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!
Thank you so much for sharing this!
I think you nailed it about the confidence. I didn’t realize how sick I was until the narcolepsy was ACTUALLY being treated with xyrem and not a bandaid like stimulants. I’ve spent so much time feeling bad about my inability to do simple things – and complicated things that I know myself to be intellectually capable – and starting treatment helped me see which of those limitations I AM responsible for and which of those things my narcolepsy is responsible for. All of that has also helped me communicate my needs better in all of my relationships. It’s magical!
I’ve been lucky to not experience what I think is xylem-related anxiety (*knock on wood*) but it is definitely something we’ve been monitoring closely as I have a history of anxiety of depression. I DID find that I had to stop taking stimulants for a few months because they were setting me over the edge. When I stopped those, I didn’t have the motivation to get through my work. I actually only started adding them back in last week and am monitoring that closely.
Thanks to you all for posting. I read blogs before when my neurologist first recommended Xyrem after I failed provigil. Just really failed provigil, haha. But I got so scared and in the time to start the process for Xyrem, many of my side effects finally were starting to abate. So I changed my mind. This was much to the chagrin of my neurologist who said he really thought the Xyrem would work better for me and it’s still his primary medication recommendation. I was strongly encouraged today to consider it by new personal support. Some days on just my provigil 200mg I’ll still get insomnia, my headache days are still more frequent than before, and I still get nausea now with them at least a quarter of the time. Ginger lozenges have been my new best friend.
But your post, Michelle, is really inspiring me. Elle’s blog geared me up with the 360-degree picture of her experience, but your comments just really have hit me. The couple hours earlier when I was chatting with my new friend, I let him know that one of my fears was even it working well so that I wouldn’t want to stop it so I’d rather just not start it in the first place. How incredibly ludicrous, I know, I know! But I’m not the first to think this way. And right now I don’t know how I’ll be able to travel where I want with it both controlling my life so much and it being such a controlled drug that customs may snatch it up and throw me in jail if I try to bring it into their countries with my prescription. This is my overthinking which my friend kindly called me out on while we laughed together at myself. However, you’re so right–provigil is just a bandaid. I spent the rest of my day lamenting about the possibility of me going back to school for my next graduate degree but my first was so hard, that the years since have been so hard, that I can’t even imagine how it’d be possible. Well, seems there’s fix in front of my face. Duh!
Before my diagnosis last October, I’d always just thought I was overworked, underslept and tired like the rest of America claims to be except for those wonkados on speed or Adderall. After my diagnosis, my symptoms have received an entirely new perspective. I struggled before, but now I’ve just felt trapped and limited. Much of this is because I still spend most days without much energy, and the rest with practically none. I truly do need to just let go and let the possibility of Xyrem happen.
I’ve been finding SNRIs more effective and scholarly articles tend to confirm. Have you tried pristiq ? Or Duloxetine?
I also began having chest pains after being on Xyrem. I see a cardiologist and he assures me all is fine. I think it also has to do with potassium and magnesium. I drink a lot of VITAMIN WATER ~REVIVE. Kind of like Gatorade.
I also just changed from a SSRI to a SNRI. It helped me tons!
What anxiety medications can be taken with zyrem
Thank you for sharing this. It is so reassuring just to hear that there is someone out there that is experiencing/ knows what it is to live with narcolepsy. I was diagnosed with Narcolepsy when I was 17, I just turned 27 last week so I have been living with it for 10 years now. I have been taking 54mg of Methylphenidate and Chlomipramine daily to control my symptoms but I really worry about the long term effects of taking methylphenidate and I would love to see if Xyrem would work for me. My doctor has been trying to apply for me to get the medicine but as I’m sure you know, the CCG in my area won’t fund it as it’s too expensive. I also worry a lot about pregnancy in the future as I couldn’t be on medication while pregnant which would mean I would have no control over my sleep and probably unable to work. I haven’t found much information about how people with narcolepsy manage with pregnancy but it is a big worry for me.
Those physical anxiety episodes sound like classical panic attacks. Like we kind of use the word panic attack (at least in the states) to mean any anxiety attack, especially if accompanied by physical symptoms, but the original definition of panic attacks/the technical definition actually refers to that kind of “thunderclap” physical anxiety out of nowhere. Idk if youve already talked about this with your psydoc but it might be worth looking into. Bye!
Thank you so much for opening our eyes up to what you are going through. I have two adult children that have narcolepsy. Years and years of, only you would understand and have verbalised it. Thank you thank you thank you.
How have you managed to cover the costs of this medication? Any ideas or helpful information we can use or do to get this drug.
Kind regards. Lyn.
Not sure how old this post is or who the author is, but I am about to start Xyrem for chronic severe insomnia and fibromyalgia and would love to have someone I could email with to share my experience with theirs. I am praying it will really help me and that I can tolerate the side effects well. If the author of this article would be interested in connecting with me on this, I would greatly appreciate it! Thank you.
I was wondering if you might share who your doctor is, who’s prescribing Xyrem for fibromyalgia and severe insomnia? I have both, and haven’t been able to find a doctor who knows anything about using Xyrem for these off label conditions, since narcolepsy is the norm. A doctor of mine thinks it would be really, really good for me, but he isn’t able to prescribe it. I doubt your doctor is located in New England, but I thought it was worth asking, just in case.
I’ve been praying that I’ll be able to find a provider who is willing to prescribe it for insomnia/fibro just so I can see if it might work for me. None of the other sleeping meds help. Do you have any updates about how it’s working for you, since you’re in the same boat ailment-wise? I hope you found someone willing to email with you.
Thank you for writing this. It’s beautifully written. I see my consultant in February who is going to prescribe me xyrem. I have seen that polarising debate on xyrem. I’ve been told about sleep walking and incontinence at night which at one stage put me off. I also have mental health problems. But, my greatest fear is developing Alzheimer’s later on because of decades of sleep deprivation. I’m now thinking that xyrem will help lower that risk because it promotes stage 3 sleep.
Is anyone on Xyrem having eye issues? my eyes feel so dry and just “Different”. Before Xyrem I had perfect vision. 2 years later I’m in trifocals. And my teeth…feels like my teeth and gums have “separated” since going on Xyrem, anyone else?
Definitely having eye issues. I’m on the highest dose and don’t remember my looking sticky looking, I can’t explain it. I’ve been using dry eye relief drops, not sure if it’s working. I’ve been on Xyrem a little less than 2 months. I’m going to reduce my dose to 4.25 for a week to see if the maximum dose is the cause. I’ve only been on 4.5 for about a week. I don’t like the way my eyes look. Has yours improved?
I am having the same issues with my eyes! It’s terrible! I’m wondering if it’s the salts because I actually have a buildup of crystals that form in my ears too. Maybe it’s because the electrolytes get thrown off with the sodium oxybate?
Thanks for writing this.
I have cramps alot and Charlie horses about twice a week never had them before. Any recommendations put there on good magnesium and potassium supplements. I dont mind paying more for quality. I
Coconut water. Or a tsp of cream of tartar mixed in a glass of water. Drink it fast because it sinks to the bottom of the glass. Most potassium vitamins are only 99mg. Coconut water, COT, or a banana have 400-500 mg each.
For Magnesium, any vitamin will do. A multivitamin may have enough. You only need 300-400mg a day, vs 3500-4700 of potassium
I swear I felt like I was reading something I wrote. I can relate to 99% of this (I have type 2) so much that I now feel less alone. Thanks for putting my thoughts and feelings into words for me.
I have type 2 as well, I agree with your comment 100%!! Minus the cataplexy I’ve never read something more relatable in my life. Makes me feel so good to know I’m not alone!
I developed heart palpitations and sometimes have a very accelerated heart rate because of Xyrem. I was told the palpitations were harmless and staying hydrated helps control my heart rate. My doctor thinks it might be an effect of the amount of sodium in Xyrem.
I’m really glad I found this post. I haven’t been taking it for long, but I’m not experiencing some of the immediate life-changing affects that some have. I have type 1 w/cataplexy, but I’ve never fallen asleep in the middle of talking or walking, and I’ve never experienced the hallucinations some do. So, maybe it’s just a bigger reverse for people who are further from “normal”?
I don’t know. I appreciate your analysis of the small things that have improved. This makes me feel better about not seeing the huge improvements, and I really look forward to having that little bit more energy so that I can stop napping all the time.
Wow, I can relate to every last bit of what you wrote (minus the cataplexy – I have type 2). The whole “being held hostage by your dreams and memories”, describes me PERFECTLY. The emotions, feelings, anxiety, everything!! I’ve been dealing with many of these same issues for years (diagnosed at 16 years old, 24 now) but finally got on Xyrem for the first time ever just one month ago. I’m still in the process of titrating to my full dose but I completely agree with your first paragraph of knowing what it feels like to actually sleep – it’s so wild!! I’ve been having muscle cramping too though, might look into the supplements that your mentioned. Just, wow. I can’t believe I found a post I could relate so well to, thank you for sharing and making me realize I’m alone!
1st I would like to say thank you very much for everything you took the time to research and write about. There is not much really known about narcolepsy therefore, It is often looked on as an invisible illness since it cannot be seen and isn’t talked about much. But than again depression is invisible and very very underrated even though the majority of suicides are because of depression. Go figure. I found your post because I am trying to find a way to gain energy because I am so exhausted so I was looking at the blue light glasses wanting to know what was being said about them. Because in Addition to narcolepsy I have an entire page of medical problems that I take to all of my dr. Appointments for my physicians in order to help them. Many are auto immune diseases and pain problems as well as mental health problems with anxiety depression and panic attacks. I therefore had to go on disability in 2012 At only 42 years old. And last year for my birthday I was gifted a diagnosis of stage 4 metastatic breast cancer for which there is no recovery. I had breast cancer in 2013 and thought it was taken care of but apparently not. So now I am dealing with exhaustion from narcolepsy as well as my cancer And sleep deprivation and my pain keeping me up at night. However I did want to mention something about the medications. I have a difficult time with medications they tend to react very oddly with me. Most things for pain that deal with neurology have the side effect of causing severe depression for me. I did not know it at the time but I cannot take sleep medications. I took xyrem for Almost a year and was feeling extremely depressed and suicidal at the time however I thought my life conditions were the problem. Well unfortunately I found out in a very harsh way that it was not merely my life causing the problems. One day everything became too much and I tried to kill myself. I was on life support for 24 hours and they told my family that they were going to have to make a decision to pull the plug because even if I did make it I would not be the same. Basically I would have some sort of brain damage. Well I am not certain exactly what happened except divine intervention but I did wake up on my own And for the most part I have all my cognitive senses. I do think it probably caused a few problems with concentration and Memory but nothing that can be pointed too obviously to that incident. Everyone said it was a miracle and they have no idea how I remained relatively normal. However anyway I tried a different medication because I didn’t really feel like xyrem was even being that affective so they gave me another sleeping medication and that 1 cause the same problem of feeling extremely depressed and upset and that’s when I realized I couldn’t take this medications. And all of the anti-depressant medications that are supposed to help with narcolepsy or neurological problems seem to have the same effect so I have to be extremely cautious when taking new medications. I never would have thought that something that would help me have normal rem sleep so I would not be sleep deprived could possibly cause such horrible problems which is why I am sharing this with you and anyone who cares to read this. I do take just about every medication you mentioned to help me stay awake not at the same time of course but I have to take nearly twice as much as most people in order for it to be effective and with my cancer it’s become almost non existant in the way of being effective. Right now I’m trying to look into just about anything to help me not be so tired because I have quite a few things I still need to get accomplished Before it’s too late. If anyone has any ideas please feel free to let me know and again thank you so much for your post it Was very informative and helpful and I hope that this will help others when researching narcolepsy as well thank you
Thank you so much for this post. I am starting this medication tomorrow and have had many questions about the possible effects and side effects. I am definitely on the nervous side, but I am also excited that I am finally able to take a step towards improvement.
Thank you for creating this post and thank you everybody for your comments.
I am about to start Xyrem this week. I am from the USA and I have a silver plan with Kaiser from my employer. The cost of would have been 550 per bottle which would run put in 1 month if you take 2 doses. So it would be about 6600 a year. I called the Xyrem pharmacy and they said I qualified for a coupon bringing the cost to $35.
I will still be taking Modafinil at 200mg as suggested by my doctor. It was about $40 per bottle.
I have type 2 and you literally hit every symptom for me.
I got diagnosed in 2021 at 25 and I kind of denied it until this year as I had a dream to be a pilot and well it’s officially crushed.
Keep in mind that I am always tired but after my first sleep study I decided to do a food elimination test. I realized that when I eat meat and dairy products it triggered my brain to go to “I NEED TO SLEEP RIGHT NOW” mode and if I don’t sleep I will start hallucinating.
If I don’t eat meat I can drive 12 hours straight but if I do then I sleep in 45mins?
Bur being vegan brought my mentally down even more as I loved food. So I did another sleep study with vegan meals but I still had narcolepsy.
I finally said okay to Modafinil at 100 mg and increased to 200 mg. I still felt extremely tired and my doctor finally came around slightly.
I told him I feel like I am constantly in a food coma everything I ate meat in a normal amount like a 4 ounce steak or 1 fried chicken.
When I was younger. I always was put down as forgetful. I always fell asleep in classes after lunch. My grades were awful in those classes and I always thought of my myself as stupid and hated myself for not remembering things that I studied for.
I fell “asleep” during my caljfornia high school exit exam. I was still subconsciously awake as I doodled on the exam and a barely passed…
When I got my license and worked I would swerve and act like a drunk person. Once I snap out my sleepy phase, I would have no memory of how I got there or what I said or did during the time I was driving. I assumed I was just tired from work.
I would space out during meetings at work.
When I finally got diagnosed I blamed my mom. Why didn’t she tell me I was sleeping too much? I would sleep 10 to 12 hours and nap after school. I would sleep every time watching TV or in a car. And just like how I thought on society and kids sleeping in school my mom assumed it was normal too.
I struggle not hating myself even though I know that it’s not my fault. My whole life I was compared to other people and I had a lot of what if’s. What if I was diagnosed sooner, will I be less forgetful? Will I had better grades? Would I not be left out on social events? Would I have less acne?
With the dreams, they feel so real that they actually hurt.
I explain to people like this so they understand. Imagine you travel across the country 16 hours ahead and no sleep for over 36 hours. Your body aches, your mind is confused, your reaction is slower, your eyes are blurry, and your start seeing stuff thats not acutslly there. All you just want to do is close your eyes but you cant. Well that’s how I feel everything I eat meat and dairy products.
In regards to my mental state I describe it as pouring hot water on your finger. When you realize it brings you pain you would avoid it. But in this occasion I can’t avoid it and I am forced to suffer every single day. I am tired of being tired. I really hope Xyrem helps and know that whoever is reading this, you are not alone.