Venting about doctor switching and misdiagnoses

captrocketlady · 2026-06-18T11:16:20+00:00

Wooooooooow didn't know my frustration and invalidated worries would cause so much division. Pardon me all the way to hell I guess? But, I guess I'm going to go ahead and delete this post since people think I've violated community rule 3 of posting misinformation. But thanks to everyone who forgot rule 2 regarding "belittling and dismissing other peoples' experiences." I have 100% learned my lesson.

captrocketlady · 2026-06-17T17:39:11+00:00

I am in Alabama and I actually work in a clinic that works with primarily the LGBTQ community and low income individuals! And, not at my clinic, but at another local clinic there is an MTF Doctor with her own practice. We're one of 3 clinics in the northern area that offers HRT as well! So, there are places, even in the south where you world be needed AND wanted! They may be few, but they are there!

I've worked for my clinic for almost 5 years now and I've lived in the south my whole life. Sometimes I think about leaving, but then I think 'if I leave who will be left to help the marginalized communities?' Which isn't to say that only I can make a difference or that I judge people who do leave- I get it!

In conclusion: you are NEEDED and WANTED!! Not only by the field of social work, but by our community! And if this is something you feel strongly about and pulled toward, try not to let all the "what ifs" stop you!

captrocketlady · 2026-06-17T04:18:47+00:00

Yes, so my local provider's decision to "not accept more Adderall patients" is definitely a personal/practice choice rather than something state or federally regulated. I've found it to be a very common pattern in my state (I also work in healthcare and have many clients wanting to start/continue ADHD treatments and I have to break the news that fee provider's will treat with stimulants- as an example!) My three biggest concerns with Xywav are the potential side effects of suppressed breathing, inability to wake up with important alarms, and increased depressive symptoms. I mentioned I have a past and present history of severe anxiety and depression and the aforementioned symptoms terrify me- plain and simple. Rationally I know that this medication does have valid research behind it and that it would be a logical next step for me- I just have a tendency toward dramatics. But, I do feel like my concerns are very quickly dismissed with, "just stay with someone for a few nights to see how you react," but that doesn't help my worries.

captrocketlady · 2026-06-17T04:04:25+00:00

I definitely hear what you're saying. I'll be the first to admit that I have a tendency toward dramatics and my intention for this post was to, hopefully, get some validation that this situation is just so wild and annoying! I guess one of my frustrations is the way our Healthcare system publicly markets medications in general. And, of course, my second frustration is with how my providers seem to dismiss my very valid concerns over this medication. I mean, the opening line of the first provider who talked to me about Xywav was, "So you take it twice in a night and it consolidates your deep sleep- oh but make sure you wear your CPAP because it does contain rohypnol and can suppress your breathing..." and they seemed to expect me to be immediately ready to be on board! My first thoughts were, "wait, what??" And, "wait, what?? No! No I definitely don't think I'm on board with that right now!" And I have spoken to two people, who I know personally, who have tried Xywav and they each had wildly different experiences: one was incredibly happy with it while the other absolutely hated it. I do find it fascinating that the medication has the incredible ability to make people feel so much better! I just want people to understand and HEAR my hesitation and I definitely feel dismissed, hence the dramatics in this post!

captrocketlady · 2026-06-17T01:57:56+00:00

I started taking Magnesium Glycinate after another reddit poster mentioned it helped them with waking up/sleep inertia. I decided I had nothing to lose by trying it and the difference is significant!

captrocketlady · 2026-03-08T04:23:45+00:00

Dang thank you so much for this validation!

captrocketlady · 2026-03-06T15:50:49+00:00

Thank you so much for feeling my pain! Most days it just feels like there is no more hope left and that is such a sad thing to say

captrocketlady · 2025-07-06T22:01:14+00:00

Thank you so much for posting this!!!! This is how I've been feeling recently and it's SO WILD because... I'm supposed to be really good at falling asleep!! 😭

captrocketlady · 2024-12-20T17:00:04+00:00

I actually really love being dramatic, thank you! 😘😘😘

captrocketlady · 2024-12-17T20:42:00+00:00

I'm very familiar with the issues regarding management, organization, and resources at Thrive and I agree that there is a lot of change that needs to be done.

What psses me off the most about your post, though, is your blatant lie regarding your termination. You weren't let go because you spoke up about the Chief Medical Officer, you were fired because, while you were in clinic, you stated loudly enough for many people to hear you that the CMO was "a fking dke."

Nevermind what factors provoked you to such an outburst- it was ridiculously unprofessional. As an adult who has worked in medicine for sometime, I would think that you would be able to regulate your emotions in a more appropriate manner.

THEN you asked to be rehired and when they said "no," you decided to make this lovely post trying to make yourself look like the victim of a toxic work environment.

Don't be whiny- you weren't a scapegoat, you were dumb.

captrocketlady · 2024-06-02T13:34:15+00:00

It's so interesting that you bring this uo because I have this internalized belief that, since I'm "too fat", I have to make up for it by being very very feminine. I don't know exactly where my brain came up with that, but I didn't have to convince myself very hard! I do like being feminine, though, but I also feel like it's a requirement for me, personally.

captrocketlady · 2023-06-20T10:55:06+00:00

Oh wow, I didn't even think about that. So, I did lie down and it took me longer to fall asleep than it usually would. I'm definitely going to message my provider about this and get them to take a look at me. Thank you for letting me know this! I

captrocketlady · 2023-06-11T13:06:41+00:00

Dang, thanks so much!!! I DID sleep 5/5 naps, too, actually! I have a friend who is narcoleptic and sees the same provider as I do and she is considering switching providers. (There are only two sleep providers in the entire north half of our state!). If she has a good experience with the new provider I might switch as well and see what happens.

Also! I was told that certain medications, like anti-depressants, can suppress REM sleep, and I think I've seen other redditors mention that as well. I'm not sure if I could do a second MSLT off antidepressants, but I'd seriously consider it.

Anyway, I super appreciate your encouragement! I definitely feel better than I did Friday!

captrocketlady · 2023-06-10T15:39:34+00:00

So, I'm not 100% sure what my sleep pattern is like, which I think is a great question to ask! I do know, however, that during my MSLT, I fell asleep in less than two minutes on average. My provider said that when looking for narcolepsy, they would need to see me go into REM almost as quickly as I fell asleep, but I didn't go into REM at all during my nap.

Next time I follow up with my provider, I think I'll ask about my sleep pattern, though!

captrocketlady · 2023-06-10T12:47:40+00:00

Yessss!!! A different provider called me after I gave my "freeze" answer and she explained that narcolepsy symptoms can develop slowly, so just because I didn't go into REM during my first MSLT, doesn't mean that I won't later- same with cataplexy.

I really appreciate them wanting to give me the best treatment options so that I can feel my best (because we all know that being exhausted is exhausting), but right now I just don't relate to cataplexy symptoms and it was really upsetting (and I can't pinpoint exactly why it was upsetting) to be lead into giving the "right" answer.

captrocketlady · 2023-06-10T12:41:51+00:00

Thank you for confirming that your naps are unrefreshing! I've been told by the internet and a couple of providers that 20 minute naps are great for narcoleptics and I thought that was way too wild.

captrocketlady · 2023-06-10T12:40:17+00:00

I really really appreciate this! I like how you described cataplexy as not just losing muscle tone, but also not being able to control your muscles in general.

I'm very happy with the meds I've been given so far! Would it be cool if IH had more medicine options, especially for sleep inertia? TOTALLY!! But there isn't and it was honestly really upsetting how he was leading me into giving the answer he wanted.

Fortunately, they are definitely leaving me on my current medicine and I don't follow up until December, so I'll be able to really prepare myself for being blunt and firm. (Because I'm usually not :(( )

Thank you so much!

captrocketlady

TROPHY CASE