light u[ my life

[parnelli]

Remember when you were first diagnosed with N--you felt so relieved to know you weren't insane or had MS, etc.--It felt like someone opened up a door for you. Unfortunately, that door opened to a brick wall when you found out there were no treatments to make you feel "normal." Well, this message board is like light coming thru that brick wall for me. Keep posting and sharing. It's so good to know others understand!!

[snoopy]

i agree this seems to be a good release of feeling and thoughts so much feelings have rushed through my mind since i found out and it seems like we have more insight than what the doctors reveal...GOOD DAY...

[LoveMyPillow]

Hi parnelli,

Welcome aboard!

yup, i know that door that u speak of, I am sure many of us do. I recall leaving the doctor's office very confused yet very relieved to know that I was not crazy!

I also know of that WALL that you speak of!

THE WALL tends to bring out many emotions

With this support maybe we can help each other knock that WALL down a little bit at a time!

Pillow <<~~~who is having a much better morning!

[ August 23, 2001: Message edited by: LoveMyPillow ]

[Lisa]

Through my own research, because of the lack of help I was receiving from doctors, I discovered on my own what I had.

When I was finally diagnosed and discovered that I was right, and that I wasn't crazy or depressed I was ecstatic. My mother thought I was crazy then. She cried and apologized to me for a week for all the times that she yelled at me for being lazy. She felt so guilty, and couldn't understand why I was so happy to hear such terrible news. I explained to her it was because I finally had a name to go with the behaviours I was exhibiting and now had proof that I wasn't nuts.

Your right though. That elated feeling didn't last long. But at least now I don't feel guilty for taking a nap and I finally have support from my family and friends.

These boards have been a tremendous source of comfort to me as well.

[lisa renee]

Parnelli,
I am at that stage! I have been about to go crazy wanting a name for my problem. I am seeing doctors that believe I have N. They want to do the MSLT in a couple of weeks. I have had the sleep study done at night. I am having a hard time getting the doctors and my insurance to line out. Anyway I also see some of the reality of what is ahead of me if I do have N. Because of this message board. I am glad I have warning though and future support. I feel like the people I work with don't believe how bad I feel. If I mention falling asleep driving the act like I'm exagerating. Some people in my family says to go to bed earlier. Or "What are you taking that makes you so sleepy." It is really starting to get on my nerves. Back to finding out what is wrong with me. I feel I need answers to this so I can change to the next problem dealing with it.
Faith

[lisa renee]

Anybody and Everybody:
After reading about confused, I must admit I have been scared about the future sleep study I'm going to have because the doctor feels sure I have N. and that the test will show it, but what if I doesn't then what? Every time a doctor can't prove why I'm having so much trouble with being sleepy, lethargic, fatigued, memory loss, etc. They just leave me hanging. Well just because they can't figure it out doesn't mean I automatically stop running my car of the road, fall asleep at work, etc. That scares me the way these doctors do people sometimes. Not everybody has diseases that goes by the textbook do they? My next worry is it is several weeks until my sleep study, several weeks until I might get some answers or will I. I need more info on N. I don't have cataplexy, or the numbness. Does people with N. always have these symptoms.?

Faith

[Lisa]

faith,
not everyone with Narcolepsy has Cataplexy. In fact, I have read many times over that less than 2% of PWN actually suffer from ALL the symptoms. Those symptons, I believe from my recollection are:

EDS-Excessive Daytime Sleepiness-the falling asleep suddenly without your control or even knowledge sometimes, being tired all day

Cataplexy-the loss of muscle control to any part of your body. Sometimes it is isolated to one part of your body, sometimes it can be a total body collapse. Usually brought on by intense emotion, even silent emotions, like thinking about something that upsets you. Emotions like anger, stress, laughter, etc.

Hynogogic Hallucinations-when your in that in-between stage. Your partially awake but yet you are in REM sleep so you feel like what you are seeing or feeling is actually there, when it isn't.

Paralyzation-upon waking or falling asleep, the inability to move for several minutes or longer.

Automatic Behaviour-when you continue to do something that you do often, like driving, writing, washing dishes, anything--but you have no memory of doing so. You are actually asleep and in dream mode. Your brain misfires into REM sleep, but your body continues to move. Usually lasts, for me, for about 10-20 minutes. I often describe it as sleepwalking.

Not everyone with Narcolepsy has All of these symptoms. Most usually have 1 or 2, according to current research, the most common being EDS and Cataplexy. So, if you don't exhibit all of these, don't jump to conclusions (or allow your doctor to either) that you don't have N. Your sleep study will be able to show that. You are doing the overnight study right? You will be hooked up with so much wires you'll look like Frankenstein and then they expect you to try and sleep. I found it amusing really because I couldn't see how anyone could sleep with all that stuff glued to their head. It definately is no fun, but hopefully you will have a competant doctor who knows what to look for. Get some history on him/her and find out how long he has had experience with working with sleep disorders. Most neurologists that do handle sleep disorders also handle epileptics and can sometimes be less concerned or qualified to truly deal with sleeping disorders. Meaning, they are not always considered as important by some doctors. (that has been my experience anyway). Just don't let them intimidate you. Be assertive and keep reminding yourself that you know your body better than anyone. If you disagree with your doctor or feel that he is dismissing something you feel is important then tell him. It's your life, not his. I am not a medical expert in any way. I am just giving you what I have experienced myself in hopes that it may help a little. Take care, and good luck with your study.

[snoozarama]

I was elated when I was first diagnosed, too. I thought that now I could take medication and I'd be all better. Soon I found out that I was wrong, that the medication wouldn't get me anywhere near to normal. I also thought that, having been diagnosed, people would then believe that I was not just lazy and not trying. But, no matter how I explained that I had Narcolepsy which had been diagnosed by world class neurologists, people still thought if I just try hard enough I could overcome it. I printed out reams of articles to prove to my boss that my condition was a legitimate medical problem. He eventually came to sort of understand, but my co-workers never really got it. And you can't educate the whole world, especially if it involves reading. Most people just think Narcolepsy is like the character in "Deuce Bigalow, Male Gigolo," falling into the soup every day. Maybe what we need is a big celebrity to be diagnosed with Narcolepsy - then, it would be deemed important (like spinal injuries after Christopher Reeve fell off his horse) enough for people to care about a cure. Anyway, that's enough of my venting. I am just so glad to come to this board and find other people who can understand what I'm going through and whose stories I can relate to so much. Everyone is so supportive.

[lisa renee]

Hey everybody,
I have been out for a while due to my internet server was making improvements. I have been wondering, has any of the daytime talk shows ever covered N. (not the gossip ones, the ones that try to help people) Or would that be a bad idea? OHH dag on it the baby is awake. I think she has a radar for when I get on this computor. I got to go for a while. I will try again later. Definetly tonight after Emily is down for the night.