Waning memory and sanity

Yesterday, I felt very ill. So I was already not in a good place to start. In the shower, I keeled over in pain and must have struck my head because I don't remember anything and suddenly the water was cold. I don't even remember if I shaved or used conditioner.

Then yesterday, I SWEAR I was drinking a bottle of water at my desk all day. I get thirsty and go to grab it, and it's gone. I look around, but no bottle anywhere. Check the trash -- no bottle. WTF. Did I imagine I had been drinking water all day? Or did I leave it in some REALLY random spot that I'll never find? No clue.

And this morning... I walked into the shower still wearing socks. GO ME!

Back to being ill yesterday, I skipped my afternoon dose so I'd be able to sleep off the sick. It worked. I got home, crashed until I was woken up around 8pm by people demanding dinner, and then I was back in bed by 11pm (maybe earlier, can't remember). I slept really well too -- I didn't wake up and wander around in the middle of the night. Still not waking up so well. I even tried taking my pill an hour before I'm supposed to wake up, but it never works for me.

I did not skip my afternoon dose today, so we'll see how well I'm able to sleep tonight. And I'm also feeling 80% better, so that's a plus.

Meds update

Wow, I have ignored this blog horribly. I had been keeping a written sleep/symptom diary with the intention of posting it every week, but that obviously fell through the cracks.

I'm still undecided on the meds. I have noticed a definite improvement in my moods, and I don't have 3-4 major crashes a day where I need to take a nap. Even with experimenting with dosages, I'm still super sleepy all day at work and when I get home, but I can't nap. I haven't had a nap after work in weeks, which would be a good thing if I didn't still crave them. I'm just afraid that since the urge to take a nap isn't as strong as what I used to be that I'll actually wake up refreshed and not be able to sleep at night. Which brings me to my next part... I can't sleep at night! I will be so tired to the point of stumbling around so I faceplant in the bed and then I'll just lay there staring at the pillow for hours. Alternatively, if I am able to fall asleep within a reasonable amount of time, I have been waking up in the middle of the night and then been unable to fall back asleep until it's almost time to be awake for the day anyway. I'm still impossible to wake in the mornings, and this week has been particularly difficult. I overslept Monday -- luckily, my fiancé had called me at 8am to wish me a good day at work so that call woke me up and sent me into such a panic that I had no problem getting up after that. Then the past two days, I've been rolling out of bed around 7:30am (which is about 15 minutes late) and unable to shake the grogginess. This morning, I even woke with my first alarm and took a pill in hopes it would kick in for my morning routine, but it didn't.

I really don't know how to feel about this drug. I like that I'm not crashing and I'm just mellowed out all day. But I don't like that I have no energy all day and am still unable to sleep at night. My doctor said he is willing to try Xyrem if the pills caused insomnia, but seriously -- I don't have narcolepsy and I'm scared to death to try it. I've heard wonders about it for narcoleptics, but I've yet to hear anything about people with hypersomnia taking it. I do go back to the see my sleep doctor at the end of this month, so I will definitely be asking about some kind of sleep aid if things don't improve, but I'm really really hesitant about Xyrem.

OK, new meds no worky. I went to bed semi-late Sunday, so I'm not even counting Monday as a test day. I went to bed around 11pm Monday and Tuesday nights, which gives me exactly 8 hours of sleep each night. Both days I woke up same groggy (no surprise). Tuesday, the 30mg at 8am seemed to work ok but I felt the meds be pretty much gone by noon but no hard crash. I had a 20 minute nap when I got home from work and still was in bed by 11. Today, groggy all day. Took 30mg at 8am, felt it wear off by 11am, so I took another 15mg (one pill) at noon. Never kicked in, I swear. I feel like a total zombie. I might as well be off meds completely with how I feel. I fell asleep at the chiropractor's office TWICE, and I still feel like hell.

Speaking of which -- I think the first sleep thing might have been cataplexy. I was laying face down on this one table that he uses to stretch my back, and my face went limp and I remember thinking, "I hope I'm not asleep. My cheekbone is pressing onto this table and it kinda hurts" but I couldn't move. I don't know what could have triggered it, though. I didn't laugh or have any kind of emotional response from having my back stretched. Hmm.

However, the second time I fell asleep, it was definitely sleep, hah. I was laying on the table where the electrode things are on, and I had a dream about my dad being dressed up like Santa. *shrug* I still haven't un-groggified since the nap, though. Grr.

Long time, no see!

After I gave up on the daily diaries, I haven't really had much to post about. I'm not having a fantastic home life right now, so keeping up with my sleep hasn't been a priority at all. Really, the only change lately has been that I have started gaining weight the past few weeks, which I haven't done since I began taking meds, so it's a little disturbing to me. I think it's just a combination of me binge eating every night due to stress and the 15lbs of Kit Kats I've been consuming every day since Halloween, so no big worries. I saw my sleep doctor last week, and we're trying a controlled release version of the dextro I'd been taking. Normally, I take 20mg dextro in the AM and 10mg dextro at 1pm. With the CR, I'm going to be experimenting over the next few days or weeks to see what works best.

Today, I took 30mg of dextro CR at 8am. Feeling it wearing off around noon, but not a hard crash like regular dextro. My head is just gradually feeling more and more woozy.

Is this what I was like pre-Dx?

So is this what I was like before I realized I had a sleep disorder? I ran out of meds over the weekend and didn't get a chance to fill the new prescription yet. So today, I'm unmedicated, and I'm a clumsy, forgetful mess. I've walked right into my desk at full speed three times already. Ouch.

I went to Kroger at lunch today to fill said prescription, and that is the SLOWEST pharmacy I have ever been to. Seriously -- how long does it take you to enter in the script into the computer, realize you can't find it, and finally ask for help? It didn't help that the pharmacist there was about 90 and showed his age. So I give my Rx and a vitamin D Rx to the tech and plan to wander for about 10 minutes. I go to produce and get some sushi for lunch and some veggies for dinner... I go to cosmetics and pick out a new mascara... Then I get this feeling like I'm supposed to get something travel-sized. Just this gut feeling like I'm forgetting what it is but I know I need it. So I finally find the aisle with the travel-sized goods and start scanning. Pepto Bismol! Has to be it, right? So I can keep it with me in case the Metformin side effects kick in. No no, I only buy meds in whole packages. Can't be it. What else? I REMEMBER! LOTION! Wait, what? Lotion, really? Yeah, it was lotion I was forgetting to get... It was also lotion that I was forgetting I have about 20 small bottles of in various places like my house, my purse, my desk at work, and my car. Yeah. I forgot I was supposed to get something even though I wasn't supposed to because I forgot I already had it. THAT is how tired I am today.

So after I slap my forehead, I go back to the pharmacy. Got my dextro, but they don't have my vitamin D in their computer. Tech says another pharmacist comes in later and she'll ask him to help her find it for me and call me back. Never got the call. Kroger still has my actual paper script. Hooray! So I have to find the number there today and call and see what's up. Do they not realize what a hassle that is for someone who forgets she forgets?

It's been a while...

Oops. I just realized it's been a few weeks since I've blogged. I'm kind of giving up on the sleep diary thing. I don't see any patterns that would help me figure anything else out, and it takes a lot of energy to remember what you ate & when I went to bed the night before, so I'm just going to focus my energy elsewhere for the time being.

Well, nothing has really happened in the meantime anyway. Still sleeping a lot, but this past week, I've been having a hard time falling asleep at night, which is unusual for me. I think it's just stress, though -- the second I lay down, my mind starts racing, no matter how tired I am.

I'm out of here. Work beckons...

All you have is peanut butter???

Went to Bed Last Night: 1am?
Wakenings: none
Woke up Today: 7am
Naps: none
Meds Taken:
     • 20mg dextro @ 8am
     • 2000IU vitamin D pills (2x)
     • 10mg dextro @ 1:45pm
     • 500mg metformin @ 1:45pm

Food:
     Breakfast: nothing
     Lunch: roast beef & cheddar sandwich
     Snacks: none
     Dinner: Friday! It's Chinese buffet day!
Exercise: 40 minute walk from work to Nationwide Arena and back

Sleepiness Level: Awesome! Cold is gone, and that walk really gave me extra energy I didn't know I could have in the afternoon.
Other Notes: Woke up with the funniest dream. I was talking in my sleep and was saying, "What?? You only have peanut butter at this party???" I didn't realize I was saying it out loud as I was hitting my snooze button, but I was. :) I was at a party, and all they were serving was a jar of peanut butter with a spoon stuck in it. So I smacked the jar off the plate it was on (which turned out to be my snooze button).

a little better

Went to Bed Last Night: 9pm
Wakenings: 11pm-2am
Woke up Today: 7:15am
Naps: 6-7:30pm
Meds Taken:
     • 600mg Advil @ 11pm
     • 1 Mucinex @ 11pm
     • 20mg dextro @ 8am
     • 400mg Advil @ 8am
     • 1 Mucinex (NOT the decongestant kind) @ 8am
     • 2000IU vitamin D pills (2x)
     • 10mg dextro @ 1:15pm
     • 500mg metformin @ 3pm

Food:
     Breakfast: picked at a granola bar for a few hours this morning (same as yesterday)
     Lunch: 6" sub from Penn Station (chicken, artichokes, mushrooms) @ 3pm
     Snacks: rest of the Miss Vickie's chips from yesterday @ 1:15pm
     Dinner: Chipotle – about 5 bites of my burrito and chips w/ guac
Exercise: none

Sleepiness Level: Awake but I'm pretty drained. (Same as yesterday)
Other Notes: Hardly slept at all last night. Was either too hot, too cold, too achy, Todd snored too loud, Todd turned the TV on too loud, cats knocked over a glass downstairs, cat meowing like nuts because she captured a bug, etc. I'm actually the same sleepiness level I usually am, but add in some physical exhaustion from the cold. It's getting better, since I'm hardly stuffed anymore. Now I just have random sneezes and a pesky cough.

sick as a sick dog

Went to Bed Last Night: 11:00pm
Wakenings: about 20 minutes around 2am thanks to my face caving in
Woke up Today: 7:15am
Naps: none
Meds Taken:
     • 600mg Advil @ 2am
     • 20mg dextro @ 8am
     • 400mg Advil @ 8am, 8pm
     • 1 Mucinex (NOT the decongestant kind) @ 8am, 1pm, 8pm
     • 2000IU vitamin D pills (2x)
     • 10mg dextro @ 1:15pm
     • 500mg metformin @ 1:15pm

Food:
     Breakfast: picked at a granola bar for a few hours this morning
     Lunch: small turkey ranch sub on wheat, a few (around 3-4) Miss Vickie's chips, bottle of sweet tea
     Snacks: none
     Dinner: sushi from Kroger, cupcake
Exercise: 20 minute walk during lunch break (got lost trying to walk to Quiznos)

Sleepiness Level: Awake but I'm pretty drained.
Other Notes: Cold is getting worse. I'm all stuffy, which I guess is better than all drippy. I did my neti pot last night about 4 times and an insane amount of crud was coming out every time. Same thing with this morning's neti flush. Considering I can't take cold medicines with decongestants due to drug interactions, I have to be creative on how to kick a cold.

I've been slacking on my sleep diary. Nothing exciting has happened in the meantime. I've been getting sick to my stomach like clockwork every day last week from the metformin, so on Friday, I skipped my afternoon dose and was fine. Was fine all weekend, even though I slept a lot like usual. Then this morning, I woke up with the sore throat from hell. I didn't feel stuffy, but judging by my neti pot results, I sure was congested. I've been hoping I'd start feeling better throughout the day, but alas, just more pain.

Went to Bed Last Night: 12:00am
Wakenings: a few times to check the clock
Woke up Today: 7:10am
Naps: 6-7:20pm
Meds Taken:
     • 20mg dextro @ 8am
     • 2000IU vitamin D pills (2x)
     • 10mg dextro @ 1:15pm
     • 500mg metformin @ 1:15pm

Food:
     Breakfast: none
     Lunch: 3/4 can of Amy's Organic lentil soup
     Snacks: 1/2 of a stick of cheese
     Dinner: roast beef sammy from Arbys, a few curly fries (blech), and Diet Coke
Exercise: sneezing

Sleepiness Level: OK, but physically tired today.
Other Notes:

Today I fell asleep walking down the hall at work. Go me. I have got to stick to an earlier bed time like I used to do before getting diagnosed. :/

Yes, it's super late, and I'm pretty much dead. I've had to wipe drool a few times sitting here, but I'm on a hunt. I'm trying to google information about contrast MRIs, EEGs, and sleep disorders (specifically hypersomnia), and I'm not having much luck. What exactly do the doctors expect to find? I've never had a head injury, so I don't know. I do have chronic sinus problems and a deviated septum, so is it possible that my misshapen skull is to blame for my defective hypothalmus? I don't know. I don't think anyone really knows, and it's frustrating, and my tiredness isn't helping the frustration and vice versa.

OK my typing is horrible when I'm this tired and the fact that I'm crying during commercials on TV tells me I am way beyond tired. No wonder I always thought I was losing my mind. I should have always found it suspicious that my depression went away with naps. Hmmph.

My forehead is slowly healing, by the way. The skin is still a little scaly, but it's not three big red dots like it was on Friday. My bruise on my elbow from the MRI is still present, but now it's just a greenish yellow that's spread a bit farther than before. If bruises photographed better, I'd keep track of it.

OK brain got heavy. Must go before I'm unable to walk up the stairs to the bed.

Acetones r poysen

Can you see them? I still have three dots on my forehead from the EEG electrodes. Not only are they red dots, but the skin has a different texture than the rest. Yes, it's burnt. Burnt! The redness has gotten better since yesterday (my boss actually laughed at the marks when I got in the office), but the texture is just getting drier and crackly, despite the amounts of lotion I'm using.

Anyone have any suggestions? :(

Went to Bed Last Night: midnight, maybe?
Wakenings: none
Woke up Today: 10:45am
Naps: none
Meds Taken:
     • 20mg dextro @ 11am
     • 1000mg metformin @ 11am
     • 1 spray of Veramyst @ 2pm
     • 500mg metformin @ 10pm
     • 2000IU vitamin D pills (2x)

Food:
     Breakfast: a mini bagel (1.4 oz) with fat-free cream cheese and sugar free jam, 1 tbsp peanut butter w/ celery
     Lunch: none
     Snacks: Coke Icee @ 6:30pm (needed a fast bloog sugar boost since I hadn't eaten or taken my amphetamines since the morning)
     Dinner: Football food! 6 oz. ribeye, 6 shrimp, 6 asparagus, 3 freakishly large brussels sprouts, 4 bruschetta (bread, tomato, mozzarella, salt/pepper, olive oil), about 6 bleu cheese-stuffed olives... Hey, I had calories to use up since I didn't eat lunch. :) Oh! And a cupcake and two bites of Buckeye ice cream. yum yum yum. At least the food was good -- game, not so much.
Exercise: officially, none, but I have had a very busy day -- painted the bathroom, did weightlifting (aka carried a heavy basket at the store for a good hour), did a lot of up and down during the game

Sleepiness Level: OK.
Other Notes: Buckeyes blew it. Expect a major depression to kick in now. :P

Went to Bed Last Night: 11:30pm
Wakenings: just once to check the clock
Woke up Today: 6:20am
Naps: none
Meds Taken:
     • 1 spray of Veramyst @ 7am
     • 20mg dextro @ 7am
     • 500mg metformin @ 7am
     • 10mg dextro @ 1:15pm
     • 500mg metformin @ 1:15pm
     • 2000IU vitamin D pills (2x)

Food:
     Breakfast: a mini bagel (1.4 oz) with fat-free cream cheese and sugar free jam
     Lunch: 3 oz. chicken breast, baggy of celery, cottage cheese, raspberry preserves
     Snacks: I've been working on a can of Coke Zero all morning, baggy of celery intended for lunch
     Dinner: Chinese buffet (I had a lot, but I was good)
Exercise: 30-min walk -- dog hates me now

Sleepiness Level: Surprisingly OK considering I took my dextro so early, but I did take that into consideration when I decided upon drinking a Coke Zero for the day, so I bet that caffeine is helping.
Other Notes:

Went to Bed Last Night: 11:30pm
Wakenings: a few seconds around 2am to check the clock
Woke up Today: 6:00am
Naps: 15-min nap @ 1:30pm, 3-hr nap @ 4:30pm
Meds Taken:
     • 500mg metformin @ 7:00am
     • 1000IU vitamin D pills @ 7am
     • 1 spray of Veramyst @ 7:30pm
     • yes, you read right —— no dextro and no afternoon doses. couldn't take the dextro for the EEG and forgot my afternoon meds

Food:
     Breakfast: granola bar, cup of soy milk @ 7am
     Lunch: most of a 12" turkey and ham sub from Subway (w/ wheat bread, provolone, lettuce, tomato, pickles, black olives, cucumbers, salt/pepper, and spicy brown mustard) @ 1:45pm
     Snacks: munched on peanuts between 11am and 1:30pm, about 1/2 cup of shells produced.
     Dinner: sushi (spicy tuna rolls)
Exercise: none

Sleepiness Level: I would say that the 3-hour nap says it all. And no meds. I'm a cranky, tired, dizzy mess today.
Other Notes: Today is EEG day — no dextro. :( I look dumb, but I'm using a bandana that I bought my dog to camo it. It's hot pink with skulls all over it. :)

For those of y'all that wear fanny packs... c'mon!

Obscure Ben Folds Five reference: approved.

Anyhow, I look super awesome in my mobile EEG/EKG garb. Not. :P I didn't go into the office after I was done getting attached, and working from home is no peach. I could access websites fine on my Mac as far as speed goes, but since they're mostly optimized for Windows, I had to use our PC desktop to access them for certain functions. How frustrating that the PC was running super slow and kept crashing. Gah. It's only a 3-yr-old computer too -- it's more up-to-date than the PC at work, and that one doesn't crash all the time. I don't get it. Oh wait, back to the EEG stuff. So they hook up the EEG wires on my head, EKG patches on my chest, put gauze all over my head to keep the wires in place, and give me my little fanny pack that holds the machine in place.


I know I look dumb with all that stuff on to the point where I won't go in public and yet I posted it on the internet for anyone to see. But the point is for someone else who has to get the EEG done can see what it was like.

On a really cute note, this is love (the brown furry thing is my dog):

Went to Bed Last Night: midnight
Wakenings: none
Woke up Today: 7:10am
Naps: none
Meds Taken:
     • 1 spray of Veramyst @ 8am
     • 20mg dextro @ 8:45am
     • 500mg metformin @ 8:45am
     • 10mg dextro @ 1:15pm
     • 500mg metformin @ 1:15pm
     • 1000IU vitamin D pills (2x)

Food:
     Breakfast: 1/3 cup of dried cranberries
     Lunch: 6oz. chicken breast, 1/2 cup frozen spinach
     Snacks: Smart Balance popcorn
     Dinner: 3 oz. pork roast; mixed greens salad with tomatoes, cheese, and ranch dressing; cooked spinach
Exercise: none

Sleepiness Level: OK, but my eyes are getting really dry.
Other Notes: Must find time for exercise!

My days are all screwed up

I woke up thinking today was Thursday and that I had missed my EEG appointment. No worries, it's only Wednesday. Whew. I was also apparently having a pretty awesome dream when my alarm clock was going off this morning. Todd was greatly amused by it. I was on some game show where you had to do some task and then ring a buzzer (see where the alarm clock plays in?), and I guess every time the alarm would go off, I'd slap the snooze button and yell, "Haha! Got another one!" How my family hasn't committed me to a psychiatric ward before knowing about my sleep disorder is a mystery to me, lol.

I can't remember if I've mentioned before that I loathe having my blood drawn. Nobody can ever find a vein in my arm, and the 15% of people that do then have the fun of dealing with a rolling vein, whatever that means. This is why I usually have them draw blood from my hands. At the MRI yesterday, I had to have dye injected into my vein, and MA Nina was actually able to find a vein in my arm and successfully get a needle into that bugger. Congrats to her! And look, my bruise isn't as bad as I would expect either:


Normally, I get a dark purple bruise the size of Wyoming. I know the cell phone pic isn't the best quality, especially since my office is dark and I held my arm under my daylight lamp. It's a little bluer than what the photo shows, but still nothing as bad as I've had in the past. Hooray!

I've forgotten to eat lunch again. I'm off to heat me up some foods.

Happy MRI day!

I had my MRI today. Nothing super exciting besides the drive there and back. I freaking hate that side of town (Tuttle area, for you Columbusites) -- no one lets you over and everyone thinks they deserve your spot in traffic. Gah! Then on the way back, I almost got rear ended coming up to the split on I-70. Not fun! And then once I got onto Front St., there was some guy that pulled out into traffic that started having a mental breakdown afterwards. I don't know if he was honking and screaming at me, but HE was the one making the illegal maneuver from his stop sign, and I had the right away. It's not like I was doing 10mph -- I'm not that much of a stereotypical Prius driver. At least I got back to work alive, albeit with a very sore elbow from the injection.

Oh, right... Back to the MRI. Nothing exciting, as I said. Can't wear metals in there, got to listen to the radio station (lunch time requests! Why do people request "Push It" by Salt N Pepa -- seriously), took a mini nap, got the dye injected, then took another mini nap, and then it was done. I'll see my neuro at the end of the month to go over the results. Until then, I just have the EEG on Thursday to look forward to.

If anybody actually reads this, does anyone know if I'll be able to get a copy of the MRI or EEG? I'd love to frame them. :)

Went to Bed Last Night: 8:30pm (yes, for real)
Wakenings: a few -- me checking to see if Todd was in bed (twice), our dog being scared of the storm, and our cat freaking out over a stray cat on her porch outside, but nothing kept me up for over 2 minutes.
Woke up Today: 7:20am
Naps: none
Meds Taken:
     • 1 spray of Veramyst @ 8am
     • 20mg dextro @ 8am
     • 400mg Advil @ 8:35am
     • 10mg dextro @ 1:15pm

Food:
     Breakfast: a peach @ 8:15am
     Lunch: salmon fillet (about 6 oz.)
     Snacks: munched on trail mix during the morning
     Dinner: Arbys-popcorn chicken w/ buffalo sauce, mozzarella sticks, caff. free Diet Coke
Exercise: none

Sleepiness Level: OK
Other Notes: Started getting neck strain last night before bed, woke up with it still there, escalated into a pretty bad headache on the ride to work (no thanks to the idiot behind me with his brights on during the rain, grrr), but I took 2 Advil when I got in, and it's 90% gone now (9:50am).

Went to Bed Last Night: 2:00am (House marathon kept me up)
Wakenings: none
Woke up Today: 7:15am
Naps: none
Meds Taken:
     • 1 spray of Veramyst @ 8am
     • 20mg dextro @ 8:45am
     • 10mg dextro @ 1:15pm
     • 1 Alavert @ 8:30pm

Food:
     Breakfast: nothing
     Lunch: leftover chicken breast, raspberries @ 1pm
     Snacks: a peach @ 5pm
     Dinner: sushi @ 7pm
Exercise: none

Sleepiness Level: Slow day at work, plus I'm behind on sleep. I'm dragging pretty hard.
Other Notes: Waiting for my dextro prescription to come in the mail so I can make one trip to the pharmacy, so I'll start the metformin at the same time.

Endo update

Just got back from my endo appointment, so I figured I'd blog about it now before I forget everything.

New diagnosis: polycystic ovarian syndrome. It's not causing my sleepiness, but it's probably not helping either. Regardless, it does explain my other symptoms I've struggled with (no periods, weight gain, facial hair, etc.), so at least I'm moving in the right direction. Doctor seemed not so jerkish this time -- maybe I caught him on a bad day last time, or maybe I perceived him as a jerk? Dunno, but he was super nice this time, but I do get the feeling he hates the office he's working in.

I had a very bad glucose tolerance test, which means my body doesn't process sugars. My fasting level was perfect, but after 2 hours, my blood sugar was still very elevated. He suggested doing diet and exercise (derr), as well as starting me out on a diabetes drug called Glucophage/metformin.

I also have low vitamin D levels. Could this explain the tiredness? Maybe. I just got back in the office, so I haven't had a chance to google much about it. I'm going to start taking supplements for that, so we'll see how that goes.

Well, that's about it. I just wanted to type up a quick update before I forgot everything.

The week of many appointments

Here's my doctor schedule this week:

Today I see the endo to go over the test results he ran last month. I'm not incredibly nervous -- I know they'll all come back normal, as usual. I'm just anxious about how he will deliver the news. He doesn't seem to be the most understanding or compassionate doctor I've been to. If he doesn't get that I'm not all-over-body tired, then I don't know what more he can bring to the table. We'll see.

Tuesday, I go for an MRI. Not the best way to spend my lunch break, but it could be worse, I guess.

Wednesday, I see my chiropractor, who is just absolutely amazing. It hasn't added any extra energy, but I'm feeling so loose and well that I don't have to fight a tight aching back or shoulders.

Thursday, I go in the morning to have my EEG "installed." I'll miss about a half day of work, and since I'll look really dumb with all the wires all over my head, I'll be working from home the rest of the day. Unless I get there and I don't actually look too stupid, then I'll go into the office for the rest of the day. I want to make sure I keep my schedule as normal as possible so it's an accurate reading. Then I go Friday morning to have the wires removed. I'll be late for work that day too since I have to drive an hour away to get them off, then an hour home to shower, then a half hour to work. I'm not looking forward to that commute. Yuck. :P

I haven't really been keeping track of my sleep schedule this past week. Honestly, I've been too preoccupied with other things that logging onto here and adding posts hasn't even crossed my mind. Nothing major has happened, really. Yesterday, I slept almost 12 hours until about noon, and then I had a 30 minute nap around 4 or 5pm.

Labor Day Sleep-a-thon continued

Blah, I've been too busy to keep track these past few days. I've slept OK with normal hours. No nap Monday, had a 30 minute one last night. Here's for today:

Went to Bed Last Night: 11:00pm
Wakenings: none
Woke up Today: 7:30am (late!)
Naps: 7pm-7:45pm
Meds Taken:
     • BCP
     • 1 spray of Veramyst @ 8am
     • 20mg dextro @ 8:45am
     • 10mg dextro @ 1:15pm

Sleepiness Level: Had a hard time getting up, but I had an OK time at work. Crashed when I got home.

Sorry, I slept all day Saturday and forgot to post this.

Went to Bed Last Night: 1:00am
Wakenings: none
Woke up Today: 4:30pm
Naps: none
Meds Taken:
     • BCP
     • 1 spray of Veramyst @ 6pm

Food:
     Breakfast: N/A
     Lunch: N/A
     Snacks: N/A
     Dinner: cook out with grilled salmon, asparagus, and Amish baked beans
Exercise: none :(

Sleepiness Level: Half asleep all day, despite sleeping for 15 1/2 hours straight. Felt dizzy like I was going to spin into a nap several times in different body positions.
Other Notes: I missed the first Buckeye football game thanks to my neverending sleep. :(

Stormy Friday

Went to Bed Last Night: 1:30am
Wakenings: none
Woke up Today: 7:10am
Naps: 9:30-10pm
Meds Taken:
     • BCP
     • 1 spray of Veramyst @ 8am
     • 20mg dextro @ 8:00am
     • 10mg dextro @ 1:15pm
     • 1 spray of Veramyst @ 11pm
     • 1 Alavert (10mg Loratadine) @ 11pm

Food:
     Breakfast: can of Slim Fast @ 8am
     Lunch: spicy tuna roll with brown rice sushi around 1pm (took about an hour to eat it)
     Snacks: 100 calorie pack of chocolate chips cookies
     Dinner: Chinese buffet @ 7pm
Exercise: none :(

Sleepiness Level: Good. Had a busy day at work that kept me awake and a screaming 8-yr-old at night that kept me awake. :P
Other Notes: Had a possible seizure this morning about 15 minutes after I woke up. Was sitting down petting the cat and my eyes rolled up into my head but my eyes were open and I couldn't move.

Is it Friday yet? No? Crap.

Went to Bed Last Night: 12:15am
Wakenings: none
Woke up Today: 7:00am
Naps: none
Meds Taken:
     • BCP
     • 1 spray of Veramyst @ 8am
     • 20mg dextro @ 8:00am
     • 10mg dextro @ 1:15pm
     • 1 spray Veramyst @ 11pm
     • 1 Alavert (10mg Loratadine) @ 11pm

Food:
     Breakfast: can of Slim Fast @ 8am
     Lunch: leftover lo mein from take out @ 1pm
     Snacks: iced soy chai tea @ 3pm
     Dinner: sushi @ 9:30pm
Exercise: none :(

Sleepiness Level: Sluggish this morning, and the rainy day isn't helping. Gradually became more alert throughout the day.
Other Notes: Woke up this morning with no allergy symptoms. Amazing! However, my eyes are still bugging me really badly.

It's all rainy outside :(

I'm adding a food and exercise field to the sleep diary. Maybe I'll notice some foods that I should avoid or vice versa. Who knows.

---

Went to Bed Last Night: 1:30am
Wakenings: none
Woke up Today: 7:30am (laaaate!!!)
Naps: 7–7:30pm
Meds Taken:
   • BCP
   • 1 spray of Veramyst @ 8am
   • 20mg dextro @ 8:00am
   • 10mg dextro @ 1:15pm
   • 1 spray Veramyst @ 12am
   • 1 Alavert (10mg Loratadine) @ 12am

Food:
   Breakfast: can of Slim Fast @ 8am
   Lunch: none
   Snacks: grape FruitBü (organic smooshed fruit) @ 11:30am, 100 calorie pack of Grasshoppers @ 4pm
   Dinner: 6-8 chicken wings, handful of celery with bleu cheese, 5 mozzarella sticks, 3 glasses of Sweet Tea @ 9pm (bad bad, I know, but I was starrrrving)
Exercise: 60 minutes on medicine ball @ 10:30pm

Sleepiness Level: Awake but yawning. Couldn't nap if I tried. Crashed when I came home for a little, and the nap didn't leave me in a funk.
Other Notes:

Totally Tuesday

Went to Bed Last Night: 12:30am
Wakenings: none
Woke up Today: 6:50am
Naps: none
Meds Taken: 20mg dextro @ 8:00am, 10mg @ 1:15pm
Sleepiness Level: Awake but yawning. Probably couldn't nap if I tried.
Other Notes: Had a very busy night of running around to stores and didn't have a sleep attack. Hooray!

Crappy Monday

Went to Bed Last Night: 1:15am
Wakenings: none
Woke up Today: 7:20am
Naps: none
Meds Taken: 20mg dextro @ 8:00am, 10mg @ 1:15pm
Sleepiness Level: Super sleepy but stayed awake due to being so uncomfortable. Hit a second wind when I got home from work.
Other Notes: Brain is foggy and tingly all day, and my eyes are really dry.

Sleep Diary

My doctor said he'd like me to keep a sleep diary, but I kept forgetting to start one.

Went to Bed Last Night: 12:30am
Wakenings: none
Woke up Today: 11:45am
Naps: none
Meds Taken: 10mg dextro @ 1:30pm
Sleepiness Level: Pretty sluggish but not falling over.
Other Notes: Had a sleep attack at Lowes around 5:30pm (no passing out this time, though) and stayed pretty cranky the rest of the night.

Sleepy Saturday

I went out for sushi last night with two college friends, and I stayed out way too late. Normally, I go to bed within the 10 o'clock hour, but I got home around 2:30am last night. Ouch. Still, I set my alarm for 8:30 knowing I would hit snooze a few times. I had planned on getting up at a decent hour, having lunch with Todd (my fiance) and the girls (his two daughters who live with us), and then hitting up various home improvement stores to find materials for our half bath remodel. However, I woke at 11am from the kids dragging their turtle tank into the bathroom to clean it. I managed to stumble into the shower; it took forever since I played with the cat most of the time. So then I have the towel on my head and sit on the bed to see what's on HGTV. My alarm on the cell phone goes off at 1:15pm to remind me to take my meds, but I was going to go ahead and take a first dose when I was done getting dressed, so I shut off the alarm. Suddenly I look around, and it's 3:05pm. What the crap! How did I fall asleep without realizing it, and for almost two hours, nonetheless? I think that's really the most frustrating thing about IH. I have to be very vigilant about staying medicated or else I randomly drop for hours throughout the day. Or worse, I'm out and about and don't take my meds and I have low blood sugar-like symptoms and get dizzy and pass out into a nap for a few hours -- in public. No fun.

Obviously, we couldn't meet Todd for lunch, so now I'm cooking something to eat before we make our excursions. I still have to measure the bathroom to see if it's a possibility to continue our hardwood floors into there since we have an extra box of it left. Might as well use it. I also have to measure to see how much beadboard and trim I need to buy. Todd's best friend is a carpenter that does trim work for a high-end builder in Columbus, so hopefully we can get him to come out and help out. He helped us put in our hardwood floors, which was GREAT to have someone who has a general idea of what they're doing, unlike Todd and me.

Sorry about the tangent. Anyway, I just took 10mg of dextro, so hopefully I'll be ok for a few hours. The heat and humidity aren't helping my sleepiness either. If I'm a success, I just might have to post some pictures to brag about my remodel skills. It's very hard to do hard labor like that and stay awake, so if I accomplish anything, I'm pleased.

Endo lab work

I started seeing an endocrinologist last month. When I was 18, I gained a ton of weight within a few months and my periods stopped. So far, taking birth control pills haven't helped with anything, and all my lab tests (thyroid, testosterone, etc.) came back normal. After I was diagnosed with IH, I kind of attributed all that to it. I've lost about 20 lbs. since May, but I'm still on the pill so I can't say for sure what my periods are like. My family doctor and sleep doctor both agreed that I should see a specialist to see if I'm dealing with the chicken or the egg, so off I went.

Let's just sum up my first appointment with him by saying I was not impressed... Not impressed to the point of crying in his office. Nice, eh? Granted, I was unmedicated at the moment so I was pretty easy to push. I had a bunch of blood drawn and was told I needed to come back some other morning to do a glucose tolerance test.

I went in yesterday morning to take the test, and oh boy was that fun. :P I couldn't eat anything in the morning, and I had to be there at 7:30am, which is usually when I wake up. Plus, I didn't take my dextro since it upsets my stomach if I don't take it with food. Strike three. The tech tries to stick my arm, and I can feel it's not working well. I tell her that most people have problems with my veins so she's free to use my hand instead, which she does.


I drink a horribly nasty rancid Kool-Aid and get my blood drawn in intervals. What a waste of 3 hours.

I go back September 8 for my follow-up with the endo to review my results, so fingers cross that something actually shows up. I do see a neurologist before then, though, and I'm pretty sure she'll have more answers for me than this idiot endo guy.

First post

Ah, the inaugural post. I feel it should be something profound, but I'm afraid it's not in me. I'm a sleeper who is always sleepy. That about sums it up. Technically, my diagnosis is idiopathic hypersomnia, but my doctor still has a big question mark over Narcolepsy because he thinks I'm having cataplexy, which isn't a symptom of IH.

I suppose I should explain my journey so far. I have always been an excellent sleeper, which is something that never bothered my parents until I was a teen and sleeping 16 hours a day and even more during the summer breaks. However, I just thought I was repaying a sleep debt so I never considered seeing a doctor about it. Jump forward to March 2008 when I visited my family doctor for a sinus infection, and he saw my tonsils were big (always have been). My two options of getting them removed were to see an ear/nose/throat doc, who rarely removes tonsils anymore especially at my age, or to see a sleep doctor and hope they block my airways enough for him to OK the surgery. The first appointment happened to be with the sleep doctor, who said since I didn't snore or have apnea symptoms, he's going to have to decline the surgery. However, I answered this patient questionnaire with some answers suggesting I had narcolepsy. (Did you know it's not normal to be able to dream while you're awake and have stuff walking around in your bedroom? Yeah, neither did I.) So I did my overnight test (PSG) and stayed the next day to take monitored naps (MSLT). I got the results back a few weeks later, and he said I only had REM sleep in one nap, which wasn't enough of them to get a diagnosis of narcolepsy. Also, I slept pretty soundly and normally through the night (not normal for narcolepsy), but I did fall asleep in every single nap under 10 minutes, which isn't normal. So basically, IH is a diagnosis of yes you're overly sleepy but for no apparent reason.

I did end up getting my tonsils out by the ENT doc, but I haven't seen any improvement in my sleep quality. After I healed from the surgery, I started taking stimulants to keep me awake during the day. Tried Provigil, which is supposed to be this wonder drug, but it didn't work AT ALL for me -- just made my joints hurt really bad. So the doc put me on dextroamphetamine/dexedrine. I've been kind of left on my own to figure out what dosage works best for me, so after a few increases, I now take 20mg in the morning and 10mg at lunch. I like it except for the crash I have around 6pm, still leaving me with having to take a nap after work.

I'm not even close to being done with this story, but it's time for me to leave, so more background story to come until I'm caught up and posting in the present tense. :)