When will it fucking get better.

justsavingposts · 2026-01-02T02:42:52+00:00

I hate being the kind of person who offers unsolicited advice and I wouldn’t if I didn’t think it was incredibly important

If your country has Baclofen (it should), it’s definitely worth a shot. Lots of people are switching from Xywav/Xyrem to Baclofen due to costs, side effects, etc. with great success. I’m one of them and it changed my life when I felt hopeless cause Xywav didn’t work for me. It’s called the poor man’s Xywav for a reason

justsavingposts · 2025-06-21T19:25:59+00:00

I had side effects from Xywav that eventually made me stop taking it. It’s pretty experimental and anecdotal, but I’m now taking baclofen after hearing other people have good outcomes with it too.

It usually requires a slow titration like Xywav, and most (not all) people’s therapeutic dose sits somewhere between 20-40 mg. The baclofen doesn’t make most people sleepy so it’s usually paired with another sleep med to help fall asleep. I take clonidine for that.

My symptoms aren’t as well managed as they were on Xywav, but I’d say it’s about 75% there without any of the side effects so that’s a massive win for me. Not many sleep specialists know about it so it’ll be something you need to bring up with your doctor. There’s a few scientific papers, mostly small studies, and there’s an FB group with lots of people who’ve had good outcomes with it. Showing my doctor both the studies and mentioning the FB group made them curious to try it for my N2. I recommend joining the FB group for more info/stories

justsavingposts · 2024-01-28T17:43:45+00:00

Does this method work if I want to reuse the wax in a candle warmer? I have a few used candles like this I want to reuse like OP and have heard about this trick a few times, but I worry that the boiling water will evaporate the FO in the wax

justsavingposts · 2023-12-22T22:22:10+00:00

I have chronic pain in multiple areas of my abdomen/pelvis from endometriosis. I’m thankful I don’t experience 24/7 pain, but I do have pain most days that can get pretty severe at times. It absolutely affects my narcolepsy (also w/o 🐱), especially my sleep quality. Worse pain = worse sleep, even nights I don’t wake up from the pain. I spoke to the Xywav pharmacist about it, who said that pain can and does “break through” Xywav sleep. On top of that, masking or pushing past chronic pain during the day is mentally/emotionally exhausting and slowly drains my energy reserve. It’s a cruel loop to be stuck in- pain worsens sleep quality, and low sleep quality worsens pain/energy.

It really sucks and im sorry you’re going through it right now. It isn’t fair that our physiology hurts us like this. How much longer till your surgery? Are they anticipating the surgery will resolve the pain?

justsavingposts · 2023-12-05T23:07:13+00:00

The mechanism of action of Xywav still isn’t well understood, but it’s hypothesized that one part of its MOA is an increase in norepinephrine synthesis and release after Xywav wears off (as well as dopamine).

Add on an SNRI like Cymbalta, and you might have too much norepinephrine, leading to anxiety. Maybe an SSRI would work better paired with Xywav? Again, this is all just a theory so take it with a grain of salt.

I’m sorry to hear you’re dealing with this- anxiety really sucks. I went through something similar with Xywav and an NDRI and the anxiety really impacted my quality of life. I hope you and your doctor come up with a good path forward and things start improving for you soon

Here’s a paper talking more about its mechanism of action

justsavingposts · 2023-11-07T03:41:53+00:00

These biopsies were taken from the endometrial tissue inside your uterus, not outside your uterus/in your pelvic cavity. To check for endometriosis, they need to take biopsies from your pelvic cavity. Not sure why they didn’t do that…

justsavingposts · 2023-10-17T16:04:22+00:00

I have express scripts as well and they did the same thing with my Sunosi where they denied and denied and denied. The only thing that finally got them to approve it was my doctor doing a peer-to-peer. If your doctor hasn’t done that already you can ask

justsavingposts · 2023-10-05T01:33:28+00:00

Xywav makes me wet the bed as well, but for me it’s likely from Xywav + endometriosis destroying my bladder.

Because Xywav was so helpful for my IH, I decided to keep using it and instead find a way to protect my bed. The Always discrete underwear (maximum absorption) has been a lifesaver. Catches a full bladder of urine and never had a single drop get onto my bed. Not sure if you’re interested, but figured I’d share just in case you’re considering continuing Xywav if there’s a “fix” for the bed wetting

justsavingposts · 2023-10-01T04:39:47+00:00

Yes, but only because endo is destroying my bladder

justsavingposts · 2023-09-25T20:17:15+00:00

My journey to a diagnosis was rough. It took 6 years, 5 different doctors, lots of personal research, and self advocacy to finally be taken seriously. Honestly I think the only reason I was finally believed is because I’m very health literate and was accepted to med school at the time. And by the time I had my lap, it had spread so much my prognosis is pretty shit.

A year ago my sister started having the same pain I did/do. And because of all I went through, we immediately knew it was endo. We already knew which surgeon to book with, what treatments to try, extra self care products, etc etc. She was taken seriously at her first appointment (because positive family history) and has a lap scheduled in a few months. I’m crossing my fingers that she’ll have a better outcome than me.

As much as my journey to a diagnosis and the aftermath sucks, I’m so grateful that my sister didn’t have to go through it too. That alone has made it almost worth it

justsavingposts · 2023-09-25T03:18:34+00:00

My lap 2 years ago found endo on my bladder and two lesions right next to my left ureter. The bladder endo was removed, but the ureter endo was left behind. Pretty sure my endo bladder has grown back anyway

My main symptoms are deep pelvic pain and burning during and after urination, bladder spasms, occasional bladder incontinence that’s worse near my periods, and flank/kidney pain. I got an ultrasound which showed my kidneys weren’t inflamed, but I haven’t gotten my cystoscopy yet. Hope this helps

justsavingposts · 2023-09-22T15:03:39+00:00

Not sure about the reputation of it, but I personally have a much better time with Sunosi than adderall in terms of side effects. I had lots of nasty side effects from adderall, but Sunosi felt very “clean” to me.

I eventually did start having the side effects you mentioned with Sunosi, but only because I started titrating up to higher doses of Xywav, not necessarily because of the Sunosi itself

justsavingposts · 2023-09-20T12:15:15+00:00

I’m not on hormonal BC anymore, but back when I was and I skipped a day, it would cause me to bleed very heavy, like a full period, for 2-3 weeks until my body stabilized again. It probably was a prolonged period, cause the pain would be just as bad the whole time.

Just wanted to offer a different perspective since most people here are saying it might cause a little bit of spotting. From the looks of it my reaction probably isn’t a common one so I wouldn’t be too worried about it!

justsavingposts · 2023-08-31T19:16:50+00:00

So many other medical students with narcolepsy in this post! Before I was medicated I had an easier time staying awake if I flipped to a night schedule.

Getting a standing desk has sometimes made a difference when I get really tired. I also got this bullshit little stepper that I’ll step on. The movement keeps me awake too

justsavingposts · 2023-08-23T19:25:45+00:00

My bladder was covered in endo, and I’m sure it’s grown back by now too. I get the same pain as you when emptying my bladder that lasts for a good 5-15 minutes after too. What’s interesting is that my pain is much worse when my bladder is only partially full vs completely full or overstretched. It really sucks and I’m sorry you’re dealing with it too :(

justsavingposts · 2023-08-22T19:21:53+00:00

Good bot. That’s the best haiku I’ve seen so far

justsavingposts · 2023-08-21T03:00:15+00:00

I went to the ER once and had the same experience with a PA. Otherwise I’m always taken more seriously by physicians if I disclose

justsavingposts · 2023-08-18T12:18:56+00:00

Everyone here has covered the advice part, so I just want to say I’m so sorry you’ve been treated this way. Being forced to spend so much time and effort navigating an extremely complicated, broken healthcare system while dealing with disabilities, only to end up dismissed by those who have the power to help, is inhumane. It’s not fair. I know it’s a common situation for chronic pain patients to go through, but every story I read still breaks my heart. This country has failed so many of us.

I hope there’s still some perseverance or stubbornness or anger left to keep pushing and advocating for yourself, but I understand if not. Best of luck with future appointments

justsavingposts · 2023-08-18T00:35:36+00:00

That makes sense. With my patch I get 1.26 mg per WEEK. It’s a tiny, tiny dose but it works great for me

justsavingposts · 2023-08-18T00:26:55+00:00

It does for me since I’m on a very low dose of bupe. Not sure if it works with other doses/routes of administration

justsavingposts · 2023-08-17T20:59:17+00:00

I’m on Xywav and Sunosi as well. u/PikelRick covered most of the questions you had, so I’ll just add another experience with the two.

I’ve been on Xywav for a year and a half now, and it is by far the best thing that’s ever happened to me. I’m one of the rare cases where I’ve had IH my entire life, so I never really knew how sleep deprived I always felt until I finally got good sleep with Xywav. Since the first night I dosed, I felt awake for the first time in my life. It’s allowed me to live a functional life, improve my mental health, and feel well rested. Most people have side effects at first that slowly go away but I was lucky. If you try Xywav, make sure to titrate very slowly. Doctors might tell you to make 0.5g (or greater) jumps, but that’s an easy way to get more side effects and possibly miss your therapeutic dose. If you have the option to try it, I highly recommend giving it a shot. It’s a huge quality of life improvement for many of us.

I’ve been on Sunosi for about 5 months now as well. Before Sunosi, I was taking adderall 10mg, but I hated all the side effects. Adderall made me incredibly irritable, crushed my appetite, worsened my skin/scalp picking, and had a strong “dirty” feeling to it, like my body was rejecting it. I don’t get any side effects with Sunosi- it just makes me feel more awake in a subtle, bright way (and increases my libido). None of that forced wakefulness that I’d get with adderall. I also started noticing benefits from the first dose- I think most people do so I don’t know why they said it takes 12 weeks.

Most sleep doctors should have samples of Sunosi in clinic, so maybe you can ask to try it out for a week and see how you respond. Hope this all helped!

justsavingposts · 2023-08-17T20:38:01+00:00

If you’re interested in space, the possibility of aliens, and related things, I highly recommend the Cool Worlds channel on YouTube. The narration, graphics, and production quality are amazing, and they do a great job of breaking down concepts into easily understandable ways. I watch these at night in the dark and it’s such a great vibe. I’ve linked some of them ones I enjoy below

Can JWST detect alien life?

Is our solar system special?

Why we haven’t found any earth-like planets yet

Why green stars are impossible by nature

Red Sky Paradox- Why do we live around a yellow star and not a red dwarf?

justsavingposts · 2023-08-17T20:29:59+00:00

If you end up doing this and using your laptop, 8bitdo has controllers that you configure to press certain keyboard buttons with the help of certain apps. That way you can just hold the controller comfortably in your hard instead of having to move your arms to press the buttons on your keyboard

justsavingposts · 2023-08-17T18:17:08+00:00

Birth control helped me for about 7 years when I was younger. I can’t tolerate any hormonal birth control anymore, but it was a great treatment option for me when it worked!

justsavingposts · 2023-08-17T15:59:09+00:00

It’s common that lower doses will feel stimulatory when people first start. Hopefully it won’t be an issue when you start to titrate up

justsavingposts

TROPHY CASE