(Note: Lest the post title confuse anyone, this post is not about babies taking Xyrem and Ambien. The first part of the post is about babies. The second part is about Ambien and Xyrem.)

I took my car to the local dealership this afternoon to get an oil change and have them look at an intermittent problem I’ve been having with the radio display. I checked Facebook on my phone about an hour into the wait and saw a post from WOOD TV-8 that linked to an article with a headline of “Dead newborn in trash; mom charged”. This instantly got me sad, mad, and perplexed. I still struggle with the “Why?” questions and reading that story got me started asking them again. Why was our son born brain-dead and thus could not live, while this other infant was very probably born relatively healthy and would have lived had his mother loved him and cared for him properly. (Yes, I’m making some assumptions about this mother and her baby – assumptions that might not be correct.) It just doesn’t seem fair. We loved our son sooooo much and had a nice warm home for him with loving siblings…and we couldn’t keep him. And all across the country – the world, even – mothers give birth to babies that are unwanted, unloved, unimportant to any human beings that should care about them….and so many of them die as a result.

A few minutes after reading that article, a young woman entered the dealership waiting room carrying a baby in a car seat. She struck up a conversation about babies with another woman in the waiting room and at one point she said, “I like babies as long as they’re somebody elses, as long as I can give them back at the end of the day and not have to deal with the crying and fussing.” I’ve heard other people say that in the past, and thought I understood their point of view. My view has definitely changed. I would gladly “deal” with my son’s crying and fussing if I could just have him back. So many people seemingly take their children for granted, and don’t realize how easily and quickly they could lose them. Love your children, be grateful for them, thank the Lord for them, hug them, and tell them that you love them.

~~~

I spoke with my sleep doctor recently about my narcolepsy medication. I’ve been taking Xyrem for almost a year now. It works remarkably well for me, but it’s also extremely expensive – even with insurance. My copay for a one month supply is almost $400. Thankfully I can take the Xyrem only half as often as prescribed and it still works very well. That brings the monthly cost down to just under $200 – much better, but still very expensive. The way Xyrem works is that it affects how I sleep at night. It helps me get a better quality sleep than I do when I sleep un-medicated. I started wondering if a different type of sleeping medication might give me similar benefits for a much lower cost. I asked my sleep doctor about replacing Xyrem with Ambien to see if that would help me any. She was very sympathetic to my concerns with the Xyrem cost and said she was willing to prescribe Ambien for me to try. I tried it for about a week, and was disappointed that it did not help. Not only did it not help my daytime sleepiness, it also didn’t even seem to help me sleep at night. I’d sleep okay for about 3-4 hours after taking the Ambien, but then the rest of the night I’d wake up every 30-45 minutes. I sleep better than that when I don’t take any sleeping medication at all!!! I was really disappointed that it didn’t work, because a one-month supply only cost me around $15. I’d much prefer paying $15 a month than $200!! Xyrem is just ridiculously priced. The full retail price of a typical one-month prescription for me is over $1,900. Thankfully my insurance covers a good chunk of it, but there’s still a hefty co-pay for me to take care of. Sometimes I wonder if it's really worth as much as I pay for it.

I am really struggling to stay awake today. I haven't taken my Xyrem either of the last two nights and it's really affecting me today. I've stayed up too late the last two nights, and set my alarm to wake up and take the Xyrem approximately two hours after going to bed each night. Most nights I can fit in about 3 hours of regular sleep before waking up to take my single Xyrem dose - which gives me another 4 hours of sleep. Well, it seems that two hours into my regular sleep I'm sleeping so soundly that I don't really wake up when my Xyrem alarm goes off. Last night I finally woke up about an hour after my alarm started going off. I could have taken the Xyrem then still, but I chose not to because then I would have slept in an hour later than I wanted to. I'm regretting that choice now because of how tired I am. I just want to lay my head down and go to sleep! I'm working from home so I could probably get away with it, but it would be rather unethical so I'm not going to.

It has been exactly two months since my last post. Time to get this blog moving again!

~~~

I'm still taking Xyrem every night for my narcolepsy. A single dose each night is enough to control my daytime sleepiness rather effectively. Taking the instructed two doses each night would be even better, but as expensive as Xyrem is I just can't bring myself to do that. I can stretch a one-month supply of Xyrem into two months when I only take one dose a night, and that makes the cost a little more bearable.

I'm still amazed at how well the Xyrem works. I haven't taken any of my stimulant drugs (Ritalin/methylphenidate) for over two months now. Two months!!! I used to be heavily dependent on them to just get through each day, and now I don't even need them! Xyrem truly is amazing!

~~~

I've been underweight for as long as I can remember - pretty much just skin and bones. I've generally disliked being underweight and would occassionally put some effort into gaining weight, but never had any success. I had more or less convinced myself that it was impossible for me to gain any weight, no matter what I did or tried. A couple of months ago my fiancee really encouraged me to try again and to put serious effort into it this time. She said to strive to eat more food at each meal, and eat more often between meals too. I started doing that and before long my weight started to creep up, ever so slowly. I started out around 121 pounds. After a few weeks of stuffing myself with food I reached my first target weight - 125 pounds. I was very happy! I kept working at it and got to 127 pounds - and then slacked off quite a bit in my efforts and hovered around 127-128 for several weeks. I recently started working at it a little more and my weight is slowly climbing again. My next target weight was 130 pounds, and I thought for sure I would see 130 on the scale this morning, but alas, I was just shy of the mark, weighing in at 129.5 pounds. I've been working on eating a lot today and am really hoping to see it pay off tomorrow morning when I weigh myself.

The downside to all of this is that since I've been eating a lot more my stomach presumably stretched itself out and it takes more food to fill me up now, and I get hungrier much more quickly and frequently than before as well. If I loved to eat food this wouldn't be a problem, but I don't love to eat food so being hungry so much is rather irritating. I know I shouldn't complain - thousands of people would love to have the problem I do - difficulty gaining weight.

Over the last few days I was noticing my daytime sleepiness returning to an ever-increasing extent. It hadn't reached the point of being a severe problem yet - for example, I had not fallen asleep while driving or at work - but it was definitely hampering my ability to function mentally. I had difficulty concentrating on my work and found that all too often what was running through my mind was, "I'm tired...I wish I could take a nap...I just want to sleep right now." It's difficult to pay proper attention to work any other task when you keep thinking about being tired.

Yesterday morning was no different in that regard - I was quite tired and doing a very poor job of staying on task at work. I had plans to meet a former colleague for lunch. It had been five to six years since we had last been in touch, so I didn't want to show up half-asleep and looking dazed. I decided I had better take some of my stimulants to ensure I would be awake enough for our lunch, so I took 10mg around 11:30. Thankfully it was enough to wake me up and our lunch went very well. We talked for quite some time, caught up on each other's personal and professional lives, and made plans to stay in touch. Late in the afternoon, after returning to work, I took another 10mg because I was getting very sleepy again and wanted to make sure I would be alert enough for the drive home. A few months ago when I was completely dependent on my stimulant meds, taking a single 10mg dose would have had absolutely no effect on me whatsoever. Apparently the long drug holiday from the stimulants lessened my body's resistance to them.

Last night I took a single dose of Xyrem. I was hoping to take both doses but it didn't work out. I had to get up at 6am to get ready for work, and I didn't make it to bed until about 10:45pm. I set my alarm for 2am to take the second dose, since that is the latest I can take it and still get up at 6am. I sort of woke up when the alarm went off, but immediately laid back down without taking my second dose, and next thing I knew it was 3:15am and way too late to take it. So from 3:15am until 5:30am I laid in bed, tossing and turning and getting very little sleep - maybe an hour at most during that time. Of course right around 5:30am I suddenly got really tired and could have slept for hours, except I had to get up for work at 6. And, I didn't really sleep all that well during the Xyrem phase either - I woke up several times during the first part of the night while drugged. As a result today I was extremely tired. I made it into work okay, but as soon as I got to work I started having a lot of trouble staying awake. I took 20mg of stimulants and after about half an hour wasn't noticing any difference at all so I took another 10mg. Finally about another half an hour later they finally started to kick in and I've been doing fairly well since then. I'm expecting I'll have to take some more shortly though.

I ordered my next shipment of Xyrem yesterday also. It's supposed to arrive tomorrow. I just can't get over how ridiculously expensive the stuff is!! My final copay (after insurance and the pharmacy's copay assistance program) is roughly $410. And that's for just a single month's supply of the medication. I've discovered that I can still get the benefits of the drug by taking it at a reduced dosage or just one time a night, so I can stretch the supply out for about two-and-a-half months. It's still crazy expensive though.

...well, the first phase of it anyway.

It began late in the day on the 3rd of July, and ended shortly before noon today, the 14th of July.

The experiment was to see how well I could function off of both of my narcolepsy medications - methylphenidate (aka Ritalin) and Xyrem. I had expected to make it only two or three days, but today was the 11th day. I took 10mg of methylphenidate shortly before noon today and other 10mg just a few minutes ago. That's a far cry from the 90-100mg I was taking daily not too long ago.

I'll post more details about how the last few days have been later on.

-I made it through the day without taking any of my stimulant meds. Earlier in the afternoon it was looking increasingly like I would have to take some of them (see previous post), but it never got bad enough to push me into taking any methylphenidate. It's a little after 11:30pm now and while I am a bit sleepy I'm still awake and alert enough to try to put together a blog post. Seven days now without taking any Xyrem or methylphenidate. I don't understand it but I sure am happy about it!

Since I stopped taking my Xyrem exactly one week ago I've been averaging about 7-8 hours of sleep each night. For the last couple of days I've been wondering if getting a lesser amount of sleep would be the trigger that would set off my severe EDS again. I didn't purposely set out to test this last night and today, but it worked out that way just the same. After work last night I went over to a friend's place and hung out for a couple of hours. We hadn't really talked or hung out at all in at least a couple of years so it was good to catch up on how each other has been doing. Anyway, as a result I didn't make it home until a few hours later than I usually do on a work night. And then when I got home I had a couple of things to take care of, and then I decided to stay up a little later and do some things online and read a little bit. So by the time I actually laid down to go to sleep it was midnight or a little later. I woke up at 6 when my alarm went off, and then laid in bed for the next 45 minutes waking up and dozing off every few minutes as my alarms repeated waking me up. Altogether I got probably 6 hours of good sleep last night. Today I have at times been sleepier than I've been all week. About half an hour ago I was on the verge of taking some of my stimulants, but I decided to wait a bit longer and the sleepiness subsided somewhat. I want to feel awake and function but I soooo do not want to take my stimulants. So I'm going to try to make it through the rest of the day without them. I don't know if I'm going to make it though. I can feel the sleepiness starting to return now. It's nowhere near as severe as it used to be - not yet, anyway - but it is definitely there to a lesser extent.

I was diagnosed with narcolepsy in 2003.

Well, I've made it to the end of yet another work day. No stimulants today. 5th day off of Xyrem. I did notice some more difference throughout the day in my level of sleepiness. It definitely appears to be returning to its old ways - ever so slowly.

Adding to the uncertainty of all of this is the fact that I am starting to slip back into being depressed about life in general. I know depression can cause a person to feel tired and sleepy and fatigued, so I suppose there's even the possibility that the sleepiness I'm noticing now is from being depressed and not from my Xyrem-free/stimulant-free body. Who knows. I don't think I'm all that depressed yet, so I'm fairly certain it is the N/IH and not depression. Time will tell.

I got a little more sleep last night - almost 7 hours. I noticed a difference when waking up this morning - I had a harder time waking up than I have been. This is pretty significant. Before I started taking Xyrem, waking up in the morning - or any other time - was an enormous struggle. My body would constantly be fighting me and trying to fall back asleep. I'd set multiple alarms for staggered times and either sleep right through them or turn them off in my sleep. Or I'd wake up just enough to hear the alarm and turn it off and then immediately fall back asleep. Trying to wake up was like trying to fight off a drugged state of sleep before the drugs have worn off. Once the Xyrem started helping me, I would wake up in the morning and actually feel relatively awake and I didn't have to worry about falling back asleep and fighting to stay awake. It was such a bizarre feeling for me at first. I got used to it pretty quickly though. This morning I was quickly falling back asleep after my alarms went off (still using a couple of staggered alarms, just to be safe). I wasn't as bad as I used to be, nowhere near like that. Each time I woke up enough that I think I would have been able to stay awake had I willed myself into doing so. I didn't want to though - I woke up feeling rather depressed, the bed was comfortable and warm, the room temperature was chilly, and I really just wanted to stay in bed and sleep. So I allowed myself to succumb to the sleepiness for about 45 minutes, waking up enough to hit snooze every few minutes, before finally making myself get out of bed and stay awake.

I didn't have any problems on the drive in to work. Since arriving at work I've been sleepy here and there, and a couple of times I've caught myself with my eyes closed, nearing the point of dozing off. So it would seem that with every passing day I'm getting closer and closer to the full-blown EDS symptoms of the past. I'm interested to see how the rest of this day goes.

It has now been 5 nights since I last took Xyrem. Last night I only got about 6 hours of sleep, because I stayed up later than I should have watching a couple of episodes of America's Got Talent and reading a few more pages of the book I'm currently reading. I have made it to the end of the workday today without taking any of my stimulant meds. I was quite sleepy during the day on a few occassions, and I considered taking my stimulant meds a couple of those times, but didn't actually take them. None of my sleepy episodes were anywhere near as bad as they used to get - and that was while I was taking a high amount of stimulants! I don't understand why my EDS (Excessive Daytime Sleepiness) hasn't reared its ugly head yet. The first two days off Xyrem didn't surprise me too much. I figured it would take a couple of days for my body to revert back to its old ways. But I expected it would happen gradually and noticeably and that by the 4th day I would really be struggling. It's not happening that way. The optimist in me is hoping I can continue this way for much longer - days or weeks, even. And the pessimist in me is expecting it to all come crashing down on the next day - expecting that I'll have to pump myself full of stimulants to stay awake and function during the day. We shall see!