Living with Narcolepsy

Very good article. I was recently diagnosed and had no clue about the extent of Narcolepsy before this. The automatic behaviour has essentially caused me to lose my jobs I had due to working while sleeping and not being able to be accurate. Essentially we have lost our health insurance, we are moving to another state soon in order be able to rent a home for $300 because we will only have one income to live on. I basically cannot function. The provigil did not work for me, we are trying others and having no luck so far. Depression is certainly setting in. We will do what we have to do but this is certainly not where we saw ourselves. This is definitely life altering. For me this is debilitating so far no matter how hard I try. And people just keep saying-drink coffee or are you rested yet. It just is not that simple.

good work mr Ed

I saw a documentary last night, and this is quite moving.. more awareness needs to be around it will help make people understand this more!

Thanks Damien for helping to bring more awareness about Narcolepsy to the world! Sometimes I feel like no one understands, and then I run into something like this, and I feel encouraged to help bring about more awareness. Cheers to you Damien, and I hope you are doing well!

Damian a good support group is
http://dailystrength.org/search?q=narcolepsy
You will find lots of other people with narcolepsy and cataplexy. I suffer from narcolepsy and it has helped me share my experiences and learn from others. Knowing somebody totally understands what is happening to you is priceless.

Damien you explain Narcolepsy perfect and it's a great thing you have done to make more people aware of this illness!!

I was diagnosed 2007 and finding things really hard.

Really glad you have been given the opportunity to try xyrem and I hope everything works out for you in the future.

Takecare

I also have narcolepsy with cataplexy. I first got symptoms in 1991 It took me 3yrs to convince someone there was a problem and then they have experiment with different meds to try to help me. there was no new ones to take until xyrem became available, was told that i would be able to have this, then after waiting a year for it i was told my case was not bad enough for me to take this and because of the cost of it it would be unlikley that my local gp would supply it. After 17yrs of being called things like a drunk, lazy and gaining weight, which lead to sleep apnea which i have a c.p.a.p machine at night. Also meds i took earlier on caused my teeth to become loose and after a lot of pain and suffering not many of my own teeth left. I believe quality of life is more important than any amount of money and we should not have to fight to get that. Surely anybody can see that with this med people would have a chance of a normal life gaining the energy to excercise and i would love to be able to even do a part time job. But thing is we have to speak up and make our selves hear and make this medication available to all who needs it Life is hard enough without having to tackle the authorities.

I've had narcolepsy all of my life. Not diagnosed till my early 40's. From Damien's description (very well articulated) you can see why it is so hard to get anyone, even a doctor to understand what you are going through. Xyrem has been a Godsend to many of us with this condition. For the first time ever we get normal restorative sleep. If undiagnosed we usually end up with fibromyalgia (a chronic pain syndrome). Once the Xyrem allowed me to sleep normally, I have very little chronic pain. This condition is so misunderstood, so it is very important to get good information like this to the general population. Thank You!

Fantastic description of Narcolepsy. Well done. Ive been trying to increase awareness about Narcolepsy because I too have this crazy nuerological disorder. Damien pod is exactly what people with Narcolepsy experience. It is very debilitating and so difficult to describe. I am doing so well now on my medicine that I forget what life was like before. Great job Damien!!! Nicole

Well made and articulate

That was a powerful pod and it was very insightful on how someone feels with this situation. Micro-Sleeps. That phrasing is funny to me and very descriptive to what he goes through with those. That would get annoying after a while, though one would have to get use to it if they were to deal with it. I would find it difficult.

But I'm sure people who knew what I went through would find what I go through difficult and I just find it normal and simple. So is life.

I thought narcoleptics simply fell asleep at inoppertune times. I didn't know there was so much else that came with it.

Narcolepts unite! I too have narcolepsy, albeit a mild case. For me the most debilitating symptom was the constant daytime sleepiness- something which modafinil (Provigil) does a great deal to counteract. It's nice to see a pod about narcolepsy, although it's more of a profile of an individual than of narcolepsy.

I have narcolepsy. I am very thankful that my symptoms have improved thanks to the drug Provigil, which is a powerful amphetamine/stimulant. Like Damien, my life is very fragmented. I just graduated high school and I'm worried about whether or not I'll be able to read/study/function as a college student. I am glad that others are trying to raise awareness about narcolepsy, because it is deceptively crippling.

Truly insightful. It's so good to know that the meds are helping him out. How difficult it must be to live life in short fragments.

The brain misinterpreting emotion as REM sleep...wow. The brain's hard enough to soothe and manage without that difficulty.

What an amazing pod. I don't understand how 51% of people voted "Nope" on it.

from what he's describing i think i might have this...