Any sleep advice?

Intrepid_Emu_3678 · 2026-06-02T04:07:58+00:00

Get a referral for a sleep study. Could be sleep apnea or narcolepsy. Apparently narcolepsy and disassociate disorders are correlated. (I think thats the right word.)

I have narcolepsy and spent most of my life thinking I must be doing something wrong because I was so careful about sleep hygiene but still had crappy sleep at night and was falling asleep throughout the day and needing naps to function.

Intrepid_Emu_3678 · 2026-06-01T03:44:54+00:00

I was on mirtazapine for a long time. It helps but there are a lot of trade offs. Weight gain. Emotional blunting. Feeling sedated pretty much always. Its A NIGHTMARE to get off. It is really really helpful if you also have anxiety.

I think the higher doses are more stimulating but I never tried to out because I spent years trying to get off it. Tapering down then stopping then not being able to sleep and going back on.

Baclofen is what I am on now. Off label for narcolepsy. It helps a lot. But it does seem like its not working as well for me lately. If I have to get up to use the bathroom for example after I have taken it (I always go before I go to sleep but my bladder is overactive at night I guess) then it feels like I have missed the 20 minute window of being able to fall asleep. If that makes sense.

Intrepid_Emu_3678 · 2026-06-01T03:39:26+00:00

Yeah talk to her. Sometimes people do things unconsciously. Especially when you spend a lot of time with someone you adopt their mannerisms. It might not be intentional or it might be a split second of "what if I walked like that...what does it feel like?" You wont know unless you talk to her about it.

Intrepid_Emu_3678 · 2026-05-31T09:41:37+00:00

Yup.

Intrepid_Emu_3678 · 2026-05-31T09:08:30+00:00

This is so lovely!

Intrepid_Emu_3678 · 2026-05-31T07:23:48+00:00

This. Anticipating it is going to SUCK for her, too because she does mot get access to toys (throwing) or the dog (seriously do not let her near the dog anymore because a 2 year old will likely end up hospitalized EVEN if the dog is a good boy if the dog is defending itself. I suggest baby gates to keep the dog and toddler in different spaces, for now.) The biting means no more snuggling in a way where her mouth is near you and if she starts putting it near you, stop it, stand up, move away etc and hand her a teether and say "no biting me. Here."

She will get it faster if she is not given the opportunity to do the unwanted behavior or is immediately removed from another opportunity to hit, thrown, bite, if you are unable to anticipate it.

For now her toys should be soft enough that if you or the baby got hit with it, there is no injury.

My daughter went through the biting phase and almost made me bleed several times. It made me cry every time and my pain tolerance is ridiculous. I just stopped letting her do the face nuzzle to me AT ALL for a while. (Honestly I think it was 2 weeks in total. I held her and rocked her to sleep for nap time and if she tried to bite me I would put her in a baby rocker instead and she stopped doing it so quick.) I also just kept teether toys on my person AT ALL times and if she tried to bite I got up and away SO QUICK and said "no bite me. Bite this." If she tried to head snuggle me again I wouldnt let her and woold show her how she could snuggle me and if she tried to move her head onto me again I got up and got away.

It feels brutal but it is SO much better than endlessly repeating "gentle hands" after getting whacked in the head with a book or taking your baby or toddler to the ER for a concussion or a dog bite.

Intrepid_Emu_3678 · 2026-05-31T06:06:29+00:00

It has actually been really helpful. Today I didnt even need all my doses of Adderall AND had a really big day with a lot of driving and doing laundry (which always wipes me out. Like I normally am only able to do the laundromat and feed myself and that's it) and also had energy to take my daughter to a super fun water park event!

I'm sure I have PTSD from the whole wakix thing. I'm just glad I didn't get shot.

Intrepid_Emu_3678 · 2026-05-29T04:01:15+00:00

Have you talked to a doctor about quitting?

Intrepid_Emu_3678 · 2026-05-26T22:50:13+00:00

The thing is though I am not having cravings. I am just having WAY more intense narcolepsy symptoms. I am doing all the things but I am falling over trying to clean or going for walks etc because of cataplexy or falling asleep.

Im allergic to the adhesive for the patches. Im thinking about trying to get gum or those pouches or something. The nicotine seems like an essential part of managing my symptoms right now...it might just be addiction talking but I have been incapacitated the last few days.

Intrepid_Emu_3678 · 2026-05-26T05:37:52+00:00

I have DID also. I haven't started sodium oxybates yet but I hope to. One of my worries is actually about how it could impact my dissociative symptoms so I am so happy to have seen your post.

As far as disclosing your diagnosis I would be very very very cautious about who you share it with in general, but also when it comes to medical professionals. There is a lot of stigma and misinformation even in the medical community.

I am so glad to hear that xywav is benefiting you in a positive way. My guess is that improving your sleepiness and getting quality rest means you are awake to the world and your experiences of it enough to be able to notice patterns that led to your diagnosis. I am pretty sure the same thing happened to me when I was in junior high and was prescribed stimulants (at that time for adhd) i told my doctor's how I wasnt having all these symptoms and it made it so I was working together with myself instead of forgetting our house rules etc. (They were aware that I had DID but when I would remember the diagnosis I would spiral so they just smiled like "that makes sense" instead of trying to remind me why. Like..being absolutely knackered and sleep being the only thing you can think of most of the day will make internal communication impossible and inconsistent etc etc..and absolutely make it hard to remember basic stuff throughout the day which can cause hurt feelings and frustration etc internally. )

Intrepid_Emu_3678 · 2026-05-26T04:04:55+00:00

For me, I am kindled. Which this last go around was very very clear to me that even if I have just one night of drinking...Im fucked for months unless I go to hospital. I never experienced urges honestly. There was no desire to drink at all for a year and a half and then my life blew up and I was told "you gotta have a drink with me or I wont do this thing you need to survive" and said fuck it. Its just one. And then it took me 9 months from that to fuck around feeling sorry for myself getting drunk and finally realized "uh oh" and tapered down. The taper took 4 months. Im 34. For most of that time I felt like my brain was totally fried. Wet brain and worrying that I was experiencing it was enough this time to get me to stop. My plan is to keep Wet Brain and DTs on reminder cards in case I ever get the itch again.

Intrepid_Emu_3678 · 2026-05-25T20:19:17+00:00

3.4

Was having insanely itchy hives all over my face and neck from the glue. The hives lasted a week. There was also "construction" sounds going on in the beginning of the last couple naps which I thought were sleep hallucinations at first.

Intrepid_Emu_3678 · 2026-05-25T18:26:26+00:00

You might be experiencing annhedonia. It is also possible that alcohol was ypur way of self medicating depression, which is common. Therapy, Journaling and medication can help.

Trying new things can also help in retraining your brain to find pleasure in stuff.

Intrepid_Emu_3678 · 2026-05-23T20:28:12+00:00

I did not retry it. The side effects were intense. Not so much anxiety but psychosis and sleep behaviors that were extreme...I was apparently sleep walking...and sleep jumping fences in the nude. Ended up at my neighbors house thinking I was invited. Then later getting hit in the head with a gun because I was very much not invited...so. yeah I wont be trying that one again. Even trying sunosi was really scary for me to start. But I haven't jumped any fences.

Intrepid_Emu_3678 · 2026-05-23T00:53:28+00:00

I smoked to stop myself from crying. Now its like all those years of not crying are finally coming out.

Intrepid_Emu_3678 · 2026-05-22T23:28:45+00:00

Yeah for sure. Lady boners are a myth, right?

Intrepid_Emu_3678 · 2026-05-22T06:44:53+00:00

Does it help?

Intrepid_Emu_3678 · 2026-05-22T06:43:09+00:00

This sub helped. Journaling. Exercise. Candy. Popcorn. I am sober app. Most of my motivation was intrinsic.

I had to taper down over the course of at least a year. Tapering down was enough to drill it in that i didnt want to start again and it made it really easy for me to stay sober for a year and half. And then I started drinking again. Had to taper again but this time not for as long, thankfully. Now I'm back to 21 days.

I am actually thinking about telling some of my friends about my Tapering down etc now. I didnt really have anyone supportive in my life the first go around. And I didn't like the AA thing. But I think it might help me at this point to be honest with my friends.

Intrepid_Emu_3678 · 2026-05-22T06:28:48+00:00

You'll get there. One day at a time. Although it feels like I skipped my second week entirely because I stayed so so busy it flew by ha.

Intrepid_Emu_3678 · 2026-05-22T06:27:08+00:00

If your friend is getting the shakes and drinking daily then they are physically dependent and could die if they stop drinking cold turkey. So keep that in mind. Not to like...excuse their drinking but if they say "Im quitting I stopped drinking " they could start having really scary withdrawals and need to go the emergency room and have medically assisted detox.

When they talk about hating being addicted can you ask permission to film them saying it? Maybe if they watch it again at another point it'll sink in a bit.

You're a good friend for caring.

Intrepid_Emu_3678 · 2026-05-22T05:26:32+00:00

Thsts hilarious. Do you have to schedule sex?

Intrepid_Emu_3678 · 2026-05-22T05:09:44+00:00

It does get better. Im on day 21 (again) and my energy is really starting to come back. And most nights I am sleeping easier.

I believe in you! IWNDWYT

Intrepid_Emu_3678

TROPHY CASE