors, some genetic in at leats some PWN that all come together and result is the particular autoimmune mistake that causes N. Just from reading and talking to other PWN it seems that the course of the disease is highly variable. "Progressive" was my scariest fear at first then when I realized I had liived wth t for over 20 years, I realized there was no paticuler reason it would get worse just because I got diagnosed. With all the details, theories, meds-I just decided that the one best thing I could do was keep myself as overall healthy as possible. I take Xyrem which decreases REM sleep. It would seem that would desease your night mares. Take it one day at a time. I think I am better/less anxious now then I was when first diagnosed. For the first year I was so conscious of my body and waitng for the big "What's next"? Now if I stick to my routine I feel at least some control...and I don't get so upset when don't. ( I used to fear that bad days were the begining of a downward spiral-turns out they were just bad days.

Your note on your C being the shaky thing... struck a memory. I think, at least for now, I have a new "earlier" memory of C than my first all out-can't-move-attack. It was in gym class. One kid was yelling at me in volleyball and I got so mad I actually yelled back at him in front of everyone. I cooled off immediately, walked off the court to my friends and started laughing, but I was shaking so much! That was years before I drove home without remembering it from work (when I was 17) and when I had intimacy and my first can't-move C (also 17). INTERESTING. I never put those together.
I wonder how much further back that goes. Mom always said she thinks floppy baby syndrome was C, failure to thrive (sleep instead of eat) was N. But I couldn't remember early signs except EDS around age 12.

I did have strept/mono in 5th grade. Again my junior year of HS (with pneumonia).

C won't necessarily get worse. It's different for everyone. But you might (as many of us have) notice that you had C in different ways than you thought. My advice is to learn your triggers and get used to the sensations/emotions that can cause your attacks. Easing that stress can help with the degree of C. For me, for example, I am learning to adjust to the startle sensation that flashing/strobe lights gives and not always drop from it.

HH affects my smell, hearing and sight. I hear pop music, ice cream trucks, talking, singing, etc. I smell lots of random things. Mom used to play a game with us about suggestion when we were little. I've gotten really good at smelling things in that way... her thing was toasted marshmallow LOL

Speaking of suggestion, this is how I cope with nightmares. I don't know if all PWN can do it... but I CHOOSE to focus my early dreams (since I start experiencing them as soon as I close my eyes) on pleasant things. And I make sure that I take an active role so that I can guide my dreams. Sometimes, if I'm stressed and can't suggest myself into something nice, hubby will help paint a picture of my dream sanctuary: a small, tropical island with kitties, ferrets and palm trees. That usually helps LOL I wrote a short story for a creative writing class as a dialog exercise... I'll share that in a second on a separate topic.

Another thing my HCP did to help with the nightmares was give me Rozerem. It does help. I don't remember my dreams as often with it. It kicks in about 1/2 to an hour after I take it-- I can tell because I get floppy as my body heads to sleepy land. She says that it helps keep my sleep less fragmented and that way I won't wake up in dreams/ remember nightmares like that. I just usually remember the last dream I'm having when I wake up. Do you take any night-time sleep stuff? Some people use Xyrem. She wouldn't give me that.

I agree with pretty much everything everyone has said so far. I was dx over 2 years ago and I'm still learning how to adapt. I'm still trying to figure out a lot of the questions you have. I also am thinking I do have C, but before joining this site, I would have said that I didn't. I have weak arms, almost like there is a weight placed on them and I can't hold them up. At times I feel the same with my legs, like I'm dragging weights around and my legs are so tired. Sometimes I get so weak in the legs they give a little and I always blame it on my knees. Now, I'm thinking it's more C than anything else. I did read at a site that C usually doesn't start showing until several years after EDS. It's hard, the sites I read are close, but different on information. Some even contradict what others say. I just try to live every day one at a time. I think GOD everyday I'm here to raise my daughter and pray everyday that she doesn't have this from me.

Hi Sleepystar...I've had narcolepsy for about 25 years and I was diagnosed 21 years ago. As far as progression goes, I do not feel there has been any change. However the severity of my symptoms change with my overall health and how well I take care of myself. I've lived at both ends of the spectrum. I've gone through phases of "med rebellion" and sleeping on the couch all day, with no job and no motivation. I've also lived with a highly structured day, eating healthy and spending my free time at the gym. Even when I'm living a "healthy live" things aren't perfect. I still fall asleep sometimes or fall down when I laugh; but at least life is liveable, even fun!!
I can remember back when I was taking Dexedrine, my body would get used to a dosage and I'd have to get it adjusted. Then a year later I'd have to adjust it again. I used to ask myself "What happens when I reach the maximum safe amount?? I won't be able to get any more adjustments?? Then what??" I used to take a month or two vacation from my meds every other summer (I was in college...I don't know what I'd have done if I'd had a job) and when I started back up, the original low dose worked again. But now I take Provigil and I haven't had any adjustments for years.

You know...I can't think of many things that I've had to "change" because of my N.....maybe because I've always had it. A few things that come to mind are my career choices (gotta be on my feet) and the fact I can't drive long distances. Other than that I feel pretty normal.

Currently I'm not being medicated for my cataplexy. That's hard... My C comes on when I'm excited, mad, or laughing. And when playing sports. Unlike the N, cataplexy interferes with alot of things I want to do...but I suppose that's because its not being treated. Yeah, I really need to get back on meds for the C.

Nightmares...I used to have those frequently when I was younger. I don't have them as often now, but I still get them. I don't know if this will help but I kept a dream journal. And then I tried taking control of my nightmares. I know it sounds dumb.....how can we control the nightmare while we're sleeping?!? But I do =) My brain says, "This is starting to scare me!" Then I say to myself, "I need to change this dream" and then I do. It didn't always work at first...it takes practice. And the dream journal helped me plan "escape routes" for recurrent nightmares. We can talk priately if you want more info on the dream thing...if you can get over the fact that its sounds totally crazy =)

I wish you luck on your journey. Remember... you're not alone. So if you ever feel depressed or overwhelmed or like no one understands you, you can talk to us =)

Thank you everyone. I know that N will effect people differently but knowing that others can manage it and live a full life gives me a lot of hope.

If it's shown that strep is connected to N then I've been screwed from the get. I have had strep more times than I would ever care to count. In the past 3 years I've had it over 5 times. Once so severely I was nearly hospitalized.

I have a journal to help me try and track my triggers. It's still a work in progress. lol

I hear music all the time that's not really there, I always think someone's cell is going off lol.

My doctor perscribed Xyrem but I haven't been able to fill it yet because I can't afford it. I'm praying it'll work wonders on my EDS since I'm not able to take any stimulants during the day. AFter sleeping yesterday from 2am till 2pm up for 3 hours and back to sleep from 5pm to 8pm, I felt like a zombie. It was like neither my body or mind was ever really awake.

Thanks again everyone, you've helped so much!