- #16292 November 22, 2005 at 1:59 pm
It seems a lot of you are familiar with eachother already, but would you all be interested in posting more about yourselves so we can get to know everyone better? I can start 🙂
I live in Naperville, IL.
Work as a Facilities Coordinator for an online job hunting website (with monkeys, hint hint lol)
Recently diagnosed with N (w/o Cat or HH so far).
I like movies, music, reading, scrapbooking and photography. Oh, and now that I have energy back, I love to talk a lot lol
😀 😛 😆 🙂#105934 November 22, 2005 at 4:29 pm
I live in Eastern Washington
I work as a Production Engineer and Support Engineer at a local electronics firm
I have a degree in Computer Science
I have a wife and 2.5 children (one on the way)
I was diagnosed with Narcolepsy this year, have HH but no C or SP, and have had symptoms since sometime in my early teens
I like dating my wife, raising my kids, and my job. I think my hobbies are the same. 😀#105936 November 22, 2005 at 10:15 pm
that french galMember
I’m Anna and I’m 26 🙂
I’m from Sydney, Australia and have here pretty much my whole life.
I was diagnosed with N in September this year (no C, SP or HH as yet).
Have been to France a few times, but am definitely not from there and speak the language very poorly… French is my surname 😉
I’ve spent the last 7years getting 2 degrees (Arts/English and Law) and playing “Mum” to my sick (now deceased) grandma, younger sister and brother.
Now I’m not at uni any more, I’m just working at a law firm to save money to go travelling!
No parents, husband, kids or boyfriend – so am free to do as I please!!
I’ve travelled to Africa, UK/Europe, America/Canada and a bit of Asia (and I can’t get enough 8)#105937 November 22, 2005 at 11:19 pm
I am 41 as of last month. I have 2 kids, a girl and a boy – just turned 7 and will be 5 at Christmas. I have 2 dogs, sisters, 10 and a half and going gray faster than me.
I live in Helper, Utah which is actually 6 miles outside the middle of nowhere (as my son’s god father has declared)
I have a couple of degrees in Architecture from the University of Illinois – I tell people I slept through 7 years of college, and only you guys know I am not joking.
I have worked as a computer nerd for an architecture firm and for a book and magazine distributer. I had a job teaching AutoCAD drafting at the local community college when I moved to Utah from Illinois. (my husband teaches there and therefore the cross country move) I tried to sell real estate, emphasis on the TRIED. We bought a farm in 2000, I was diagnosed in July 2001, and I started my dog boarding (thus the login name) business at Thanksgiving 2002. Dog business is going strong, I have turned away about 20 people for this weekend, some of whom only called today. And it is a job you can do with N. The dogs don’t care about the yawning (actually is supposed to help dogs relax) and I can time taking the dogs out to play or cleaning the kennel around nap attacks.
I have been this way for as long as I can remember so I’d estimate onset around age 12. I have N with HH, but no C – knock on wood. My doctor ordered my sleep study only after I complained of being psycotically tired. It was summer 2001, and my son was 6 months old and got up every 2 hours. The doctor said, I see tired moms all the time, but you are kinda off the chart tired. Gee, that is soo nice you noticed.#105939 November 23, 2005 at 6:54 am
I’ve been on here a couple months now and know some of the others pretty well. But I always like to get to know new people.
My name is Charlie, I am 23 years old, and I live in a suburb of Minneapolis, MN. I have had the symptoms of N since I was 13 or 14, but was diagnosed about a year and a half ago. I am one of those who has all four major symptoms – EDS, SP, HH, and C. I recently attended the NN conference in Boston, where in fact I learned that my C was a lot worse than I thought it was.
I still work full-time, in fact more than full-time. I work 50 hours a week, but luckily I just got a doctor’s note restricting me to one shift only (no rotation). And the nice thing is my bosses seem to be taking it pretty well.
Anyway, I hope all of you are able to come to the NN conference next year in Dallas! Start saving now because it is SUCH a great time!#105940 November 23, 2005 at 5:50 pm
Hi, I’m Melissa and I’m also in one of the Minneapolis suburbs.
I was about to tell you all my life story, about talking evil dolls and sleep marching, but that can be a story for another day.
I believe I have always been a narcoleptic, now that I think back on it. But, just a few weeks ago, I was finally diagnosed. I’m 25 years old, married and have 2 cats. I am a career student (going on 8 years now-getting closer to an associate degree!). My experiences in N have included EDS, HH (big time-I thought I was crazy), and SP. No C yet thankfully, from what I’ve read, that’s the last thing I want to deal with!
So, it’s very nice to meet all of you and I’m looking forward to getting to know you all better!#105941 November 23, 2005 at 7:31 pm
22 years old
Married and expecting a baby boy in April
From Rhode Island#105942 November 24, 2005 at 8:35 am
51 year old male married
7 children – 4 boys and 3 girls in that order
Been like this since day one
Diagnosed 3 times in last ten years.
Medication helped me see the difference but understanding the condition has helped me live a much better life.
I believe diagnosis of Narcolepsy as soon as possible in ones life is the key to a good life. Narcolepsy symptoms are similar to bad character traits in some people. Also to adapt to life from infancy or a young age with N develops an unbalanced perception of life.
Once a PWN understands the condition the answers of why and what is explained.
Life is tough for everyone but N is a stick in the spokes of the wheel of life.
I have had a good life and it is much better now but fighting sleep off becomes depressing as you all know.#105943 November 24, 2005 at 7:52 pm
This is so COOL!
I’m going to do a cut and paste on each of you so I can keep you straight in my sleepy little head.
I’m Andrea and, well, since we’re being honest here (I’m assuming), I’m 57. Ooh, it hurts even to type that.
I live in Chandler, AZ which is a SE suburb of Phoenix. I’m originally from the Chicago area.
I’m divorced, barely coming out of that alive. But much the better for it. I have three sons. My oldest is Jim, 35, married, 3 kids, lives in Calif. My middle son took his own life when he was 18, so he lives with his Heavenly Father. My youngest is Tim, 28, married, 1 daughter, just returned from Iraq. He lives at Ft. Campbell, KY.
I live with my service dog, Olivia, a beeeutiful Golden Retriever, and 2 cats.
Was hospitalized for EDS twice as a teen, but they never found the cause. Was misdiagnosed with all KINDS of stuff through the years. Finally, back in 1993, I had an all out, down for the count Cataplexy attack, and finally had my first sleep study. Have had one more since. Two of my sons inherited N as well.
I have been on disability since 1993. Couldn’t stay awake or think straight enough to hold onto a job, whereas I was Vice President of a Direct Marketing firm at one time. Have lots of hobbies, most of which I haven’t been able to tackle as of late. Hopefully I can get back to them. I enjoy all kinds of arts and crafts, gardening, reading, and doing service projects of all kinds. Like I said, tho, it’s been a while since most of this.
Been on Dexedrine, Provigil and Ritalin. The Provigil was a real fiasco just this past week and I will NEVER take it again. I am thinking of trying Xyrem, because I definitely would like to improve the quality of my life, and be able to get back a little of what I’ve lost just over the past few years. Never knew N could be so all encompassing.
Have experienced most of the ‘letters’ – N, C, HH, RLS, SP, AB – am I leaving anything out? Getting diagnosed and actually being on this board has been a Godsend as now I know what and why so many things were happening to me.
Getting to know the members on TAS has been an incredible experience and I am grateful for every one of you. Come this January, I hope to meet my first PWN in person, and that would be Yawningdog. I can’t wait!
I have a bad habit of turning a short story into a long one. Yet all of you have been kind and not complained and I thank you.
😀#105944 November 25, 2005 at 5:11 am
My name is Jami, I’m 28 yrs old, work as an Emergency Communications Specialist (I answer 911 and dispatch Fire and EMS), live with my husband of 5 yrs (and our 2 cats, 5 snakes, and 1 lizard) near Kansas City, Missouri, and have been diagnosed w/N twice. Once 4 yrs ago by a psychiatrist after 1 yr on meds for bipolar disorder and still falling asleep at work and dragging my feet all day for no apparent reason, and again this past spring by a sleep doc who was the first doc to tell me anything about N. EDS started around age 16-17. C started at age 17. HH and SP didn’t start till this spring (the reason I found the sleep doc). My C is very mild, and I’ve only had HH and SP once. After going off of the bipolar meds and increasing my Provigil to 400 mg, I noticed a huge difference. We recently added 5-10 mg Ritalin up to 3 times/day as needed. Since going on the Provigil 4 yrs ago, I haven’t fallen asleep at work. 😀 I’m so thankful for TAS and for you guys. And I look forward to hopefully meeting everyone in Dallas. 🙂#105945 November 26, 2005 at 3:12 am
My name is Pam. I was first diagnosed with lupus and fibromyalgia with the doc always saying he couldn’t find a reason I would have either. Then 1 day when I was asking for more ambien the nurse practioner asked me why I couldn’t sleep. Well could you sleep with “ghools hanging over you”, “someone in your home”, “a paralyzed feeling when you wake up after just falling asleep” and “hearing nonexistent doorbells and phones waking you up”? The nurse excused herself and returned with the doctor who asked why I never told him these things…he never really asked and I had no idea they weren’t normal since I just thought I had really bad dreams. Of course the EDS was documented for the last 9 years so that was a given. Oh well…as it turns out a chronic lack of sleep can break down your immune system! I had even been told by a counselor that the sleep paralysis was anxiety attacks in my sleep!!! Of course now she knows they aren’t and she educated herself about narcolepsy and realizes she had all the symptoms in her record! With the Xyrem I don’t get tired during the day so it is working out so far. I am not keen on getting a sleep test and the doc says I don’t need it for the diagnosis. I am 43, married, 2 kids. Since being on Xyrem I have been able to go boating, bike riding and basically function like I expect a healthy person functions. Of course there are side effects but my husband thinks they are worth it. I have lost 20 pounds in 3 months without really trying (gained 70 pounds over the last 9 years without trying!). Sleep is amazing although I don’t even remember sleeping when taking Xyrem! If I have Cataplexy it is very mild…when I laugh really hard my vision blurs and my muscles go weak, my knee just gives out when it wants to, and when swimming I need to wear a life jacket since sometimes my muscles go weak when I jump into the water!#105946 November 26, 2005 at 6:54 am
😀 ooooo, what fun!!! I’m game!
I’m Christa, but equally go by Kissie or Kisster (nicknames, hence the screenname).
I’m 26, will be 27 in February.
I live with my boyfriend of 7 years (will be 7 the 3rd week in January) and my almost 8 year old son. Oh and my 2 dogs (6 yr old Pitbull mix and a 1-1.5 yr old Fox terrier mix), plus 2 fish. 🙂
I live in North East, Maryland and have been there for around 2 years.
I work as a Computer Operator/In-house Tech support person for a major Telecommunications company. I’ve been here for about 6.5 years. Currently I work nights, but it’s only 3 days a week and kind of works out with my condition.
I was diagnosed with N and RLS about a year ago, when I was sent by my Rheumatologist to the sleep doc. He thought I had Fibromyalgia and wanted to see if the sleep study would show it. I would have never suspected I had N, even though in hindsight I can say I’ve had symptoms almost my entire life. I was always described as a laid-back, relaxed child and was sooooooooooo hard to wake up.
I also have HH, EDS, and SP, possibly C but I’m too afraid to totally accept it. My doc strongly believes I do and have had C for some time. I used to have black outs and weakness where I could remember everything, but we always thought it was because I had low iron.
Besides having N, I also have Ehlers-Danlos Syndrome (a connective tissue disorder) and get Migraines. I though the Ehlers-Danlos was difficult to deal with, but the N has definitely been my worst enemy.
I’ve been on Provigil since dx, with dosage increases and am not responding well at all anymore. I’m supposed to get a second sleep study to hopefully give some more light into what going on, plus my doc would like more concrete basis to get me on Xyrem.
I’m also a part-time student and trying (emphasis on trying) to get a Bachelors in Psychology.#105947 November 26, 2005 at 10:21 am
I’ve started and stopped this about 50 times in the past few days. It’s finally time to get something written…
I am the luckiest man alive. Sure, I have Narcolepsy with Cataplexy (and all the other letters that can go with it as well), and I have diabetes (type 1, spontaneous), but I married (15 years now) the love of my life and have 4 wonderful children (Girl 9, Boy 7, Boy 3, Girl 6mo). At the end of the day, what more could one ask for? We live near Seattle. I work for a large software company based in Redmond, WA. Have done so for 13 years or thereabout. We have so much to be thankful for.
I’ve had N as long as I can remember. But, I didn’t know what it was for the longest time. I was officially diagnosed with it at Desert Shield (the first Gulf War), and summarily booted out of the Marine Corps after the war was over. I lived in denial about N for a very long time afterwards. I always did quite well, choosing jobs that allowed me the flexibility I needed to survive. That was until this last year when my N became much worse. I’m now on short-term-disability until I can get this back under control, if that’s possible.
It’s really nice to be able to go somewhere and interact with people who get it. Thanks for being there for me.#105948 November 26, 2005 at 11:43 am
My name is Barry. I live in Virginia and am 51 years old yesterday. I lived with this disease until 48 when I was dx. with sleep apnea and later N with c and all the things that go with it. I have had symptoms since 14 or so. Only around 45yo did symptoms become so unbearable as to cause me to seek medical help. I am a retired, disabled pharmacist believe it or not.
I am currently trying to find a medication or combo of such that will sufficiently control my eds which so interferes with my life. I am married and have 3 grandchildren, 1 grown daughter and 2 grown step-daughters. I am frustrated with the tx I have had thus far and my life is complicated with djd and alot of physical pain.
I read this board with mixed emotions. I wonder why it took so long for me to get help and how it could have saved me so so many problems in life and with my job. But, not enough time for that now.
I gain strength from you all. Thanks#105949 November 26, 2005 at 2:29 pm
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