SleepyChick's Blog

New meds, and life gets almost interesting!

2008-04-04T12:40:00Z

I saw the sleep doctor again last week. First thing: For a guy formally trained as a neurologist, he's actually a really decent, nice guy. I mean, he gets it. He gets how crappy I feel, and he gets the gravity of the whole situation on my life, and my husband's life, and I really appreciate that to no end. Let's just say my past experiences with neurologists have been... er, less than stellar?He didn't think the Xyrem could cause the spike in blood pressure I experienced (though I've heard other...(read more)

Well, Time Passes, But I'm Still Here

2008-03-09T16:05:00Z

It's been an interesting few months. Ups and downs and all around. I started the Xyrem, and got bumped up to 3 gm x 2. I felt great. Awesome.Well... I had a great morning in mid January. I mean, woke up and felt awesome. And I got in the shower, and suddenly... Well, I didn't feel so awesome. Behind my eyes hurt. My teeth hurt (weird, huh?) I felt dizzy. I had intermittent, violent headaches.I wondered a bit about my blood pressure. My blood pressure is always really low (108/68 is not unusual)....(read more)

A Diagnosis

2007-12-07T11:31:00Z

It's officially official. I have every sleep disorder known to man. Well, actually, no, it appears I have the grand daddy of the sleep disorders, which leads to the complications of other sleep disorders... I have, now, officially been diagnosed with narcolepsy.The doctors and nurses are pretty sure that the cataplexy is there, though it is almost imperceptible, and has been made more imperceptible by the psych drugs.Interesting note there, too. I have been a hallucinator since my early teens. Mostly...(read more)

Xyrem--One Week In

2007-11-25T12:49:00Z

I ended up taking my Xyrem with me on Thanksgiving (we traveled). I am glad I did. I actually managed to stay somewhat awake, feel somewhat alert and probably had the best holiday I had in a while. I decided to bring it because by a week in, it had become routine enough that I felt comfortable with it. And of course, Mr. CPAP came too.One week in on the Xyrem I feel a little bit better. Not great, not anywhere near human, but I do feel better. Honestly, I'll take any improvement anywhere. The good...(read more)

Xyrem -- The First Two Nights. I Think I'm In Love

2007-11-17T13:06:00Z

Thursday night I started taking Xyrem. I am taking a very small dose, 1.5 gm two times a night. The doctors are doing this because of my psychiatric background. They are nervous about drug interactions, and (moreso) about the fact that Xyrem can make you psychotic. Then, so can stimulants and that hasn't been a problem.Still, I appreciate greatly their caution.The first night was extremely nervewracking, and I felt a lot of different feelings, both physical and emotional, as the Xyrem took effect....(read more)

Been a Long Time

2007-10-24T10:53:00Z

It's been a long time since I wrote, and for that, I apologize. It's been up and down for me the last six or so months.I am back up on my focalin: 30 mgs a day. Not as much as I was taking, and honestly, it's not enough to really keep me going. I get a few good hours, but by 2 pm it's just a killer for me.A lot has happened. I have discovered a lot, and may be on the verge of new discoveries. I had a surgery, a minor day surgery, earlier this fall. I learned I feel absolutely awesome after...(read more)

Catching Zs, or Zs Catching Me?

2007-07-06T13:31:00Z

I ended up seeing the neurologist, like my sleep doctor suggested. She wanted me to see him to verify that it is okay to continue going on to a higher dose of focalin, since I did have something that looked suspiciously like a TIA.Well, the verdict is out. I can't go up on the focalin yet, because I'm going in for an MRA tomorrow to make sure everything's okay in the veins in my brain (an MRA is a non-invasive angiogram).I also need to go for TEE, to make sure the swelling in my leg doesn't somehow...(read more)

Sleeping on the Floor

2007-06-09T13:14:00Z

The night before last was eventful. It makes me wonder why I can't do this sort of stuff at the sleep lab. Maybe it's performance anxiety?The verdict is out whether it's truly REM Behavior Disorder (RBD) or something else, but boy, whatever it is, it makes me believe I am more active asleep than awake.About ten o'clock, almost two hours after I went to bed, I dismantled my CPAP. By dismantle I mean dismantle. I didn't just whip the mask off my face. I evidently sat up, reached over, grabbed...(read more)

The Battle Wages Onwards

2007-06-04T14:14:00Z

This sleep disorder thing is tough. I grew up with a mental illness. I pretty much have that little bit under control. Actually, it's been under control for a long time, and I've had very few problems with it. That wasn't the case for my adolescence, but compared to the mental illness, this sleep disorder thing is tough. I think a lot of it probably has to do with the fact that when I was diagnosed with the mental illness, I was young, adaptable, and the drugs were so archaic and barbaric I don't...(read more)

Just Wake Me Up When This is Over

2007-05-26T11:03:00Z

I have my MRI tomorrow morning at the crack of dawn. (Yes, Sunday morning. I love 18 hour MRI places. If only they had drive throughs).I saw my lovely sleep doctor on Thursday. She is really a great doctor, but honestly, I'd be a little afraid to cross her if I were a colleague. She's a tough cookie.But I digress. The visit started off with the respiratory therapist coming in, looking at my CPAP, calculating my hours and promptly calling me a liar. I am not sure if she was joking. She said, "You...(read more)

Slurring, Sleeping and Sweating (Ewww!)

2007-05-22T13:17:00Z

I realize I haven't given an update. Forgive me. It's been a harrowing week.It began about a week ago, with a very, very, very (very) brief moment of slurred speech. I don't remember much of it, but I was reading something aloud and managed to read the whole of the piece (twice), albeit slurred. I don't remember reading the words, I remember struggling with my tongue. It felt as though it were encased in cement.Within two minutes it was over.I went to the doctor, mentioned it to her. Seems I had...(read more)

Answers. I Want a Cure, But First I Really Want Answers.

2007-05-07T12:26:00Z

I was thinking. I know I will never have a solid diagnosis. And what ticks me off is without a solid diagnosis, how can I ever get this fixed? I mean, I know it could be well within the realm of possibility that this isn't fixable, and that's fine too... But what if it is? And I go through my life, because doctors don't think names are important, with this thing that they could totally treat?I guess I know deep in my heart that if it were something easily fixed, they'd have figured out what it is...(read more)

Curiouser and Curiouser

2007-05-05T11:29:00Z

Well, it's been almost two full weeks keeping the sleep diary (I can't believe I'm remembering to do it.) I've learned a few more things since I last posted.I don't think I really sleep that much more than the average person. I don't know. I average about 9 or so hours a night. With awakenings, of course, but honestly I don't think I'm awake for more than 45 seconds or so.Then, I take naps. They're spread out over the course of the day, some days. Some days they are clustered. Some days I take two,...(read more)

Well, This is New! Sleep Diaries

2007-04-29T16:03:00Z

So at my doctor's request, I am keeping a sleep diary. Been at it about a week. The conclusion I've come to... I sleep way too much!I record when I go to bed at night, how long it takes me to fall asleep (I guess at that, because I have no concept of time in general) and how many times I wake up. This is usually a guess too. I am never awake more than 1-2 minutes during an awakening. I also record final wake time and the time I get out of bed. Strangely, I have no problems getting out of bed, usually,...(read more)

It's Spring! Time to Rotate the Pillows!

2007-04-21T18:39:00Z

Seriously, it's a beautiful day. And I am sleeping better. And I still feel like a bus ran over me. The CPAP pressure has been crankin' at 11 cm for about a little over a month now, with absolutely no effect on the excessive day time sleepiness. I would have figured I would have started to notice something by now.I do most definitely sleep better at night. But it's having zero impact during the day. It blows, because it's so beautiful out, and I'd love to be out enjoying it. But it's about all I...(read more)