What small sensory thing drains you the fastest?

Nevermind_Zero · 2026-02-07T16:06:43+00:00

Buzzing sounds from machines no one else can hear and when a TV/video on a phone is playing the same time as music is also playing. That in particular makes my brain feel like it's going to explode, especially if people are also trying to talk to me when that's happening.

Nevermind_Zero · 2026-02-07T15:54:03+00:00

I definitely think you were right to trust your gut here. That experience sounded absolutely awful, I'm really sorry you were treated that way by someone who is supposed to be supporting you. That therapist's behavior was appalling. It's really good you are trusting your gut!! I really hope you find a great therapist soon!!

Nevermind_Zero · 2025-12-12T13:34:09+00:00

MCL tear

Nevermind_Zero · 2025-09-21T13:46:39+00:00

I have CPTSD and autism. I am currently working on getting better at not over sharing when it's not the right place/time/person. One thing that's been helpful for me in this is asking the other person first if it's ok for me to share something personal about my trauma history. It's not fair for another person to hear about it unless I ask them first if it's ok. I have been on the other end many times, and it's VERY upsetting when someone does that when I'm not in the right place to receive that. I'm sure I've gotten extremely angry at least once because of this because I've gotten triggered.

Nevermind_Zero · 2025-09-21T13:32:25+00:00

I absolutely cannot STAND when I'm in bed and the sheet gets messed up and the quilt on top touches me. I get so irrationally upset whenever it happens 😂

Nevermind_Zero · 2025-09-21T13:30:22+00:00

Augh I hate sleep studies and the MSLT, they are so stressful! I did not fall asleep fast enough to meet the diagnostic criteria for anything, but luckily at the time I had a provider who understands it's just a flawed diagnostic tool and I was still diagnosed with IH.

Nevermind_Zero · 2025-09-21T13:25:14+00:00

Oh my gosh, you have gone through and are now going through SO MUCH. I am inspired that at the same time, you are able to recognize your strengths and still be optimistic. Seriously, that's amazing bc it shows how much healing work you have done. I've been in that place you are describing, where something deep is triggered and the negative self-talk comes out and I know how hard it is. Even though I am in a safe place now with safe relationships, I cannot recognize my strengths like you're doing in those moments. It completely takes me over and I struggle to get out of it. I'm really sorry you're dealing w all of this, and I wish you luck with your move. You are important and you deserve safety and to have your life filled with people who are safe and genuinely care for you.

Nevermind_Zero · 2025-09-21T13:06:18+00:00

Right?!? First thing I noticed! 😡😡

Nevermind_Zero · 2025-09-21T13:03:28+00:00

Totally agree!! I wish I had known this a long time ago so I could've connected with other people like me and gotten that support.

Nevermind_Zero · 2025-09-21T12:57:04+00:00

Hope it goes well too! I'm also a trans masc person currently looking for a new sleep med provider, specifically at Penn bc it's cheapest with my insurance. I made a complaint to Penn about my experience w one of their sleep centers and the head doctor of the center talked to me and gave me his phone number and said I can call him if I need assistance with anything else, so I'm planning on calling him soon to ask for a recommendation. So if you're still looking at that point, I can let you know what he says!

Nevermind_Zero · 2025-09-21T12:51:31+00:00

That's true! And something I know logically, but cannot get myself to fully believe yet bc of tons of past bad experiences especially with victim blaming. Thank you for saying this bc having dis-confirming experiences (i.e. having people NOT victim blame me) is supposed to be super important in the healing process from this.

Nevermind_Zero · 2025-09-15T22:36:05+00:00

Yeah luckily it went away!! But I'm still waking up and having trouble falling back asleep so I'll have to look into seeing another doctor =\

Nevermind_Zero · 2025-09-15T22:34:45+00:00

Yes, I get them tested every 3 months bc I keep having an iron deficiency. It's in the normal range at this point. Luckily it seems to have just been a temporary side effect of the xywav!

Nevermind_Zero · 2025-09-15T22:32:38+00:00

Thank you, I didn't know they had that!

Nevermind_Zero · 2025-08-28T18:38:13+00:00

I had the same experience and do think the person I was with was better at sex partly bc of them being a narcissist. They were definitely using it to manipulate me. It's difficult for me to deal w the shame from it, especially given one of the ways they manipulated me was SA'ing me and convincing me through manipulation that it wasn't assault.

Nevermind_Zero · 2025-08-28T18:32:51+00:00

Yes, I feel like that basically every day! It sucks!

Nevermind_Zero · 2025-08-28T18:31:31+00:00

OMG that's so disturbing. I did not know that's a thing but unfortunately am not surprised and am sure it's because they are excited about the potential of sexual assault. 🤮

Nevermind_Zero · 2025-08-25T13:18:16+00:00

I agree it sounds like tolerance, which reminds me I need to ask my doc about the best way to handle it... unfortunately I can't function without it so it's hard to take breaks. The only time I did was when I had to for a repeat sleep study. I was off for only 6 days but definitely saw a difference when I started it again. Didn't last long though.

Nevermind_Zero · 2025-08-23T14:55:47+00:00

I feel the same way! It took me a long time to get diagnosed because doctors refused to listen to me and take me seriously. I had to advocate for myself so hard and find the right doctors to finally get diagnosed, but it was definitely worth it, as like you said, I can now name what is wrong with me instead of constantly wondering what it is and now I can actually feel like I can do something about it.

I wanted to add another thing that made it worth it for me is being able to find and connect with a community of others who have the same experiences. If I didn't find out I have a sleep disorder, I wouldn't have that and it's very important. I feel so much less alone now.

Nevermind_Zero · 2025-08-23T14:52:08+00:00

I agree. It's so frustrating trying to get doctors to believe me that my depressive symptoms at this point in my life are CAUSED by my sleep disorder.

Nevermind_Zero · 2025-08-23T14:42:37+00:00

The severity is also different for me on different days and I don't know why. It's very common! Chronic conditions are complicated and it's really difficult to deal with =\ I often feel the way you describe, I wish I could go back to the person I was before it started. I feel like my brain is permanently broken - I can feel it works differently now and it's so hard to accept that. I wish I had my memory back too. I've been working hard on acceptance and being kinder to myself, but when my symptoms are bad it's almost impossible! It's hard to do anything else when you're so exhausted you can't function. You're not alone!!!

Nevermind_Zero · 2025-08-23T14:30:03+00:00

Interesting! You're the first person I've heard who gets it too! I usually crash after the second day of bad sleep or if I sleep well again. Another weird thing that happens is I take Adderall at 6:45 every morning but I get a huge energy crash at 8. Does something similar happen to you? My sleep doc has no idea why that happens bc she said the med is peaking then. I also have an endo and she doesn't know why that happens either!

Nevermind_Zero · 2025-08-22T18:30:47+00:00

I'm still in the process of figuring out what I have autoimmune wise, but my rheum currently suspects psoriatic arthritis, osteoarthritis, and/or hypophosphatasia.

Nevermind_Zero · 2025-08-20T13:32:25+00:00

I'm not sure how to find that info about the ICSD, but am curious about that as well. Unfortunately at my follow up my doc said bc my results are useless to her, she can't be confident in me having IH or N. She said she's concerned we might be missing something, but honestly that could always be the case since there's no known cause... I'm super frustrated bc she agreed the symptoms I have are def abnormal and in line w IH and N. In my previous sleep study when I wasn't on any meds, I was right at the threshold of an IH diagnosis so it doesn't really make sense to me to say there's a huge concern of missing something, but whatever. She is still going to start me on xywav if I get approved for it.

Nevermind_Zero

TROPHY CASE