I have sever narcolepsy -- medication doesn't even help.?

Question

i have been denied twice for disability but fired from many jobs becuase i spontainously fall asleep. I just want to feel alive and awake. After a sleep test it was determined that i am actually in stage one sleep 24 hours a day 7 days a week. I have been clinically sleepwalking for 31 years. I'm so tired of being tired... can anyone help. I cant provide for my family - i'm a single mom - relationships fail because i'm always sooo tired. please help me.

Answer 1

Dear Charcoal,
Please know, that I am sympathetic to your situation and I understand how you are feeling. It must feel like there is nowhere to turn and nothing you can do about the problems you are having, but I have to start by telling you, you can never give up, and never stop trying. I'd like to share with you, some possible tips that may improve your quality of life, and make you feel better.
I am going to recommend a plan to you with suggestions on solving some of your problems:
1. As I am sure you are aware, there are several treatments for narcolepsy, many of which I assume you have tried throughout the past several years. One thing you can always do is check for new treatments. By visting http://www.clinicaltrials.gov/ct2/search and typing in narcolepsy it will provide you with a list of experimental treatments and solutions for the problem. I know this might not work but it is worth a try.
2. http://nccam.nih.gov/ is the National Center for Complimentary and Alternative Medicine. It is a great source for information on alternative, therapies, treatments, and medicines for an assortment of conditions and problems untreatable by conventional medicine.
3. Tips for Better Sleep-
Follow a regular sleep schedule. It is helpful to go to sleep and wake up at the same times as much as possible, even on weekends.
Exercise at a regular time each day, at least 3 hours before bedtime.
Get some natural, outdoor light each day.
Avoid caffeine late in the day.
Don't drink alcohol to help you sleep.
Avoid smoking.
Create a safe and comfortable place to sleep (quiet, dark, and well ventilated).
Develop a nighttime routine that helps you slow down and relax.
If you're having trouble falling asleep after about 15 minutes, get up, do a quiet activity, and return to bed when you are sleepy.
Try these tips and record your sleep and sleep-related activities in a sleep diary. If problems continue, discuss the sleep diary with your doctor.
http://nccam.nih.gov/news/newsletter/2005_summer/sleep.htm
That site should give you some hope.
4. Its all about you- while things may never get 100% better, you dont have to suffer. Build up a circle of friends and family who trust and love you, be there for them, and expect the same in return. Find a local support group (these are great) full of people who understand you and what your going through and kind provide comfort. If nobody else, children can heal like nothing else. The drive to be a good mother, and protect your children will serve you well. Take care of yourself and use the steps in number 3. Never give up and always have hope, and things will improve.

Feel better, and live every day to its fullest,
E.B.