Could you help

I just don't know where to turn, the severity of my results are differnt then the things i research. even my sleep specialist/neurologist said they were quite remarkable in a sense.

I got diagnosed with narcolepsy in june of this year. I had multiple episodes of falling asleep behind the wheel completely loosing focus. all the time. I would usually work night shift jobs. Before I got diagnosed I thought the reason during the day I want to sleep is because I was also diagnosed with Insomnia and the lack of focus I thought might be related to my ADD diagnos that happened when i was a kid experiencing the same exact episodes but I dropped out of add meds and classes because I learned over time in school that it wasnt the concertrating part. I am perfectly fine.. but deep down I still had problems staying awake.. 1 point I went to a sleep study everyone said I was crazy you don't have it.. and i got told I had it and I most likely had it when I was a kid my Rem sleep avg was less then 1 minute for all 5 naps. The doctor said thats impressive. We have been working on medication. And It seems to be a major struggle to find me a good medication its hard to talk to my doctor about my exact problems because I really don't know why it happens to describe but I've been on nuvigil and Ritalin since then. before the test i was on vyanese due to (me thinking it was because of ADD) I havent noticed any real difference other then I can control that i dont fall asleep but I feel like i use all my brain and power to stay awake. even though i can control it.. it still takes a hell of a lot of effort on my part. i see ppl talk about their success with xhyrem but ive never been suggested that med by the doctor.. and i Don't know too much about it, I keep telling them my problems.. and they are always helpful my fear is that it will be a long time before i find a good enough dosage to kick me into gear while im unemployed i got laid off due to being late for work cus of narcolepsy .. im in risk of loosing my house.. if you could help me id really appreciate it

My study consisted of fairly normal sleep at night according to my doctor but during the day.. my tests in 4 naps were all sleep less then 2 minutes. and all had rem. with an avg time of rem of less then 30 seconds coming up after sleep.

I also take nuvigil and vyvanse to function. I don't fall asleep during the day unless I lie down for a nap. How much nuvigil do you take daily? Does your neurologist understand how your debilitating fatigue is affecting your life? The only way I could get any docs to listen to me was to quantify the % it was affecting my ability to work and do daily tasks. I wrote a briefing paper on how my fatigue was affecting my life and read it to my doctor and brought my Mother to explain the "state" she has seen me in regularly. The meeting with the briefing paper and my Mother finally got me medicine to help with my fatigue. Doctors are use to reading numbers on test results, so giving them numbers in any way you can helps them understand - you need to speak their language with NUMBERS.

Also, I have sleeping episodes: I slept this past Friday night until this morning a total of 33 hours straight. I woke to use the bathroom and that was it. Sometimes I sleep for 3-5 days straight waking intermittently.

Excellent advice from Virginia; keep on your doctor. Request a prescription for Xyrem. If he won't, or can't, give it to you, call the Xyrem Success Program to find a doctor in your area who will. It can give you amazing, restful sleep. Life with narcolepsy takes extra planning and a lot of self-love with a good dose of forgiveness all around. Just don't forget that your life, as it is now, is worth it. You just might have to push a little harder to get what you need.

I'm glad you got your sleep test because you have hope of treating your narcolepsy now. When people tell you not to go to the sleep lab they have no idea how difficult it is for you to manage symptoms. It's hard to understand unless you've lived it.

Sometimes when I go to my Doctors I take my husband or kid’s. That way they can talk with the doctor too and let them know what they see on a day to day bass. It make’s it easier for the doctor to get conformation from your family on what you are trying to tell them. Also keeping a journal with number’s to give them. Very much help’s. I have narcolepsy and migraines :slight_smile: we just got the migraines where they are not coming as often and arnt as strong. So, it’s helping with the narcolepsy too. I take seven different MED’s and take time for myself. I was diagnosed over a year ago. Still have one day at a time :slight_smile: I would say one of the best thing’s to do is to say “I’m who I am” then take a deep breath, look at something that make’s you smile and then look at what is happening right before you start to loss focus. See for me I had to look back at growing up and how I felt before I would curl up and sleep. Then looked at as I got older what emotions where setting it off. Also how my body felt. Like my right arm getting tight, my fingers getting numb, a tingle in my head, my ear hurting, eye’s getting waterier, getting weak in my leg’s or feeling the need to just leave the area I was in at that moment. Those are just something’s I feel when the narcolepsy is about to hit and I need to take a 15min nap. I hope this help’s :slight_smile:

Wow I have struggled however my narcoleptic doctor has taken a more personal relationship I explain to him how scared n told him I need alot of help I told him this so if he wasn’t going to make me a priority then I need to find someone else however I am very admit with emails phone calls I m in a nursing home due to accident broken teeth broken foot and sleepwalking yes extended is the best thing that help with getting a goodnight sleep n waking up feeling energetic like Rachele I explained headaches burning eyes tingles in my feet and sudden pluses during talking texting reading n writhing I feel so embarrassed at time bout I acknowledge that I have a serious disease n people around me help I learn to become more of my surroundings n make people aware that I need help cause sometimes I m unconsciously responsive people aren’t that hard on us the y are interested

It takes courage and some faith that people will be helpful, but maybe it is less isolating to hide my symptoms quite so carefully. I'll experiment. Thanks Daesja. Fortunately I don't struggle with insomnia so I always try to be rested when I go anywhere, and take short-acting meds. I can't take the other ones.

Doxatomic, I know what you mean by using all your brain power to stay awake. It's very hard. If your financial problems are related to disability (doctor or social security can document) it is possible the bank can modify your mortgage with more manageable payments. This process can take a long time, so you should inquire about that, and tell them your circumstances. There are details that require patience. Some cities have a general purpose phone number so folks can be referred to helpful resources. If your city has an Urban League you can ask about help there, too. Best wishes to you.