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Hi all im Kate - diagnosed 2 weeks ago with N w/o C after 2 psgs and an MSLT in which i had 3 SOREMS and an 8.5 minute sleep onset average. Still waiting for meds to be approved but feeling better about it all :)

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Congratulations- so glad you finally have your answer. I hope you start getting some relief.

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Hi! My name is Lindsey Lee, but I go by just Lindsey, too. I was finally diagnosed with N and C in April, just before my 19th birthday. It was amazing to finally have real words to go along with what I was feeling! I just finished my first year of college, and I am on my summer break, so I've recently been on Zyrem, almost 3 weeks now. I take 20 mg of Adderall xr and either 75 mg or 150 mg of Nuvigil, depending on how busy the day is. I also take 5 mg of Adderall ir, 3 times a day. I'm up to 3.00 2x a night of Zyrem. I live in Alabama with a whole bunch of family and an amazing group of best friends and my boyfriend. I'm so happy to be a part of the Narcolepsy Network!

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I am SleepyMarie (Marie was already taken ;) ), but please call me Marie.  I was diagnosed with narcolepsy without cataplexy in December 2004, and I also have restless legs syndrome (RLS), I wake myself up grinding my teeth (that was an interesting sleep study finding), and I have migraines periodically (e.g., none for two months and then 3 in a week).  I made it through grad school without being diagnosed, and I have a wonderful neurologist so things have been pretty well "under control" for most of the last 10 years.  Anyway, I am happy to be here among people who understand  :D  Right now I am trying to work on more natural ways to manage my symptoms and improve my quality of life, including exercising and perhaps a "natural sunlight" lamp for the winter and rainy days.   Nice to meet everyone :D

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Hi I'm Elaine.  Diagosed finally with N without C in Oct 2010.  Have had several health issues.

Been quite a roller coaster.  Anybody from BC?

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My name is Courtney. I am from NOLA but am currently living in Baton Rouge with my fiancé. I was fairly recently diagnosed with N within the past year. I wrote about it on a different post/forum. I haven't been very active on here but recently have had trouble adjusting to living with N and have found myself wishing I had someone to talk to/relate with about it so I found myself back here =)

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Hello! My name is Caroline and I'm 22. I just received my N diagnosis today and I also have cataplexy. I've been lurking in these forums for a while and it's been a great help to me in understanding what's going on with me. Was taking Adderall for ADHD, but that didn't help with the symptoms after a while and I ended up getting referred by my Psychiatrist to get tested for N.

 

With the diagnosis, I hope my quality of life won't be significantly lessened and I'm still holding onto the hope that I'll wake up one morning without N. I know it seems ridiculous to hope that, but I can't help it and I guess I'm still in the pre-acceptance stage...

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Welcome Caroline! I know the feeling. What gets me through the tough days is reminding myself how far I'd already gotten with the last 8 years of symptoms. I didn't know what it was then, but now that I do, I've got doctors and knowledge to get me even more out of life. I hope we can help you gather up some answers and push along toward a better day. :)

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My name is Aly, I've had Narcolepsy with Cataplexy since I was 10 years old but got the diagnosis when I was 18. Over the years I had to deal with being yelled at for falling asleep when it was out of my control and people constantly saying 'well if you got more sleep then you wouldn't be tired during the day'. My Cataplexy is triggered by fear/being startled, being upset, and laughing. 

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Welcome Aly!...short for Allison? That's my granddaughter's name and I've always called her alleycat. She will be 16 in January.

You must be a very strong young lady to be dealing with all this and you're just 20 now. I really hope that you're doing well and striving towards achieving your dreams. My cataplexy is triggered by exactly the same things but laughing is number one for me....I really hope that it's #1 for you too.

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My nme's Nicole--or Niks--and I've been struggling with narcolepsy with cataplexy since I was 9 or 10. I just got diagnosed this year at 20. I'm trying to get by the best I can, but between the medical bills and trying to go to school, well. A little support sounded nice. I got tired of having no one to take to about Narcolepsy! So here I am!

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Hi, I'm Spotty and I'm from Northern Ireland.  I've been suffering from what was an unknown condition for about five years now until last week when I was given an outline diagnosis of narcolepsy.  I'm now waiting to go into hospital for a full diagnosis.  I have no doubts however.  I've got 15 symptoms matching up to the outline.  To be honest I've had a helluva time with it, mostly because I suffer with other conditions too and there was some dispute over what was causing what for some time.  My doctor was able to identify a scary, extremely low, vitamin D3 cvount in May of this year and I've been medicated for that ever since but although it's taken me away from death's door aqnd I feel a little stronger it's done nothing for my sleep pattern or the hot flushes I get. 

 

I'm a disabled veteran (army) and have real physical problems to contend with as well as the mental issues which come with PTSD and as you know that affects everyone differently.  So by and large I haven't had such a great time this last five years or so. 

 

It's nice to be able to come onto a site where there are other suffers.  What I'm hoping to get here is perhaps a few helpful pointers, apart from the obvious, regarding getting to sleep.  I've got all the leaflets and am still trying to enforce a regime but it's impossible when I die for 12-15 hours every couple of days. 

 

Anyway - nice to be here and I hope to meet some really great people.  :)

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I hope you get your answers. Much of my family is in Ireland- near Abbeyfeale, Limerick.

Do you have symptoms of Cataplexy? Don't say no until you have given it thought.

You will be relieved when you have this all sorted.

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Hi! I'm crumples (not a big fan of using my real name) and I'm 25. I was officially diagnosed with hypersomnia a few weeks ago with MSLT sleep onset averaged at 5 minutes, but no REM during any of my naps. My doc believes I'm experiencing (mild) cataplexy though...so I believe it's N. But honestly, I don't care what they call it, I'm just happy to finally know that I'm not crazy and/or just lazy...that I actually am sleepier than other people. I'm also happy to have medication (Nuvigil) now, which appears to be working. I'm looking forward to discussing sleepiness (and all kinds of other stuff) with all of you...it's nice to talk to people who don't just say things like "well, of course you're sleepy...you're getting a PhD," or "maybe you should change your diet" (when I am actually a pretty healthy individual). 

 

Side note: I described my cataplexy to others as "crumpling down" when I laugh really hard (I have never completely fallen down, and it happens with other emotions too), which prompted my husband to start calling me "crumples," which I think is actually kind-of cute. It's a bit strange for me to actually have a word (cataplexy) to call it now...since for most of my life I just thought everybody crumpled when they laughed hard, and that I'd never seen it because my eyes close when I'm laughing.

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Crumples! That is the most perfect one word description of cataplexy that I've ever heard. And, it is indeed very cute. I hope that your have toted your hubby along to the Doctor's office with you. He is a witness to your crumpling....and, if he's anything like mine, he's probably the cause of a lot of your crumples.

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Crumples! That is the most perfect one word description of cataplexy that I've ever heard. And, it is indeed very cute. I hope that your have toted your hubby along to the Doctor's office with you. He is a witness to your crumpling....and, if he's anything like mine, he's probably the cause of a lot of your crumples.

 

Ferret - I don't know why...but I didn't even think about bringing my husband to my doctor visits. During the diagnosis process I was just so afraid that I wouldn't find out anything that I didn't want to drag him into it. Since my hypersomnia diagnosis I've read about other people being diagnosed with N without REM in the MSLT, but because they have cataplexy...but I figured that since my doctor hasn't seen it and I didn't have the REM in my MSLT that it wasn't definitive. But my husband has definitely seen it...and like you say, is certainly a major cause of it. Just a few days ago he was creeping toward me and I knew he was going to tickle me so I yelled out "CRUMPLE!" as a warning...which of course made us both laugh anyway, so I should have just let him tickle me. Now I fear he may never want to again :(

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Laughter is GOOD...there are just consequences for us. If you explain that to him, he'll understand and relax. As long as he's there to hug and anchor you, the cataplexy is doable.

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Hi, all! i’m K, I'm 23, and I was diagnosed with narcoleosy with cataplexy yesterday. i’ve always been a heavy sleeper and generally tired which i chalked up to panic and general anxiety disorder, but this year i’ve been sleeping 12-16 hours a day even when not anxious, tired no matter how much i slept, naps helped a bit but only for an hour, sleep drunkenness, etc, pretty standard EDS.

My MSLT and PSG were actually both clear - I don't have the exact results yet but my doctor said yesterday I showed no REM sleep in my naps (4/5, though I had 3 panic attacks during the study which kept me up for the first nap).

I'm sure I'd have an IH dx, because I used to think C was just full body freezes, but after lurking on these forums I realized otherwise. When i get shocking news or experience unexpected stress, my knees crumple - anything from being told my dog was terminally ill, to not being able to cash a check because my ID was expired, to showing up to class to an unexpected pop quiz - all have resulted in my knees/ankles going weak and I have to hold myself up or sit down or I’ll collapse. Positive emotions and laughter don’t cause this as much, but a few times over the years I’ve had the same thing happen when really excited - I remember being pulled out the pit at a My Chemical Romance concert when I was 17, for example, because my favorite song came on and my legs suddenly went out, lol. After cardio, my legs get similarly weak, even if I've been exercising regularly for months. Sometimes when excited my legs and face will get tingly.

After I told my dr this, I got the n w/ c dx. I still feel a bit skeptical, since I've always thought my collapses were panic related, but if this diagnosis gets my life-ruining EDS and brain fog treated I won't complain. My first day on an SSRI and nuvigil and I'm already weak and weepy in the way SSRIS made me go in high school, but hopefully if I stick w it until my follow up we can move on to something like xyrem.

Nice to be here, and nice to have some answers at last! (No matter how self doubting I might be, lol)

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Hi! I'm Stephanie. I'm a 33 year old single mom with a 6 year old daughter. I was dx with IH w/o long sleep or REM earlier this year. I have hypnagogic hallucinations, automatic behavior, EDS, and severe sleep attacks. I just don't have cataplexy - yet. I say yet because this has evolved so quickly that I would not be surprised if that happens one day as well, as much as I hope it does not. I am a breast cancer survivor, and it left me disabled, as I have subsequently also developed fibromyalgia, chronic fatigue syndrome, chronic migraines, peripheral neuropathy, and some other stuff. Between the depression, uncontrolled sleep attacks, and constant pain, I have no quality of life at the moment. All of my family is in East Tennessee (not that they'd be much help if they were close, as they think I'm sleepy because of pain medicine - even when I'm not on any!) Last year at Christmas, I had an attack where I didn't fall comparable sleep, but I was so sleepy I was doing the "head bob" thing. My mother actually said that if I fell asleep, I wouldn't get my Christmas present. How's that for understanding and support! My only support system is my daughter's dad, but he lives in Memphis, so it's just the two of us. My daughter's a true trooper. She does as amazing job with all of this. My sleep attacks scare her, but she has learned that I won't be asleep long, and she will usually just watch TV or play until I wake back up. We created an emergency plan, taught her to call 911 and how to go to a neighbor if needed, showed her what foods she can eat without getting in trouble in case she gets hungry, etc. I don't know what else to do. Anyway, it's nice to find a community of people that we're dealing with and can help me navigate the world of N. (Would the kids'board be a safe place for her to have an account and be able to talk to others as well, even though she's not the one with the dx?) Thanks!

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Hi everyone!

 

I have lived with Narcolepsy for 50 years according to my doctors, although it was not diagnosed until just 9 years ago. I also have RLS/PLMD, and significant sleep apnea, both well managed currently. The jury is still out on Cataplexy. I've recently started with a new accredited sleep medicine neurologist and we have not dug into the possibility to date, but will, soon. You see, for the past 7 years I have lived with a "probable" diagnosis and was treated for early Parkinson's Disease. That has recently been overturned and medication adjustments are currently underway. Once that is all completed, we'll access muscle weaknesses and movement issues from a perspective of narcolepsy and see how things "fall", pun intended. :P

 

I look forward to interacting with other PWN here on these boards, giving and receiving encouragement, educational/resource leads, and sharing a sense of community . . . you see, like many of you, due to narcolepsy I AM pretty much alone [oops . . . okay, now that I've picked my sandwich up out off the floor  :blush: . . . ] when it comes to understanding this life, and as many have expressed on these boards, because of the difficulty this life causes in many settings, work, community, friends, and even family.

 

Now I'm not sure if I'm making sense or not, so for the time being . . . HI!

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I was given my date for the sleep centre today: 8th January.  There's no overnighting, they're going to equip me with something to bring home with me the same as they did with sleep apnoea.   At least I've got something to look forward to now.  Three days without sleep so far this week, I'm hoping tonight I can close my eyes and drift away. 

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I am so with you on the insomnia. I'll look at the clock, finally tired at 4:30am or so and decide it's not worth not worth going to bed because I have to get up at 5:30am to get my daughter up for school, and I'm not gonna hear the alarms if I go to bed then. So, it's an all-nighter, and there's always too much to do during the day, so a nap isn't gonna happen. Ah, what a life!

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It hits me in waves.  I didn't sleep for three nights, except for a couple of hours on the first of the trio.  This happens regularly, then I fall asleep for periods of between 20 to 40 hours.  Often with a two or three hour period of wakefulness in between.  I try to look for a pattern but I can't find it.  Sometimes I'm only awake for 24 or 48 hours; sometimes, like this week, it's for 72 hours - that's been the longest to date.  When I do wake after these enforced sleep periods I feel very weak and unwell for up to six or seven hours. 

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