Narcoleptics... where are you?

[Ryan Westwood]

I'm interested in talking with other people who have been diagnosed with narcolepsy because I have been recently diagnosed (thankfully I can classify my sleeping for days on end now) and would really like any advice, support, or resources to help me manage it (now that I know what it is). If you're in your 20's and/or have been recently diagnosed as well, I would be particularly interested in hearing from you (I'm 23, and have been noticeably struggling with sleep since a little before high school). Again, if anyone with any experience (personal or otherwise) with narcolepsy would reply, I'd be more than grateful, and would appreciate anything that you may be able to offer... Thank you in advance!

[Wake Up Narcolepsy]

Hey Ryan,

My name is Kevin, I am 31 and was diagnosed with Narcolepsy 5 years ago. My experience is more representative of narcolpsy without cataplexity (but I do have a head drop or knee buckle know and then)

Managing the disease is different for each narcolepsy patient, my personal experience has been to take the naps, utilize the medication available, and try to stay positive with my current condition, it can be a challenge though especially when narcolepsy presents with cataplexity, leading to even further challenges to over come. However new medications like Xyrem have helped with this patient type.

SIx months ago I started a non-profit foundation, Wake Up Narcolepsy, www.wakeupnarcolepsy.org, our purpose is promote education and awareness about narcolepsy through charitable fund raising events. We recently donated 7,500.00 to Harvard' narcolepsy clinical research program.

Good luck, and feel free to stay in touch.

Kevin

[Stephanie Warden]

My life would have been TREMENDOUSLY easier if someone would have picked up on my narcolepsy earlier. Everybody, parents, teachers, professors; they all thought I was just lazy. If I suddenly lost controll of the muscles in my hand during a lesson (I hope I'm not the only narco that does that) I would be accused of cheating by copying other's notes after class or of just being a smartass to the teacher. Even when my aunt was one of my teachers, she thought those things, although I always did my best to overcompensate and win win win whenever I could.

Before I knew it had a name, I was convinced by everyone else that I was just a hypochondriac. Suddenly, every disease I had was just me being a hypochondriac. Now, I am not exagerating, I get so nervous when I go to a doctor that they will not believe me when I tell them my symptoms, my tachacardyia becomes worse.

I wouldn't say it has ruined my life, but it has led me down many not so good paths. Addictions to tranqs, sleeping pills, and a brief romance with vodka which quickly soured. I severely embarrassed myself in college several times, actually snorting myself awake in the middle of a very respected historian's class. He was a great professor though, and did not throw me out. Same things happened in Lit and Spanish classes, hpwever, although I did not know I had narcolepsy at the time, they took more pity than I deserved on me to allow me to keep up in classes, even if my assignments were not always on time. Now that I have the attention of at least three doctors (screeching screaming crying pleading wheel gets the grease, you know) working on me, it's getting easier. I can drive again, though I scare myself sometimes. And I still fall asleep in the middle of conversations at work, much to the delight of my coworkers. It's not funny to me, though.

Have you found something that works? My doctor gave me Nuvigil to stay awake and functioning during the day so I can work, but I still do not sleep at night like I should. Nor have I found a way to combat the loss of muscle controll, which people tend to shrug off as a stupid joke while I drop boxes and fall to the floor from my buckling knees.

Narcos Unite! We are people too! Just not people who fit perfectly into the 9-5 world society has constructed for us.
Bless You For Starting This Topic!

[Kelly P]

Hey ryan ! im 26 and I was diagnosed with narcolepsy 2 yrs. ago...although i always had problems waking up in the morning...my sisters hated me b/c my alarm would go off for an hour and id still be fast asleep! Problems really started affecting me in college and that's when i first went to see a dr. Tried puttin me on anti-depressants they didnt work until he finally gave me adderall which worked! (well, then it did) After college he wouldnt prescribe them to me, dont ask why b/c i dunno! Again the problems started! Finally i went for my sleep study. Narcolepsy! So ..here I am today still taking the same adderall and its not working. Im struggling more than ever. everyday. Struggle to wake up in the a.m, struggle staying awake and getting thru my day, and then more struggling. im just exhausted from when i "wake up" to when i go to bed. sounds funny lol. its great talking to others with narcolepsy b/c everyone else doesnt believe me, or thinks im lazy, or just thinks its like everyone else (the 12-1 time when everyone gets a lil drowsy at work) ... they really dont get it. they dont understand. its not the same. i take my pills (oh, i take provigil now too) drink a medium coffee in the a.m then red bull after, then another red bull, and then maybe another coffee. Im sorry but any ":normal" person would be sugar/hyperactivity over-load if they had that much caffeine/sugar!!! theyd be bouncin off the walls into the moon, or have a heart attack. Anyways, does nuthin for me, im still exhausted...and i can still fall asleep in less than 2 min!!! Any support you need, you can talk to me... b/c I need support too!!! it's better talkin w/someone who knows whats goin on, gets it, and is going thru the same shit. advice, i really dont have any. I may have some resources for ya, depends what youre lookin for! lol. i guess if yad like, my email is [e-mail] ...feel free to send me an email to talk, bitch, complain, share stories, whatever... that goes for anyone too. Have a good nite sleep everyone lol =)

[Stephanie Warden]

Do you also have trouble falling asleep at night? I find that even though I take my nuvigil every morning that it fails to keep me up, but when I lay down to go to sleep, nothing happens. I have sleep apnea too, so I use the mask, which is supposed to help with the embarrassing "drop-offs" during the day. Sorry, but no. And I don't get to use the stimulants, like coffee, for other medical reasons, so I know it isn't that keeping me up. All three of you, do you have stuff like this? And what about this: What was your most embarrassing narcoleptic episode?

[Jared]

I've gotten tremendous support from the Narcolepsy Network and http://www.talkaboutsleep.com (I'm DozyDayDreamer, but typically just lurk). There are tons of online resources available, and even a pretty awesome book that helped me quite a bit. NARNET conferences are also very helpful too. Also the N-list has been interesting on occasion. I also recommend joining the online chats at TAS. It's great to talk with a live person.

I've been living with Narcolepsy since 1991, when I was kicked out of the military for it. Now I'm not able to work, so I spend a lot of time with my family.

I've tried every medication except Nuvigil (even Xyrem). Some work better than others, but none worked for very long. In the end, I learned to just take naps as needed and try to minimize stimulant use.

[Maria Ceresia]

Can anyone help me find a good Dr. and support group in St. Louis MO. I was diagnosed with narcolepsy 6 months ago at the age of 44... Finally!!! My symptoms started at about age 11. I do like my Dr. but I would still like to learn more. Also, any advise with insurance claims. I was on short term disability, transitioning to long term. Now the long term claim people are saying they need more proof. What do I do? I'm single and at the end of my rope. I've lost my "Great Job" that I loved, and I've lost my beautiful home. Now my insurance! I'm living in my best friends basement (thankfully) I know she tries to understand the illness, but I can tell she doesn't. My children don't really even understand and they lived it with me. I never attended one Saturday morning softball game. I couldn't. My husband at the time was a trooper about it though... he always let me sleep in. But it still kills me that I missed so much because I was to sleeping to participate in life. Please anyone - everyone...Help!! I can't do this alone anymore!!

Thank you
Maria

[Sarah Hamilton]

I was diagnosed about two years ago. I was suffering from strange episodes when I laughed and my doctor sent me first of all to an epilepsy clinic. It was there that the doctor mentioned cataplexy which I had never heard of, after that I was sent to a neurologist who conducted tests and through the presence of cataplexy, diagnosed me with narcolepsy. I do suffer from excessive sleepiness but can control it to an extent. It's the cataplexy that really gets me down and am struggling with the medication. I worry that its going to get worse and I also worry that people think i'm making it up. I suppose it's nice (in a weird way) to know that i'm not alone with this strange condition!!

[wYNNE sANTOS-cUCALON]

I AM Struggling now as my Medco from work, health did a (got cha) and surprised me and doc and said no more, though diagnosed, they to date still deny my life altering med,s and I a feel like its time to sleep for life, as it was prior to this, seems so cruel, for them to do this= still not telling me what they need next but always denied and diagnosis and papers and stuff is with doc, but medco said sorry, had to - my plan changed, a month and I was not told, and medco took me off nuvigil (cost is 15 a pill and I was taking one or 2 250 and doing super, almost drove till 5, and almost watched a movie, all this happed though after doing well on provigil for years, 3 but had had the symtoms many years prior, apparently my employer changed the rules and every doc we are asked for we submit and now my doc and I wonder what next = it has changed my life to be "useless as I was called at work right prior to leaving" to being told I am sounding so much better.

still fall asleep standing, on eliptical, ( I do want to live) have horrid pain and gut issues and docs fear I have a high risk of seizure due to an anxiety disorder and I see a very good phd for this, to try and helpme, so likely going to sleep study would be impossible as I can not stop fentenyl and seizure med and prostate meds ( found out my bladder has no feeling) and though female the prostate meds make you tired,
the issue started long before these meds, and tried tramadol for a year before fentenyl but lost 30 pounds to a risky weight of 87 pounds and 5'5. is my life over? no files to attach just want to know what others went through staying on nuvigil

I fe

[Maureen Patchett]

I was diagnosed about 3 years ago and it has been the best thing ever. I work in the sleep field and for years thought I had narcolepsy. I have had cataplexy since childhood and EDS. I napped 2 hours everyday of my life before treatment. Now I never nap and I have no more migraine headaches. If I dont take my medicine my cataplexy returns. More later.
Maureen

[Em Conway]

Ryan-

I was diagnosed with Idiopathic Hypersomnia when I was 22 (26 now). Its very similiar to narcolepsy with just a few technical differences when it comes to sleep cycles, rem, etc (in fact normally I just tell people I have narcolepsy because people at least have heard of that).

My first piece of advice, that I admittedly didn't follow, is DON'T be afraid of telling people about it. I struggled through my undergrad degree and my first year of work trying to basically hide the condition. I realize now if I had just gone to my teachers and bosses at the beginning and said "Here's this problem and here's how I need help dealing with it" I would have done so much better!

Are you treating it with medication or just lifestyle modification and conditioning?

I don't claim to have all the answers, but if you ever need a sympathetic ear from someone who's been there I'm here.

-Em.

[margaret schohn]

My son has this has had it for years school is threating to turn him into a trunacy officer. Wont believe me even though they have had a note form docotr saying he has narcolopsy they say so what. I say that means he cant stay awake cant wake him up for anything they hav known for 6 years. What can i do any ideas

[Michele Blazina]

HI My name is Michele and I was diagnosed with narcolepsy about 6 months ago and really am struggling with it. I as well need extra support I don't really know where to go or who to talk to. Its like some people don't get the whole feeling exhausted 24/7 thing. I feel like people view me as lazy and I view myself as that as well b/c I don't want to feel this way.