A few months ago, I finally started taking Xyrem (sodium oxybate) to treat my type 1 narcolepsy. It was a long and emotionally draining road to even gain access to it in the first place, but now I’ve finally had the chance to try this medication I have heard so much about for so long.
The language around Xyrem is often very polarising, ranging from a miracle drug that returns people to their former healthy selves to a dangerous risky substance that destroys people’s minds.
As with most things in life, I have found my experience has fallen somewhere in the middle ground.
Now don’t get me wrong here, Xyrem has had an amazing effect on my condition. There is no way I’d be paying the crazy amount of money that it costs if it didn’t. But this doesn’t come without some complications, so I’m writing this exhaustive post to bring both sides of the discussion to light, and give a more realistic perspective on what it can be like.
So first let me tell you about the various ways, big and small, that Xyrem has changed my life:
I now know what it feels like to actually sleep. That type of sleep where you close your eyes, open them again hours later, yet feel like only seconds have passed. Actually losing consciousness of the world around you. Previous to Xyrem, I do not remember ever having felt this, or at least not within the past decade. It was so strange that at first I thought the meds weren’t working, because I was so used to being semi-conscious the entire night that I wasn’t aware that I was sleeping. I later realised that this is the whole point!
I wake up feeling lighter. I didn’t realise previously, because it must have developed gradually, but I had been in a constant state of low/mid level pain. This hasn’t completely lifted on Xyrem, but it has lessened significantly.
My cataplexy has (almost) disappeared. Since starting xyrem, I can count the number of times I’ve had cataplexy (including partial episodes) on one hand. Over the entire six month period. Previous to Xyrem I could easily experience more than that in one day! It’s a great feeling to not have to worry about it.
I can be productive in the evenings. I used to try and do useful things at night after work, but most days it would be a constant struggle to stay awake. Now, I often don’t even take a nap between dinner and bed (which is a major achievement!) This means I have around five extra hours in the day where I can work on projects, exercise, see friends, or just actually relax without falling asleep. It’s incredible.
I have a proper bed time routine. Xyrem gives me a reason to follow the well known but tough-to-follow sleep hygiene goals of not eating for at least two hours before bed and having a regular bed time. The extra wakefulness also means that I’m not 100% exhausted before heading to bed, so I still have the energy and mental capacity to do things like washing my face and brushing my teeth every night. Previously I would often complete these tasks, but not with the daily regularity that they require. As a result my skin has really improved, because I’m not going to bed with makeup on my face half the nights of the week.
I have more confidence. I find this one a bit hard to explain, but the longer that I’ve been taking Xyrem, the more confident in myself I feel. I’ve spent a lot of time over the years coaching myself to think positively and not get overwhelmed by my perpetually low self esteem. Now, it just isn’t as difficult. I find it easier to believe that I am a capable, strong and worthy human being. I think this is partly because I’ve realised just how many difficulties I was previously dealing with (in light of having some of them lifted!)
My nails are stronger. I know it might seem like I’m stretching here, but for years my nails have been extremely weak, flexible and flakey. After months of Xyrem, I’ve noticed my nails are much more healthy and I feel like I could grow them long if I wanted to, whereas before I struggled to keep them at even a regular length without bits flaking off and breaking.
I’ve lost weight. My weight usually fluctuates by entire kilos day to day, but at the lowest point recently I’ve lost around 7kg since starting Xyrem. I think this is mostly down to the fact that I no longer snack due to sleepiness. The body naturally craves sugar & carbs (which provide us with quick energy) when we are sleepy, and I have always struggled to avoid pointless unhealthy snacks throughout the day when I am too tired to know better. This is no longer a problem at all. The weight issue is a bit more complicated for me, and I find it hard to portray it as the purely positive thing that people assume it is, but I might expand on that in a future post.
I can let things go. Previous to starting Xyrem, I would be dreaming basically non-stop all the time, so much so that it would be physically and emotionally exhausting. One of the consequences of this was that I was unable to let go of feelings that bothered me. Any past events that caused me anxiety, guilt, anger or sadness would replay in different forms throughout my dreams and hallucinations, so that these were always at the front of my mind sometimes years after the actual events. Sometimes if I was having strong emotions before sleep, my brain would create dreams that expressed the same feeling, and these would sometimes reoccur so frequently that I found it difficult to differentiate from a real memory. With Xyrem, I don’t dream much at all, and I no longer feel like I’m being held hostage by my memories and dreams. In the infamous words of Frozen, I feel like I can finally let it go.
As you can see, that’s quite a lot of benefits, and they vary greatly from big physical changes to subtle mental ones. However, there are two sides to this story, and to be honest about this whole thing I have to talk a bit about the less-positive aspects of my Xyrem experience…
The first issue I’ve been having has been with my muscles. I’ve always had a bit of a problem with cramping and twitching of my muscles (from tiny eye twitches to agonising foot cramps and everything in between) but since starting Xyrem this has increased ten fold. At one point it was becoming really distracting, as I was in quite serious pain for long periods at a time, and it made it difficult for me to do my regular exercise as even a slight strain or stretch would often set off a cramp.
I asked around about this and found that people on Xyrem have often had issues with potassium and magnesium levels. Since then I have been trying to build these up through diet and other supplements, which has definitely decreased the issue but not solved it (I am yet to build up a proper routine though, which would no doubt help to make this more effective!)
The second issue is a bit more complicated: my mental health. As someone who has had a long and complicated history with my brain (see previous posts that touch on my experience with depression and anxiety), my mental health is always my number one priority, and has been my main concern ever since I first considered pursuing Xyrem.
Before I had even started on Xyrem, still in the process of trying to gain access, I was already feeling the worst I had in years (struggling to make myself heard and feeling consistently let down by doctors who seemed to be unbothered about helping me – despite all the time, effort and money I was putting in). So I was already feeling a bit emotionally unstable from the get go.
Upon starting Xyrem I was pleased to find that I didn’t have any obvious side effects, other than some slight dizziness, but I kept worrying about the possibility that I was feeling more anxious. Typically I find any change in medication really hard to deal with, as trying to figure out how I feel and compare it to other times can be extremely anxiety-inducing in itself. I already think way too much about how I feel at any given moment! So I gave myself some time to try and calm down and settle into my new routines.
Over a couple of months, I came to find that initial worry wearing off as the benefits of the Xyrem became more apparent. It seemed like everything was going well, and I was starting to panic less about the possibility of additional anxiety. However, it was around this time that I started getting chest pains and having trouble breathing at seemingly random times. As a fairly fit person who runs regularly, I found it disconcerting to be out of breath from walking up the couple of staircases to my work every morning!
Immediately I was worried about this, because while I know anxiety can cause these symptoms, they seemed so different from any experience I’d had previously. My psychical anxiety symptoms are typically brought on immediately by my thoughts, while these symptoms seemed to come on randomly – when I wasn’t even thinking about anything that would typically distress me, or trigger things like difficulty breathing, chest pain, dizziness, or tingling extremities. This new version seemed to start with the physical sensation, which then often made me feel emotionally anxious…
I went to the doctor and had my heart checked, but nothing came out of it. While I’m happy they didn’t find anything physically wrong with me, it has put me in a frustrating position. I feel like I’m left without a concrete answer, and the possibility that it could be entirely down to my mental health is disheartening when I already feel like I’m giving my all to minimise my symptoms.
It should be said that I’ve had a few other non-medical things in my life causing external stress lately, so I don’t want to be too quick to blame Xyrem for all these changes. On the other hand, I don’t want to be blind to the very real possibility that there is a connection.
While some of this has been pretty stressful, over the past couple of years (since I started seeing a psychologist) I’ve become so much better at managing my mental state, and I’m confident in my ability to cope no matter what happens. My life at the moment is not terrible by any means and I have support when I need it.
However, I also don’t think it should be so much of an effort to maintain a level of “not-terrible”, so I’m currently talking to my doctors and weighing up my options regarding adding new medication into the mix to help with the anxiety. While there is no shame in taking medication for your mental health when needed, I’m conflicted because I want to take as little medication as possible, and also have so much trouble being objective about my moods that I can’t ever say with certainty that I feel worse than I used to…
Just a couple of related things to note here: As well as the anxiety, I’ve been having occasional periods of days where I feel quite depressed, and find my general motivation levels to be lower than before starting Xyrem (although it is hard to be sure). I also have been having a lot of trouble with the idea that I’m not feeling the way I “should” feel, i.e. happy to be on this new medication that can give me back so much of my life. Not to mention the incredible amount of guilt I feel about having access to this medication when I know so many (who arguably need it more than I do) that have no way to access it due to the astronomical cost. While I know that none of this situation is my fault, it’s tough to shake the feeling that I’m somehow being ungrateful. Discussing all of this with my psychologist though, so don’t worry, it’s well-monitored and under control!
This whole post is probably a massive overshare, but I feel like there is a lot of talk about Xyrem out there and not a lot of real accounts of people’s experience that take all the good and the bad into account.
To sum it up, the benefits of Xyrem have been amazing for me. I really do feel like I have a lot more options in life now that I have the ability to work full time and use my spare time productively. My self-esteem has improved and I feel much more like an “average” person, rather than someone who struggles to cope with many everyday activities.
However, the impact of anxiety on my life is very real and not to be discounted. I am worried that while I have all this new-found ability, I won’t be able to use it properly, and I won’t feel like I can really enjoy it. For now, I’ll keep trying to make the most of my new-found energy, and test every possible path to stay on Xyrem while also minimising its effects on my mental health.
As always, this is only reflective of my personal experience and is not intended as an indicative report or as advice of any sort. Always make any decisions regarding your medication in consultation with your doctor!