I have had severe narcolepsy for over 7 years.

At first, I would only sleep an hour or so. Later, i went from one hour of sleeping to 3-4-5 hour Eventually, I could not stay awake to even eat. It quickly got worse. I was practically sleeping around the clock. I Had 2 teen age children. I recall them begging me for hours to get up and fix them food, but I could not get awake enough to even be able to move.

I would be in pain from fibromyalgia, but i could not wake up enough to be able to turn over or even to move. Often, I would talk to people and have no recall later. I would then remember, most of the time, when I was later reminded of the conversation. I HAD NO LIFE, NOR DID MY FAMILY. I SLEPT LIKE THIS FOR ABOUT 3 1/2 YEARS. I was given large doses of PROVIGIL several other drugs to try to wake me up and keep me awake. They were all like taking a drink of water. My heart would race and my chest pounded, yet I Slept more and more. the dr said, there was nothing more to try. I actually had to be given my meds while asleep so that later I would be conscious enough to communicate verbally while still sleeping. I HAD DREAMS BEFORE EVER GOING TO SLEEP AS WELL AS WHEN I WAS TRYING TO WAKE UP.

I lost muscle tone due to lack of muscle use. I also became to weak to walk alone from being in bed and from lack of food. There seemed to be no way to win. If someone gave my meds to partially wake me up, I lost all my appetite and could not eat for 12 hours. [I had no no willing to cook my food at 6 am and stand and tell me to chew and swallow.] IF I DID NOT RECEIVE MY MEDS AT ALL, I would just sleep day after day after day. [day and night] I would only wake up very briefly and then asleep again before I knew it.

I still can not tell you what caused this because it just happened one day all the sudden. I HAVE NO IDEA WHAT REALLY CAUSE THIS. I have no idea what even finally helped it. I WAS EVENTUALLY PUT ON RITLIN, [LG DOSES] AND AGAIN IT WAS LIKE TAKING WATER.

My children realized that I was dying and it would be soon. The dr’s had no idea of what to do. MY SON STARTED TO PRAY FOR ME AND ASKING ME TO PRAY WITH HIM. He ask all his friends to pray from church. I slowly but surely began to wake up more and more. My medicine was not changed, but something began to change slowly in me. Now, I can stay awake ALMOST like a NORMAL person. I must still have short rest breaks with a nap of 30 minutes or i will get really tired and can not think as well as I normally do. [1 nap a day when sleepiness hits] I do not have the answer, all I know is people began to pray and after 3 1/2 years, i started to wake up more and more. another 3 1/2 years have passed and I feel almost normal.

I WILL ADD THAT i had a serious head injury in 1977. [ I was unconscious 1 week] [20 plus years before the severe sleeping problem came about.

I still have all the other s/s of narcolepsy, but they are very mild compared to the sleeping problem I had. i have the visions before going to sleep and when I am waking up. I FEEL THAT i am sleeping before I EVEN THINK i am asleep. I have the loss of muscle tone when there are strong emotions. WHAT I HAVE NOW IS WHAT MOST WOULD CALL TRUE NARCOLEPSY. What I use to have is unknown to me or the doctors. [NOTHING HELPED]

When my death became apparent, prayers started to go up and I BEGAN TO IMPROVE SLOWLY BUT SURELY. This was all very hard on my family for it was like having a mom in a sleeping coma. I just want to make up some of the time I MISSED OUT ON WHILE THEY WERE GROWING UP. I now have one 12 year old, 1 18 1/2 and one 36. I WANT TO LIVE AGAIN EVEN THOUGH I AM FIGHT FIBROMYALGIA AND all the s/s of it as well as pain. I FIND THAT I MUST HAVE A CERTAIN TIME TOGO TO BED AND TO GET UP ALL THE TIME. Even now, I can still get some sleeping problems if i get off my sleep schedule. Too much caffeine will keep me awake past my bed time and I will then be unable to sleep. Also, I must be certain that I get 8-9 hours sleep nightly on schedule. I must eat a healthy diet or my energy goes down and I will sleep more. In addition, I must actually rest not just be asleep. i make sure my room is quiet and comfortable for me. Most of all, I make sure my clock is set and my pills at the bed side with mt water. The clock tells me to take my meds so I can wake up in 2 hours. Now, i actually do wake up and get up.

This condition took over 7 years of my life as well as my children’s life. There was no quality of life. I WAS JUST A LIVE IN BODY. I wish I could tell you what really brought about my turn around, but I can tell you a few things to help you stay awake once you are actually awake. It is possible to eat and be asleep. even to walk and be asleep. It is possible to follow your normal schedule and be asleep if the condition is not so very severe as I had the first 3 1/2 years. GOOD LUCK TO ALL.