214 replies to this topic

[MandyG]

hello

I hope this is the right place

my name is Mandy and I am 27 and married to Gary. he was diagnosed with narcolepsy and cataplexy in June 2009 after a long hard 3 years of not being listened to. They claimed he had brain tumours/epilepsy/chronic fatigue syndrome.

I just really needed to join a group so I could chat to other people with this horrid condition. My husband is hardly on the computer. I have to do all the research etc lol

anyway - we live in kirkcaldy, scotland, and have 3 daughters - all have the same medical condition as me - ehlers danlos syndrome type 3 - and I am due our first boy in january. he will be our last child (getting sterilised) as we have way to much to concentrate on. We would have loved more kids, but we never expected to have so many medical problems.

we have accepted the narcolepsy etc and try to live life as well as we can.

hope to meet some lovely people here

xxxx

[kimmie]

Hi everybody my name is kim I was dignosed with n with cataplexy and sleep apnea. about 3 months ago. still trying to get used to all my meds. And trying to understand why so many dr. told me it was just all in my head. I know now that it isn't I am still really mad at some of these dr. anyways I have two small kids and trying to make up for all the time I lost with them. I have a wonderful husband who has stuck by me. I am 29 and have been sick for 15 or so years just the past 5 years I just kept getting worse and worse and the dr.s just wouldn't help me. hope to hear from you soon. kimmie

[sleepybee]

Hi Kimmie:

I'm betting that everyone here can list several times they've had the same experience of being "blown off" by a doctor in the manner you've described. It's certainly happened to me. I know it's extremely hard, but try, try, try not to carry that anger towards the other doctors, even though they hurt you. Try to rejoice in the fact that you've gotten the diagnosis now, and you were right all along.

If you want, write a letter to one or more of the doctors that gave you the "all in the mind" speech. Include a reference to the physician who finally diagnosed you correctly, copies of test results (seeing a solid test result on paper can do a lot to get through a doc's brain) if you want, and a polite letter saying that you just wanted to fill them in on the resolution. At the very least, maybe they won't blow off the next person like you.

[FrozenTrout]

Hi, I'm Patrick, age 24. I was first diagnosed with narcolepsy in 1999 after a slew of unsuccessful tests and treatments. I thankfully don't have sleep attacks (though I did when I was younger) or cataplexy, but do have serious insomnia and EDS and their related issues (memory, etc). I was actually involved in the first drug trials of Xyrem and Provigil, but the two combined had rather unpleasant side effects, so I stopped both. In the following years, I've tried just about everything out there, with little to no success. A couple years ago I started again on Xyrem, and it's been the greatest help so far. Sleep still isn't perfect, but I don't go for days without sleeping, and I wake up less exhausted. I'm currently on Adderall in the morning, and it definitely helps, though I'm still rather out of it most of the time. I also developed sleep apnea in the past few years, and started using a BiPAP two or three months ago; so far, I'm still not used to it, and I'm much worse off than I am without it. As an experiment, I went for a few nights without the BiPAP, and I slept better and was more awake during the day. With it, I can barely do one thing (go out to eat, or to a doctor's appointment) and I'm drained for the rest for the rest of the day. The doctor says just to keep at it until I get adjusted to it, so we'll see how it goes; as it is now, I can't work on my online college course, or even hang out with friends most of the time, so it's been a rather miserable few months, and who knows how long it will take. But I just gotta keep going, and hope things will work out.

[dreamiestgirlever]

hello. my name is laura + i was diagnosed w narcolepsy (w/o cataplexy) in 1995 at age 26 during the modafinil drug trials. i believe symptoms truly began in high school but i really absolutely knew something was wrong in college... i fell asleep driving on every 2 hour trip home to visit my family. this cannot be normal i thought but just what was wrong remained the question for many more years. i struggled + struggled through college + was miserable alot of the time. my grades kept dropping + i was kicked out of the honors program. i did eventually graduate in 5 years w a bsba in finance + international business. i do not know how.

depression was the first thought + eventually became the truth as i tried + failed at things again + again without knowing why. i had always been a rather melancholy person but true clincial drepression set in because i was functioning so terribly for so long. i was not sleeping because i was depressed. i was depressed because i was so sleepy. i was put on antidepressants which really helped my outlook but the sleepiness continued + i felt as if i was withering again. now i was in the work world. a whole new set of challenges - corporate rules.

diagnosis truly came by fate. i was struggling to keep a part time bank job + had no health insurance. i just happened to be watching the 12noon local news which i never did + they reported on a man who had been driving on I-71, fell asleep at the wheel, hit + killed another, + THEN was diagnosed with narcolepsy. they listed the symptoms + i sat dumbfounded. i swallowed hard + forced myself to call the number on the screen. within a few weeks, i had an answer + finally knew that i was NOT crazy. a joy but now what? no cure? + still no health insurance.

i found a local support group + joined NN in 1996. i tried every treatment, every medication, + almost every alternative therapy - exhausting every penny i had. then in 1999, after 11 jobs in the 7 years after college, i reluctantly filed for disability with the federal government. ssdi was approved after a horrendous 18 months of appeals + loads of paperwork. that was one of the very worst times of my life. it truly emotionally destroyed me + still bothers me quite a bit to this day. there is alot of shame there that i cannot quite reconcile.

but as i stayed in touch with the narcolepsy community + learned more + more, i started to realize how many creative people there were among us. sooo... i had the idea to start N[ART] (narcolepsy art) based upon the program D/ART (depression art) which i had randomly seen on a coffee mug. it gave me something very worthwhile to work on while in disability-waiting-pergatory. i gathered the first show together to display at the new york city nn conference in 1999 + have collected such artwork ever since. it amazes me the talent among us. there really is something to it.

so life's lessons have continued with some really tough years but also some really wonderful times which seem to be coming more + more. life with narcolepsy certainly is an interesting one + not one of my friends would say that i am NOT interesting. i have to be or i'd put my own darn self to sleep.

here are some links:

CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP: http://www.groups.ya...osleepdisorders
N[ART] narcolepsyart: http://www.groups.ya...p/narcolepsyart
myspace.com/dreamiestgirlever

[CantKeepUp]

Hi!

My name is Tara and I just received my official DX last month. I have, however been on provigil for over two years. While in college I did what other college kids do, stay up late, cram for tests, and nap inbetween classes. I never thought it was anything out of the ordinary. Then, my first job out of college I would fall asleep in my office and even in meetings when I wasnt an active participant. My boss finally came to me one day and said I had to do something about it or I wouldnt have a job. So I saw my primary care dr that day and she gave me provigil 100mg to help me get over the hump from college to working life. I, and EVERYONE around me noticed an instant difference. I thought IM CURED! However, several months later I started to doze off towards the end of my work day and the dr upped my rx to 200mg.

Two years later my new husbands insurance requires I have an official DX of N to fill the script for provigil so I found a sleep phy/pulmonology dr. Did the sleep study and well.............. here I am.

N runs in my family, my paternal grandmother was dx in the 90's and now has her drivers license revoked and no meds work for her. The sight of her like this makes me depressed. I have a 7 month old little girl and a husband. For goodness sakes Im only 27!!!!! Is that what I have to look forward to???? I think since my "official" dx I have been worrying about everything possible and its put me in a terrible funk. On top if it all, my meds are seeming to "wear off" earlier, (if thats even possible). My new dr said I have to have two consecutive months of feeling like this before they will reevaliate my meds. WHAT am I supposed to do for two months?????

My husband acts like he understands but he doesnt. He get frustrated when all I want to do is sleep. And when my parents keep our daughter over night he wants to go out, and I want to sleep (suprise suprise). I find myself getting short with everyone because Im always tired, and my mother seems to think its depression. I am fully capable of admitting when Im depressed, and this does affect my outlook on life, however she thinks: give me depression meds and I wont be depressed therefor I wont be tired ---------> therefor Ill be happy again.

I DO NOT want this disease to define me. I will not let this disease define me. I am thankful for this site and so many of you who are being so positive and helpful. It does give me hope. I look forward to getting to know you all. <3

[Lisa Kato]

Lisa age 40... Started with SPHH @ 7... mum hyperspiritualized the whole deal (she was involved in the occult and had SPHH as well) Decided by the time I was a teenager it was not 'The Family Curse' moved on with my life. My son now has SPHH (stared for him about age 5 he is 11 now) and I can't make it thru a day with out a nap. Decided to follow up diagnostically to find answers for my son (as well as myself). Looks like I do have the 'Family Curse' and it's Narcolepsy. Damn it I hate it when she's right!

[Jigglypuff]

Hello everyone

My name is Jigglypuff.. well actually no, its not, its Paula.. but anyone who knows me calls me Jigglypuff, Jiggs, Mrs Puff or even sometimes Mrs Van Persie because I am crazy about Arsenal football club.

I am 38 (next week!) years old .. Married to Dave with three fab children, Sophie (16) Marcus (13) and David-Lee (11) and we live in the North West of the UK.

I am currently going through tests hopefully soon to be diagnosed with narcolepsy. Why hopefully? you would ask.. Nobody wants to have narcolepsy do they?

Well lets put it this way.. if I DONT have narcolepsy then I have some serious unresolvable problem with my sleep.. so yeah.. I guess a diagnosis would be a relief.

I have extreme daytime sleepiness. I work full time for the government and often fall asleep at my desk, in meetings (meetings are the WORST and its sooo embarassing!!) on the bus home, when im in the car when hubby picks me up from work.. Anywhere.. if sleep is going to attack there could be a fire engine with all its WEE WOOS going off and I would still crash! I have what I would consider to be mild cataplexy.. it does not happen all the time but quite often my legs and head will "wobble" when I laugh. I have never collapsed with it though, so thankful for small mercies, eh?

Back to the meetings.. when I fall asleep in meetings it does not actually feel like falling asleep. It feels as if everything is "shutting down" somehow and however much I try to fight it I cannot stop myself from going. As a manager-grade civil servant this isnt really acceptable at work - another reason why I am pushing for a diagnosis... If I have a medical condition work have to be more understanding! Sometimes I only really realise that I am falling asleep when all of a sudden there is a big dog running round my legs and I realise this is not normal in the office.. My eyes are usually only 3/4 shut when I have the "dream visions" Not only a big dog.. I have also had a red telephone flex wrapping itself round my legs.

I also have ( and please, if anyone reads this, tell me whether you have also experienced this..) If i decide to take a nap (concsious decision rather than just dropping off) I have recurring dreams.. over and over like groundhog day .. for example on one occasion i kept dreaming that my sons football training had been cancelled and I could hear my husbands voice. I opened my eyes, nobody was there but I couldnt move a muscle for a few seconds. Having heard about sleep paralysis as a symptom of narcolepsy I wasnt scared, but it was weird. This kind of thing has happened a few times only with different dreams.

I have seen my GP and she sent me for a sleep study. I was disappointed when i turned up though, because all they did was give me a contraption to wear overnight at home to test for sleep apnea. Im small and slim, and when my husband was asked whether he had heard me waking up gasping for breath he said "maybe once, in 12 years" Even the nurse said i dont fit the profile for sleep apnea AT ALL. No questions were asked about my dreams, visions, cataplexy or sleep paralysis. I hope they wont just say "Oh no you dont have sleep apnea so there is nothing wrong". The only questionnaire they gave me was the Epworth sleepiness test, they asked myself to fill it in and also my husband on my behalf. I asked him to do it first in case I have a dose of the "drama queen" and i did not want him to be influenced by my scores. He scored me 18 which is exactly what i scored myself.

Sorry for the long waffle.. but there you go .. that is me and my story.. If anyone wants to friend me on facebook or anything my name is Paula Atkinson and my picture is the ARsenal football club crest.. Im quite easy to find and always accept friends.

Hope you are all well and happy despite the snoozies!

Jigglypuff x

[oldnewby]

Hello All,

My name is Kim. I've been tx for OSA for about eighteen months. I was dx with N about one month ago. After the dx, I did some research and everything clicked. I feel like I have finally met myself. In retrospect, I know I have had this all my live. EDS, sleep paralysis, auditory hulucinations upon going to sleep. I've been playing the what if game..... Can't change the past, right. I was pleased to find the site.

[Stacey]

Hi everyone! My name is Stacey I am 27 years old and was diagnosed with N a little over a month ago but I feel I have had symptoms over the last year. I currently work as a RN, Transplant Coordinator. I also have three young boys ages 9, 5, and 2. I separated from my husband back in September and have been going through a very nasty divorce. I do have a boyfriend who has been with me through the process of getting diagnosed, and is trying to understand what I am going through. When I started feeling soo tired during the day I attributed this to the increase stress that I was going through so I kept blowing it off but after a few visits to my PCP with other issues they insisted I have a sleep study done. My boyfriend teased me about going to the first one saying it was a waste of time because he knows I don't have sleep apnea, he suffers from insomnia so he is up most of the night while I sleep. I went to the test anyways a little reluctant but knew I was not feeling any better and I just needed answers. Since I work at the hospital I am allowed to pull up my own records so I was of course studying my results as soon as they were posted and was doing research on the sleep cycles. The one thing that caught my eye was how quickly I entered REM sleep and also the amount of time that I was in stage 3 sleep, the average person should be in this stage 20% of the time I was only in it 5%, and with this being the deep rejuvenating sleep I was a little concerned. The idea of narcolepsy did cross my mind when I saw that I entered REM after only 20minutes or so but I sort of brushed this off and thought it had to be something else that was directly attributed to the stage 3 sleep. None of the literature I found used N as a reason for the lack of stage 3 sleep. So a couple days after I had the results I received the call from my sleep doctor's office saying he wanted me to come in to see him to discuss my results, keeping in mind that they told me they simply give results over the phone, but of course I could not get in to see him for 4 weeks. Now with feeling worse with each passing day I was not happy about waiting 4 weeks to talk about my results so the emailing began. I skipped over the office staff and emailed my doctor directly letting him know how long I had to wait to see him and if there was anything I could be doing in the meantime to help me feel better. He then said he could not give me anything until I had the MSLT done and that he would go ahead and order this for me and put me in contact with the girl to schedule. Managed to get this scheduled in 3 weeks, having to allow time for the 2 week sleep log and requesting off from work, and kept my appointment with him a few days later. So after my MSLT I of course was waiting and waiting for my results to post so I could do my studying and research before seeing him but they were not posting. All I could think is that someone had screwed up and I would have to go through the test again since after 5 days there were no results. So I went to my appointment and he was going through my record, which of course is all electronic so the MSLT result was not showing up and I feel he did not really realize I had it done. So I asked about the results of that portion of the test and he realized that he had been reviewing it while he was waiting for me to come, it was sitting in front of him with little notes written all over it. Apparently he was going back and forth with the sleep techs about the results to ensure they were actually correct. During the study I fell asleep for all 5 naps although I thought I only slept for 2 of them, I still swear I didn't sleep during the last nap but who am I to argue with the results. I also entered REM sleep during most of the naps and it only took me an average of 2.2minutes to fall asleep. So FINALLY a diagnosis, I was excited about this... but then of course no meds until a couple tests were done. Had to have and echo and EKG done first which of course took a week to get done and a week for his office to get the results. And once again it took my emailing him directly to get an answer about starting meds. He wanted to start me on Provigil, but of course had to go through a prior authorization which was denied. Now I had to call my insurance myself to discover this and when I went to inform my doctor's nurse so we could move on I discovered she was on vacation. So now dealing with someone else so it took about a week to get an answer about what he was going to start me on and to get the script. I was started on Ritalin 5-10mg in the am and 5mg around noon. Second day of taking it I went straight to the 10mg in the am, then after a few days I emailed him to ask if I could increase the noon dose to 10mg as well, which he was ok with. But then a few days later I started noticing how tired I was around 5-6pm. So had to call to ask if I could take another dose, this took a lot of convincing but he did eventually give in. So now I take 10mg in the am 10mg about 5 hours later and then 5mg 5 hours after that. I have been on this dose for a little over a week and felt great at first but am starting to feel like I am dragging some. I go back to see my doctor next week, so we will see what he wants to do with me. I am not sure how experienced he is with N, he asked me if I found any support groups to let him know instead of giving me the guidance to find something, so I have let him know about this site.

[MMK]

Hi Myself Madhumilind from India

Searching for friends to interact

[ImSleepin]

My name is Alexandra and I just turned 22. When I was in my early teens my younger sister and I used to talk about my "narcolepsy" all the time. I knew I was sleeping excessively, I didn't sleep well, and I always felt tired. I experienced SP and HH but never knew what it was, nor that it wasn't normal.

Around 18 I tried to explain that I was exhausted and sleeping all the time and then I was treated for depression. Even after being on Welbutrin, which I was told would wake me up, I was still sleeping. We checked my thyroid, and it was fine, so the problem was ignored.

At 20 I went to a neurologist for my migraines and headaches. Previously I had been seeing a pediatrician and had never gotten around to finding a new primary care doctor. I had taken migraine medicines before, but the pediatrician I ended up seeing on that visit (it was a medical group) refused to give me a refill, so I was referred to a neurologist.

During my visit at the neurologist he asked me about my sleep and eventually about SP (that's when I learned the official term for it), and he told me he thought I was narcoleptic. I was somewhat shocked and a little in denial at the same time. I was supposed to schedule my sleep study, and as disorganized as I am, I never did.

I went back to the neuro in July and told him I wanted to have him write up a new script for the sleep study and I ended up getting an MRI done the next day, too (which was clear, thank God).

My neurologist has been very patient and understanding with me and called me the morning after my MRI was done to tell me it came back okay. He called me the morning after my MSLT to tell me that I had N, and he asked me how I wanted to proceed.

So here I am, trying to get used to this and absorb it. I'm not sure if I've totally accepted it yet or if reality has even hit. I just can't wait to live a normal life, and not nap 5 times a week.

I hope to find people I can talk to about this, since people PWON don't understand the exhaustion, or feeling like a million pounds when you know you need to crawl into bed. I'm glad that there is a community for people like us.

Thanks for reading that

[narcats]

my name is kelly mom to (A) now 25- started over 10 years ago--after 29 uDxs and Dxs and having the title of nuts, mental, lazy,etc ..... you all know the rest---been there done that and still having to contuine doing the been there done that dance- whats new just got Dxs in march with cats without nar at is time not much of a prize but - always a BUT... been sitting in limbo- waiting the last 2 months- waiting for the nuer to call- --2009 to 2010 the Dr who sent son to LA is unable to help anymore not his speicaty with what he has- -saw a nuer Dr-2008 or 2009 brain fog--the second visit with a nuer Dr here stated theirs nothing wrong with him theres nothing more she can do and says he need to see a psy and not to come back--we were supose to see her again( ugg) for sons treatment but she again said to the lung Dr theres noting wrong with him and refuses to see him again--fired the reg Dr- its taken 2 months to get a new one- this tus-finely-- because of his insurence hes limited on who he can see and if he gets outside help they well cansule him(someone elses money) --lost count on how many Drs and shrinks all kinds--I have RA and fibo so catching/ holding/moving a 160lbs body with part or no muscle tone can be painful sometimes--2010 saw a wonderful Dr in LA ahead of the Neurology deptarment now if we can get another refural to go back and keep going back until we find someone here--yep that me you saw running down the street screaming pulling out my hair going crazy ---- my world my sons world his sisters world and all are welcome to it but .. hate the word but-- if you give me lip and/or call him mental scram-----last but not least- the up and personal thing with the floor sucks

[Linna]

My name is Julie and I was recently diagnosed with N (Jan 2008). I feel like I have similar symptoms to Rhonda. So I just have to deal with the EDS and the lovely habit of night time bingeing!!! Actually I hate that part the most! :x It's been quite the adjustment and for the most part people just don't understand, especially my family. I'm only 23 and I fear it will get worse.

What is up with the night time binging? I find myself in bed at 11:00 pm just lying there thinking of crackers. Sometimes I just get up and eat crackers. Sometimes I wake up to find myself eating crackers in the kitchen.. So wierd...
I wonder if alot of people do this?

[narcats]

my name is kelly mom to (A) now 25- started over 10 years ago--after 29 uDxs and Dxs and having the title of nuts, mental, lazy,etc ..you all know the rest---been there done that and still having to contuine doing the been there done that dance- whats new just got Dxs in march with cats without nar at is time not much of a prize but - always a BUT... been sitting in limbo- waiting the last 2 months- waiting for the nuer to call- --2009 to 2010 the Dr who sent son to LA is unable to help anymore not his speicaty with what he has- -saw a nuer Dr-2008 or 2009 brain fog--the second visit with a nuer Dr here stated theirs nothing wrong with him theres nothing more she can do and says he need to see a psy and not to come back--we were supose to see her again( ugg) for sons treatment but she again said to the lung Dr theres noting wrong with him and refuses to see him again--fired the reg Dr- its taken 2 months to get a new one- this tus-finely-- because of his insurence hes limited on who he can see and if he gets outside help they well cansule him(someone elses money) --lost count on how many Drs and shrinks all kinds--I have RA and fibo so catching/ holding/moving a 160lbs body with part or no muscle tone can be painful sometimes--2010 saw a wonderful Dr in LA ahead of the Neurology deptarment now if we can get another refural to go back and keep going back until we find someone here--yep that me you saw running down the street screaming pulling out my hair going crazy ---- my world my sons world his sisters world and all are welcome to it but .. hate the word but-- if you give me lip and/or call him mental scram-last but not least- the up and personal thing with the floor sucks---add on----**** sons shrink needs to see a shrink-- we brought up dbt,cbt as a treatment- he told son that if he wants help dealing with his problem he have to amit being mentaly ill-- the Dr in LA says its cataplexy--the shrinks still thinks its mental illness--wonder who knows what they are talking about-- one more shrink hits the dust-- the new Drs second visit in a few hours hope she reads his charts this time and has a brain not to classifafly him the way the other Drs at the clinic--what ever happened to Drs dumping patients--

[Lisa Kato]

My name is Julie and I was recently diagnosed with N (Jan 2008). I feel like I have similar symptoms to Rhonda. So I just have to deal with the EDS and the lovely habit of night time bingeing!!! Actually I hate that part the most! :x It's been quite the adjustment and for the most part people just don't understand, especially my family. I'm only 23 and I fear it will get worse.

I have found the Sleep Paralysis and Hallucinations to be much less intense and frequent now that I am 40. Day time sleepiness is worse but I am better at recognizing/managing/treating.

[brownidgirls]

Hi! Im new to this community. Just diagnosed on Tuesday! I have been to my PMD, Neuro and finally Pulmonolgist. Im a 45yo RN, mother and wife. I too attributed my EDS to life. I recently fell asleep talking to a patient while doing his intake! I was so embarrassed! That was a motivating incident.
Im in the process of accepting this dx. I have to say Im feeling relieved and angry at the same time. Ive started taking nuvigil. It seems to be helping.
Im glad there is a place to share my thoughts and feelings. As truly no one understands. I Ive never met anyone with this dx and I work in one of the largest hospitals in the area!
I feel isolated and embarrassed.

[sleepzone]

Hi. I'm Ronda, and I was just diagnosed 3 months ago. I am relieved to have a diagnosis and some good suggestions and medications to help me cope. I had no idea it was Narcolepsy because I don't fall asleep while I'm in meetings or talking to someone. I laughed at first, thinking it was a joke. I thought of N as hocus pocus and way out there, but lucky me, I now understand that there are all types of symptoms and not everyone has the same ones. Wierd. I'm still adjusting.

[sleepzone]

Ronda,
I feel the exact same way, like ...really Narcolepsy? Are you sure? I've always had sleep issues but sure didn't know it would be narcolepsy because as far as I know, I have never fallen asleep while up and functioning. I wake up most days in extremely vivid dreams and I have a hard time "coming to". I can be "out of it for 1/2 hr. Very hard to become awake. Wondering if anyone else is like this??? I am trying to learn about the disorder. My Dr. has be on a sleep aid at night and Adderall in the day 2X and I tried Nuvigil once, but it made me feel bad, so I will wait for another day to try it again, when I am not so busy at work

[sleepzone]

What is up with the night time binging? I find myself in bed at 11:00 pm just lying there thinking of crackers. Sometimes I just get up and eat crackers. Sometimes I wake up to find myself eating crackers in the kitchen.. So wierd...
I wonder if alot of people do this?

Yes! I do! I'm up 2-5X a night and I am so hungry! I keep trail mix in my bathroom, a couple of handfuls and I'm OK. Peanut M & M do the trick too.