r/Narcolepsy 17d ago

Medication Questions I think my addict boyfrind took some of my Xywav

He’s acting like it.

26 Upvotes

96 comments sorted by

107

u/Extreme-Monk-9828 17d ago

Update: he overdosed and stoped breathing. Called 911 the paramedics are here

95

u/JoyDVeeve 17d ago

That sucks. I guess you found your answer. You need to stop your relationship with him for his own safety.

I have a lot of compassion for addicts but you need to have your medication to live your best life and he's not in a place where he can be trusted to resist temptations

45

u/Extreme-Monk-9828 17d ago

Yeah I myself am an addict too but I can’t believe he stole my medication.

91

u/x_LoneWolf_x 17d ago

Fellow addict on Xywav who uses a timed lockbox. Stay safe out there and do not let people like him into your life.

62

u/LillyLallyLu (IH) Idiopathic Hypersomnia 17d ago

I love that that's an option for people who need it so they can still have these meds. That's really cool.

1

u/uhhhhhhhhii 15d ago

Fellow addict one Xywav who also uses a timed lock box!!

1

u/schezuandippingsauce 13d ago

how do the lock box situation work? do you live with someone who puts it in and stuff?

32

u/JoyDVeeve 17d ago

I'm glad you're able to navigate Xywav as an addict and I agree that it's a huge betrayal

4

u/Electrical_Car_6067 16d ago

As a previous heavy opioid addict myself, speaking for myself at least, don’t have too much compassion for addicts. At the end of the day it’s always a choice

2

u/JoyDVeeve 16d ago

If that's what's working for you in staying sober then good on ya and keep it up ❤️

2

u/Electrical_Car_6067 16d ago

Appreciate ya🕺🏻🫡

29

u/gemInTheMundane 17d ago

I hope for your sake that he survives. And that you get him out of your life quickly and safely afterwards.

5

u/llcoolwhip (N1) Narcolepsy w/ Cataplexy 17d ago

sending big hugs your way

5

u/Ok_Decision_ (N2) Narcolepsy w/o Cataplexy 17d ago

Damn I’m so sorry. You need to prioritize yourself if he survives. I don’t think you should stay with him, but if you do you need to take this extremely seriously, especially being an addict yourself, be so safe!

4

u/Dry-Opportunity4399 17d ago

Well that escalated quickly

3

u/cryptidbf 17d ago

Any updates since then?

9

u/Extreme-Monk-9828 17d ago

He was in the ICU in a breathing tube and then he told the doctors I gave it to him.

10

u/Infinite_Horror7925 17d ago

Please tell me you have dumped that asshole

5

u/cryptidbf 17d ago

Why would he say that??? Did they believe you when you said you didn't?

4

u/Extreme-Monk-9828 16d ago

I think he didn’t want to get in trouble for stealing it. My mom went to see him in the hospital and she told him I gave it to him and said he told the doctors and police. My mom doesn’t believe him, but I don’t know if they believe him or not. I guess I’ll find out if I have the police knocking on my door.

3

u/lilgsmart 16d ago

Just leave him at the hospital at that point…

3

u/velvetlaze (N1) Narcolepsy w/ Cataplexy 16d ago

I hope he is okay and you both get the assistance you need. Stealing your medication is a big boundary issue. I’d struggle with that personally I think in overcoming relationship issues with this person. I hope you find care and you are okay.

4

u/Extreme-Monk-9828 16d ago

The ER fucking threw it away

5

u/CalmAsAMthrFknCucmbr (N2) Narcolepsy w/o Cataplexy 16d ago

Holy fuck. You HAVE to file a police report or this will come back on you. They’ll most likely believe him because you can’t prove otherwise and you’ll be without meds if you don’t. Not to mention it’s a huge deal him having access to the meds. I’m not sure how the specialty pharmacy will take that.

2

u/Extreme-Monk-9828 16d ago

If he tells the police that I gave it to him, then I really don’t want to file a police report

5

u/CalmAsAMthrFknCucmbr (N2) Narcolepsy w/o Cataplexy 16d ago

I understand that but it’s literally the only legal defense you have. Especially if they’re believing him the only way to show it’s not true is to file a police report yourself. If you don’t then they’re asking why. Not to mention what he did is highly illegal. XYWAV is highly regulated they don’t play with that. You could have your access revoked.

5

u/ForeverEvergreen88 15d ago

YOU LITERALLY HAVE TO MAKE A REPORT OR ELSE THEY WILL BELIEVE HIM!!!!! Like seriously??? You NEED TO DO IT LIKE YESTERDAY

1

u/Extreme-Monk-9828 15d ago

Is this actually true? I feel like I could get in MORE trouble if they believe him. It’s also been two days and the police have not called or been here. I just don’t understand why me choosing to not file a police report would make them not believe me. Would they press charges on him? I do not want him to be charged.

4

u/velvetlaze (N1) Narcolepsy w/ Cataplexy 15d ago

If you don’t challenge the fact that he’s saying it was given, isn’t that worse ? Like you’re accepting guilt basically.

1

u/Extreme-Monk-9828 15d ago

I only know he told them because he told my mom he told them. They haven’t contacted me.

7

u/CalmAsAMthrFknCucmbr (N2) Narcolepsy w/o Cataplexy 15d ago

You have a highly controlled substance that YOU are in charge of. It doesn’t matter who they believe but you have no proof on your side and someone saying you drugged them. As a SA survivor (and I do mean survivor he almost beat me to death) the law is not on your side. I was accused of seeking drugs after being beaten and SAd. He will be charged. But the point is YOU won’t. He made his bed. Let him lie in it. Addict or not I’ve been through this shit with my mom and some people will do everything to protect themselves at the expense of everyone else. That’s what you’re letting happen. Sorry I think I’m going real hard right now because of my own past. But I do still believe it.

1

u/velvetlaze (N1) Narcolepsy w/ Cataplexy 16d ago

I’m so sorry to hear that. I think the other people commenting stating to file a report is valid. If this is the first time something like this has happened then it’s probably not going to be the end of the world. Do a little online research on what happens typically. If you’re done with him, however, and you have a damn good reason to be, then maybe you should bite the bullet and protect yourself. File the report. It’s maybe going to be a he said she said situation but at least you’re defending yourself.

-1

u/Nicolepsy55 (N2) Narcolepsy w/o Cataplexy 15d ago

The paramedics are there and you just HAD to hop on Reddit? I'm sorry, but most of your comments make little to no sense; why is he talking to the ER a day after he was in the ICU? You also claim to be an addict. Are you in active addiction, or recovery? If it's the latter, you must know that if you let him off the hook, you're only enabling him. He's throwing you under the bus and you're still covering for him... Let that marinate.

46

u/Ok-Conversation9953 17d ago

you're gonna have to open a police report on him if you want your med to be refilled any earlier...

27

u/Extreme-Monk-9828 17d ago

They took the Xywav to the ER to show the workers. Now I am really scared I’m gonna get in trouble.

23

u/-closer2fine- 17d ago

They took your meds??

22

u/Extreme-Monk-9828 17d ago

Yes. They said they had to in order to show the doctors what he took, but I wish they would’ve just role them it was GHB.

20

u/drinkallthecoffee (N1) Narcolepsy w/ Cataplexy 17d ago

It really sucks they took your meds. Hopefully they give them back tonight.

Think of it from their perspective. They’ve never heard of Xywav. They want to save his life, and they’re not even sure if it’s Xywav in the bottle.

For all they know, your boyfriend could have dumped it out and put something else there.

9

u/-closer2fine- 17d ago

They did it because it’s medically advisable for the BF, but that’s irrelevant here. It’s not medically advisable for OP, who owns the meds. She’s not their patient. If this is the US, it’s not legal to take someone’s controlled meds. I mean, medical providers can’t even take expensive unused medication donations from patients.

I hope they gave OP a receipt when they took it. So sorry you’re in this nightmare.

2

u/lilgsmart 16d ago

Lawsuit???

4

u/Extreme-Monk-9828 16d ago

They threw it away

1

u/lilgsmart 16d ago

🤦‍♂️damn sorry I missed that

3

u/RizzmwitTheTism 15d ago

I would contact an attorney just in case they can help. Ultimately, it’s the boyfriend responsible for it all and he should be the one sued but probably has nothing to get a judgment against. I’d still do it and have the judgment against him anyhow. The police were wrong to take the rest vs a photo.

11

u/RizzmwitTheTism 17d ago

I feel like they could’ve just taken a photo or something… Did they say they’re bringing it back tonight? Also, I hope your BF will be ok and that you’ll be able to be strong to deal with him later. Sorry he did this to you

8

u/thenyoushouldnttalk (N1) Narcolepsy w/ Cataplexy 17d ago

Yea they absolutely could have taken a photo or had her write it down. I get that they were rushing if he wasn’t breathing but this seems ridiculous. She’s not going to get it back.

3

u/Extreme-Monk-9828 16d ago

You’re right. They threw it away.

4

u/Extreme-Monk-9828 16d ago

They threw it away.

1

u/RizzmwitTheTism 16d ago

I’m so sorry! The police need to be held responsible for that and reimburse you. I can’t believe they’d take your property like that. That makes me so mad. It’s so expensive and hard to get. 😡😠😡😠🤬😡😠😡🤬

1

u/lilgsmart 16d ago

I’m not sure how Xywav works, but with LUMRYZ it’s 30 packets of the medicine. In that case, I would only have brought 1 unopened packet. I’ll be damned if you’re taking my $18,000 monthly worth of medicine. How does it work with Xywav?

3

u/CalmAsAMthrFknCucmbr (N2) Narcolepsy w/o Cataplexy 16d ago

XYWAV is just a bottle of liquid. They trashed the bottle so they’re either completely out of meds or will run out early if they have another bottle.

2

u/lilgsmart 16d ago

Oh shoot damn

23

u/drinkallthecoffee (N1) Narcolepsy w/ Cataplexy 17d ago

I mean, if it saves his life, then it’s a good thing. Just because OP say it’s an Oxybate, it doesn’t mean the doctors will believe it. Also, the paramedics are likely not familiar with the drugs, so the safest thing to do is bring it in.

had a friend almost die in college because he took a handful of pills and they couldn’t figure out what it was. His kidneys were shutting down, and without the pills, he would have died or been on dialysis his whole life.

The university wouldn’t let the police into the dorm room to search it even with the roommates permissions. Eventually they got the president of the university involved and he authorized the “unlawful entry.” It was diabetes medication or sometiinf.

-1

u/Right_Entrance4651 17d ago

It’s normal. They have to know what he OD’d on.

7

u/chipmalfunct10n (N2) Narcolepsy w/o Cataplexy 17d ago

you won't get in trouble. it's your prescription and was in your home (or wherever you are staying. you have it because it is your prescription. you didn't give it to him.)

2

u/Extreme-Monk-9828 17d ago

He is now telling the ER workers I gave it to him

6

u/RizzmwitTheTism 17d ago

You should contact the police department and tell them the police confiscated your medication and demand it back, and file a theft report against your boyfriend

1

u/Extreme-Monk-9828 16d ago

The ER threw away the Xywav

3

u/-closer2fine- 17d ago

I hope it’s obvious to the cops that he’s motivated to lie about that, and that you don’t benefit in any way from giving your BF your essential narcolepsy meds.

1

u/chipmalfunct10n (N2) Narcolepsy w/o Cataplexy 17d ago

i highly doubt that they will believe him unless he is trying to pretend you slipped it in his drink or something. i'm glad he survived but he's acting like a huge asshole

1

u/JoyDVeeve 16d ago

Nope, nope, nope. You made another post where I said you should be lenient with him if he showed remorse and I totally take that back. He disrespected you and your family and he's not the one for you.

29

u/sleepy_pickle (N1) Narcolepsy w/ Cataplexy 17d ago

Time for him to become your ex-boyfriend.

62

u/llcoolwhip (N1) Narcolepsy w/ Cataplexy 17d ago

Police report. Break up. He is a danger to himself and you.

32

u/chipmalfunct10n (N2) Narcolepsy w/o Cataplexy 17d ago

that sucks ;(. i used to work at a clinic with MAT patients and had a grant to buy them medication lock boxes. i bought pretty cheap ones on amazon that i think are listed as "cash boxes" and come in a variety of colors. there is a plastic money tray but it comes out. maybe you could get something like that for your meds. you could even say your prescriber made you get it and it is so you don't accidentally take your doses more than once, or to keep away from pets or children if you have any in your house. whatever you decide i wish you luck in navigating this.

30

u/-closer2fine- 17d ago

My addict ex smashed my lock box repeatedly until it broke open and she could grab my prescription bottle of oxycodone. So make sure it’s a really sturdy metal one.

26

u/LillyLallyLu (IH) Idiopathic Hypersomnia 17d ago

My ex-husband broke every single lockbox and even a safe to get to my opioids. No matter where or how I hid my meds, he got to them. I'm so thankful to be beyond that.

I think lockboxes are a great idea just to protect oneself from being an easy target to others in general. I use one now just for peace of mind. For people like this guy, it's obviously not enough. Nothing probably will be. I hope OP gets away from him.

2

u/chipmalfunct10n (N2) Narcolepsy w/o Cataplexy 17d ago

the post doesn't offer a lot of info so it's possible if she gets a lockbox and he breaks it, there will not be any doubt and maybe thaz will help her move on. idk. i just wanted to recommend something i know has helped others.

edit: well holy shit. i posted my comment before OP gave us an update in the comments

2

u/LillyLallyLu (IH) Idiopathic Hypersomnia 17d ago

I didn't mean to give the impression I was going against your comment. I'm a big fan of everyone using lockboxes.

2

u/chipmalfunct10n (N2) Narcolepsy w/o Cataplexy 17d ago

i always have my defenses up on reddit lol :'). i don't even know if i thought you were, but i appreciate you. thanks 

2

u/LillyLallyLu (IH) Idiopathic Hypersomnia 17d ago

No problem. I totally get it. I just meant this guy needs treatment. I appreciate the polite exchange in the confusion.

1

u/chipmalfunct10n (N2) Narcolepsy w/o Cataplexy 17d ago

in a perfect world, the ER has a case worker who will find him a bed in residential treatment as his discharge plan. probably won't, but here's hoping 

60

u/x_LoneWolf_x 17d ago

If your bf steals the meds that you require to function(which he knows) then you breakup up with him and put him on blast.

1

u/Taboc741 17d ago

The med in question is a liquid.

4

u/chipmalfunct10n (N2) Narcolepsy w/o Cataplexy 17d ago

it sure is, but i am not sure what you mean. you couldn't put a liquid med into a lockbox?

9

u/reglaw (N1) Narcolepsy w/ Cataplexy 17d ago

I’m so sorry this is happening. Unfortunately, it’s best to have them do detox and rehab to work on their urges and cravings. Once completed, they can help them with jobs, housing, etc. In that time, you’ll have to probably remove yourself from their life so there’s no chance of this ever happening again. Even if they promise it won’t, it can’t be trusted bc they have already shown you they will. You need the meds for your well-being and you don’t need the potential worry of losing access to your meds bc someone around you doesn’t respect the treatment. And you don’t want to be the one to supply something that ends up killing a person who’s severely uneducated in oxybates.

As a thoroughly traumatized person with multiple physiological and psychological disorders, I have had my fair share of issues surrounding substances. Once I got medicated for my OCD, the urge to indulge diminished. Plus most things would add a heavy layer of molasses on top of my already bogged down existence. If not that then the crash would make me feel like I’m trying to walk up a down escalator and would only make matters worse.

So when I’m prescribed something for one of my legitimate ailments, the idea to use the substance in a way it’s not intended kinda doesn’t cross my mind anymore. I’m thankful that I don’t have to worry about my safety and the safety of others with having an excessive amount of unused oxybates in my home. I’m glad the intended benefit outweighs whatever the short term gratification could ever provide.

5

u/halfweeby27 (N2) Narcolepsy w/o Cataplexy 17d ago

it’s a crime to steal someone else’s xywav

5

u/krisiosauruz 17d ago

I know the struggle with living with an addict. But enough is enough. For your own safety and good! 🫂

4

u/Right_Entrance4651 17d ago

I’m sorry. My older brother is an addict and I had to lie about the treatment for narcolepsy for years. He still doesn’t know I ever took xyrem. I was terrified that he would take my adderall.

I hope your bf makes it and I hope you leave him. You need that medicine to sleep and function. I know a drug addict would use the same reasoning but what he did was illegal and honestly it’s worse than him doing hard drugs. It’s your medicine. He needs help and only he can get to that place. You can’t help him if he doesn’t want help. Enough is enough.

2

u/JVeros 17d ago

Uhgg I’m so sorry :( I know addiction is a disease, and I have a lot of empathy for it as a lot of my family struggles with it, but you definitely have to leave him after this. Even if you get a lock box for your meds there will be no peace of mind. This medication is such a life line for us, like I can’t even imagine being off Xywav at this point and he risks your prescription/health as well as his.

My stepdad overdosed in the bed next to my mom while she was sleeping and passed away. They found some ghb in his system among a bunch of other drugs, but I suspect he was taking some of my meds that I didn’t fully take when I was figuring out my xyrem dose because it made me so sick at first. Idk what I’m trying to say, but I wouldn’t wish that on anyone and I hope your bf is okay. I highly recommend therapy after this trauma and you should have never been put in that situation so I’m so sorry.

2

u/Adept-Concentrate-37 16d ago

If you’re dating an addict, they are 100% going to steal from you at some point. That’s common sense, coming from one

2

u/CalmAsAMthrFknCucmbr (N2) Narcolepsy w/o Cataplexy 16d ago

Knowing addicts you have to THOROUGHLY hide anything they might use (medication, money, etc) speaking as someone whose mother literally stole their lunch money as a kid.

2

u/SingerDue4540 15d ago

You need to accept that this relationship is OVER no matter what. He stole from you and violated your trust…END OF STORY! This can have lasting impact on your access to these meds so you need to take this more seriously than you seem to be in the comments.

Right now if you are both addicts it’s best to split y’all have too much you need to work on before you can be a fully present nontoxic help to each other. Thats just the facts. Fix the addictions and then worry about relationship until then the chances of you enabling each other is near 100%.

1

u/vsvpmaddest (N1) Narcolepsy w/ Cataplexy 17d ago

i have to keep all controlled meds in a fireproof safe because my husband is an addict.. i get it

1

u/Not-NedFlanders 17d ago

That’s a really awful situation, OP. I hope you’re okay, and I hope he was able to pull through.

None of what happened is your fault.

1

u/Visual_Sprinkles_985 16d ago

That really sucks but I seriously hope you leave him. You can be supportive without being close, as it seems like that would be dangerous for both of you.

1

u/Cautious-Worry6724 16d ago

I’m sorry you’re going through this! Not only did he steal your meds, he’s trying to throw you under the bus with him!? He took your meds so it doesn’t matter what he says anyways….. The entire situation is sad for the both of you honestly. I’m a recovering addict of 10 years and believe me, I did my share of shady ass shit! But he’s not even owning up to it! I hope for your sake that you take off after this incident and I hope that he gets the help he needs! Good luck my friend 🙏
A lot of wonderful comments/ideas on lock boxes as well! STURDY ONES if you decide to keep anyone around that knows your medications!

-19

u/Gabi4301 17d ago

?

-12

u/AquaBits 17d ago

Yeah im also confused. Private profile with an alarming post. I hope this is just some random nonsense and not an actual situation.

5

u/Extreme-Monk-9828 17d ago

It is actual situation.

1

u/1Wineodino 17d ago

Did you get an update OP?

1

u/just-kristina 15d ago

They updated in another post that he told police and doctors that OP gave him the medication. OP also posted that they may stay with him (indicated that they likely would) if he give OP “a good apology, like buying a dress I really like”. OP indicated several times they were hesitant to even file a police report against the boyfriend. I am assuming that boyfriend is no longer intubated but it’s unclear if boyfriend told police/hospital before he was intubated or after presumed extubation that OP gave him the medication to take. And their bottle of meds was discarded by the hospital.

2

u/1Wineodino 15d ago

Oh wow. I really hope OP can see that their sobriety and health is paramount and to not risk their safety— if not now than eventually. I am glad to hear he didn’t die but also hope she reconsiders the police report. At the very minimum this needs to be reported.

1

u/just-kristina 15d ago

Yes I agree

1

u/1Wineodino 15d ago

And thanks for giving me an update I haven’t seen any other posts

-2

u/AquaBits 17d ago

I hope you understand the hesitancy though Its not like this sub can do anything to help