I'm Going to Go Out on a Limb Here and Call it a Comeback.

So a while back I posted rather crypticly about my new meds for my sleep disorder. Well now i'm saying it loud and proud, i've been on Xyrem.



Xyrem is a pretty controversial drug. It's basically GHB. Yes, the date rape drug. I've been taking roofies now for four months. And I feel awesome.



I don't feel awesome on the drug itself. I've been drunk twice in my life and i've never even smoked weed, so not feeling in control of my body is really strange and sort of unpleasant. But the Xyrem puts me into the deep, restful sleep I wasn't getting before and I feel so. Much. Better.



I wake up at a reasonable time in the morning now. I get through my day at work without feeling like i'm in a sleep deprivation experiment going on hour 30. I feel sleepy when I get home from work, and sometimes I lay down to rest, but i'm no longer sleeping 3-4 hours every afternoon. Most of the time I lay down for half an hour or so and get back up since I don't go to sleep and actually feel restless laying in bed. My biggest problem has been figuring out what to do with the afternoons I used to spend asleep.



A few weeks ago I spent my Saturday afternoon in the back yard with my bypass loppers and bow saw and trimmed trees that were long neglected. The Crepe Myrtles and Red Tips look like they grow in a yard of an occupied house now, instead of one that's abandoned. I've ripped down Ivy that was trying to take over a wall of my house. I've transplanted the Hostas that the previous owners foolishly planted in the sun to the shade. The only thing stopping me now is lack of money and the 90 degree heat and opressive humidity that is already here in NC.



The inside of the house is getting better too. I cleaned out my dresser and have actually been folding and putting my clothes away once they're washed. I have five bags of old things to go to Goodwill. I still have a lot to do, but now i'm actually getting some things done instead of letting it sit. Again money seems to be the one thing holding me back on most jobs.

But i'm feeling like myself again. Not like the wrung out rag that has been just getting by for the last couple of years. I'm back. And it feels really, really good.

Le Sigh...But it Leads Me to a Good Point

So last night i'm at a cook out. A cook out where the hot dogs were not coming off the grill as fast as I had hoped. So I was in the kitchen filling up on Scoops and salsa and talking to a couple of people about my Hypersomnia. One person joined us about half way in where I was describing my overwhelming need to sleep. And she goes "Isn't that depression?"

Ok, so aside from the obvious annoyance because no, I saw my psychiatrist the whole time I was on the search for a diagnosis and he re-evaluated me and found my depression to be the same and a real live doctor told me the results of the sleep study that confirmed I have a sleep disorder, this bugged me for another reason.

I've read that Narcolepsy is as common as Parkinson's Disease but that it is terribly underdiagnosed. I can believe that. When I first mentioned Narcolepsy to my primary care doctor as a reason I was so damn sleepy all the time she told me that if I was Narcoleptic I would be nodding off while talking to her. Well, maybe, and maybe not. There isn't a lot of understanding about Hypersomnia and Narcolepsy in the general public and doesn't seem to be much in the general medical community. I was lucky to have a primary care doctor who thought a sleep study was a good idea. But what if I had chalked my sleepiness and lack of interest in things (because I was tired) up to depression? Would a psychiatrist think to consider a sleep disorder if a patient wasn't responding to treatment? I would hope so, but it seems really easy to look at a patient with depression who is sleeping a lot and think that the anti-depressants might me making them more sleepy or not helping and changing the meds ten times until someone gives up or just deals the best they can with the situation.

So what i'm getting at here is if you stumble on this post and you've been seeing a psychiatrist for a while and your depression isn't any better consider that you may have a sleep disorder. You might be surprised at what you find out.

Maybe Turning a Corner

I won't go into too many details but i'm trying a new medication for my Hypersomnia starting today and i'm getting a little excited. I'm really hoping that this will be what i've been waiting for and will finally be able to live my life again the way I used to. Excelsior!

How Do You Find a Word That Means Maria?

Thought the Sound of Music Songs were out of my head, huh? Nope.

So whenever I mention my sleep disorder I always get the same question: What does it mean to have hypersomnia/narcolepsy? (Depending on which term I decided to use. Still not sure about that.) My answer always seems to fail. It always gets a litany of "I must have that, i'm so tired." Well, maybe, but probablly not. There's a difference between being tired for real reasons and just being tired because your brain is fucked up.

Having narcolepsy (i'll go with this since it's easier to type) means that I look forward to going home and going to bed.

It means when i'm walking across campus to get something signed I look at the fluffy green grass on the mall and think about how nice it would be to just snuggle up for a nap.

It means I have that same thought standing at my mailbox looking across my front yard.

It means that I feel like my blood is made of lead much of the time.

It means that episode of Seinfeld where George built the sleeping compartment under his desk is my dream.

It means that I just don't feel like doing much of anything.

It means that my options for meds are really limited and chock full of side effects.

It suuuuucks.

It's like being a cat in a human body with human responsibilities. You can't take the five naps a day like you need. You can't curl up on that sunny grass, at least not in your front yard unless you want the neighbors to talk. You have to work unless you can get disability and that's no easy or desirable task. You feel like a zombie shuffling around, except zombies don't really have much to do except seek out brains to eat. They don't have lives to enjoy or things to miss out on because they feel bad. So that world is what having narcolepsy is.

Dear Provigil: Don't Think Twice

Yes Provigil, this is the end of Us.

I know, this wasn't supposed to happen to you. You're the new hotness for sleep disorders and general wakefullness promotion. You were supposed to sweep me off my feet and make me feel better. Make me feel like doing stuff after I got home from work instead of sleeping. This was supposed to be the start of beautiful freindship that continued on and on until I grew old and you became a generic and I stuck with you for cost reasons. After all, why try a new anti-narcoleptic when you worked fine and were only $10 a month?

But that's not how it's going to be.

I gave you a second chance on the recommendation of my nuerologist. I took you back on the promise that taking 100mg of you twice a day wouldn't give me the headache and that the benefits would outweigh the fact that you interfere with my birth control. What's using a back up method when your sleep disorder is controlled and you can finally function again? Surely that's worth the hassel of hunting down the once again discontinued Today Sponge. Of course it is I told myself.

Of course like so many second chances this one failed.

You failed to provide me with any noticeable improvement with the hypersomnia. I still felt crappy. I still needed to nap on a daily basis. I still dragged myself through the day at work and went home to sleep everyday.

Granted this was when I was only taking the first 100mg dose and not the second. I feared taking that second dose reluctant to put myself in pain. But I decided Monday that a new year meant that I needed to be more compliant and go all in with this second chance. Monday I took my second dose. Tuesday I took both doses. By Tuesday afternoon I had a screaming headache.

You know how when you hit your head on something you have that really intense pain for a split second? That's what my headache felt like. Like I was constantly hitting my head on something.

I took two Imitrex that night and when that didn't get rid of the headache I took an Ambien to try and sleep it off. I still have that headache. It's more manageable, but it's there. I'm hoping it will go away once the higher levels of you are out of my system.

The headache tore it. No more. I will keep taking 100mg of you in the morning to stave off the weird withdrawal sickness I get, but I will never again take a higher dose of you. And as soon as I get a doctor to ok me going off you completely I will.

Don't be too sad though. I'm sure someday you'll find a nice girl with a sleep disorder that you can help. It really is me, not you. I'm one of the few that get terrible headaches from you. So try and buck up. As the song says, don't think twice, it's alright.

Not Oscar Bait.

So I'm starting to doubt that I have a sleep disorder. Basically I don't feel any better on the meds i'm on for the hypersomnia, and they don't seem to be having any effect at all. If anything i've noticed myself getting worse these last few months and certainly these last few weeks.

I'm on a low dose of the Provigil, but I think I should notice it doing something. The Ritalin and the Vyvanse made me jittery, but I wasn't much more awake, alert or energetic on them.

Here lately I've been getting up, taking the Provigil and needing a nap about two hours later. Yesterday I took my morning dose and my afternoon dose then went home and slept two and half hours. Clearly it's not working.

Furthering my doubt along is that I don't always feel sleepy. I want to lay down, I want to close my eyes and I can surely sleep. But I don't always feel sleepy. I often feel worn out, wrung out, generally crappy. Like i'm still getting over a flu. Like I still have Mono (that was ten years ago BTW). Like my blood is made of lead. Something is wrong here and I don't think it's that my brain is confused about whether it's day or night.

Now let me be clear about this: I am not upset with my doctors for possibly diagnosing me with the wrong thing. As far as doctors go I have rolled 20s each time. I think they have put forth a yoeman effort in trying to figure out what the hell is going on here. But fatigue is the king of non specific symptoms and it's baffled and eluded some of the best doctors in the world.

So i'm back on the treadmill of doctors appointments for the time being. At the very least it'll give me something to write about in next year's Christmas letter.

It's beginning to look a lot like...every other day the rest of the year.

So...this weekend.

Friday I mildly buzzed and watched The Nutcracker. I planned on a productive weekend of Christmas decorating. I was sooooo wrong about that.

Now this is the thing about my sleep disorder. I'm currently on Provigil. It helps a bit. I can get through my day at work without feeling like I need to nap under my desk George Costanza style. I don't feel great. I don't feel like my brain can tell the difference between night and day. But I do feel ok.

EXCEPT if I miss a dose. I have been instructed to not take the Provigil on the weekend. Well it took about three weekends for me to figure out that this isn't going to work. The first day I skip the meds I feel alright. I can tell I didn't take it, but otherwise I feel ok. But the second day without the meds...fuuuuuuuuuck. I feel like aaaaaaaass. Like I have some awful flu combined with a hangover. I want to sleep all day and when i'm awake I don't really want to move.

So why is this important? I forgot to take my meds Friday morning. So Saturday I felt like ass. In addition to this Josh was at the bar with his freinds watching the game all afternoon (Conference USA Champs bitches!) so he wasn't home to help me with the little I felt like doing and I really need him to help getting things out of the attic. When he got home from the bar at five he laid down and slept until about eight. So Saturday was shot.

Sunday I got up and went to Wal-mart, Target, Michaels, The Dollar Store and Walgreens in my usual morning grocery shopping/errand running. When I got home at eleven I needed to rest. (I still have to rest even with the Provigil. I don't sleep, but it helps me recharge.) I got up at 1:30 and ate lunch. We then went to K-mart since they were the only place I hadn't looked for a new wreath yet and I had heard that trees were being sold in the parking lot.

Now K-mart was crazy. The didn't have a wreath I liked. They didn't have the new pillows Josh needed. They did have a blood pressure machine.

At his last doctor's appointment Josh's blood pressure was a little high so they told him to keep a watch on it. So he decided this was the time. And his blood pressure was WAY high. Like both numbers in the three digit range. So I spent the rest of the time trying to convince him that he wasn't going to die RIGHT NOW. There were no trees in the parking lot and Josh was hungry because he didn't eat before we left the house like I suggested. So we called all this off and went home where Josh moped about his blood pressure and then fell asleep until about eight again. So Sunday was a bust.

Now it's Tuesday and the only sign of Christmas at our house is the stack of wrapped gifts on the hope chest because we don't have a tree to put them under.

So i'm not sure what to do. Josh is occupied the rest of this week with exams here at the university and still teaching at the community college since they have classes two weeks longer than the univeristy does.

I think my dolls will be dressed up and put out for Christmas tonight since Abigail's dress is coming in today. (I bought her Addy's Christmas dress. So pretty! It's a Civil War era style, but that's ok. Abigail likes to kick it old school.) But what about the tree? That's what really makes it feel like Christmas. I have three options.

Option 1: Wait until Josh has time to help me get things out of the attic and for us to go buy a tree. Pros: I don't have to do anything on my own that I can't handle and may lead to failure or disaster. We get to do this stuff together which is always fun. The overall awesomeness of a real North Carolina Frasier Fir. The one and only Chirstmas tree in my book. Cons: Time is slipping away and I don't want to put stuff up only to have to take it all down in a really short period of time. The wrestling with a live tree and getting it in a stand. Leaving it while we're gone and hoping it doesn't dry out too bad. Finding a place to buy a tree since the Lions Club isn't out at Wal-mart this year.

Option 2: Buy an artificial tree. Pros: I can put it up myself. It can be prelit so no fussing with lights. Prelit trees are getting more affordable. We'd have a tree ready to go if we're too broke to buy a real tree next year. All the branches are of equal strength so no fussing with heavy ornaments trying to get them on the right branch. No watering the thing. No cleaning up needles. Cons: Just not as pretty as a North Carolina Frasier Fir. Bigger out of pocket cost than a real tree. Josh still has to be there to help me get things out of the attic. We have to store the thing and the attic is getting crowded.

Option 3: Use my three foot high artificial tree. Pros: No watering or cleaning needles. We already have the thing. I can put it up. Cons: Josh will still need to help me get the ornaments from the attic. It's not prelit so i'll have to mess with lights. It will need to sit on a peice of furniture, most likely the sewing machine so the cats will have something to try and jump on the examine the thing. Since it's on the sewing machine there won't be room for many presents adn they'll have to sit on the floor. I'll feel like a cop-out for putting up a lame tree.

Josh is no help in this. He tells me it's all my decision. He does that a lot. It annoys the hell out of me. If he wants a big tree I wish he would just tell me and i'll strike Option 3 off the list and focus on 1 and 2. If he wants a real tree then i'll say ok and prepare to rally for that little outing. I need guidance dammit! It's his Christmas too! Of course him being so passive has it's positive side sometimes. This just isn't one of those times.

Of course this isn't just about the tree and the decorating. It's facing the fact that I have a chronic health problem that is going to make various parts of my life a real pain in the ass and I don't have much recourse. It's trying to be ok with my sleep disorder and meds fucking up my weekend plans and getting in the way of making the most of the time that I do have to do things.

I guess Charlie Brown isn't the only one who can take a wonderful thing like Christmas and turn it into a problem.

I really should relax and not worry about all this, but we'll be out of town of Saturday and for a few days surrounding the actual holiday so I feel like we need to get things done so we can enjoy them for as long as we can while we're here.

So I still don't know what we're going to do. We'll do something. But i'm not sure what. And that is driving me crazy!

Onward, Upward and Always Twirling, Twirling, Twirling Towards Freedom!

Well, I finally did it. I stumped Dr. Studwell. I broke his brain.

Wednesday I went in for my follow up to see how the Vyvanse was working. The answer is not very well. I've had some improvement in my wakefullness at work, but not enough to justify how high my heart rate was.

So to see if any thing was interfering with the meds blood was drawn and checked for thyroid problems, kidney and liver function, a complete blood count and glucose level.

Normal. All of it normal.

So from here he's sending me to a nuerologist. I see them on Wednesday. I'm a little concerned that i'm effed up enough to need a nuerologist, but i'm also hopeful that he will finally be able to help me.

So onward, upward, past the next star and straight on til morning.

Sigh.

My Monday-Friday Vyvanse experience:

Sometime between 7:45 and 8:00: Drag self out of bed. Pee. Put on bathrobe. Rub cats as you stumble to the kitchen. Make breakfast (usualy cereal).

8:00: Eat breakfast while watching Spongebob. Take drugs.

8:01-11:00: Feel nothing. (Note: This time block includes dressing for work, leaving for work and getting to work at 9:00.)

11:01: Vyvanse kicks in enough to make you jittery and give you tachycardia. Still feel very tired.

11:01-3:00: Feel crappy from Vyvanse side effects for remainder of day.

3:01: Leave work.

3:15: Arrive home and begin nap.

6:00: Wake from nap. Any and all Vyvanse effects are gone so you're too tired to cook dinner. Convince husband to go get fast food that is slowly killing you and making you fat and broke in the meantime.

7:00: Begin evening activites. Watch Tifuaxed programs, play Animal Crossing, Cross Stitch, etc.

10:00: Shower. Quick shower. Use regular soap because you're too tired to lather up a poof with fun girly shower gel.

10:20: Return to evening activities clean.

11:00: The best part of the day. Bedtime.

Hope on the horizion?

Maybe. Let's hope so.

Highlights:

The prevalence of the disease varies widely in different countries. In Europe and the United States, narcolepsy is roughly as common as Parkinson's disease or multiple sclerosis, affecting on average one in every 2,500 people.

There is no known cure for narcolepsy, which is often treated with stimulants to combat daytime fatigue.

An immediate family member with narcolepsy increases one's chances of having the disease by 10 to 40 times.

And to clarify, I don't has narcolepsy, but Ideopathic Hypersomnia is closely related and treated the same way. And it sucks about as much ass as actual narcolepsy so any new findings are good.

If you want to learn more or make a donation go to http://www.sleepfoundation.com/ .

Vyvanse: Not so great akshulay.

At least so far. But I would expect a central nervous system stimulant to work the first day I took it. This isn't like an antidepressant or something. It needs to be working now. NOW!

Because nothing says Fun like a black box warning and an $87 co-pay.

Where to start. I guess I should begin by bidding aduei to my ole pal Ritalin. It's been fun. Only, not since the shit never worked for more than a few days. Of course it was fun only paying $10 for my medication.

Let me back up.

I have Idiopathic Hypersomnia. It's sorta like Narcolepsy Light. 1/3 less sleep paralysis than that other sleep disorder! Cataplexy free! (Well, you can be cataplexy free with Narcolepsy too, but I digress.)

Basically my brain sucks and doesn't know when it's day and when it's night. And it tends to think it's night all the damn time. So even when i've gotten a full nine hours with no problems (i.e. sleep apnea, seizures, etc) i'm tired. Rug on valium tired. Look at my lawn from the mailbox and think how comfy it looks tired. Really, really tired.

The only real way to treat this sort of problem is with stimulants, so please don't comment that I need to exercise or eat better or get more sleep. The only way for someone with this problem to feel better and function is to use stimulants.

Now Provigil is the new hotness for these disorders, but the week I was on it I had the headache non-fucking-stop, so that's out. Ritalin has been the second choice for a long time, but after three months on it at various doses it wasn't helping. So I went to the doctor yesterday needing something new.

Now let me pause here to praise my doctor. First of all, he's hot. He reminds me of Dr. Rip Studwell on the Fairly Odd Parents. He's got the coiffed dark hair, the glasses, the manly jaw. He is, as some would say, conventionally handsome. Like the hero in every 1950's movie and TV handsome. Sigh...

He's also very smart, very nice, always explains the meds to me, and has only asked me once if my depression could be the culprit here. He also acknowledged that the Provigil could interfere with my birth control and also acknowledged that was a bad thing for me. I love it when a doctor shows me respect!

ANYway...

So the Ritalin was crap and I needed something new. He gave me Vyvanse since it has a lower risk of giving me migraines. Awesome. He also told me that it has a black box warning from the FDA about dependency. Not awesome. But I told him that I didn't think I have an addictive personality and that i've seen enough Intervention episodes to be very afraid of loosing control to a substance and that I would tell him right away if I felt that something like that was happening. He explained that this medication could cause tics and possibly mood changes. Again I assured him that anything strange would be reported to him right away. So after reassuring my doctor (it's nice to have a doctor who doesn't gloss over these things) I left with a prescription and instructions to take 30mg for a week and then go to 40mg after that.

Super. I wasn't a hopeless case after all. This could work.

I went to Walgreens last night to get the prescription filled. I was looking forward to getting up today and taking a new medication that might make me feel better. I was just like the actors in all those drug commericals thrilled that their herpes is better, that they can get an erection again, or in a newer one, taken a poo that morning. Better living through chemistry!

When my name was called I went to the counter to happily pay my $30 brand name co pay. Or $50 if the drug is really new and exotic or can be replaced by something else. (For example a freind of mine was charged $50 for Nexium since they felt that two Prilosec a day would do the same thing.) But, no matter. Wakefulness was in my reach! No fear of falling asleep on my drive home from work! No struggling to get through work! Hooray!

"Ok, that will be $87. 32."

Wait, what?

"Well, the prescription was written for 30mg for seven days and then 21 days at 40mg so we're required by law to fill them separately."

Ok, but why $87?

"Well the 21 caplets were $50 for your co pay and the seven days one was $37 which is less than your co pay would have been."

Oh. Ok. What can I do? I pulled out the charge card since paying the mortgage and all the bills has left us flat broke until Tuesday. I swiped the card and chose credit. Then a little message popped up:

$87.32 Is this amount ok?

Uh, no, it's not ok. It's too damn much for 28 pills. I'll give you the $50 co pay for the 40mg. But I want to know how much those seven 30mg would have been each. So we'll say a month supply is 30 pills at $50, that comes out to about $1.67 per pill. So $11.69 for seven. That's what I want to pay for those. I think that's fair. Sadly, Blue Cross disagress.

So I said yes, it's ok and left with my drugs much less excited. Of course by then it was 9:00 and I was about an hour away from turning into a pumpkin so I wouldn't have been too excited then even if my drugs were free.

So it's me and you now Vyvanse. I'm taking some fairly serious risks for you, not to mention your cost. You had better be worth it.

Dear Walgreens,

I know you've switching my Ritalin with Tic-Tacs. Fess up. I should not feel this shitty a mere two hours after taking my Ritalin. I don't know what sort of sick person would change out someone's sleep disorder meds with breath mints but you hired them. I demand a return of my $10 co-pay, an apology and a $500 gift card to compensate me for feeling so shitty all the time I should have been feeling better had I been getting my meds.

If you do not comply I will be forced to stage a sleep-in protest at your store until my demands are met.

You have 48 hours to respond.

Geekbride

It's me, in cat form.