23 replies to this topic

[Megz36]

Hello There!

I'm from Minnesota and was diagnosed at 16.. I like to think I've overcame a lot already.. even with my age. Reply back and lets get talking about our lives!.. It never hurts to share with one another.

[Andrea Egan]

Hi Meg!

I see you've replied to my post about organizing a support group in Wisconsin, but I thought here would be a more appropriate place to respond with informal salutations.

I was diagnosed with narcolepsy when I was 19 (I am now 21). I started showing symptoms (EDS) around 15/16 years of age and was originally labeled as "borderline-depressed." It wasn't until I entered college that the other symptoms--cataplexy, hypnogogic/hypnopompic hallucinations, and sleep paralysis--showed up, and the slow process of my life's destruction ultimately began. I hate to say that I've been to hell and back (because of the negative connotations such imagery implies), but it is true--in a strictly figurative sense. I'm sure you can relate.

In short: greetings!

[Megz36]

Yikes Andrea! As much as comforting that is to know I have someone to relate to as well as to talk to.. It's deathly frightning. How your life began is how my life is currently running! Identically! My dreams are to go to St. Thomas (St. Paul) and become a radiologist but my doctor keeps monitoring me because he's afraid most of my N symptoms will play out just as yours did. Well you seem like a wonderful person and I'm glad to hear that even tho you did go through hell.. you at least came back! Thanks Andrea!

[Andrea Egan]

Hello again!

Radiology--that's a wonderful field to go into. How did you become interested in that? Just because you have narcolepsy doesn't mean your life is over and you can't fulfill your dreams. I can't tell you how long it took me to believe that concept shortly after my diagnosis, but it is true! Things may be harder than they were before now that you have to work around irregular sleep/wake cycles, but they are only out of reach if you stop trying.

For the record, I am a senor in college and will receive my B.S. in human biology health sciences and chemistry. I plan to go on for my master's degree in physician's assistant studies and specialize in sleep medicine. My dream job is to work alongside a sleep doctor and work with patients with narcolepsy/idopathic hypersomnia. I want to be the caregiver that truly cares about every sleep-deprived individual that walks into the clinic and see them leave fully prepared to take on their condition and ready to begin a renewed sense of living once again.

You see, even if the narcolepsy did take away my life for a little while and continues to do so a little bit more everyday, it has also given my life a defined purpose. For the first time in my life, I am not just living because I have to, I am truly alive! While we may not experience life the same as everyone else, but if it wasn't for the narcolepsy, we wouldn't appreciate life for what it really is.

It must be human nature to be obsessed with our downfalls. Too many people who suddenly find themselves unable to do things they were used to become so depressed because they are caught up with what they can't do, that they forget about all the things they can do and miss out on life entirely. Or you'll see people rush through their day to day activities and not give a second thought about it. They forget about what it's like to actually be alive that they wake up one day and are 80 years old and are declared terminal.

Why is it only the incapacitated that seem able to appreciate life and are able to accomplish things others would never dream of attempting? It is because of their downfalls that they are able to see life from a whole new perspective and focus on what really matters. It's like being given a whole new chance at life they would have otherwise taken for granted.

This is your opportunity...embrace it!

[tweety836]

HELLO LADIES! MY NAME IS LINDA AND I AM 48YEARS OLD. I WAS DIAGNOSED IN 1992. MY DAUGHTER, LINDSEY WAS JUST DIAGNOSED THIS MAY. I WOULD LOVE TO GET HER ON HERE WITH YOU GIRLS TO CHAT. SHE IS 17 AND A SENIOR IN HIGH SCHOOL. SHE SLEEPS ALL THE TIME! I THINK THIS FORUM IS GREAT FOR ALL OF US TO SHARE AND COMFORT EACH OTHER WHEN WE FEEL LIKE WE ARE GOING CRAZY! I WILL TELL HER ABOUT YOU AND HOPFULLY YOU WILL SEE HER ON HERE SOON. THANKS FOR THE SHOULDER AND I WILL CHECK BACK IN WITH YOU ALL. LINDA FROM GRAND BLANC , MI.

[myersk]

Hello! I was diagnosed at 17 (now 19) and realize what you are all going through. Linda you are from Grand Blanc which isn't far away from me. Does you daughter happen to go to doctor Streff or Rittenger?

[tweety836]

Yes, my daughter actually went to sleep clinc where Dr. Rittinger works but Dr Hannon, a pulmanary actually read the results. She then went to a neurologist in Grand Blanc. I was diagnosed myself in 1992 by Dr Rittinger but he wasn't too familiar with narcolepsy at that time so I ended up in Ann Arbor U of M and in a study at beaumont hospital in Troy. I was one of the study patients for Modafinal or what they now call provigil. I had to drop out after 6 months as my menstrual cycles became closer and closer together. I here it works well for people.Haven't had a chance to introduce my daughter to this site yet but I will soon. Thanks for the reply and Grand Blanc is 12 miles south of Flint, 60 miles north/northwest of Detroit. Linda

[mhfowlks]

I'm an advanced anatomy student at my highschool and I chose to study Narcolepsy to teach to my class, I was wondering if any of you would like to conduct an email interview? It would allow the other students to see what it really is like to have Narcolepsy and kind of take it out of the medical aspect and show emotionally what it does.
So if any of you are interested get back at me!
my emails mhfowlks@yahoo.com

[narcoleptic2008]

im so glad i found this website. I'm seventeen and have been diagnosed with narcolepsy since the seventh grade. i would absolutely love being able to bounce stories and concerns off of other young narcoleptics. i have so many questions about dating and when do you tell the person you're dating about narcolepsy.... and how do you explain it to them with out them thinking your crazy.... I cant even describe how glad I am that I found this message board with teens like me who i can relate to!!!

[nyemvula]

hey there! i've known about this site for a while now, but just finally decided to give it a try. i'm 17 and a senior in high school, and was diagnosed with narcolepsy in january 2006.
so i have a question. does anyone have any suggestions on how to deal with keeping up with a busy high school schedule - and graduating on time?? i'm the first narcoleptic my school has ever run into, and they have no idea how to deal with me. :? my symptoms and very slight, thankfully, but this causes problems when my teachers can rarely see what i go through. i've been falling behind since 8th grade, when the symptoms showed up, and i was hardly ever in school my first 2 years of high school. that being said, i have a lot of credit to make up. to make things worse (sort of) I'm very active in my school's music and theater department. but this takes me out of school a lot. but it's the only thing i truly love to do, and there is no way i'm going to quit it. so, if anyone has any ideas on what i can do to get caught up in my work and maybe graduate on time they would be my hero! :wink: hopefully this site will come in handy, as i've yet to meet another narcoleptic in person.

God Bless!

[dettmann]

Hello,
This is the first time i have posted anything, I guess I feel in a way unsure how to communicate with others who have or will experience life with N. Another part of me is afraid to share what I have experienced growing up as a narcoleptic, knowing what lyes ahead of most here. I was diagnosed at the age of 16 with severe Narcolepsy, I can remember suffering with progressive symptoms of EDS and Cataplexy for several years before I was correctly diagnosed. I am now 24 and my life is crushed into one continuing blur of a wild Roller Coaster ride, but I have still managed to journey far (the trips to hell and back- add lots of unintended mileage).

peace,

deedee

[David L]

Hi,
I am from Minnesota too . I was diagnosed today and I'm 18. I should have been diagnosed 2 years ago but the doctor before that said it was just my sleep schedule that was off. It's actually quite a relief to have it be official now, since I already had a hunch that it was narcolepcy.

Also, I'm looking forward to the provigil, since I've already nearly gotten in car accidents numerous times, and lost a job because of it. Now I have a good excuse to write on future applications as to why I got fired though . The only thing that worries me is my high expectations for the drugs, and I'm just worried I'll be disappointed.

On a more interesting note, during the sleep study I fell asleep in 4 min and started REM in 3.5 min. I fell asleep and obtained REM sleep within all of my 4 naps too, which I thought was cool (in an interesting way). It explains why I have vivid dreams when I take short naps.

So anywho, hello narcoleptic community! Nice to meet/join you!

[Jin-Ah]

hi I'm Jin-Ah, diagnosed today with narcolepsy. 17 years old in Alaska.
I'm a Korean-American, and raised in a culture where you are penalized heavily for laziness. over the past 3 years every moment awake feels like torture and the dreams are worse.

being diagnosed put me at ease. but it doesn't help the situation I have with my parents. I am very hostile and they respond with screaming names. it's hard because my father is a schizophrenic as well, his yells arguments that have no reason in them. sometimes in public.

I wish my life wasn't such a soap opera.
all I want now is someone to relate with.

I just need to know that it gets easier..

[maxfan]

i'm 17 now, but i think i've had narcolepsy since 5th or 6th grade. the forgetfulness and sheer exhaustion without cause never seems to end. though my mother has narcolepsy, neither of my parents are very supportive. my dad thinks that i'll grow out of it, and my mom thinks i need to just deal with it. since i was just diagnosed this past fall, i'm only starting to get used to the meds, but it's hard! xyrem didn't help me that much, and provigil is so-so.... i have to take it twice a day and i still feel tired all the time. my doctor isn't very helpful, but hopefully i'll work it out.

[Kev2KX]

Heyyy i am 16 almost 17 and am a junior in high school in New Jersey. I was diagnosed with narcolepsy in Sept. of 07 but started symtoms the summer of 05 going into my freshmen year which had to be the worst timing ever. Everything was really tough for me early on i didnt really know what was going on and neither did half the doctors i saw. I was misdiagnosed multiple times and was told that this was all in my head and phsycological at one point. I pretty much missed my entire freshmen year and had to have home tutoring and all that crap. I went from being a 3 sport athlete with a lot of friends to pretty much doing nothing and lost communication with a lot of people. I do have cataplexy which is what really makes life a lot more difficult and stressful. I struggled through my sophmore year but managed to get through it but without playing sports and still not being diagnosed. I think ive learned to cope and deal with things really well espcially for my age, like i said i am almost 17, i do drive and primarily dont have a problem with it. I changed high schools at the start of this year and like i said was diagnosed at the begining of this year. Ive been taking privigle since then and i did play varsity football and basketball for my high school this year which has brought a little bit of a sense of normaliness back into my life. Dont get me wrong even tho i cope cateplexy is difficult but i manage and people dont really notice. I have just started xyerom and am really hoping it works and helps with the cateplexy. This is my first post and am intrested in talking with other teens like me that have gone through similar struggles with narcolepsy.

[greatbig47]

Hi Megz a friends....

I've had cateplexy since I was 4, and now (at 40) I can tell you a lot can (and will) happen between your age and mine.

At the risk of sounding like a cranky old man, I have to share a couple "When I was your age..." isms.

At 16, I was living on the streets as a high school drop out. My parents thought I was lazy since I wanted to sleep all the time. My cataplexy embarrased them, and they avoided being seen with me.

Like others with my condition, I turned to drugs to help me deal with reality. Then I "Found God!". Then I found drugs...then I found God again....and then the drugs.

I don't know how many jobs I lost because I over slept, or went to work asleep in my head still.

At 32, I started encountering more SP and mild hallucinations. I was then diagnosed with Bi-polar Disorder, and perscribed Zyprexa (which made me fat, suicidal, and even worse....EVEN SLEEPIER!). When the Zyprexa didn't work, the Doctors increased my dosage. And that's when things got worse.

They decided I would best be treated in a "respite", which was a kinder word for "mental facility".

It wouldn't be for another few years I would finally get properly diagnosed. The point I want to make is that you have been diagnosed, and things could end up better than you can possibly imagine! your best days are ahead of you, and the idea that your lives are on a downward decline now is only made true only if you believe it.

DON'T believe it...Believe in yourself, and enjoy the sucess that is ahead of you. By reading what you have already achived scholastically, you should be so very proud of yourself!!!! I haven't met you, and I'M proud of you!!!

-Stu

[daisyat&t]

Thank you for your comment. I am the mother of an 17 year old who was diagnosed at 14 with Narcolepsy. He has had problems with his sleep all his life. He had Epilepsy at 15 months old and was medicated for a couple of years for that. He later grew out of the Epilepsy. Something I noted when he did his sleep EEG's was that he would immediately fall into REM. I didn't realize that wasn't normal only that the technicians would be frustrated because they only wanted him to be in a light sleep. I complained for many years to his general practictioner and his Neurologist. Finally, when I received two calls in one day from teachers saying he is constantly falling asleep. I marched into a doctor office that was filling in for our general practicioner and said, "I think he has Narcolepsy." He looked at his records and said, "Well, honey, you've been complaining about this for years. I think your right." I wanted to cry. He was then given a Sleep Latency Test and it was obvious.
I found what you were saying about being diagnosed szicophrenic(?) to be particularly interresting. My son's great grandfather & grandfather along with many members of his fathers family have been diagnosed with szicophrenia. His father diagnosed with szizioeffective disorder.
The Neurologist we have had these past few years changed & increased his medication pretty much each visit we've made to him. My son does not have Cataplexy. Long story short, the last visit, doctor wanted to increase the adderal again. I said to him that it's time we do something different and he send us to an Indianapolis doctor that specializes in sleep disorders. It was brought to my attention immediately that he was on way too much Adderal. He was taking 160 mg a day. Does anyone else take that much. He will be having an MRI this evening and is now on 60 mg of Adderal & 400 mg Provigil. He has taken Provigil in the past and it wasn't helpful. He is now also sopose to have one day a week of "wash". Meaning that he doesn't take any medication one day a week. He slept the whole day & night of course. Anyone that might have this same experience, I would love to hear from you.

[Libby]

Hi,
I'm very new to this my son is 15 and was just it was just discovered that he has Narcolepsy.
He has been failing at school and the teachers email me weekly to tell me he is falling asleep in class.
He went to a sleep lab this weekend and thats when they discovered it. I knew something was up so I took him to the Dr. and she tested for everything encluding diabities to anemia, but all the test came back clear. The Dr. then said it was time for a sleep lab.
Let me tell you, the mornings in this house are rough, I have to start 1 half hour before he needs to get up just to get him to get up. Then the begging starts about wanting to stay home because he's just to tired to go or to do his work. So I just encourage him that it will be ok and please just go and try to get through the day. I have an appointment this week for him to see a specialist for his medication, crossing fingers here that it helps school and the attitude and most of all his well being.
I'm sorry if I'm not the one you need to talk to but I sure need you, This whole thing hurts so bad and I need some support.Thank you for listening.

[Cryopathic]

Hi libby What's your son's name?

[Libby]

His name is Phillip, and he's at that age where everyone is wrong and he is right (about everything). He started his MEDS today Provigil. I hope they help him