Sunday, January 13, 2013

The Narcolepsy Notes #1

Just over a year ago I was diagnosed with Idiosyncratic Primary Hypersolmulance. Sounds impressive eh? It's a type of Narcolepsy. A sleep disorder where the brain puts a person to sleep at inappropriate times.

At first I was thrilled to have a diagnosis because I was living with symptoms for years and years and nobody could figure out what was causing them. In fact, most doctors didn't try too hard to find the cause when the 'usual suspects' had been ruled out. (But more about that later).

So I thought, now that we know what it is, let's get on with 'fixing' it. However, I found out there is no cure for Narcolepsy. Moreover, very little is known about it. Most sleep research is done on Insomnia and Apnea. Very little has been done to date regarding Narcolepsy. So medical treatment is limited.

Also, most general practitioners aren't familiar with Narcolepsy and miss the symptoms. Therefore, diagnosis of Narcolepsy is very rare. Which means, there are a lot of narcoleptics walking around out there who haven't been diagnosed.

It also means, newly diagnosed narcoleptics have a hell of a time finding other narcoleptics! We are quite isolated in that regard. I went on-line to find information and discussion groups and didn't come up with much. I was shocked! You can find anything on the internet today right?

Here's (in my opinion) the best of what I found on the internet:

Narcolepsy Information Site: www.narcolepsynetwork.org

Narcolepsy Research Funding & Awareness: www.wakeupnarcolepsy.org

Personal Blogs on Narcolepsy:

www. julieflygare.com (AKA the REM Runner)

www.stridesagainstnarcolepsy.com

So you would think my doctor would be able to connect me with other narcoleptic support resources, right? Not.

My sleep doctor didn't direct me to any resources. I went to a neurologist to get a second opinion and to see if she had any alternate recommendations for treatment. She did direct me to a site for rare diseases.

"Great!" I thought, "That's the resource I've been missing! Rare diseases. That's where I'll find my answers."

I went home and looked up the site right away. There was ...... nothing on narcolepsy.

Basically all the information I could find on narcolepsy said, "There is little known and most doctors miss the diagnosis." I think the fact that narcoleptics aren't getting diagnosed is why it's so hard to find other narcoleptics out there.

So I decided I would devote my blog to talking about narcolepsy and hopefully other narcoleptics can fine me and we can start connecting with others. I also want to share what works for me in managing symptoms and what ever information I find.

So here we go. I am officially starting to blog about my narcolepsy. (Don't worry. You know my running exploits will still be heavily featured here. Incidentally, the bloggers I featured above are both runners. Go figure.)

My first post will start at the beginning which actually is when I was in grade school. It's apparent to me I had narcolepsy as a kid. It seems that my symptoms got worse as an adult and finally prompted me to stop taking "We don't know." as an answer and finally find someone who was willing to help me.

I hope you'll follow along and help me raise awareness, reach out to other narcoleptics, and recognize the symptoms so others can get proper diagnosis. And I promise I'll try to make it entertaining! I would hate for you to fall asleep while learning about narcolepsy!!! Ha HA!

Before I end, I want to introduce a book my friend Julie Flygare wrote about her narcolepsy experience. It's the only book I know of that tells the story of a narcoleptic from the personal stand point. While Julie has a different type of narcolepsy than I do, it gives a great account of what it is like to live with narcolepsy. I highly recommend it!

Wide Awake and Dreaming: A Memoir of Narcolepsy 

2 comments:

Kris said...

Ahh, so you're saying I not just an incredibly boring husband?

You don't think it's fibromyalgia? I mean, you have the sleep issue, but you also complain about muscle soreness a lot during your marathon training. So look no further. You have fibromyalgia. ;)

Jill Stivers said...

Ha! Ha! Don't worry, the whole "You've got FM" thing will be in the blog for sure! :)

And no one could ever call you boring! :)