Thursday, January 21, 2016

Life on Xyrem: 6 Months Later

I can't believe it's already been six months since I started Xyrem. It feels a lot longer yet at the same time much shorter. If you haven't read my previous posts on Xyrem I will give you a little recap...

When I first started Xyrem my idiot doctor titrated me too quickly and I ended up rampant with side effects within the first month. I lost around 30 lbs that first four weeks in addition to puking my guts out many times every day and basically stopped eating too. As a result I became pretty nonfunctional and could no longer work full time at my job so I was forced to quickly move back home to Florida to wait out the side effects in hopes that things would eventually get better.

Ensure and protein shakes became my go to at this point but the nausea was overwhelming. I started on Vitamin B6 and that actually helped my nausea, however a few months down the road I began to experience more nausea but not in the typically Xyrem format. More like food smells made my stomach turn as opposed to being nauseous in between doses or in the morning upon waking. Turns out too much B6 can cause appetite loss and nausea, so I lowered my dose down to 25 mg BID and viola! No more nausea and eating became an option finally.

It was about month 3 on Xyrem that I really started to feel better as the side effects began to go away. I have been on 3.75g 2x a night since the first month and it is absolutely my perfect dose. I sleep 4 hours on each dose and I have my bed time routine down pat to the point where I take my Xyrem in bed and within 5 minutes I am passed out like a light. It's pretty magical.

What is different now as opposed to six months ago before starting Xyrem?

The job I worked pre-Xyrem was technically full time but it was the easier job in the world. I answered the phone maybe twice an hour and in between I could watch Netflix all day long. I shit you not. They let me watch Netflix all day long. My bosses would come stand behind me and we'd watch some shows together on my tablet. Craziest job. Really boring after the initial "Wow this is the best job ever!" feeling because I never was challenged, I never had any work to do. I eventually started online classes which I did in lieu of watching Netflix which helped but still. Easy job. That was probably all I could handle just being on Provigil and still having so many N symptoms throughout the day.

I have now officially made it back to working full time (after crashing with side effects on Xyrem I had to slowly work my way back up into working) so I usually now work between 36-42 hours a week. And this is not watching Netflix kind of work. This is intensive, detail-oriented, hands on, crazy filing, and administrative duties for my mother's support coordination agency. I am using my brain more than I have used to ever since my dx. At the end of the day I go home slightly fatigued, but not N tired. Tired after accomplishing so much and being so productive. It is such a wonderful feeling!!

Another difference that anyone whose known me over the past year can easily see is I no longer pass the fuck out at 7 PM every night. That was my body's self designated bed time pre-Xyrem. Didn't matter what I was doing, where I was, etc. I would have a sleep attack and go comatose for the next 12 hours so I always made sure I was home in bed before that happened.

Now on Xyrem I can stay up as late as I want! I try to maintain a normal sleep schedule of going to bed between 11 PM - 12 AM but I could easily stay up til 2 AM or later if my heart so desired.

Waking up in the morning has now gone from a hellacious chore to something very easy. Where as before it would take me 4 hours to actually wake up as I stumbled around half-asleep until then, now I wake up 8 hours +/- 1 hour from my first dose without any alarm clocks (!!!!!!!!!!!) feeling awake and ready for the day. No alarm clocks....that's insane. I had up to 7 alarm clocks before in order to get me up in time for work and still then I overslept a half hour most days (though I timed my morning routine to take no more than 10 minutes in the event I overslept so I was never late for work thank goodness).

I think one of the best parts about Xyrem for me, except on the very rare occasion (its happened maybe 3 times over the past 6 months), is that I no longer dream. My nights previously, filled with insomnia and disturbed night time sleep, were plagued with vivid and intense night terrors. There were weeks that I would be terrified to go to sleep because of the amount of fear and anxiety I would experience throughout the night. Sometimes the next day would even be ruined because of how bad my nightmares were. So now, I take my Xyrem and pass out within 5 minutes and it is like I am dead to the world. Just blank, black space. Then I wake up for my second dose and go back to sleep and then same thing. Waking up feeling ready for the day. No dream, no anxiety, no fear, no nothing. It is such a god send to be honest. It was really funny because the other night I actually did dream but it was a really pleasant dream actually and that was a nice way to wake up, however I would take no dreams any day over what I had before.

It weird because I almost take it for granted now but I never ever fall asleep during the day anymore. Once I wake up, I don't ever fall asleep until after I take my Xyrem at night. No naps. Not really even much fatigue during the day unless I've worked hard but nothing that would bring on a sleep attack. No more microsleeps, automatic behavior, sleep paralysis, hallucinations, nada. I do still take stimulants during the day. I tried going without for a few weeks and I wasn't able to accomplish as much as I wanted without them as I would tire pretty quickly so I am definitely keeping those for now. I never had cataplexy before so that is a moot point now but hopefully staying on Xyrem will prevent me from ever possibly developing that in the future.

So is everything like perfect now and you are super woman on Xyrem? 

I wish! No, there are a few side effects that still bother me but nothing severe. The no appetite is hard because I am doing my best not to lose any more weight (Starting weight pre-Xyrem: 157 lbs to current weight now: 115 lbs). I wasn't overweight but I definitely benefited from shedding some pounds however anymore weight loss at this point would be a detriment to my health.

With the no appetite, food just doesn't appeal to me anymore like it used to. I used to be an avid choco-holic, anything chocolate I needed to have and eat immediately. Not so much anymore. Things I used to really love just don't do it for now which is difficult to reconcile sometimes.

And if I miss a dose or anything then of course my day gets screwed up and things don't work as perfectly but as a whole I feel 300% better now than I did six months ago or a year ago. I feel capable, I feel like my brain is no longer stuck in this fog and can process cognitive tasks again. I feel like my old self (pre N) in that my personality has emerged again so I am more social, more witty, more snarky, more confident. I can't do everything but I can do so much more thanks to Xyrem and feel like I can fit it among the "normal" people and no one would ever think twice about me having any disability at this point.

Wow. Everything sounds great. That must be a wonderful feeling having your life for the most part back in control. 

Xyrem has given me my life back. It was a hard journey through the bad titration and side effects but waiting it out was absolutely the right call to make, as difficult as that was. Xyrem may not work for everyone but if you are able to at least try it and stick with it for minimum 6 months (to ensure you experience full benefits and not just side effects like I did initially) I would highly recommend it.


  1. Thank goodness xylem helped you too! It's a pretty amazing thing... I never had the side effects, but everyone is a little different. I wish you the best and hope things continue to work out in your favor! :)