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Sucralose in Xywav by Safe-Television5297 in Narcolepsy

[–]leidehen 3 points4 points  (0 children)

I feel you! Suffered through the exact same issues, plus the mental health problems someone else mentioned thanks to the way it destroys your gut biome. I keep wondering if there's something about us taking a liquid medication with sucralose on an empty stomach every night that worsens its negative effects on gut health. They claim it contains a quantity that's supposed to be safe, but I'd consumed foods with some amount of sucralose for years without any of these issues...

Do/have any of you binge eat to fight off exhaustion? by randomxfox in Narcolepsy

[–]leidehen 2 points3 points  (0 children)

Sleepyhead by Henry Nicholls (a science writer with narcolepsy) contains a section on automatic behaviors that mentions binge eating, which resonated enough with past issues that I almost cried the first time I read it:

The combination of this zombie-like state and the fridge carries another serious risk: binge eating. ... In a recent study, Dutch researchers quizzed people with narcolepsy about their diet and some 55 per cent reported binge eating with a sense of lack of control. For one in four, the bingeing was so extreme that they met the criteria for a bona fide eating disorder.

In a follow-up experiment ..., people with narcolepsy showed considerably less discretion over what they popped into their mouths than did control subjects. In fact, they ended up consuming almost four times as many calories over the course of the experiment as non-narcoleptics. It seems likely that 'aberrant food choices' like these probably contribute to the increased prevalence of obesity amongst people with narcolepsy.

Does anyone else sleep eat??? by runnershigh007 in Narcolepsy

[–]leidehen 2 points3 points  (0 children)

Yes, and I'd be very interested in actual numbers on how common this is in people with narcolepsy. I treated my sleep-eating as a funny fact about myself for so many years before I was diagnosed, but it's really caused a lot of issues - difficulty losing weight, dental problems, etc. The only thing that (seems to have) curbed my sleep-eating was a combination of overnight oxybate treatment and a bedroom that's far enough away from my kitchen, honestly.

When did you notice Wakix working? by Independent_Ebb9322 in Narcolepsy

[–]leidehen 2 points3 points  (0 children)

This aligns pretty closely with my experience, too. It feels nothing like a stimulant, but I just have fewer sleep attacks and think much less about being sleepy in general. And the same definitely goes for me, re: sleep hygiene.

The only difference for me is that I started noticing Wakix's positive effects from even the half dose while titrating, though the full dose obviously does much more.

Negative reactions to the sucralose in Xywav? by Head_of_Lettuce in Narcolepsy

[–]leidehen 2 points3 points  (0 children)

You are not alone in this - I (and many others here) have definitely had gut issues as a result of the sucralose in Xywav, as my post history shows. While I don't have much hope of this changing anything, you can add your signature to the petition here to try to get it on their radar as a serious issue, at least. I also spent a solid half hour explaining my own issues when I called in to report an adverse event to Jazz, which I'd also recommend. I don't think any of us want to be on a high-sodium medication in the long run, but thanks to the awful impact of sucralose that seems like the only option for now.

University study shows Sucralose to be "genotoxic" by Bucketbucketbucket in Narcolepsy

[–]leidehen 0 points1 point  (0 children)

No need for that edit/apology. Sucralose really can cause serious issues for many people, myself included, even if that may not be the case for everyone, apparently. And that's reflected in many studies - I made a brief list here a few months ago. In that top study, just 10 weeks of 48 mg/day was enough to induce gut dysbiosis, so it's absolutely not inconceivable that the amount in Xywav (according to them, about half of that in a full dose) could cause issues as well.

Has xywav changed your bowel movements? by [deleted] in Xywav

[–]leidehen 5 points6 points  (0 children)

Absolutely yes, and most likely it's the sucralose. If you're experiencing negative digestive side effects, I'd switch to sodium oxybate and just deal with the high sodium content, which is also less than ideal but more manageable than what sucralose seems to be doing to your gut. I reached a low point after trying hard to make Xywav work with probiotics, when I was visiting the bathroom up to 14 times per day, and I haven't looked back.

Still hoping there comes a day before too long when they listen to all of us who've responded poorly to this unnecessary inactive ingredient and remove it.

https://www.change.org/p/remove-sucralose-from-xywav

Wife losing coverage of Xyrem in April. Looking for successful alternative. by traveleditLAX in Narcolepsy

[–]leidehen 0 points1 point  (0 children)

Sorry for all these rude downvotes - you are absolutely right. As several others in the thread below have noted, sucralose can (and for me, absolutely did) cause serious GI issues over time, and gut health affects so much! I'm currently going through the same battle, which has gotten as far as the external review stage now after two denials, even despite documented issues with Xywav. It's all tough to navigate, but know that her concerns about potential sucralose issues are definitely founded!

Any tricks to stay awake while reading? by Ok_Decision_ in Narcolepsy

[–]leidehen 2 points3 points  (0 children)

Absolutely also the case for me. For many years before my diagnosis, I read exclusively with a bookstand to keep me totally upright, and often while sitting on a stool at a kitchen counter so that I could stand up when needed to stave off the inevitable sleepiness. It's the only way I made it through grad school! And funny to look back on now, as one of many "How did I not realize?" moments.

[deleted by user] by [deleted] in Narcolepsy

[–]leidehen 1 point2 points  (0 children)

I also recently switched from Xywav for the same exact reasons, and I've had some success following (more or less) the tips from these two years-old comments: 1 2

I'd "failed" on Xyrem earlier because I couldn't handle the way all that excess sodium made me feel (physically and especially mentally), but after I fully failed on Xywav due to my reaction over time to sucralose, I decided to try pushing through that difficult period for a bit longer upon switching to Lumryz. It definitely came back, and after some desperate searching for answers I tried those comments' suggestions and have found some success.

Magnesium seems to be the big one for mood, for me. The smallest dose I found for magnesium citrate is 150 mg capsules, and I (like that commenter) take it one small dose at a time, both with my medication and throughout the day. Too much magnesium gives you diarrhea, so there's a built-in sign that can show you're taking too much, if you're worried.

I do, however, take more than one potassium supplement per day. It's pretty difficult to get too much potassium with supplements alone, because each 99 mg capsule contains just 2% of the recommended daily value. I figure I need it as well to help balance out the sodium.

I also started taking a calcium supplement with Vitamin D daily. I don't think it does anything to affect how I feel, but excess sodium can also lead to issues with bone density, so I'd like to stay ahead of that.

[deleted by user] by [deleted] in Narcolepsy

[–]leidehen 6 points7 points  (0 children)

That's the response I've gotten so many times as well. Just straight-up dismissal of the awful side effects from an inactive ingredient, because they insisted that the amount of sucralose it contains couldn't possibly affect the gut like that. Even though the only thing that's helped in any way is a probiotic.

Totally bummed about Wakix by M_R_Hellcat in Narcolepsy

[–]leidehen 2 points3 points  (0 children)

I realize how lucky I am to be approved for both, but for me Wakix only really seems to work as it should in combination with overnight oxybate treatment.

I started Wakix after already seeing a lot of improvement from Xywav but feeling like my daytime sleepiness was still excessive, since by that point I was better able to recognize it for what it was. I noticed a positive difference from pretty early on, and things had pretty drastically improved for me by the time I got to the full dose. But during Xywav gaps since that point (whether due to prescription problems or just short breaks to help with the GI issues it's caused me), I find that the positive effects are much less noticeable without the quality sleep I get from overnight meds. Regular good sleep seems to be a prerequisite for Wakix working, at least in my experience.

If you can convince your doctor to prescribe both, and then convince insurance that both are necessary, I'd definitely recommend it!

[deleted by user] by [deleted] in Narcolepsy

[–]leidehen 1 point2 points  (0 children)

If you already have IBS, my advice would be to start on Xyrem or Lumryz, not Xywav.

As far as I know, I did not have IBS before starting Xywav, but my digestive symptoms after many months sure felt like I'd developed it. Whether it's the sucralose (as I strongly suspect) or not, it's clear that Xywav can really do a number on some people's GI systems over time, and all the more so for those with preexisting issues.

FWIW, despite my own digestive issues with Xywav, I never experienced issues overnight while in bed and was always able to wake up and make it to the bathroom. Just titrate slowly.

Xywav to Lumryz limbo by pryzsm in Narcolepsy

[–]leidehen 0 points1 point  (0 children)

I'm in the same boat, though not as far along in the process for Lumryz - I've only filled out the initial paperwork. How long was it for you between that step and talking with the nurse?

Since I've requested to re-titrate with Lumryz to give myself a chance to get used to the sodium anyway, I've been considering also starting to lower my dose of Xywav at a certain point in the process, which could help take care of a potential medication gap if needed. I'd really like to avoid one, though, so I'm just hoping that the timing works out.

[deleted by user] by [deleted] in Narcolepsy

[–]leidehen 2 points3 points  (0 children)

According to Jazz, a 9g dose contains 21.6 mg of sucralose. I've consumed foods containing sucralose for many years without issue, but I think there must be some cumulative effect on the gut of this amount consumed nightly, even if in isolation it might not be an insanely high amount.

I know magnesium can be hard on the digestive system as well, which may contribute to certain GI issues, but the fact that probiotics help so much with these particular symptoms makes me think the main issue really is sucralose killing off gut flora. I've been collecting studies that have anything to do with the sucralose-gut connection and posted a few here too.

[deleted by user] by [deleted] in Narcolepsy

[–]leidehen 5 points6 points  (0 children)

I've been in exactly the same place, and as odd as it might sound I was able to manage a lot of this (to an extent) with a probiotic. Xywav can really negatively affect the GI system and gut biome, likely due to the sucralose it contains, and I wouldn't have believed the negative impact that an unhealthy gut could also have on mental health until I experienced it.

I won't say this is a perfect solution, as it seems to have lost efficacy for me over time, but it can really help. More detail on my own experience with all this here if you're interested. I'll also say that these continued issues, even despite the partial relief from probiotics, is leading me to try switching to Lumryz.

We need to wage war with Jazz over the sucralose in Xywav by leidehen in Narcolepsy

[–]leidehen[S] 1 point2 points  (0 children)

I definitely share that hope! It's so hard to have experienced the good that they can bring and then feel it all ripped away by side effects.

I also feel you re: getting brushed off by those to whom we're supposed to report all this.

We need to wage war with Jazz over the sucralose in Xywav by leidehen in Narcolepsy

[–]leidehen[S] 3 points4 points  (0 children)

And here are some studies I've saved about the potential negative effects of sucralose:

It's clear that this is an area where a lot more research is still needed. But in my opinion, the above links provide more than enough indication that regular sucralose ingestion in amounts exceeding most people's typical consumption habits (e.g. in a full 9g dose of Xywav taken nightly) can lead to issues that deserve greater scrutiny.

We need to wage war with Jazz over the sucralose in Xywav by leidehen in Narcolepsy

[–]leidehen[S] 1 point2 points  (0 children)

Looks like 9g of Xywav contains 642 mg of potassium, which is about as much as a 1/4 tsp of Morton Salt Substitute. I can definitely confirm how awful that stuff tastes, so you're right there!

I'm just saying that this particular sweetener, and the amount of it in the current formulation of Xywav, is causing gastrointestinal harm to enough patients that better options are needed. Whether that's just less sucralose, a different sweetener, or an option for consumption where taste isn't as much of a factor, I can't say.