Xyrem Starting Dose - does this sound right?

[DrowsyinUtah]

I just got Xyrem and on the label, it says:

" Take 6ml (3gm) by mouth diluted in 2 ounces of water at bedtime and repeat 2.5-4 hours after first dose for 2 weeks, then increase to 7ml (3.5 gm) per dose for 2 weeks and finally increase to 8ml (4 gm) per dose as directed. "

Does that sound like a high starting dose? Should I double check this? And, are ml and gm the same or is 1 gm equal to 2 ml?

Thanks!

[DrowsyinUtah]

Things went pretty well on this dose... Just fyi...

[ctrled_nrg]

I that sounds right

[thexena1]

I think it varies depending on the person... I just came off Xyrem; they started me at 450ml (divided into 2 does) and according to research, this is the starting dose. I had a really bad experience with it. All the symptoms of an OD. But I seem to be sensitive to medications. REALLY WATCH FOR WARNING SIGNS.

That was the scary thing for me. I put up with the throwing up, and even wouldn't fall asleep at all after I'd taken both doses. It was a horribly terrifying experience. Hallucinations, severe depression, anxiety, total paranoia, and a huge list of other things. It totally changed my personality. My memory for the time I'd been taking it is mostly gone. Totally, gone. I hit the point where I didn't even care about anything. Huge red flags. I find drugs.com to be a really valuble source of information on my prescriptions. The advanced consumer information is invaluable, as well as their drug interaction checker.

Please, please, have someone close to you monitor everything! It creeped up on me, and I had no clue. I've documented a lot of my health problems over the last 5 years or so, and got to the point where I was too tired to even sit at the computer and type, much less figure out what was going on with me. So I bought a digital voice recorder from Best Buy, and documented some REALLY TERRIFYING (doesn't begin to describe it) things. I hope to use them to help others someday. So please have someone watch you closely. I didn't, and had no clue as to what was happening to me. It's a silent destroyer. You don't even realize what's happening.

Some have had good experiences with Xyrem. Please, just let someone else be aware for you. I thought I could do it on my own. No way. It destroyed what little hope I had left. I have never been so scared. But I was more scared after I quit taking it and realized how bad it had been.

P.S. - Also check out Stanford University's site for narcolepsy. If you want to help, get in contact with them. I wish everyone would. Then maybe someday there would be answers.

[sleepymoon]

[thexena1]

Yeah, you're probably right. I threw the stuff away (sigh... wasted money I don't have). It was probably 4.5. Just goes to show you how tired I am. My fish sleep more than I do.

[sleepymoon]

Thexena,

Just curious, were you taking Xyrem for treatment of narcolepsy?

[thexena1]

Sleepymoon:

I was given the Xyrem for narcolepsy. The narcolepsy was a very recent diagnosis; the blood test came back negative, but they think I still have it. I'm so frustrated because nothing seems to work, and any quality of life I had before I got sick (it's been about 6 or 7 years, I think...) has been totally destroyed. I'm taking Provigil, and it seems to keep me awake for a little while. But I don' t sleep, or if I do, I NEVER, EVER, feel rested. Or I wake up in an instant, just to find that my pillow, sheets and blanket are soaked with sweat. I'm lucky if I have 1 day a week that I can consider a "good" day. To me, a good day now is having enough energy to try and do the dishes or laundry, and actually being able to have a thought process. It's totally disgusting and I feel so helpless.

[sleepymoon]

Thexena,

That sounds so awful...did they do an overnight sleep study? Have you had a brain MRI to rule out other causes of your symptoms? It's true that not everyone with narcolepsy responds well to Xyrem...and it could be that you have a pretty severe form of narcolepsy...but I wonder. Do you have the other classic narcolepsy symptoms? Hypnagogic hallucinations and sleep paralysis? Cataplexy?

[thexena1]

Sleepymoon:

Yeah, it's bad, but I'm not dying so I shouldn't whine... Just get REALLY frustrated sometimes because I've had so many different diagnoses. I'm not completely familiar with all of the narcolepsy terms yet (I know I've read about them, I just can't remember what I read...) Let me take a quick look at some info from NIH...

I have had a sleep study done, but get this, the doctor (one that I never saw) refuses to tell me the results. I was informed by the sleep center that my regular doctor must give me the results. My "regular doctor" is a psyciatrist, and she has no idea how to interpret their "book" of data. I was told that they would explain the findings to her, and she would report to me. I can't remember the numbers exactly, but in a 6 hour period, I had around 300 "independent limb movements", and they couldn't really monitor my breathing because it was so shallow. A guy I dated for almost 5 years told me that sometimes he would wake up and couldn't hear me breathing, so he'd actually check to see if I was still alive. I remember thinking the other numbers were pretty outrageous, too, but I can't remember what they were or what they were for...

The sleep specialist I was seeing at the same time put me on a very difficult sleep schedule to try and reset my circadian rythym. He said he strongly suspected narcolepsy, but was waiting for the blood test. He said not to waste my money on another sleep test. During that waiting period, I ran into major problems with his nurse. I was supposed to check in at least once a week, more if I was having problems. She was sitting right in front of me when he gave those instructions. I got worse and worse, and she wouldn't return my calls. The secretary caught her on the way out the door one day when I informed her that I had left messages 3 times that week, and made the urgency known but my calls were never returned. This so-called nurse made it crystal clear on the phone that I was bothering her. And she informed me in my next visit that "We don't consider not sleeping being ill. You should be at work." I almost decked her. I am terrified to drive, and never do unless I absolutely have to. Any moron knows in such a state of sleeplessness, it's just as bad as driving drunk. So I informed them that I would not be back.

I recall having several instances of paralysis, dating back to as far as when I was a teenager. Hyper-vivid nightmares, full color, every detail apparent, seemingly so real, I was so terrified I wouldn't sleep without my Mom for over a week. And I was a teenager. I have had other "episodes", one even in front of the neurologist that first diagnosed me with epilepsy. I remember being aware of my immediate surroundings, and I could hear him talking to me, but I was slumped in the chair in the corner of the office, and couldn't move. It was like he was far away, and I couldn't really grasp that he was speaking to me or trying to shake me out of it. Like I was there, but I wasn't.

The initial reason I saw a neurologist was because I lost an entire weekend. I didn't know where I'd been, if anywhere, what I'd done, nothing. It was just gone. It was even mentioned that maybe I'd gone out to a bar, and somebody spiked me drink. Ironic that I would later end up taking a med with that ingredient in for my problem, whatever it is. I've had at least 3 EEG's, was hospitalized (I remember being in a room with all kinds of wires on my head, but not much more..), a couple MRI's, 2 spinal taps, countless visits to the ER for migraines and even for not sleeping for days. The neurologists I saw disagreed on whether or not I had epilepsy. The ones out in Minneapolis even said no, then called back a month or so later and changed their minds.

My memory is so spotty, but I also recall an event at a family gathering in an upscale restuaunt. I felt awful, but made myself put on makeup and fix my hair. I remember sitting there, listening to conversations around me and not taking part. I recall somebody asking me if I was ok, but I don't know who. I remember going down the hallway (we were in a private room) and people were staring at me. It's weird. Like I can remember feelings but not what was actually happenening, or just parts of it. I have no recollection of walking down the hall. I just remember the feeling of people staring at me. Next thing I know, I'm sitting on the steps in the entrance, having no idea what happened.

Before the narcolepsy diagnosis, I called my Dr. (she actually gives her patients her cell number), freaking out because I had been hearing things. I thought I'd gone off the deep end. I was lying in bed, and I thought I heard a radio playing quietly. I even thought, "when did I have the radio on?" and turned over to look at my alarm clock. I think I was awake; my lamp was on, and I don't think I was in bed very long. I was totally confused. It was too quiet to be coming from the apartment above or below me. It was quiet outside, even though I live on a busy street, and it wasn't coming from outside. I went out to the livingroom to check my stereo, and even to my office to check my computer. Nothing.

And since then (my sleep has never been worse), I have been hearing the phone ring. Or the weather bulletin going off on TV. God, I sound like a freak. My doctor told me that it was because of severe sleep deprivation, and that it was normal when things were that bad. That doesn't make it any less terrifying. I even took both phones into my bedroom one night, and would turn over when I thought I heard them ringing. I have different rings set up for friends and family, and I was hearing those rings, not just a normal phone ringing. But the keypads weren't lighting up. They weren't ringing. I was so scared.

Now, I've just gotten used to it. I tell myself "you'd think you're on crack; knock it off and it will go away." But I still end up looking at the phones to see if they're rining. Now I don't do anything until I see the keypads light up.

I've woken up having the most terrifying nightmares. Some I can't remember visuals, but I "know" it was happening because of the feelings. Like it was actually physically happening. This is so sick, but I thought my Dad was raping me. It was simple to interpret the dream; I had just had some severe family problems, and had confided in them about sexual abuse as a child, and they turned their backs on me; I never thought Dad would betray me. So it's easy to understand WHY I dreamed it; but why it was so REAL is another story. I don't think I was fully awake, but I found my phone, don't remember dialing, and ended up in the bathroom throwing up calling my counselor and not being able to speak or breathe, I was so terrified.

Another is actually rather humorous. I woke up one morning trying to catch my fish (I have 4 aquariums, and love the little guys like any pets) that I had apparently set loose in the river, that happened to be in the mall, and was telling fishermen in boats as I was wading through knee-deep water, not to catch them, that they were mine. Hee, hee. When I totally woke up, I was out of bed and flailing around on my dresser, sending a glass of iced tea flying and making a mess. I laughed when it dawned on me what I was doing.

The event that I really think may have triggered this massive chain of different diagnoses is when I was first being treated for depression. I was under a lot of stress, but remember feeling fine at the time. I was cutting potatoes for supper with this huge kitchen knife. I'm not sure exactly what happened, but I remember looking in on myself, like I was someone else looking at me, and the "me" I was watching went from cutting potatoes and singing with the radio to plunging the knife full tilt into her chest. It happened in a split second. Like somebody took a picture. I don't know how to explain it. But I was looking at "myself", and I could see every detail in my kitchen. The ugly brown countertop I covered up, the details in the tiles on the floor, even the angle of the lighting and how many potatoes were on the wooden cutting board. But it was a flash, a split second, almost like some weird sort of "vision". And it scared the crap out of me. I remember running to the phone crying and called Mom. From there, everything went downhill. And I was, and am in no way, suicidal.

Not sure what came first, the sleep problems or the depression, but they've always gone hand-in-hand. I'd get better for 6 months or so and sleep fine, then be back to not sleeping, sleeping all of the time, not being able to fall alseep, or falling asleep easily, but waking up constantly, thinking I had slept for hours when in reality it had only been an hour or so. Recall many times when I was in college, waking up in a total panic thinking I had overslept, running with my toothbrush in one hand, and pulling on jeans with another, just to realize that it was midnight, not noon. And I always felt like I had slept all night. God, maybe I am just a head case. I swear I'm not crazy, but I wonder about it all the time.

Oh my, that got really long! If you're not tired before reading all of that, you will be now!!!

[sleepymoon]

Wow Thexena. You have an incredible story. Nothing like vivid nightmares to make life interesting. I can relate to a lot of what you've said. Loss of sense of time and confusion about night/morning...I had horrible nightmares as a kid - kidnappings, walking snakes, being beat by my mother (never happened in real life)...hearing the phone or alarm clock ring when it isn't - I actually keep my cell phone on silent and my home phone plays a song. Now my symptoms are mostly under control so I could go back to normal ring tones I suppose. Heh. But now I remember why I did that.

Your "suicidal" hallucination is so scary! You say you weren't suicidal, right? But they thought you had depression...did you agree? Did they give you meds for that? Do you look back now and think it was depression?

You didn't tire me out from such a long post...but you have sorta made me run out of words. I'm sorry you have so much to deal with. I'm concerned why the Xyrem didn't work and why it made you so sick. Are you taking anything else? I hope they will figure out something to help you.

[thexena1]

Sleepymoon:

Your kindness and willingness to listen, as well as the ability to understand have helped me in more ways than you'll ever know. I thank you so much. It amazes me that there are still people left in the world who care about others; most times it feels like there aren' t many left. You helped give me the hope I had lost. I can't find the words to express my gratitude to you. I thank you from the bottom of my heart.

Unfortunately, I don't remember if I had already been diagnosed with depression at the time of that suicidal image. I'm positive that I wasn't feeling suicidal when that happened. It just hit me out of nowhere. I was terrified. I don't think I was keeping a journal back then... I wish I had. Now, I try to document as much as I can, and my digital voice recorder comes in handy... if I can remember to use it!

I read some info on this site about obtaining copies of personal medical records. I've always wondered about that and have been meaning to do it over the last couple years, but they charge you to get your own files! I recall it being at least $20, but that was years ago when I checked. And with zero income, that's not going to happen anytime soon. I'm very curious to see what's in them. I'm sure a few more pieces of the puzzle would fit.

I've been on all kinds of meds for depression, sometimes anxiety. Things seem to get better for a while, but I relapse after 6 months or so. I saw my Dr. yesterday, and we're going to try something a bit radical. She's mentioned it before, and I've wondered about it, so we're going to try. I'm currently taking Provigil and Cymbalta; going to wean myself off of them and see what happens. I can't remember the last time I wasn't on any meds. It's like I went from being a work-a-holic freak to a non-functional robot in such a short time. But like I said, since I've been sick for so long, my timeframe is all messed up, so I could be wrong. So we're going to see what happens. The possibility of side effects from the meds making things worse seems plausible to me. I've tried almost everything else, so what have I got to loose? Not sleep!!!

Though I admit that it is strange, this is the first day of my reduced dosage. 200 mg of Provigil and 30 mg of Cymbalta. I was semi-awake for most of the day. Had some massive "sleep attacks", as I've heard people describe them. But it could be that I actually slept last night. We had some really nasty weather up here, and I was totally freaked out. There were tornado warnings all around. They reported on the local news last night that there were 15 separate warnings issued, in a very short time. Started around 11 am, and went through about 5 pm. It was insane. The storm was coming right for us, actually there were many, and tornado warnings poppoing up constantly. The sky was actually GREEN. It was the strangest thing I'd ever seen.

So after it was all over, thank God no one was injured or died, most of the twisters were in rural areas. One touched down just a couple miles north of town, and that was too close for comfort. I was completely frazzled and zonked out on my uncomfortable hide-a-bed in the living room. But I don't remember waking up at all, and slept in unil 8:30.

It's strange that you said you heard your phone ringing and alarm clock. That happens to me too! Only I do have different musical rings for different people, and I hear those! Maybe I'll have to change them all to the normal ring!

My doctor talked to the Xyrem rep, and the rep thought that I may not have been on a high enough dosage, one that would knock me out, so-to-speak. I may have been wandering around not really asleep, but not awake either. I think they wanted me to try and take it again, but it really scared me, to put it mildly. So I don't know. But I did find one other board certified sleep specialist in town. She's out until October, but I'm going to try and get in as soon as I can.

Until then, if going off the meds doesn't work, stimulants are next on the list. If the next specialist doesn't work out, off to Mayo Clinic I go. So we'll see. I'm just taking it one minute at a time.

Thank you again. You are an angel.

[sleepymoon]

Thexena,

Heh well you are welcome! We are all here for the same reason - to find people who understand us and to help each other. In some ways we are all different, but in a lot of ways we are all the same.

What a story...I had wondered if your Xyrem dose was too low. You say it didn't knock you out?? That's a good sign that you needed a higher dose. Too bad it scared you so much...the right amount can do wonders...I take Xyrem and my symptoms are so well controlled that I don't usually take a stimulant. I get to work on time now...and I even seem to have a sense of time...much better than my pre-Xyrem days. No more confusion or sleep attacks or hallucinations or naps. Today I even went in for a massage and didn't fall asleep!

Just curious...would you consider trying Xyrem again at a higher dose if your new specialist gives you the option?

I would get copies of your med records if I were you. It might shed much light on your history. Usually they bill you after the fact...so you have time to scrounge up the $20.

Good luck w/the new doc and keep us posted.

Take care,

Moon