Thursday, January 17, 2013


Not much happening on the home front. My insurance reversed it's previous decision and approved coverage for Provigil (Modafinil). Prior to me seeing the neurology sleep specialist, back when my regular neuro was saying she didn't think I had narcolepsy they said I had to try Adderall add Ritalin first. They had proof of my severe sleepiness (from the MSLT) but since she didn't believe I could possibly have so much at 23, she didn't give me that diagnosis. I'm guessing that's what stopped me from getting a medicine for narcolepsy. I start it next week. I've been back on Topamax for almost 2 weeks. A week at once a day and 4 or 5 days at twice a day and while my headache intensity is decreased, it isn't gone. I've also read Provigil causes migraines. Joy.

I increased exercise. I'd been infrequently walking 2 miles no problem so one day I decided to try for 2.5 miles. I'm not sure if it was the fact that I only took half the atenolol or lack of proper hydration but the last two laps I had frequent palps. I went with(one of) my best friend(s), Britt, 2 days later, took a whole pill, had fun, took gatorade (usually Big Daddy has water but he didn't join me last time). Zero palps. Then it rained for 2.5 days. Went 1.5 miles on the 3rd day once it quit a bit and came home to attempt some light regular exercise. If it goes well I'll update on it too. But for now I'm all snowed on. More later.

Friday, January 4, 2013

Appointment Rambles

It's 8 PM and I'm yawning my head off. We got up this morning at 7 this morning, got paid, breakfast and store. Went to my neurology appointment then to fill my prescriptions and lunch. That was it for my energy. I've been feeling off since Walmart. I'm trying to re-coup my energy. I'm full of yawns, I'll finish shortly.

Yea, shortly didn't happen. Guess yesterday really did drain all my energy. It's 5:33 AM. I've been up since 4.

So to recap. Yesterday we went to get paid then got breakfast, a charger (Big Daddy's dog chewed up all of his), and personal items. Went home and ate. Breakfast was bad. I really dislike McDonalds breakfast most of the time. Big Daddy drove me to my appointment then played angry birds on my tablet. He gets bored sitting still doing nothing. My doctor was amazed that I *really* have both narcolepsy and neurocardiogenic syncope. The neuro sleep specialist who consulted on my case never got back to them so she didn't even know I'd seen them. I couldn't remember the exact date before but I saw him on Halloween. I did tell her it was in October. I told her how he said the sleep study was positive for narcolepsy and barring proof otherwise that's what I have. She was just like "Ok". She looked and commented "Well the tilt test was positive so you really do have both." Yes, yes I do. I went on to explain how the pulmonology sleep specialist thought my NCS was cataplexy and why I knew it's not and how the neuro sleep specialist ruled out other REM disorders since I don't act out dreams. All in all she wound up calling me "special" since "complicated" sounded mean lol. She wrote me a prescription (well, sent it) but I'm not sure which and it won't be ready until tomorrow sometime since they had to order it.

Left there with an appointment for Feb 12 and went to Walmart to get my prescriptions. She called in more topamax too. We got there and it wasn't ready so we walked around (which is why I like using Walmart, regular pharmacies are too small). Got a movie for us, one for the girls and a game (well, 3 in 1) for the PS3. Can't find any multiplayer games we both really want. Got the topamax filled but the other hadn't been called in? I don't know why they'd come in 30 minutes apart. Walking around Walmart drained me. Went and got food and went hinge where I've been alternating between laying and sitting in bed since. Got tired and fell asleep just after 8, woke up long enough to scoot over and back out till 4.

We were going to watch a movie last night but that just wasn't happening. I'm already yawning and it's only 6:20. Ugh. More later.

Wednesday, January 2, 2013

Narcolepsy and Goals

So far the new year has been mellow. I did 30 minutes on the stationary bike and walked my steps a few times (the last wasn't for exercise, more necessity that just happens to be "exercise"). I need to stay on the ball and keep up with minor exercise. I can't walk the track every day but I have the bike thing in my house so as long as I feel ok I should be doing it. I haven't yet today but it's still morning.

Tomorrow I have an appointment with my neurologist. I haven't been taking the topamax but I plan on discussing it with her. I still need to find a gynecologist that accepts my insurance. I called my primary for a referral and they don't have to do that anymore, my preferred gyn doesn't accept my HMO, my old gyn doesn't accept my HMO, and the "computers are down" at my insurance company so they're supposed to call back with a list of some who accept it. Seems like the Hags of Fate have something against my reproductive organs. This is the only field I have had trouble in almost since JSmiley was born. I've had troubles multiple times just getting birth control, cycle problems, then when I finally gave in and set up an appointment, they don't accept my insurance. Fine let it slide and now again, don't accept it. It really should not be THIS hard to get care for womens health issues. I got in to my EP easier than this. If I could go through my primary they'd be the ones to handle it but no. Ugh. I'm on my last refill of birth control too (well, about to refill it).

I'm nervous about how tomorrow will go. She wasn't convinced I have narcolepsy (though I'm not sure why) but the neurology sleep specialist didn't really do anything. Just asked questions and said the test was positive so until proven otherwise, it's narcolepsy. I downloaded the ebook by Julie Flygare, Wide Awake and Dreaming. It's her memoir on living with narcolepsy with cataplexy. She's offered it free twice on Amazon so far (which is how I got it, I don't have the ability to buy new books until tax time). I read it in two sittings since I got it after 9 PM and went to bed a little while later. But I read over half in one sitting. It was inspiring in a way. I know I don't have cataplexy so it's not the same but I have NCS and IST so I think it'd kind of even up. She graduated from LAW school, ran a marath and wrote a book. I may not be able to do much but reading her book makes me want to find a goal and strive towards it. I already have minor goals, you know, first is to improve a little, to where I don't get tired/sick just by being out. I want to improve my fitness too and lose weight. Those are my goals that were already in place. I've always wanted to be a writer too but I doubt that will happen. I'll find something. Anyway. I'll write more later on (or after my appointment).

Tuesday, January 1, 2013


(Belated) goodbye 2012, hello 2013!

I woke up long enough to get my new years kiss from Big Daddy and went back to sleep.

Here's hoping 2013 is a good year!