Posted Sunday, August 24, 2008 6:58 PM
Wow...everything seems to be getting worse. I haven't slept more than 3 hours a night in days. I wish they would just give me a sleeping pill just to get some relief, but I guess the sleeping pills could cause hallucinations. Funny, I already have those lol. But in a week I'll start a new treatment. This will be for both the narcolepsy and migraines in 1. Seems too good to be true, but I'm definitely hopeful.
My eyes are constantly swollen and I look like I'm really sick. I'm starting to feel really sick as well. I never realized how hard it would get. I mean, I delt with it for so long before being diagnosed. But I guess it's more of the "I don't know how to treat you" thing that adds to the stress.
I've been thinking a lot about starting a family. I'm young and actually never thought I would want children this early. Maybe it's the fact that I know that we can't until everything is under control. I can't imagine how hard it would've been if I had already had children and then this started. I don't know how we would manage.
My husband is my rock. I think I would lose it if it wasn't for him. I don't mean that I'm going crazy, but it gets pretty depressing sometimes. I'm actually pretty happy in general. I've learned to deal with the pain of daily migraines and I wear sunglasses everyday to hide the bags under my eyes. I am living my life to the fullest that I can for now.
Thank you everyone who has left me supportive comments. I feel like you're going through this with me and it touches my heart that you care. 
Posted Saturday, August 16, 2008 7:55 PM
I haven't been able to update much. I ended up having a reaction to the last meds I was put on and had to stop them after about 3 1/2 weeks. I don't think they were working anyway, although it's hard to tell after just a short amount of time. Wouldn't it be wonderful if there was a miracle drug that would just work? I know it's all about trial and error but it's been almost 5 years since the beginning of my narcolepsy (waking when sleep narcolepsy, read previous posts to understand) and almost 3 years since the beginning of my migraines. You would think they would have figured it out. If it were only so easy.
It's a viscous circle. The hallucinations caused by the narcolepsy interrupt my REM cycle leaving me constantly tired because of the lack of good sleep. The lack of sleep causes me to have daily migraines (sometimes they last a few hours, sometimes a week or two). The migraines cause me to be stressed. The stress flairs up more hallucinations.
Right now my treatment has been switched to dealing with the migraines. It causes way too much pain, makes me stressed and makes me unreliable for work. I deal with it and just push through the day. It's a habit. So it's off meds for a couple weeks to get my body back to normal and onto some new ones in September (almost there!).
In the meantime I have started a new job and will be starting school soon. My husband has also started a new job and will be in school in September as well, so we have a lot going on. I think I would love to work in a sleep lab or in migraine research one day. Although it may be hard to see patients strugle like I am.
I know one day I will look back and be glad that this is all over. Until then I have the love and support of my husband and family to fall back on. Even in tough times there's still so much to appreciate.
Posted Sunday, July 20, 2008 7:18 PM
Ok, so the new meds aren't working. I feel like I haven't really given them a chance and feel that I have to stick it out. I can't, it's causing more pain. Why should I wait that out? I'm calling my neurologist 1st thing tomorrow morning. Hopefully they won't increase the dose like they said they would if it wasn't working. It's not that it's not working, it's making me worse.
I'm just so sick of it. I want to be able to sleep and I want to be able to get through a day without having a debilitating migraine. This past week I had to take off work for 2 days.
I don't feel that anyone really truly understands the way I feel except for my husband. Thank goodness for him because I would be out of my mind if he wasn't in my life. He puts up with my nightly hallucinations (sometimes up to 4 a night). He can hear it in my voice when I have a migraine. He understands. When I feel down about things I just have to remember how lucky I am to have someone like him. That cheers me up a bit 
Posted Friday, July 11, 2008 7:38 PM
Ok so it's been forever and a day since I last posted. That's because things got way worse. Daily migraines and hallucinating at least 3 times a night (if you're confused read my older entries).
I just had another neurologist appointment and am now on another med. The last one obviously didn't work. This new med only treats the migraines, not the narcolepsy. I'm ok with that for now because waking up doesn't hurt, migraines do.I had an eeg to check my brain activity under stress and everything came out normal. I'm pretty sure that my brain is used to stress...with no sleep and daily migraines I'm suprised it hasn't kicked the stinker.
So far this new med sucks. It has actually been causing migraines. I have to be on it for another 2 weeks before they'll let me switch. That should be when my body is adjusted to it. I'm crossing my fingers.
I honestly feel like breaking down and crying so often. People always look at me and ask me if I'm ok. My face is starting to show what I am going through. I constantly look tired. No amount of makeup fixes the dark circles under my eyes. I don't really care much about how I look.
To end this on a happy note I'm actually a pretty happy person. Even though I'm dealing with this situation, I have great family and friends, a wonderful loving husband and the best pets. I just had my 24th birthday and had a lot of fun. I act as normal as possible and have learned to deal with the pain and lack of sleep. Some people have no clue what I'm going through because I'm so happy (aside from the dark circles).
As far as the new meds...keep your fingers crossed for me!
Posted Sunday, April 20, 2008 9:12 PM
The truth about narcolepsy:
Narcolepsy isn't a condition where you fall asleep randomly, although that is what most people know it as. It is a condition where the brain doesn't have the ability to regulate the sleep/wake cycles regularly.
The cause of narcolepsy is not yet determined. Possibly genetic...maybe caused by an autoimmune disease...who knows?
81% of people with narcolepsy suffer from migraines.
There is no cure. There are treatments and it is a matter of finding the right one.
Narcolepsy is a life-long condition. Symptoms can change causing treatment and lifestyle to change.
The hardest thing for me is having to deal with this for the rest of my life. I have only been diagnosed for just over a week now, and I am feeling fed up. I've been suffering for 4 years and yes, I'm happy to have a diagnosis...I just wish there was something more that could be done.
It is hard making adjustments to my life. I still try to push through the sleepiness. I have thought for so long that if I take a nap during the day I won't sleep well at night. I never saw a correlation with this but it is what I grew up hearing. Truth is, I need to nap. It is what will keep my body functioning. It's just a matter of getting on a schedule.
I have been keeping a journal of when I get very tired, my migraines and my hallucinations (if you haven't read my last blog I go more into detail about these there). Hopefully there will be a pattern that will help me decide when to sleep.
This past week has been harder than normal to get through (probably because I have a diagnosis and know it will be a long road to get this under control). My emotions are up and down. Nothing yet is improving with the treatment but only time will tell.
Posted Wednesday, April 16, 2008 9:19 PM
As I am writing this I am oh so tired. I also have had a migraine now for about 27 hours and I don't see it breaking soon.
I recently (about 6 days ago) finally received a very very rare diagnosis from my neurologist. I have a sleep disorder most people only know half the story. I am narcoleptic. That does not mean that I fall asleep in my soup. Actually, quite the opposite. Narcolepsy is actually a pattern in the REM (rapid eye movement...it happens in the stage of sleep where you dream and where you get the "much needed" rest). Most narcoleptics have REM or "fall asleep" during the day. I wake up at night. In other words, most times when I hit REM, my eyes open and I dream awake for a few moments. It can actually be quite scary because they are like hallucinations. They are actually called "hypnopompic hallucinations". For some reason my mind just can't grasp that it isn't happening, even though I know I have this. I always think they are real until they wear off and I feel embarassed.
Basically, I don't get the same quality of sleep most people get. My REM gets interrupted and it is hard to get back to sleep after hallucinating. I have to relax a little to get my heart rate back down.
I sometimed dread going to sleep because I almost feel like, "What's the point?". I never feel rested and I now have daily migraines because of the lack of sleep. I become depressed at times. Today I just cried because I needed a good one. It felt good.
On a lighter note, I am happy I have a diagnosis. I've been on a treatment since my diagnosis and am hoping to eventually be cured. So far I have had no improvement with treatment and it has made me feel very sick, but I've never had to take medication daily, so I'm sure my body is just getting used to it.
I have had this for almost 4 years now but most Drs thought I was crazy. It feels good not to be. My migraines started almost 2 years ago (and I now know it's because of the lack of sleep).
DH has been wonderful and he married me even though I jump up in the middle of the night saying and doing crazy things. I love him to death for sticking by me though all of this.
Why did I choose to write this as my first post in my blog? I guess mainly 2 reasons. 1- It's what's happening in my life now. 2- I'd love for people to understand both sides of narcolepsy.