Posted 02 November 2007 - 05:23 PM
hi.. how weird do i feel.. this is the first time i've actually been on a narcolepsy site and been given the opportunity to read other peoples experienes.. i've felt very alone and have had no support although i am coming to being diagnosed a year ago .. the year has been long and a constant battle. i felt that from the moment i was told iwas given a prescription for my medication and told to return to my consultant in 3 months.. confused.. i started to take the meds and returned as i was told, to be given a 5 minute appointment with .. NO .. not my consultant but his registrar who asked a few questions wrote down her answers and increased my provigil from 400ml to 600ml.. and again told to return in 3 months .. i felt let down it was almost like they couldnt do enough for me in the first appointment when they got me to do sleep studies.. i even went through the ordeal of havin a lumbar punture body scans and bloods taken every 30 minutes to enable them to study different types of people with this condition as i didn't meet the criteria.. in the hope that that they may one day find a miracle cure.. and that was me finished with.. i was then a statistic .. i still go every 3 months for what its worth.. but the after care and support is'nt there unless you find it yourself.. no 2 days are the same i have good and bad days but life goes on.. i do still think why me..and try to keep it to myself as much as possible.. not because im ashamed but havin to explain to most people that ask what it actually is .. i dont want to feel different.. i just want to be me..
if your this far thankyou for takin the time to read my 1st post
Posted 02 November 2007 - 07:06 PM
After my sleep test and as soon as they knew I didn't have apnea or need a cpap machine, I was ignored. Here, have some pills. And when they didn't work, I felt like I was annoying them to get something else.
Anyhow, if you really want to be yourself again, go see this thread.
It's better than a doctor. Seriously.
Posted 24 November 2007 - 11:51 PM
Posted 29 November 2007 - 01:18 AM
I just started on this web site yesterday. I was just diagnosed with narcolepsy and am not on any meds yet. I don't know what they can give me as I'm aleady on 14 other meds for neurological problems I've had since I was 9. Over 40 years ago. 3 of the meds I take should be controlling the cataplexy and they don't and I'm already on the highest dosage. Other meds control the pain. I used to be a very outgoing, sociable person. I also used to keep very busy. Three years ago I started falling down. And now my life has totally changed.
Last year I went through a very deep depression (the hole, I called it) and please try to avoid it if possible. Stay away from the hole. Fence it in. But, do not fall in. I know how hard it is. I know how depressing it is. But, please, try to find reasons to be happy. To be busy. Even small things.
A lot of mornings I crawl/roll out of the bed to the bathroom and hope I make it. It may be 30 mins. or more before I can stand. This is not from the narcolepsy, but neurological. I finally make it to my patio, with my juice, where I sit and watch the birds at their feeder and the birdbath and think, "how beautiful." It's something I wouldn't want to miss. I have a loving husband and a mini-schnauzer that sits by my side all day while my husband's at work. I may do a load of clothes. Fix some toast. Fall asleep standing at the counter for an hour. Eat the cold toast. I crochet a little. I take a nap (so, it wasn't intentional). When I wake up I take something for pain. Thirty minutes later I fall asleep in the bathroom. I have perfected falling asleep!
My point: Try to stay away from depressing thoughts. I know it's hard, but please try. Find a couple of things to look forward to or enjoy every day, no matter how small. Look for pleasure in the least likely places.
Yes, everything's changed. Yes, you want to be you again. You will go through the stages of grief - anger, depression and I can't remember the others because of narcoplexy. It's as if you have died. Lost yourself. After that, you will need to re-invent yourself. It isn't easy or for the faint of heart and whoever called sick people weak has never faced our trials. You will be okay. I promise. Be strong. And, after all, we will be here for you to help. You're far from being alone.
Posted 29 November 2007 - 05:08 PM
One weekend, while on an extended business trip, I ran out of my Provigil. I went on with life using Red Bull and Caffine Pills to get by. What I realized is that I felt better off the drug than on. I was exhausted, but mentally clear for the first time. I hen went back to my doctor and asked for a different option. They handled it and I am moving to Ritalin Monday. I am kind of scared.
I am a 35 year old mother of three who can't afford to crash and burn again. I want my normal life back but I realize that only I can get myself there. It is not easy and I have realized that my doctors are for diagnosis, support groups are for support. Glad to have signed up! Glad to hear from others.