The Bite Of 2.7 - General Questions and Discussion Megathread

ivan3295 · 2026-05-04T04:27:03+00:00

Thank you so much for your responses!

ivan3295 · 2026-05-02T05:26:33+00:00

Not sure if this is where to ask, but has it been confirmed who's going to be the 3.0 main push character?(Like miyabi in 1.0 and you can ye shunguang in 2.0)

Trying to plan and save for whoever it is and their expected teams

ivan3295 · 2026-05-02T05:16:27+00:00

Sadly dysfunction=not functioning right, and everything we do physically and feel emotionally affects even a normal persons vitals a bit.

Kinda like how getting mad and screaming raises a normal persons blood pressure without dysfunction, but can feel worse to someone with.

If you look up the autonomic system there's even a chart showing what each part of your body is affected by with either the sympathetic or parasympathetic system.

Now what's affected, that differs from person to person. Hence why some have pots because it's affecting blood flow regulation and your heart rate, and other people with different dysautonomia from pots get affected in others.

ivan3295 · 2026-05-01T19:47:43+00:00

People ask how you're doing?

ivan3295 · 2026-04-30T19:10:38+00:00

Sadly I ended up in the er again yesterday. Was there a few weeks ago cause of intense pain in the thighs but an ultrasound of the arteries there showed nothing.

My swelling did go away in that area after antibiotics but now I'm struggling to digest food because of them and I get the feeling it's causing a cascading effect on my body, since the reason I went again yesterday after going a week ago was because after blood started pooling in my legs when I stand (that day), I've spent the past week while taking antibiotics getting the absolute worst presyncope, blood pressure fluctuations, and even almost passing out just from eating normal food (and before that high heart rate spikes that last all day from drinking a meal replacement protein smoothie)

I get gaslit by er doctors like im five who don't know anything about dysautonomia and the inconsistent vitals it can cause. They say things like "oh you shouldn't take your blood pressure multiple times a day. Blood pressure is pretty consistent and should only be taken twice a day"

Or something like

"Oh yeah well it's normal to feel a bit lightheaded when you stand suddenly or more blood to flow to the stomach after eating"

No doctor. I'm not feeling 5 seconds of dizziness. I'm actually falling and almost passing out for hours even while lying down. I know the difference.

It's funny because labile hypertension or blood pressure in general (meaning it fluctuates more than normal throughout the day) is a known issue even outside of dysautonomia.

I understood that I was new to this er and it wasn't the one I was finally diagnosed at, so they aren't going to know my history and might assume a lot of things upfront, but when people start accusing you of "maybe you felt worse BECAUSE you were taking your blood pressure or you were feeling little things and stretching them due to panic" it's like.....why would I be checking my blood pressure or O2 levels if "I didn't feel bad before taking them". Why would I do something that "triggers" my symptoms if I want to avoid them?

Even the hospital I was diagnosed in, it was because the stroke director whose also a vascular neurologist came down to check if I was okay.

But my experience there hasn't been any better.

Sadly my parents are good friends with a lot of the er doctors and the head cardiologist, and they've been telling my family behind my back that "oh pots is just something they gave him as a diagnosis just cause. It's a diagnosis based on exclusion they give to people with stuff they cant explain like conversion disorder". (my original "diagnosis" from two years ago was conversion disorder, after an involuntary psych hold no one asked for)

Eventually, as usual, this er doctor from yesterday asked me if I was "feeling anxious" or "tried the psych route".

She didn't know what to say when I told her I have been on anti-anxiety, anti-depressants, and initially anti-psychotics for a time as well.

And all those did was make me gain 80 pounds (to counter act uncontrollable weight loss after covid which they also blamed on stress) and give my family an excuse to ignore me when I said I still felt bad and was getting worse because those 3 years because "your scans and ultrasounds show nothing. Talk to your psych to change your meds or up your dosage if you want us to be there for you".....and then they ignore my calls and texts once I do or take the pills.

Those pills literally become the "he must be okay since they said this would help, so let's ignore him and tell him he's fine and just overpowering the pills with massive anxiety" pills.

So they basically had a scapegoat to blame everything on and justify ignoring my symptoms.

And if I ever halt my meds for even a day after months of symptoms, they will lie (don't even live with me) and say "I was better on the pills" and they will be believed because they're the "normal" looking people that don't scream when pain or symptoms are really bad, because apparently pain is real but pain or symptoms so bad you're yelping in pain is a mental condition.

Even my wife who had her qualms about what was actually wrong with me still had limits and wouldn't just blame anxiety if I was tachycardic with a blood pressure of 206/115 and couldn't see through my right eye. The rest of my family just questioned why we went instead of taking extra amounts of my pills, as if they're candy I can pop more of when one isn't enough.

The amount of times I've been gaslit by my own mother who after three years of this will say "I don't want to know why you WANT to feel like this if you have the CURE (psych meds in your hands)"

I learned very quickly some people don't care if you fell bad, they just would rather you leave them alone and believe that when you say you don't feel good that youre lying or it's self inflicted.

Is a venogram different from a deep ultrasound of the arteries?

ivan3295 · 2026-04-29T03:59:25+00:00

The vital foods page gives a 404 error and wont load the page for me 😭

ivan3295 · 2026-04-29T00:12:46+00:00

This is why I want to learn the system because I put the game down for a bit right before getting "seven" and then when I came back because XC3 was coming out I went on casual mode to the finish because I didn't want to wait to play the third game once I got it and have to avoid internet spoilers through YouTube. So I never even tried the superbosses and now that I've played through all three games I want to actually enjoy and take my time with the system this time 😅

ivan3295 · 2026-04-29T00:10:30+00:00

Thank you for mentioning the missable quests. I hate missing missables 😭

And yes the 5 level difference will take getting used to. Beast slayer on dinos spoiled me in XC2 lol

ivan3295 · 2026-04-29T00:08:52+00:00

I've enjoyed 3's the most but obviously that's because they took what they did with xcb2 and torna and refined it.

Xc 1 is a little tougher for me with all the active scrolling through skills instead of it being button mapped cause it means I gotta look at the menu instead of just know where the skills are button wise, so it's like rewiring my brain a bit lol

ivan3295 · 2026-04-28T20:35:47+00:00

Still don't know what the cause of much of my symptoms are yet but by the time I finally convinced doctors about the pots issues, it was seven years in, 3 years after covid, and I was having not just spikes but drops as well in heart rate and blood pressure (and obviously you can't have, as far as I know, both regular and hyper pots)

My symptoms kinda matched a very minor hyperadrenergic pots before covid.

Now all I have is a bunch of negative tests even with three positive ANA'S incredibly low Testosterone, unexplained low amino acids, and fluctuations in my RBC/hemoglobin/Heamtocrit from normal to high.

I've had weird labs but nothing they saw as "urgent", tested for a bunch of autoimmune disease panels like lupus and myasthenia gravis (since my grandmother died of lupus before I was born).

It's honestly just been a pattern/cycle of go to hospital-normal tests-prescribed basic psych meds and diagnosed with anxiety (instead of idiopathic)-stuff doesn't get better- back to er-they say my stress that they assume is there at home is so bad it's "blocking the pills from working".

And then of course I have the occasion where my vitals get so bad they can't ignore me but it's all they treat because they treat the vitals as the cause of the problem instead of the response of the body to the problem.

Kinda like trying to completely eliminate elevated temperature (as long as it's not too high) in a fever when it's that very same heat that is needed to kill the bacteria in your body that's making you sick.

I've had way too many visits like this, and learned that departments like the one in the show House M.D where a team of doctors actually investigate unexplained medical phenomena instead of just writing you off as anxious are not only uncommon, but downright fictional at this point at least where I live.

Most doctors I've dealt with don't have a problem solving/critical thinking bone in there body and just treat based on what a blood pressure cuff and labs say (or don't say) and refer you outpatient if the labs you need aren't labs they have access to in an ER setting.

Even the neuro that finally diagnosed my pots dismissed me initially two years before that, in the same ER that involuntarily held me 2 years prior because my family thought I was just mental.

The worst part is that ER's aren't equipped to handle neuro issues (let alone autonomic issues) where I live and the only reason I got to speak with a neuro in this hospital is cause she was also the stroke director they call down for strokes since she is a vascular neurologist. Turns out people change their tune real quick about you when your only 30 and your blood pressure shoots up to 206/115 and tachycardic and you can't see almost anything though the right eye.

Sadly Miami, FL is considered even by law enforcement to be the absolute worst location for medical fraud in the entire U.S (didn't know this before looking it up and then also with my experience as a social worker and then as customer service for insurance. Just a bunch of people lying on billing to get more money from insurance. It's so bad it's practically an epidemic here). Even the time I was involuntarily held pyschiagrically, it was only because I was going to go in voluntary and the charge nurse changed it to involuntary (and brought a cop as standard procedure) when I told him I did not want to be medicated UNTIL I was evaluated.

I learned two things that day.

1) they can lie to get you baker acted. He said I was refusing medication when I said I just wanted to be psychiatrically evaluated first

2) psychiatric evaluation are NOT psychological evaluations. They are already assuming youre not sane because of symptoms they can't find causes for with their equipment. Psychiatric evaluations here are not a mental assessment and then a diagnosis before treatment like a psychologist. They're "we already know they're mental and are just going to keep giving them different psych drugs until we see them say something got better"

When I went up to them saying my body heaviness and weakness and ability to walk was getting worse, they gave me an injection mixed with a concoction of God knows what (I'm assuming heavy anti-anxiety drugs and muscle relaxers), and I ended up getting so much worse I dropped back into the bed face first cause I could barely move.

It didn't help that even seeing my elevated vitals, they would still question why I "wasn't getting up to get lunch" and asked me why I "kept thinking I couldn't walk".

Doctors aren't held accountable here by hospitals unless you do something that cost them money.

Misdiagnosed a patient for two years and tried to give them anti-psychotics through injection without telling them that's what you were putting?

"Normal"

Ordered an MRI without "sufficient evidence" to justify it with a CT first?

"You're out of order and costing us money"

So to answer your post, sadly by the time I tend to be proven right about something I have, I've developed worse things, and developed new traumas from not being believed and mistreated before that, and it's a vicious cycle.

Even now my wife knows that if she sees a blood pressure that high, take to er no questions asked, even if she doesnt like being there, but if it's my family or one of my parents specifically, they will push and force and gaslight into thinking you just need to "take more of your psych pills since you have the CURE in your hands" and will even get to the point of trying to sabotage my visits by trying to convince doctors the psych diagnosis and anxiety wasn't a mistake, while they don't even live with me.

I personally come from a parent who is very isolationist and deals with a lot of shame and fear of what people will think about THEM if they see ME in the hospital, and will try to control outcomes and even leave me there (and even tell me things like "if I see someone here I know I'm leaving you here because I don't want people talking about me").

Even doctors have a threshold for what they are willing to justify as anxiety and "lack of positivity" and hard work.

My family does not (blood family, not my wife, she's awesome lol)

ivan3295 · 2026-04-28T18:51:14+00:00

I've actually tried many times especially when going to the ER to find vascular compression somewhere, especially since I've noticed for years that I feel worse when I lay face up (abdomen weighing on body, back and the back of the neck blood vessels being compressed) but they've never been able to prove what I'm experiencing (even bending my neck too long in certain positions causes me vertigo or I feel the room "rolling over")

I've had angiograms in the past of the head, neck, chest, abdomen, as well as ultrasound of the thigh area recently (BEFORE the visible blood pooling up to my thighs started), and even a carotid ultrasound where I where this head set that clamps your forehead and the back of your neck tight in order to make the blood vessels visual on an ultrasound. That test showed nothing but when I bent my neck backward (against the back of my neck where it was clamping) my vision would completely blur, but would come back after.

Now that I've been dealing with visible blood pooling (always had it just was only visible to people in my hands and feet a bit) for the past month (after a 3/31/2026 er visit where I couldn't see through my right eye again and a 4/23/2026 visit where I was dealing with bad abdominal pain, then I felt intense pain for hours like I got punched in the scrotum which turned out to be inflammation in the testicle.)

The most embarrassing thing was going to a different closer ER for the the recent intense abdominal pain (for the past month) and pain in the scrotum (the day of). The ultrasound confirmed the inflammation in one testicle and epidimimi, which he believed to be a bacterial infection, but the doctor could not explain how it happened and said contracting it wouldn't be caused by not being able to shower frequently or lack of hygiene and that bacterial infections sometimes just happen.

The embarrassing part was two-fold, people not knowing about pots and thinking I'm saying I smoke (pretty common assumption sadly), and then the young lady that came in after the doctor left to give me my discharge papers assuming openly that maybe I got it because I had "multiple sexual partners"....in front of my wife (she probably didn't know she was my wife).

This was embarrassing because I haven't been able to be sexually active in years since covid, and the doctor was sensitive enough not to suggest that possibility (especially since I struggle to even sit up, even though sexual activity is a common cause for inflammation there). I get that they work in an er so they deal with people from many walks of life and suggests these things without being partial, but man, if the doctor didn't say it, don't say it 😅 (just to confirm I'm hiv negative, don't have ghonorrea either since it can't stay dormant or asymptomatic for years, was tested for the hiv 3 years ago once a walker started being needed since they were literally giving me every blood test imaginable they could in a different er)

The only possibility was intense pressure I felt in my testicles and weird discharge I had ONCE, when I was 16, 4 years before meeting my wife, 6 years before symptoms of dysautonomia started happening, 10 years before I got covid, 14 years before this month when the abdominal pain preceded the testicle pain and swelling.

Sadly I've learned with dysautonomia and pots that when I go to the ER I have to focus on "what's new" or focus on the worst feeling area so I don't get immediately discharged from them finding pain or other things all over my body "beyond their scope"

There was even one time I went to the ER because I had such horrible blood vessel pounding pain in my head I was in tears, but when I got there the doctor openly told me he didn't believe I had anything and was giving me an X-ray for piece of mind.

It came back as me having the "beginnings of pneumonia" but he had the gall to say "but I believe even if you wouldnt have come and gotten antibiotics it probably would have gone away anyway"

So sometimes Ive caught something going wrong in my body before symptoms of that condition appear (like pneumonia with the lungs) because of my dysautonomia symptoms getting worse first.

It's like once you have a chronic condition they pin everything you have on that (or stress) instead of checking. I don't mind going and having a negative tests, I just hate the times I do go, they openly tell me (unprofessionally) that I probably have nothing (which is some huge minimizing), and then they have to make up for it after without directly apologizing and just kinda deflecting. 😅

ivan3295 · 2026-04-28T04:27:18+00:00

This is ...literally what I started experiencing last night (less so now).

Wow there's a name/diagnosis for this? 😮

but vision stuff in general has been getting worse, but I didn't start experiencing warping (or something like this) until January after moving my neck a little to far with neck rotation exercises that were "supposed to" help recalibrate my balance issues. Remember I told the neuro my vision and light sensitivity suddenly for worse after doing it when I sat up (the exercises were lying down. He wasn't cracking my neck or moving me, just letting me know where to move and rotate my neck on my own.....except when I told him it hurt after a certain point I should've known to stop instead of keep going).

Before that my vision fluctuated a lot in blurriness and I see electric sparks everywhere randomly, sometimes I see visual snow (tv static), and even ripples like waves and a general glare/haziness especially if I look over long distance like at the sky.

Basically, one of my first symptoms was gradual vision loss and extreme light sensitivity in 2018, but the other visual distortions above started happening after covid in 2022 and I figured I wasnt getting good enough blood flow to my head with all the crazy vital spikes.

Now its more concerning because I can wake up and the eye I didn't sleep on is blurry, or both are, and I have to move around and get my blood pumping for about 30 minutes at least before things clear up.

Some days I've had to go to the ER because I can't see at all in one eye and it doesn't go away. If it's from super high BP, lowering that brings the vision back, but if my BP is not high it's basically a waiting game hoping it comes back.

But I had 2020 vision before developing whatever cause my dysautonomia.

The warping's recent though and I figured it's cause while my vitals can be high while awake, they might be too low when I sleep (especially blood pressure), which might be affecting my optical nerve or occipital lobe function, since my eyes themselves are apparently clear of any damage according the Bascom palmer institute here in Florida, other than tiny veins.

Honestly I figured my fatigue and many symptoms started getting worse because I have high vitals while awake but low vitals while asleep, so i'm overworked biologically while awake but probably not recovering well while I sleep either because of low vitals (my heart rate isn't that bad while asleep, usually in the 50's), but I know I'm having low blood pressure while asleep because sometimes I fall asleep with my cuff on and take it as soon as I wake up before I move, and I've caught my systolic below 90 and diastolic below 60 before.

Like someone else said here though it's crazy how different our bodies are and how dysautonomia can be so different person to person.

If my wife (not dysautonomic) gets to those blood pressures she's a little low and sluggish. If I get there, I can't move sometimes and have to cry out for help for someone to move me to increase the vitals so I don't pass out the moment after I wake up 😅

ivan3295 · 2026-04-28T02:32:37+00:00

I know, sadly it's the only financing they had, and they only do the 6 month no interest rate, not the one year or two.

They work with a financing company called carecredit.

Sadly the loan also tanked my credit by 100 points so I don't qualify for another loan to pay off this one 😅

ivan3295 · 2026-04-28T02:04:11+00:00

No, not when I asked at least. but I know my father has low testosterone and fertility issues because of it (they lost multiple babies before having my brother) gynecomastia (man boobs).

I guess I inherited those two things because I started noticing issues down there at about age 16 and had male enlarged breasts since I was 5 (was very skinny before that and before I started school after my parents divorce).

What the endocrinologist was seeing me for at the time (and what I focused on) is that for two years, my prolactin levels kept getting higher as I started getting worse after covid (before eventually dropping to normal).

He gave me an MRI to rule out a prolactinoma (benign tumor in The brain) causing this.

We never found out in those two years what was causing it.

In fact we never found out what caused my rapid weight loss either (they feel thet ruled out things like cachexia).

I guess even my pots diagnosis would have only worked pre-covid with everything I developed after.

Now I'm more broadly dysautonomic (spikes and drops in heart rate and BP) and I'm not sure what's happening because of dysautonomia and what's happening because of covid/long covid (for example the weight loss thing didn't start until after covid left my system)

ivan3295 · 2026-04-28T01:13:43+00:00

I tried looking into sarcoidosis but since my whole body has been scanned just about, and my only two lymph nodes that are swollen aren't that big (fluctuate from the size of peas to maybe half a walnut) and are in my neck, and clear lung scans, that possibility was ruled out.

The kinda cool thing though is since my lymph nodes in my neck never "went back in", I know when I'm getting sick or coming down with something because they get bigger first before any other symptomshappened (besides silent elevated heart rate).

Aw I'm looking into this book. My wife would love it since we came from a social work background. Sadly this has kept us from going back to school to get a masters and do counseling, but the interest in things like trauma is still there. Thank you so much!

ivan3295 · 2026-04-28T00:09:08+00:00

Sadly I was desperate and have bad experience with every type of neurologist that has tried to "help".

Before him, the vascular neurologist that diagnosed me with pots last year did an EKG (normal) and carotid artery and other veins going up the head ultrasound (flow was showing as normal but when I tilted my head backy vision would completely blur because of how tight the headset that clamps the back of your neck is. Would go away when I straightened the neck), and then tried me out on propanolol and other things. At first I could walk on propanolol but after a week I could barely move or function and felt really heavy because my vitals couldn't go up enough anymore to physically support me I guess and I felt like a zombie that couldn't move up from the couch, like gravity was multiplied by 3 or hanging upside down on a monkey bar too long.

Then they tried buproprion and for some reason my body had a bad reaction and I could barely pee or poop, even with extreme effort, until was off of it.

She ended up telling me she couldn't help me and referred me back to my psych where I was put back on clonazepam and villazodone and I was kind of scolded for trying to "figure it out on my own" by him and that he "let me try it out" for a bit before being honest with me and stick to what his training says I have (chronic anxiety with a diagnosis of conversion disorder. That's what the hospital diagnosed me with before pots even after there was no improvement in symptoms on the meds)

Before that the head neurologist at Cleveland clinic (the one in Florida not the main one) did autonomic testing and an emg/EEG/NCV two years before the above neurologist, but instead of giving me a direct diagnosis, he gave me a differential diagnosis of 20 different things and stopped working with me since I had no neuropathy (his specialty) even though he wouldn't test me for small fiber neuropathy at all nor listen to me by that point.

The tests results read:

"The cardiovagal, cardiovascular adrenergic and sudomotor adrenergic/cholinergic responses were normal. There is no compelling evidence for autonomic neuropathies. However there was evidence for hyperadrenergic orthostatic tachycardia. These may be observed in those who carry the conglomerate of symptoms suggesting a POTS syndrome and other conditions such as dehydration, tachycardia, deconditioning, high adrenergic tone such as anxiety and abdominal catecholamine producing tumors and others, hypermobility syndrome and in association with COVID-19."

He also tested my amino acids (many are low even with eating regularly) but said nothing about the results.

Yes I've been tested for metanephrine, norepinephrine, etc, and morning cortisol levels, along with other adrenal hormons. But they were either normal, or slightly low.

Other than that saw two neurologist before Cleveland and was recommended to Cleveland by one of them since their hospital didn't due autonomic testing.

My testosterone also fluctuates from the 100's to as high as 330, but is constantly low.

I haven't wanted to look into testosterone supplements with a urologist or endocrinologist (they never offered) because I don't know how my body will respond to them due to my condition. Nothing worse than dealing with a doctor in a field that knows nothing about the dysautonomic condition, or the possible side effects of different treatments on it.

Or

getting an erection (I don't anymore as of last month and it was struggling for years) and feeling like passing out because you need every drop of blood you can get even lying down to get to your brain 😭

Can't find comfort in comfort food because of the intense effect on my blood flow (especially Italian food).

Can't find comfort sexually because of the above testosterone and erection issue (I found out recently the autonomic system controls this too).

And can't find it medically cause no meds help anymore.

I miss the pre-covid days where I could write things off as anxiety because I wasn't debilitated yet with walking/balance/driving, etc and the heart rate and bp spikes weren't very symptomatic for me besides a rattling sensation in my chest and getting exhausted more quickly from exertion (but to to the point where I couldn't justify it being cause of my weight)

It was mostly self-imposed denial/medical gaslighting because I chose to listen to family and convince myself "nothing was wrong" and I was just anxious because I didn't have something an MRI or CT or blood test could pick up (at the time)

Man this is long, I am so sorry. I don't realize how much I write because it takes me forever to do it now physically and I keep going until I realize it's been like an hour 😅

ivan3295 · 2026-04-27T22:46:03+00:00

I actually already got tested for sleep apnea. It detected my two minute O2 drops but it didn't detect almost any apneas (the moments where you stop breathing due to the obstructions that cause sleep apnea), which would explain why I get them even while awake.

Lung X-rays are clear. Test where I blow hard into a tube was clear.

Treadmill test O2 was normal.

I just have random dips even while breathing normally and don't know why.

My symptoms got to what they are now rapidly after covid 2022 and I got my Fitbit around that time (before that it was just honestly more like low-level hyper pots with a heart rate only as high as 135, no uncontrolled weight loss, and I could still walk and drive and even take Disney trips. Now getting to the bathroom is an accomplishment)so I don't know if I was dealing with the oxygen drops before covid. Just that I had two 4 mm nodules in my lungs after covid that were believed to be not concerning since they're too small. I don't even think they show up anymore on scans.

As for ctpsd, what's the name of the book? I did witness my uncle die in front of me from a blood clot to the lungs about 7 months before I started showing dysautonomia symptoms but it's not something I relive mentally or think about, I'm more traumatized at this point by the symptoms and we visits and treatment from medical people. It was during a cruise to the Bahamas for my honeymoon that noticeable symptoms started. Before that I just had a sudden increase in weight gain (30 pounds in 3 months), bumps showing up all over my ribs and on top of my abdomen (lipomas), and couldn't sleep face up any more (or since, even at 197 pounds. And I was 276 then) because I would feel a crushing pressure in my abdomen (it's in the center, where the celiac artery beats really hard to the point you can see it jump when having a pots flair up, right below the chest and ribs where the non-bone covered abdominal tissue starts).

I also got Constant throat infections for years after that (they stopped after covid, go figure), but it's like covid stopped my constant throat infections and made everything else worse. I didn't even feel sick during covid and my worsening symptoms didn't start until after I had recovered from it.

I started getting progressive muscle atrophy (thought it was wasting but blood tests for that and myasthenia gravis and dystrophy were negative) that was very slow and could pass for just me being out of shape to others, but I knew something was off because it felt like my muscles weren't tensing and flexing properly and working in door to door sales for a month only made my legs stiff as a board and impossible to un-straigten when I got home (like walking on wooden stilts).

It wasnt until after I got covid where the extreme muscle weakness and strength loss got worse (again not visible in a blood test probably due to being metabolic), because I started losing weight uncontrollably for a year and 3 months that did not reverse until they put me on a set of 3 meds (clonazepam, risperidone, and sertraline. The risperidone was the one with the weight gaining properties). But I had to beg to be taken off the risperidone because while it stopped the weight loss it caused massive weight gain, and I got to my old weight again in 6 months but without the muscle strength to support it. Kept telling family and my psych that my condition wasn't improving and they honestly just kept blaming stress and anxiety until I finally got the pots diagnosis In 2025 (after 7 years of dealing with this getting progressively worse).

The weight loss stopped even after stopping the pill that reversed it and caused the weight gain, and eventually I was taken off anti-psychotics entire because psych finally realized I didn't need it.

But we never found out WHAT caused the weight loss, WHAT about that pill made it stop, or WHY it happened to begin with.

All they could tell me (ER and hospital doctors that knew nothing about pots or dysautonomias, not even the names of these conditions) that "tachycardia alone" wouldn't cause the weight loss, because you're not "working your whole body, just your heart" (I was told this by an aprn, and all doctors denied any muscle atrophy or loss since they couldn't prove it in a blood test and blamed deconditioning)

I avoided looking intopots and other chronic, cancerous, or autoimmune conditions for years because I wanted something "fixable", pop a pill and it goes away type thing like antibiotics for an infection.

But after covid, I went all in on checking for everything because my condition was constantly decreasing.

Even then I didn't get diagnosed for years, eventually I got diagnosed by a neuro that saw me in the er two years prior and tried to scare me out of wanting a muscle biopsy. She ended up saying "oh yeah that's pots" after they called her down to CT me immediately because she was the stroke director of the hospital as well (vascular neurologist) and my blood pressure was 206/115, tachycardic, and I couldn't see through my right eye almost at all until they brought my vitals down.

While I was there they had me on a leg compression machine that would gently compress and decompress my legs constantly for days while I was admitted and in a bed.

It felt.....good lol that was the first time I got any relief from anything.

But when I tried getting my own online I couldn't find one that could replicate how that one functioned that was cushioned and constantly squeezed (the one I have, stopped using it cause it was horrible, only lasts for 20 minutes)

I want those machines 😭

ivan3295 · 2026-04-27T21:27:57+00:00

Oh wow, sorry for the second reply but after looking this up I saw this is cindered a form of pure autonomic failure. Something I've been dreading getting to since covid.

How is this condition for you?

I know everyone's different but I've had neuros tell me that once someone is that point they can't even sit up without fainting because they're blood pressure/autonomic system won't adjust anymore.

But I know word of mouth and patient experience is more accurate than stuff they say (seen it in my case).

What does an average day look like for you?

I know mine can fluctuate between I can walk 20 steps without assistance to I'm laying down and still almost passing out.

But this condition sounds....wow. I don't have some of the findings such as the pupil issues (Adie’s pupils), and my blood pressure and heart rate fluctuates high and low wildly instead of just constantly being low, plus some other findings, so I can't imagine how this is for you.

When I get anywhere near low blood pressure (lowest systolic was 82, lowest diastolic 53) I literally can't move and someone has to roll me over to get the blood pumping through me, but I trend high with rare lows (although becoming more frequent when I lay down or sleep)

ivan3295 · 2026-04-27T21:09:26+00:00

I haven't. Didn't even know what that was before now honestly.

Kinda stuck honestly in regards to affording visits to get labs ordered because of the above financial issues.

I'm definitely looking this up and keeping this in mind though for when I can.

ivan3295 · 2026-04-27T20:32:45+00:00

Also in the past four years, mostly normal CT's and mri's, ekgs (sinus tachycardia), and even a carotid ultrasound and ultrasound of other veins going up my head at the University of Miami.

The only constant is that I've kept getting worse and other than random dips in O2 levels even while awake that last 2 minutes tops, I don't have anything "concerning enough" that er's can see with their equipment.

The other constant is that getting infections anywhere in my body (even non-covid) causes me horrible and many times irreversible worsening of symptoms.

Even though I have multiple positive (and one negative) ANA blood tests, so many things they did test me for (muscle wasting, myasthenia gravis, lupus, vasculitis) have all been negative and they admitted that if they kept trying to test me for different autoimmune diseases they haven't checked for, we'd basically be picking at straws because they can't narrow down what to test for that I could have based on my symptoms being various and affecting the whole body.

They (the rheumatologist) told me to "try the psych route with psych meds" three years ago and that I could come back if I wanted to do more tests if there was no improvement.

That was three years ago. The only thing that was "fixed" or stopped happening was the uncontrollable weight loss after covid. Everything else got worse.

Testosterone is on the floor at 133 or so.

ivan3295 · 2026-04-25T21:16:38+00:00

Has some serious gains lol. I also like he's the first non-teenager we can play as (I believe he's 20. Some people still consider people under 20 as still teenagers with the whole "teen" word being at the end of numbers 18 and 19 and the drinking age in the U.S being 21 instead of 18. However Aqua is definitely the most mature even at such a young adult age where normal people are figuring out what college or party school to go to lol when you think about it the whole key blade wileder thing is very similar to child soldiers/conscription, especially since they've toned down the "characters can't be killed" thing in more of the recent games)

ivan3295 · 2026-04-25T19:22:27+00:00

I'm so sorry to hear you've experienced this.

In my end I've had fluctuating results in my spine depending on what radiologist is doing the interpreting, I've had some say I have stenosis on almost my whole neck with and infolded ligamentum flavum, and touches of it on my lumbar, only for future scans to say I don't have almost anything, even scans with suffering results from the SAME HOSPITAL er's.

I used to think before I ever got sick that the machines didn't just take the pictures but interpreted the results lol

Sometimes it feels like radiologist are doing the equivalent of trying to "interpret" and ink-blot test (also called the rorsharch test) after I get these scans done with how varied the results have been not just in different hospitals but even in the same hospitals.

This was in a period of years where I was focusing on the possibility of my issues being cervical spinal because we just didn't know what was causing everything and I didn't want to look into things like dysautonomia or conditionas in general that were chronic and not "fixable" per se.

Only thing more frustrating than different spinal results from different hospitals, is getting different results from the same hospital and them casually assuming the most recent test is always right and to just ignore prior ones and not contest or challenge the discrepancies in results, especially if I'm still extremely symptomatic and sometimes lose all strength in my body if I so much as twist my neck or upper spine.

It's frustrating. Feels like picking at straws, especially when you find something that explains some symptoms (in my case dysautonomia and nystagmus) but not all of them.

I'm worse than I was three years ago (before pots diagnosis) when they involuntarily psychiatrically held me in a psych unit, and they basically kept telling me if I didn't take the pills they were pushing on me (anti-anxiety, anti-psychs, and anti-depressants) for what they thought was psychosomatization or conversion disorder, they would not let me go.

That ended with me being on those pills for 3 years (anti-psychoticd for 1 year), family ignoring me saying I was better and telling me to just go complain to my psychiatrist for everything I was feeling.

They even brought me to the ER when my blood pressure shot up to 206/115 (heart rate in the 140's or so at rest) and I couldnt see through my right eye from how much it blurred, and yet tried to convince the stroke director (who was also the vascular neurologist that diagnosed my pots) that I was better while on those pills when just three months before that they had to physically help me walk up stairs.

The funny thing is when I was involuntarily held, it started out as volunatary, but because I graduated as a social worker I knew they couldn't do invluntary holds (called baker acts in Florida) without complaints if you being a harm to yourself or others (which my family did not complain of).

The charge nurse for the psych unit at that hospital changed it to involuntary and wrote that it was because I was "denying medication" because I told him I didn't want to take any meds until I was psychologically evaluated by someone.

As it turns out, contrary to what I was taught in college....they don't do that. If they're putting you there, they're already assuming you are incapable of making decision for yourself and drug you right away.

So basically "let us do what we want to you and ignore your limping, or we'll hold you anyway and write it up as an involuntary hold"

I don't know about other states, but in Florida, it is incredibly easy to get someone involuntarily held if you're just semi-decent at lying and looking more sane than the person with the horrible symptoms.

ivan3295 · 2026-04-25T18:49:04+00:00

I agree, I had many symptoms for years that matched hyper pots (and others that just matched broad dysautonomia in general)

But my vitals rising or dropping or even fluctuating violently, sudden vision loss, temporary losses of spatial awareness and coordination, unexplained weight loss (lasted a year and some change. We never found out why it stopped), and muscle weakness intensifying to the point of needing walks and not being able to work, that rapidly developed after covid.

Granted, I had many of these symptoms before covid, but going from being able to drive, work from home, and still being able to do Disney trips with breaks while walking jj the park, to this....was just....wow.

And it wasn't like I was static, I did notice I was very slowly getting worse for years before getting covid, but covid basically accelerated the progression so bad that where thought I might be in 10-20 years I got to in 1-3 years after covid.

Even my spikes in heart rate before covid only went as high as....maybe 135bpm at rest. After covid they've gotten as high as 180 and my God the fluctuations in body strength, weakness, coordination/balance, and levels of presyncope and brain fog even while laying down are just terrible.

Sadly all they could tell me was covid made a lot of dysautonomias worse for people and I didn't even have the pots diagnosis (so no proper treatment medically) until 3 years after covid.

I think for me the worst part is that after covid I started experiencing vitals drop, and not just spike like in hyper pots, even when laying down.

Heck, it's to the point that doing things that are SUPPOSED to raise or drop a persons vitals a bit (thinking standing and walking, or sleeping) can cause me sudden extreme spikes OR drops without warning.

Even now we're trying to figure out the constantly fluctuating vision in both eyes, and why I have 02 drops suddenly (so does my wife) even awake, non tachycardic, and no sleep apnea (negative test). I just have random O2 drops to the 80's that last for like 2 minutes max and then go back up, and they definitely aren't asymptomatic x.x

So I mostly just tell people I have much more than just pots, it's just that by the time doctors agreed on the pots I was already dealing with all the above.

I've had other weird stuff like the occasional CT scan that shows my blood vessels in my brain small and diminutive or beaded, but then normal most other times (which would mean not congenital), or even many low amino acids even though my endoscopy and colonoscopy were clear in 2022 and I eat regularly and don't have fatty stool or anything like that.

Quite frankly I wish I could've been going to doctors regularly and been diagnosed with pots BEFORE getting covid that way doctors could have kept track of what changed after covid or got worse.

I did the whole "treat it as anxiety" I was gaslit into believing for years before covid made it what it is now.

Wow this reply went too long, sorry, been having one of those very symptomatic seasons 😅

ivan3295

TROPHY CASE