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. :)