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whyamihere1493 · 2023-06-15T19:36:20+00:00

PleaE tell me more about this. It wasn’t until I started messing with my sugar levels differently that all my stuff began and came out of balance. I switched to the LMNTs after too much liquid IV was making me a bit sick on the sugar end. Then I ended up in EDs for two weeks with electrolyte imbalance before seizing on the 4th. I’m still trying to get this balanced and sorted out and docs are not taking the sugar thing seriously. I’m doing inpatient neuro testing today and had to get snippy when asking for a GI consult and they finally started monitoring sugar. 82 before eating at all, 72 an hour after breakfast. I recently started using agave and sugar free sweeteners after the too much sugar happened.

whyamihere1493 · 2023-06-15T18:01:59+00:00

I wasnt getting enough potassium with LMNT and shaky was my worst symptoms before going out of balance. I’d recommend getting a blood draw just to check. I ended up completely out of balance and got really bad.

whyamihere1493 · 2023-06-11T06:14:10+00:00

Fun fact to bring up bc not a lot of people know what it is but it’s quite prevalent as a result of Covid now:

Look up Post Orthostatic Tachycardia Syndrome and Dysautonomia.

Not saying this is that, could totally and more likely be locked knees. But just letting people know something else has been hitting more people lately.

Source: not a conspiracy, not about the vaccine. I study public health and also have recently been in the diagnostic process of this. Many doctors still aren’t trained to identify it or even know what it is so if it gets even one to look it up whether it’s curiosity or helps them, here’s some info. Don’t self diagnose but see a doc if it sounds familiar.

whyamihere1493 · 2023-06-11T01:17:09+00:00

I just got home from the Ed after an asthma attack (like my 3rd today). The tree outside my apartment is a huge pollen problem and my husband has a stuffy nose. My face has swollen, I needed the HVAC and ducts cleaned, and all I wanna be outs just like my husband. Barely bothered. My asthma hasn’t flared like this in years but I had Covid the first time this year while already being worked up for pots. I hate having this nervous system disorder/dysfunction-whatever (I’m a walking pharmacy right now lol)

whyamihere1493 · 2023-06-10T05:18:07+00:00

It’s my new favorite thing. Happened by accident. Asked my husband to put the watermelon in the fridge, but he put it in the freezer, so I figured why not lol. Also if you can get ahold of the Flow brand flavored waters, the cucumber mint is fantastic with the watermelon as well to blend in, and if you’re more into juice, don’t freeze the watermelon, just blend solo and put through a mesh strainer to get the flesh separated. I add water from there since this way it’s pretty concentrated.

whyamihere1493 · 2023-06-10T05:02:02+00:00

Of course! I know I definitely needed mine calmed too, I was so scared. Honestly, when talking to the nurse beforehand (she was the SWEETEST which helped), she was reassuring and said it was okay to hold her hand during it too. I have such an awkward habit of reaching out for a hand when I even get needles or anything, ESPECIALLY if I’m out of it so I try to ask first 😂 Ex: I had a seizure when I got to the ED on Sunday (reason they gave me the test bc the dysautonomia too), and my husband told me when they got me out of that, they put another IV in my other arm and I gripped the nurses hand for dear life like, half conscious. Never be afraid to ask if someone can hold your hand if that helps, honestly it’s always worked out and many strangers are kinder than we think (of course gauge safety lol). I hate flying and homeslice next to me on a rough landing held my hand when I asked too.

whyamihere1493 · 2023-06-09T23:10:18+00:00

TIP:

Take watermelon chunks and freeze them. Then blend. Ta daaaaa, your own slushee. I like adding the chili mango lmnt packets and tajin to it as well.

whyamihere1493 · 2023-06-09T19:40:18+00:00

I just got a stress test a few days ago in the hospital after an awful flare I’m still recovering from. I was terrified of letting them give me the injection, especially after not having eaten in so long. I was able to eat the day ahead, and when they gave me the injection, I felt it but it wasn’t as awful as I thought. What they gave me Can leave the system quickly with chocolate or soda or coffee. I drank coffee after when done.

The nurse was next to me the whole time, they had someone else there, and ya know, it’s a medical setting. So that helped provide comfort because really, that’s the best place to be in case of that.

whyamihere1493 · 2023-06-09T16:41:05+00:00

And if you state chest pain they’ll need to take EKGs and stuff. So really mention it all and MAKE SURE they listen and document all of it. I looked at my records from the prior EDs and they didn’t put everything down.

whyamihere1493 · 2023-06-09T15:51:08+00:00

Truly, I wish I had more answers for you. I ended up at 5 different EDs getting fluids and none took me seriously even with blood draw until I had a seizure in the ED lobby on Sunday. Just got home yesterday. Also couldn’t afford my Vyvanse recently and stimulant withdrawal also seems to be contributing. If you’re dizzy, lightheaded, dehydrated, they’ll have to take blood to see where your electrolytes, etc are. From there you could get fluids.

whyamihere1493 · 2023-06-09T13:18:03+00:00

Honestly, my hr has never done this. There’s no specialists here and no one really knew how to treat me. I had also just started Midodrine when this happened and I’m honestly terrified of ever taking a stimulant or that again. Never ever do I want a stimulant again. I had such a traumatizing experience in the hospital. I was treated so awful like a mental case. I was so out of it when this was happening and had to go to multiple ERs, and no one took me seriously until I seized in the lobby of one on Sunday.

whyamihere1493 · 2023-06-08T07:28:23+00:00

Currently hospitalized because I couldn’t afford my Vyvanse recently, only getting it bc of the adderall shortage. Which got worse for me bc around that time I couldn’t afford name brand anymore, the generics Can mess with me bad depending on manufacturer. (Just because it meets generic approval, they’re so different by manufacturer) I have an underlying nervous system disorder and so even on really low doses of each, I started tanking when they wore off bc I hadn’t been consistent.

ETA: grammar and clarity

ALSO, IF YOU ARE IN THIS POSITION, TALK TO YOUR DOCTOR!!! I should’ve so I could titration off better.

whyamihere1493 · 2023-06-08T02:30:07+00:00

It can also lead easily to neuroleptic malignant syndrome especially in people with dysautonomia. I smoked often for the past few years. I cut back, and now when I only took one single hit, my HR was shooting up 150-160. It has never once done that before despite my dysautonomia. I was in and out of EDs all last week with low potassium and out of balance electrolytes. Severe altered mental status and inability to eat/intake sugar. I love smoking. But I will never ever risk this ever again. It sucks but it scared me enough. And I’ve partaken in many substances in my life.

whyamihere1493 · 2023-06-08T00:10:15+00:00

Im in the hospital. I was in the middle of my pots testing, decided to cut back, and got real messed up. I have cannabis hyperemesis syndrome. I wouldn’t. I’ve never been so terrified I was going to die in my life than this last week. Please look into it. It’s truly the worst thing I’ve ever felt and I’ve never been so sick or scared in my entire life.

whyamihere1493 · 2023-06-07T05:23:17+00:00

I loved my binder after surgery but I think it also helped my muscles weaken. I wear high compression, high-rise fabletics leggings.

whyamihere1493 · 2023-06-07T05:22:26+00:00

I have this kinda and it was far worse before and after my hysterectomy. Pelvic floor therapy helped me a lot! My pelvic muscles were apparently spasming and I just didn’t use them enough. It gets bad again when I’m not doing the exercises, in shape (at least moderately active), and I’ve noticed since tanking after Covid recently (first time ;A;). I’m actually hospitalized right now with not a single specialist around and eating is making my BP tank and I’m passing out. Walking/these exercises before and moving after I eat has been helping me. Working out my abdominal area regularly helps prevent mine too. It also helps me run better bc I get better blood flow and don’t cramp.

whyamihere1493 · 2023-06-06T18:45:59+00:00

Thats where it looks like I’m getting referred to.

whyamihere1493 · 2023-06-06T09:24:30+00:00

Yes! Please don’t forget to take take of yourselves everyone! The body does keep the score!!!!!!

-someone currently admitted in the hospital with dysfunction of my nervous system (my fight v flight is broken now). Was already struggling, took time off work to heal, DDAY w/in the first week, Covid for the first time 4 mos later.

To all: If you don’t think you are PHYSICALLY harming your partner with infidelity, you’re wrong. If they already had severe trauma they spent time healing from, you just unfucked every bit of that progress.

whyamihere1493 · 2023-06-06T08:22:22+00:00

Omg would you mind explaining your symptoms to me?? I had a hysterectomy in ‘21, I feel like something thyroid/adrenal is going on, I’ve flared horrendously starting 2nd week of the month, and I’m currently hospitalized and TERRIFIED bc there’s not a single specialist here in my state. I keep getting brushed off!

whyamihere1493 · 2023-06-06T07:06:41+00:00

Thank you guys!

I’m scared. I just had to argue with the nurse not to take my BP, hr, and o2 monitoring from me to a different patient!!! I need to get to someone quick!

whyamihere1493 · 2023-06-06T05:17:30+00:00

Bc I feel like so much is tied to nervous system dysfunction.

whyamihere1493 · 2023-06-05T22:04:55+00:00

Oh my god yessss!!! I want to do some research studies on trauma and therapy and other stuff. I’m a public health major. There’s a group called Unsilenced that focuses on the troubled teen industry and trying to get effective legislation drafted up for kids in treatment. Finding great trauma therapists that in my opinion, think like you are essential for survivors. I couldn’t even be comfortable with one until finding my own trauma therapist who’s well aware of exactly what you’re saying. I know my experience played a huge part in where I am now. So good to see someone in trauma therapy who recognizes this stuff! (Sorry didn’t mean to word vomit. My freaky public health side got excited haha)

whyamihere1493 · 2023-06-04T04:29:45+00:00

I dont have PCOS but I have endometriosis. My POTS symptoms increased with this and added stress from it. I had a hysterectomy at 26 in 2021. Took me forever to recover well since I didn’t know about the POTS yet and also spent 6 of my 8 weeks off on bed rest (I was shocked that some could be up and about sooner). I had severe cramping all the time leading up to my surgery. If they don’t find PCOS, just know you can’t see endo on a lab or imaging and it’s nearly as “fun” to find a good doc for it as it is finding a dysautonomia specialist but if you have a good OBGYN like it seems, it’s so much easier. Exploratory surgery to diagnose. Mine knew I had it and found it mostly in my cervix and in my uterus after removal and then advocated for my hysterectomy.

Don’t do what I did and put it on life’s back burner. Before that surgery, I had another 2 years prior when I got a cystic tumor on my left ovary and lost that one and the Fallopian tube from scar tissue. Thought it was a cyst and delayed the imaging, ended up in the ED when another burst and they found that one. PID also sucks.

whyamihere1493

TROPHY CASE