Lovemyhusband

Calling all new users

351 posts in this topic

Hello everyone :) I noticed we have lots of new users but I didn't get a chance to meet you all.

If you have a moment introduce yourself. I'll go first.

My name is Clara, I am a PWON married to a wonderful PWN. Andre (finally) was dx'd in January 2008. It was about time, someone besides the two of us, noticed it wasn't depression. We have two wonderful children and have been together for an amazing 18 years.

OK now its your turn. :) I'm all ears/eyes

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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.

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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.

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:D Hello Ronda and Julie it's nice to have you join us.

Julie--Just live in the moment, don't worry about your symptoms getting worse since there is plenty of time for that later in life.

Family can be the hardest to get to understand about N. They all think they know you and put the "your just overworking yourself" or "your lazy" tag on you and don't really want to understand the condition. I have found that not letting their hogwash non-medical opinions get to me helps both me and Andre.

BTW Andre is a big night time binger. I was hiding all the candy but recently ran out of hiding spaces. The kids are now in on the game of "lets keep the junk from daddy" game. :lol:

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I'm Stu...

And when it comes to the art of Narcolepsy, I'm a ninja!

I'm a a sleeping, Black belt master!

Okay, okay...

I'm not REALLY all that, but I work towards it everyday, probably like you too. We learn together, right?

It would mean a lot to me if you read this post on my blog... :!: :!: :!:

Thanks!

-Stu

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Hi, I'm Lisa, and I live in Ohio.

I am newly diagnosed and new to the forum. I have had a variation of symptoms that began around 15 years old...started with sleep paralysis and hallucinations, then progressed to a few cataplexy episodes that were misdiagnosed for years as panic attacks. I just turned 30 years old a week before my Birthday I had an MSLT done and finally found out that my problems were due to Narcolepsy. The EDS was ruining my life!! and I am so happy to now have an explanation as to why I am SO TIRED!! all the time.

I have a 3 year old Autistic son and I am engaged to his father. We are just learning to deal with my (EDS) extreme sleepiness and working on finding the right medications.

I am extremely grateful for this forum and check in everyday. It helps so much to know that there are others out there who know what I am going through.

I hope everyone on here not only gains something from this forum, but also takes a moment to read the posts and help others who are struggling. I think we can all learn from each others experiences!! so please take a moment and introduce yourself...you never know who needs to hear from you!!

Looking forward to meeting you, Lisa :D

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Hello Lisa

I'm glad you took the time to say hello. I try to check in everyday as well. I hope to chat with you soon. Did you choose a wedding date yet? I got married almost 13 years ago and it was such a blast. More of a big party after a boring church visit :lol: .

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Hi Clara,

It's so nice to meet you. We haven't set a date yet but are planning on sometime this year. My fiance's family all live in Hawaii (he's Hawaiian) and mine are all in Ohio so we are trying to find something that will work for everyone. I'm thinking probably the wedding here in Ohio and a (huge) informal ceremony/party in Hawaii (Luau style!!)...I'll have to start working on my tan!! :wink:

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Hi. I'm Debbie and I'm 41. I was dx N w/o C in Nov 2007 after 20+ yrs of not knowing what was wrong w/me. I'm a single mom to a beautiful 8 yo (soon to be 9) and we will in western NY.

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Lisa, Sounds like a good plan. Keep us posted. I loved planning my wedding. I think I have the record for ticking off the most people because I am not a traditional kind of person :shock: . It was lots of fun though :lol: .

Hello Debbie, I'm glad you stopped in a posted. I have an 11 yr son on the edge of 12 and 5yr in three weeks 6 yr daughter. I have the upmost respect for single moms, I don't think I could handle it on my own. We live in NY , about 20 mins from Albany.

Talk with you all again soon

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Hi, my name is Rachel, and I am a PWN, but I also live with the pain of fibromyalgia and RA. I am 27 now, but my body feels so worn down all the time, like I am in my 60's at least. We just lost our house, so live has been really difficult. I am so happy to have a place online for all of us to gather and talk, free of judgemental persons who know nothing about narcolepsy. If you like you can check out my Myspace and YOu Tube Pages, just look up my username on both of them... discuscatcher.

I wish for life to get easier, enjoyable, if possible. I want to move without pain. Often, the sleep attacks I get throughout the day are wonderful escapes, but when the pain is too much, I keep waking up. I love Xyrem, it lets me sleep!

Well, it is so nice to meet everyone, and I hope one day, none of us will ever have to worry about making ends meet.

Love, Rachel :)

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Hey, I'm Chris, aka Topher, and I was dx'd 3 years ago (?) at the age of 16 after a few seizures, double-vision, a bad doctor, and then not being able to stay awake...y'all know the deal right? (Hopefully minus all 4 counts :P) A little over two years ago I founded a support group online to help others and as well as myself, of course. As much as narcolepsy sucks, I am always one to look on the bright side of narcolepsy, for everything it has taken away, it seems to have given more back :). Currently I'm pulling my hair out (though not as much as my mom) looking at colleges...the choice is so hard!

And sleepyavon (discuscatcher) weren't you on my site at some point? We miss you!

Chris"Toph4er"

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Hello Rachel and Chris. Welcome aboard.

I hope you both come back and check in once in a while.

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I'll be here a bit since Stu asked me to help out :). I love being able to reach out and help others, nothing makes me happier.

Chris"Toph4er"

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Hiii,

I'm Liz. 27 year old female from Boston (moved here from Tampa Bay)

I was finally diagnosed when I was 23 after a lifetime of sleeping constantly, weak muscles, slurring, some (usually) non-frightening hallucinations.

I have always worked full-time and have horrible attendence and punctuality... which is not very fun.

My medications are currently Provigil and Xyrem.

I try to have a sense of humor about my narcolepsy... and also don't mind explaining to people because otherwise, people would just assume it's what they see in the media and not understand it correctly.

Annnnnd........ well, that's about all.

Nice to meet everyone!

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Hi everyone.

My name is also Julie. My N goes back as far as I can remember with first CAT attack at 6 years old. Definitive diagnosis at 13, then again at 16. I decided to go off my medication at 16 due to the fact that all that was available 10 years ago was major stimulants. I HATED THEM! Now, at 25, my N has gotten so bad that I stopped working and driving 2 months ago. I began seeing a Neuro again last week. I will begin treatment next week.

My husband has always been very understanding as he was the one who drove me to my 2nd sleep study at 16. He made my CAT attacks in public less embarrassing and keeps track of the kids while I nap. It has been 6 years since my last CAT attack. But my EDS is unbearable. My life has been ruled by this for too many years.

I am curious and excited to see what life is like while being treated. Provigil and Xyrem is the plan.

I am so excited!

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Hi People,

Im Tony, Im From The The UK.

Im 14.

I was diagnosed at age 6.

Pleased to meet everyone here.

I was at the last NN Conference in April.

I recomend you go to the next one.

Amazing. :lol:

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Hello my name is Tanya. I was just diagnosed with N about 6 mos ago. I have been misdiagnosed for over 10-15 years. I'm glad that there is a place to go to and everyone knows at least one thing you are going through. No one that I know understands what I am going through. I look forward to talking to everyone!

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Hi...I'm Ann.

I had my first symptoms at age 8 - that was in 1969 before there were diagnostic tools or specific medications. I was mis-diagnosed as "hyper-active" which is the modern day ADD. I went another 29 years until diagnosis and treatment. I'm now 46...maybe the old lady in the group!

I have EDS, HH, Automatic Behavior but have never had sleep paralysis that I recall. Minimal Cataplexy if any at all...my doc says I have it, I'm not sure. It's in my face which I can't see :P . I also get weak in the knees when laughing allot, but I know people who also get this way who don't have N. June bugs make my legs weak. I ask that all warm-blooded friends or anyone else for that matter to KILL a June Bug if you see one. I will be forever indebted. And Mr. Tony...no tricks with June Bugs if I see you at future conferences. 14 year old boys are prone to paying little games on old ladies. Besides, the next conference is in the fall...long past the life span of a useless June Bug.

I also have REM Behavior Disorder - this is the sleep disorder where a person hits their bed partner or flails around the room, knocking things over. I'm well medicated so haven't had any "incidents" in over 7 years. I used to be a walking human bruise.

Enough for now. Thanks to all who have introduced themselves.

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Hello Everyone, I am sorry that I didn't greet you all as you posted. I was out of town for a much needed getaway :blink: . I was very excited that you all took the time to share.

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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.

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Hi Libby I know exactly how your son feels. I was like that in the mornings, You would hear me shout "10 more minutes mum!" I also didn't want to go to school in case I fell asleep in P.E or something. Don't worry Libby, Your not alone. :)

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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.

((hugs to you))

Libby I am so glad you stopped by. Thank you so much for sharing what you are going through.

I hear you loud and clear on the starting an hour ahead of time to get your son out of bed. Thats the way it was for my husband before he started on provigil. We are slowly getting back to that point, I think the provigil was a very short term helper for him. I need to talk with the dr about an increase in dosage or change in meds, sounds like fun doesn't it :huh: .

Don't think that you are any different in the needing "to talk" department than I am, we are all in this together. One thing I will ask is do you encourage your son to see the bright side of things? I know it sounds crazy but if the only negative is the symptoms of N than he should be feeling pretty good about himself. As you get to know me you will find I am an eternally optimistic person :D (drive my husband nuts somedays). I hope to chat with you again soon.

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Hi my name is Shannan. I am 21. I was FINALLY diagnosed last April. I started having sysmptoms , EDS, when I was towards the end of high school (15). I had seen a few different family medicine doctors. One treated me with Prozac for a year but that did nothing. I was diagnosed with ADD when I was 6 and took Ritalin. My parents have been divorced since I was 2 and in another battle only for the sole reason of winning my father made me stop taking Ritalin when I was 12.

I went to see a psychiatrist when I was 16 ( after the year or Prozac) to start on Ritalin again. He also took my symptoms of being tired and sleepy and napping as a sign of depression. I started doing better in school with the Concerta but no change with the depression medication. He thought that my birth control , Depo Provera, was causing depression. He took me off birth control completly and put me on another anti depressant. After about a year he realized the depression meds weren't doing anything. He had given me Provigil once, but it was while I was taking Wellbutrin and it made me horrible sickly feeling all day. He tried a few different pills, none of which did anything and none of which I can remember the names. He finally gave me a referral to a sleep specialist and I got my sleep study when I was 20.

The Concerta has done nothing for the EDS. I am now worried that I may not even have ADD. I have read that many people with N are diagnosed with ADD because their school work is suffering etc. We'll see. I started taking Xyrem. It kinda worked. I find that I have too many side effects though. It seems to make me more tired the first few days I take it and then I start to feel better. This is problematic since I Babysit over the weekend sometimes. Stopping and starting all the time was wearing me out. I had taken a break from it for all of November and December with the holidays and vacations and such. I started again in January and had a horrible reaction. I started to get very emotional and freaked out when I would take it. If I didn't fall asleep within 5 minutes of takingit I would be up for at least 2 hours in this drugged up freaking out state. It really scared my live-in boyfriend.

I have worked part time on and off and been in college. I never seem to be able to finish more that 3 classes a semester and could never work much. I graduated high school early at 16 but have slipped behind and am now in a mad rush to graduate with my BA before I turn 23 and get kicked off my mom's insurance. I quit my job about a month ago but unfortunatly just in time with that I have been getting worse and worse and worse since February. I though it would give me the chance to have enough energy for full time school but not so much.

I now realize I just wrote a short novel. Sorry guys......

So glad to find this place.

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I now realize I just wrote a short novel. Sorry guys......

So glad to find this place.

This place is glad to find you!

Your among a group where everyone has a novel in them.

It's all good! Write on!

-Stu

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