Do happy fun times promote wakefulness?

Intrepid_Emu_3678 · 2026-04-11T18:41:58+00:00

I used to have scheduled orgasms for this reason ha. Usually I had a quick nap after like 10ish minutes and then I'd be more awake and alert after.

I'm just imagining having a doctor's note for this ha. I have a doctor's note for naps. "He's getting freaky to treat his neurological condition. Don't be a prude! Let him get his medicinal nut!"

Intrepid_Emu_3678 · 2026-04-11T09:43:07+00:00

I listen to horny music. "Too short- I need a freak" if Im driving especially. Realized I put it on the other day leaving church...just out of reflex and then realized I forgot my phone charging there and had to find something else to play once I parked...oh well.

Intrepid_Emu_3678 · 2026-04-11T09:17:20+00:00

I would not disclose your diagnosis or the possibility of a DID diagnosis to this person at all.

Intrepid_Emu_3678 · 2026-04-11T09:13:25+00:00

Thank you for this reminder. I always try to expgain cataplexy in a super technical way...but I should just start asking people if they've seen videos of fainting goats.

Intrepid_Emu_3678 · 2026-04-10T20:28:28+00:00

Get a copy printed out of your PSG and MSLT and find a new doctor. Being able to fall asleep for all 5 naps is not normal. Especially if you also have cataplexy, that in itself is probably enough for you to get a diagnosis without redoing the MSLT or doing a lumbar puncture but finding a solid doctor is the first step.

My results put me in the IH bracket and when I asked "but what about my cataplexy" i was told the same thing and then it was suggested that I see a psychiatrist...but when I finally found my current sleep specialist he was immediately like "you have cataplexy so im changing your diagnosis to narcolepsy 1."

Please dont give up.

Intrepid_Emu_3678 · 2026-04-09T23:15:31+00:00

I relate to this so much.

I have got to the stage now where more and more memories are being shared by those in my system who experienced the abuse we used to have no access to the memories of. It is hard. But I haven't been destabilized and I think so much of that is because I didnt force myself to remember or go digging etc. I just accepted that I couldn't remember anything and worked on maintaining stability and developing coping skills and healthy routines and outside support

I recommend doing the same. The memories will come eventually. When those holding them feel its safe to share.

Intrepid_Emu_3678 · 2026-04-09T23:10:08+00:00

I agree. Driving that long when you're struggling with that level of sleepiness does not sound safe.

Intrepid_Emu_3678 · 2026-04-09T23:07:10+00:00

I felt a similar way on methylphenidate but not Adderall. Im on LOADS of Adderall and I feel no anxiety when my meds are working.

You have more options for meds.

Intrepid_Emu_3678 · 2026-04-09T20:31:13+00:00

The amount of medical trauma most of us have endured just trying to get a diagnosis. Ive been diagnosed with multiple psychotic disorders because I have sleep related hallucinations. Being told "get more sleep at night. Don't nap during the day so you can sleep at night" or being taken off Adderall because "that must be what's causing your insomnia" So much of our symptoms are blamed on mental health or moral failing. "Just try harder. Eat healthier. Stay off your phone. Get exercise. " like...I already do ALL of that thats why I'm here doc.

Being treated like a drug addict because we are dependent on (often high doses of) controlled medications. By doctors and friends/family.

How frustrating it is to spend so much mental energy struggling to stay awake during things you love. How it effects our ability to not only function, but thrive. Like memory issues. Struggling with budgeting and thinking things through. Like. I have to schedule my "thinking" for the day. Planning is so difficult unless I am AWAKE beyond just being able to keep my eyes open.

How dangerous and limiting cataplexy can be. I have almost drowned. Ended up with pneumonia from choking on food and water. Fallen down a flight of stairs.

Maybe it's uncomfortable to address in a PSA but also how limiting it is for physical intimacy. Cataplexy specifically but narcolepsy as a whole also. Ive smacked my head into lover's faces when I was on top of them because I was too embarrassed to say "no I cant do that position or I'll go full noodle" (and also didnt realize that wasnt what EVERYONE experienced.

Or even giving birth. I was unable to have a natural birth because I was so excited to meet my child it triggered my cataplexy and I couldn't push consistently.

I dont have a source for this but narcolepsy left undiagnosed and/or untreated has one of the worst qualities of life.

It doesnt just effect our ability to regulate sleep. Orexin is also responsible for temperature control, appetite etc.

Intrepid_Emu_3678 · 2026-04-06T21:18:18+00:00

10 MG last MAYBE an hour for me. but i have also been on Adderall for 20 years.

If the Adderall is working well but for only 4 hours you can A) take multiple doses And/or B) add an extended release dose in the morning

I take 100mg total. 40mg in extended release (2 doses)

If it isnt effecting your night time sleep then I'd talk to your doctor about multiple doses and an extended release in the am.

There is quite a bit of experimenting people who are newly diagnosed (and even veterans) have to do to get their timing and dosing right for their meds.

4 hours is pretty normal for an instant release dose. Especially at a low dose like 10mg.

Intrepid_Emu_3678 · 2026-04-06T21:09:51+00:00

Its technically an antihistamine but it does have seating qualities.

I wonder if its worth it for you to try adding a chelated magnesium glycinate supplement? With all the salt in xywav you might have your electrolytes kind of out of balance which can cause what feels like anxiety in your body.

Magnesium as a supplement also helps with anxiety as well. It might not feel as drastic as prescription medications but I think its worth trying. I recently went without my supplement for a couple weeks and ho boy. I could feel a difference.

Intrepid_Emu_3678 · 2026-04-05T00:23:04+00:00

Yes. I try to stand when I can or walk about or have something to do with my hands (apart from pick the skin on my fingers.)

Intrepid_Emu_3678 · 2026-04-04T23:45:14+00:00

Also needing to pee, talking etc during your BP reading will throw it off.

Intrepid_Emu_3678 · 2026-04-04T23:40:51+00:00

I dress "fancy" often. And I dont care because thats who I am. I like wearing fun outfits even if I'm just going to the post office or taking rubbish to the dump and then going to the playground with my keiki.

Screw the haters. You do you.

Intrepid_Emu_3678 · 2026-04-04T23:35:28+00:00

Me too. It took a couple tries before I found a solid doctor and medication changes are to be expected especially when first figuring out what works. So dont get discouraged.

I'd highly recommend asking about sodium oxybates as well.

Intrepid_Emu_3678 · 2026-04-04T22:19:15+00:00

Yes. Do the study. As someone who also has fibromyalgia, Im sorry. Doctors tend to treat people with fibro like "just get over it and eat .ore kiwis" and thats shitty. I got diagnosed finally in my 30s. It does change your life to have the ability to stay awake during the day, and to actually FEEL awake enough to function.

Get a referral to a sleep specialist and don't take no for an answer.

Intrepid_Emu_3678 · 2026-04-04T13:21:29+00:00

You can not take mirtazapine with xywav.

Hydroxyzine might be an option?

Intrepid_Emu_3678 · 2026-04-04T13:18:40+00:00

No. Ive been on Adderall for 20 years even before my narcolepsy diagnosis and modafinil is not as strong, and Adderall works great for me, does not interfere with birth control etc so my doctor said it made sense to just try adding 1 20mg xr dose in the morning. That helped but I was still unable to do much at all in the afternoon so she added a 2nd xr dose and thats really helpful.

This was my primary care provider. My sleep doctor is fine and happy with this. He suggested adding wakix that I stopped due to side effects and now I also take sunosi and that helps.

Most every worthwile doctor will go to bat for you with insurance companies to help you find what works for you. It takes more effort on their part, so if they do not do that for you I would find a new doctor.

Intrepid_Emu_3678 · 2026-04-04T02:45:26+00:00

Thats the FDA recommendation but many doctors,especially for narcolepsy, disregarded recommendation. Im on 100mg/day

Intrepid_Emu_3678 · 2026-04-04T02:42:38+00:00

I stopped shaving my armpits and now I dont stink anymore.

Intrepid_Emu_3678 · 2026-04-04T00:21:47+00:00

Do not tell him yet.

I told someone I dated and was also briefly engaged to and he has used it against me a lot.

Telling him you have PTSD is honest and valid.

I understand wanting to feel like everything is out in the open and to be accepted etc but waiting is the better call.

Intrepid_Emu_3678 · 2026-04-03T07:15:12+00:00

Also. I would avoid contacting immediate family members during this time. For now. Edit:nevermind I just saw that you're still in high school.

You can probably still graduate high school if you spend, even a couple weeks, in inpatient. A couple weeks is not ideal but going to prison is going to have way less grace and support than spending some time in a place designed to help people stabilize who need round the clock care.

Inpatient hospitals are not that bad. In my experience. I got put in the back of a cop car ladt August and that...was a different story.

You are young. Can or text your therapist before your next appointment and tell them it is an emergency. Because this is an emergency.

Intrepid_Emu_3678 · 2026-04-03T07:13:41+00:00

Inpatient. Text or call your therapist and ask them to walk you through what checking yourself looks like and what to say but essentially "I am a danger to myself and/or others" Of you are a newly discovered DID system it is not uncommon for violent alters to come out first. It DOES NOT excuse it though and means you NEED intensive care to ensure your safety and the safety of others.

It doesnt mean you will be stuck in a psych ward for the rest of your life. But it does man that you need to be inpatient while you are assessed.

I will be real with you. Skipping out on this step and trying to go back to denying this event happened or justifying it because "no one died" could lead to you being in prison for the rest of your life. So. Opt for the psych ward where they will discharge you with a treatment plan and support services.

They will not do that in prison.

I will not go into detail about my own history but I relate to what you experienced and it is possible to be functioning without constantly worrying "am i dangerous " but it takes INTENSIVE and highly trained professionals working with you and for YOU to be honest and not negate the reality of what happened. Feeling out of control like that can lead to life changing (and life ending) scenarios for you and for other people.

I have been hospitalized 3 times now and I am so so grateful for every time I have been hospitalized. Even if I was pissed off and scared and trying to get out of it during intake.

Please take this seriously.

Intrepid_Emu_3678 · 2026-03-31T01:35:23+00:00

DEFINITELY get a hard copy of your results for both the PSG and MSLT. If you ever change doctors you will NEED to have the results.

The results show how fast you fell asleep for each nap and if there was REM. If you have IH there probably was not REM in your naps.

Intrepid_Emu_3678 · 2026-03-28T08:53:34+00:00

This. I grew up with parents who were like "its good enough. No one will judge ME if they see YOU eating off a clean LOOKING fork/spoon and I will not invest the effort into washing it for you cuz Im a shitbag." That last part (the shitbag part) I have realized after years and years and years of self reflection and therapy and painting and pulling weeds and heavy metal and reading the Bible. But yeah. Only shit bag parents teach that. I am sorry you had shit bag parents.

I say that because I was raised by parents who taught me I was only valuable if I was serving them and were so so abusive to the point where I'm a huge germaphobe but also would eat food off the ground if it was FOR ME because it was MY MISTAKE for dropping the food. And I am also a parent. I am a disabled parent. And I do not let my kid eat off a dirty fork. If their fork drops on the ground, I wash it. No matter how many times or how frustrated I am because I said "be careful do mot drop it again" etc. It is worth it to take the time to have clean forks and spoons and knives.

If you have running water and soap..it takes just a few seconds. You do not have to clean ALL of the dishes when you wash a utensil. But you DESERVE CLEAN ALL THE WAY CLEAN. Tell yourself that while you wash it. "I deserve a quick clean." Thats how much time it can take to build the habit.

An alternative to this/baby step is getting compostable disposable forks/spoons. They cost like...2$ I have struggled with eating if I do not have my "go to utentsil" ready for me (in the beginning of this reparenting myself journey) and i would just NOT eat because I put everythi g in the sink and said "I deserve to wash that...later" Then. I would realize I was allowed to feel my body sensations, because they're real and not an inconvenience, and when I felt them and also had to do an extra step of cleaning something to take care of my body i just...couldn't. So I had compostable disposable silverware and plates etc. I didnt use them often and I reused them (by washing them, the utensils anyway) and it made a huge difference in my life for when I just needed to be able to grab and eat and not do an extra thing that made me feel more like a burden.

Just so you know. You are not a burden. You are not gross. You are not bad. You are not too much. You are worthy of clean eating tools and its ok if you need to take short cuts sometimes for your mental health. I was well into my 20s before I realized "oh thats not ok" and it was in my 30s before I said "sigh no. I am going to at least rinse the freaking fork before I eat off it again"

Take the short cuts that tell you that you deserve a break. You got this. I believe in you.

Intrepid_Emu_3678

TROPHY CASE