Orthostatic Hypotension

Hey, whoever reads this. I’m new to the app and trying to find comfort in community. I apologize beforehand for the long winded mess but I’ve been really struggling with my sense of self. Over the past 5 years I’ve gone from being a “healthy” individual, working a full time job, a university student and regularly going to the gym and working on myself. I was a vegetarian for almost 4 years. Now mind you, I was not a healthy child, I was sick very often and had a history of stomach issues but to my knowledge at the time this was completely normal and not a worry to my parents (they didn’t believe in doctors so one had never been seen for these issues).
In 201 9 I started to experienced some concerns.
It started with small allergic reactions to food I had previously had no issues with (spinach, pineapple, carrots..etc). Then full blown anaphylaxis for seemingly no reason. I went from a full and reasonable diet to nothing but grilled cheeses to avoid having a reaction. After my third or fourth trip to the hospital, the ER doctor mentioned something I had never heard of before: MCAs. At the time I couldn’t afford further testing or treatment so I continued my very limited diet and kept working thinking “well that’s a little set back but I’ll be fine”
During this time I wasn’t going to the gym as much as I was previously (or at all) focusing instead on classes and working. I had always had some issues with “bone” and muscle pain. Growing up, I was told it was growing pains and completely normal. I go back to the gym, 5 minutes on the treadmill and my back seized. I thought “wow, I took a month off and this is the price, I need to build up my strength again”, except I couldn’t. I was in so much pain, not just my back but my arms, my legs, my hips, everywhere and anytime I ride to workout again, no matter the amount, it would just make it all worse.
During this time I was in a very high stressed state, I was homeless trying to find a place to live, struggling with daily allergic reactions, I was failing my classes due to the pain keeping me in bed day to day. I was seemingly “sick” for no reason other than the stress. My body felt heavy, sluggish and impossible to control properly. My diagnosis for Ehlers-Danlos wouldn’t come until a year or two later.
Despite the pain, I had no choice but to work as much as possible. I didn’t have health insurance and no place to call home besides an old pickup truck so I was working three jobs, only sleeping 4 hours a night, continuing my diet of cheese and bread. I was still having daily allergic reactions and at the ER one night, the doctor was doing an evaluation of my throat. To note, I can easily dislocate my trachyia and my neck has lot of mobility. He’s the one who mentioned EDS to me. I held onto that until I could afford to make a proper appointment, at which I was diagnosed with a physical evaluation. This is 2021. I’m still thinking “well, its not a big deal. I can deal with the pain, now I have an answer, I can go figure it out and return to normal”. WRONG.
I have always had issues with my digestion and stomach. As I mentioned when I was younger, I had very chronic diarrhea and would often be kept home from school due to illness. In 2022-2024, I began to develope severe pain after eating, what was once “normal pain” was now sharp and couldn’t be ignored. At an ER, I was diagnosed with gallstones and told that was the cause (surgery was not offered at this time). I was roughly 200-215 pounds and told to change my diet, loose weight and stop eating greasy foods. Only the other foods where causing a myriad a reactions, so I kept eating as I was before and just accepted the pain as normal.
In November 2024, I started to get really sick (sicker than I had currently felt). I began to throw up consistently, almost daily, sometimes multiple times a day. I went from 240 odd pounds to 145 in less than 8 months (June 2025) . I was told everything was fine with me, one doctor even noted in my chart that I appeared to be a “well fed individual” after I told him I hadn’t been able to keep down food for over a week!
It wasn’t until I went to the ER after going jaundice that they finally did something: remove my gall bladder. Only that wasn’t the only issue they found at the time. Kidney Failure. And they didn’t even tell me, I found out later, looking through my online test results and diagnosis sheet from the hospital. Nowhere on paper did they mention this, nor the fact that my liver enzymes are incredibly high. (I understand that their job is to treat emergencies and that a PCP should always be followed up with, but you’d think just once in my 4 day stay that they would have mentioned it.)
Immediately following my surgery and release from the hospital, I was readmitted after fainting later the same day. My resting heart rate after arriving at the ER was 169. After testing and a little more time spent watching hospital tv I was diagnosed with Postural Orthostatic Hypotension. After my stay and during my recovery, this definitely worsened, at one point lifting my head up would result in a BP crash. (I have had issues all my life with presyncope, blurry vision and numbness upon standing for years, I suspected POTS but hadn’t gotten into with a cardiologist at the time). This is my most recent diagnosis, with a few on the backburner awaiting further testing.
My biggest issue currently (aside from severe light headedness and fainting occasionally at work) is my digestion. I have suspected Gastroparesis (awaiting testing) and what was an already limited diet has become nothing but liquids, meal replacement shakes and applesauce. I still experience pain after eating and as it moves through my digestive system, and an issue with actually engaging the muscles “back there”. What used to be a passion for food has turned into bitter resentment, I’ve come to hate the ritual, having to force myself to swallow so that I might receive the nutrional content of what I’m consuming, or throw it up trying.
I have an endoscopy and a colonoscopy scheduled in two days, hopefully that will bring more answers.
I apologize again for the long story. I haven’t actually had a chance to write about the journey and, even if it may not appear so, there is a lot still missing. I have issues in almost every area of my body. I just want to feel “normal” again. I understand that what I had and where I was may not be obtainable, but id like to feel content at least with where I am in life. I’m 24 years old, I walk with a cane and outwardly I look healthy which tends to lead very uncomfortable situations with people believing in either faking or not sick enough to depend on a mobility aid/be receiving medical care (and its disgusting, why would you go up to anyone and tell them you don’t believe them or they aren’t sick enough. That its for attention. I hear this a lot in the gastro-waiting room).
And anyway, thank you if you did read this far. :)

#Gastroparesis #GastroesophagealRefluxDisease #PosturalHypotension #EhlersDanlosSyndrome #MastCellActivationDisorder #ChronicIllness #AutonomicDysfunction

Hello, my name is Angel. I’m a young adult woman who has been diagnosed with several conditions but currently I have noticed, and professionals, that my Blood Pressure levels are too low more often than they should be. There is a trend to this I have unintentionally noticed, every time I get up after sitting or laying down my BP dips very low and I will get very lightheaded. I’ve had this experience going back to childhood but never knew about the decrease in BP. I was told about a condition called Orthostatic Hypotension but I’ve never looked into it much myself. I don’t think it’s that serious for me, but some tell me to take it more seriously than I do as when I say I just ignore the lightheadedness, they get concerned. Is there anything Is should be doing differently? I’m not sure what to do.
#MightyTogether #Undiagnosed #OrthostaticHypotension

A memoir from a girl who lost her life to covid

I still vividly remember the chaos that erupted when COVID first broke out. It felt as though the world suddenly stopped in its tracks. Schools were shut down for what seemed like an eternity, and months turned into an endless stretch of online classes that became the new norm. What had once been simple routines meeting friends, going to the store, enjoying family gatherings were replaced with masks, social distancing, and an overwhelming sense of fear. It became impossible to walk into a store, a building, or even a park without seeing the world covered in masks. These small pieces of fabric became a symbol of a new reality we were all forced to adapt to.

Nearly five years after the first cases of an unusual pneumonia appeared in Wuhan in December 2019, nearly 7 million people have lost their lives due to covid, and some 65 million more continue to struggle with the infection’s mystery aftermath, a poorly understood syndrome known as long covid. Covid not only took the world by storm, but also wreaked havoc on the lives of many to this day. Though I wish it was, it’s not as simple as contracting a disease, and being over it within a week or two. It's catching the disease, and never getting better. It's catching the disease, and having a long list of symptoms you must now juggle on the daily. It's a disease you not only catch, but a disease you can never get rid of. It has been observed throughout the past 3 years that covid has had a profound effect on the autonomic nervous system. Interestingly enough, these lingering symptoms are often different from the traditional symptoms of covid itself. This includes affecting blood pressure fluctuating out of control, orthostatic hypotension, palpitations, brain fog, fatigue, impotence, bladder dysfunction, alterations in bowel function, and gastrointestinal issues. The wide range of symptoms listed really highlight the multisystem nature of long covid and its ability to disrupt various body functions. It is a sad reality our nation is having to face, and a reality many young people are facing. It is not only older adults, but we are seeing more and more cases in teenages and young adults. These young adults' lives are often significantly altered forever, and they may never reach their full potential because of the long term effects this disease causes.

I have a two-month old and I have been pushing her around in a portable bassinet when we need to go room to room to make lunch or whatever. the problem is she's about to outgrow her bassinet and I won't be able to push her room to room anymore. I am currently having issues falling and getting dizzy I do wear her when I use my rollator or I'm not too dizzy but that can be a lot and super hard on my back or I'm too dizzy to safely do that so it a not always an option. Anyone have suggestions for adaptive products to help carry/ hold baby /transport room to room??
#EDS #EhlersDanlosSyndrome #OrthostaticHypotension #AutonomicDysfunction #PosturalHypotension #ChronicPain #Parentingwithdisability #assiativetechnology #MobilityAids

Hi, my name is LextheMoss. I'm here because

#MightyTogether #Anxiety #Depression #AutismSpectrumDisorder #Fibromyalgia #Migraine #ADHD #PTSD #EatingDisorder #FunctionalNeurologicalDisorder #PosturalOrthostaticTachycardiaSyndrome #OrthostaticHypotension #EhlersDanlosSyndrome #hypermobile

I am 66 this year & have had (obvious but undiagnosed) POTS since my earliest years. It has gone through 3 major stages.

As a young child it mainly showed only as an inability to run & keep up with the neighborhood kids. We'd run until everyone was winded, but in a minute everyone else would be gone. I'd be left by myself as they would run off as I could not catch up.

It was probably during this phase or nearly the next one when the gastroparesis began to be noticeable. I often complained about my stomach, was seldom hungry. From my parents point of view I was simply seen as a fussy eater. I didn't really have the vocabulary to explain properly, but do recall telling my mother that my "stomach has gone on strike".

The next phase saw the symptoms multiply as I entered my early teen years. Blacking out as I got up from sitting became the most prevalent symptom but was joined by such things as difficulty climbing stairs, lifting heavy objects or standing for extended periods. Running continued to be a problem. I never finished a 600 yd. dash in school in my life...I always came limping in at the end with the heavier and asthmatic kids.

During this period I was taken to numerous doctors. Opinions ranged from "we don't have a clue" to "it's all in your head". There was, however, one doctor's assistant who did an impromptu test for POH (Postural Orthostatic Hypotension) which proved inconclusive & was never pursued.

Oddly, I took up hiking, simply because I enjoyed the trips. Physically, they made me feel horrid, like one long stair climb. I moved very slowly & took long rests. Definitely never did group hikes! But I just liked to be outdoors so much. My heart always acted very badly the day after a hike.

Now I am in a 3rd, highly disabling stage. I doubt it is caused by the POTS itself but probably an interaction between the ailment & another hidden illness (I avoid doctors these days...very long story). I have been gradually getting worse for about 8 years. I used to do nearly ALL the work in the household but now I do practically none. I do whatever small chores I can to be helpful to my wife as she cooks (used to be my job). I remember when I could only pick up a half-gallon jug...then a quart, then finally I cannot get a light plastic cup of drink for myself. My wife must pour it & put it on my stomach. Then I need to use extraordinary means to get it to my lips without actually picking it up.

Lastly I will just say that I am extraordinarily intuitive. I didn't know what POTS was until last August...I read an article (possibly on this site) and said "Hey! That's ME!!". But a year or so before that I began to notice that most of my issues (anxiety, panic attacks, migraine-like headaches, my heart not being able to catch-up, etc...) all seemed to be originating from the same area of my brain. Which I now can label as the area which contains the functions known as the autonomic nervous system.

Hi! I’m Ashley and am new here! I suffer from severe mental health and physical health issues. I am excited to have joined this platform and officially be an “Mighty” lol. I’m pretty unfamiliar with this app/website but I am super hyped to learn the different things to do on here! Because I’m just getting started, does anyone have any tips, some cool things you can do on The Mighty and if you’re a fellow spoonie/dealing with similar issues I do too? Maybe I can make some friends that truly get these struggles…because we all know that nobody gets it like the ones that live it…aka US. I look forward to meeting any future friends!! Again please reply with any helpful information or to let me know of others on here dealing with the same things please!♡

#MightyTogether #Anxiety #Depression #BipolarDisorder #BorderlinePersonalityDisorder #ADHD #OCD #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #MastCellActivationDisorder #Gastroparesis #Dysautonomia #OrthostaticHypotension #ChronicPain #ChronicIllness #ChronicOrthostaticIntolerance #ChronicFatigueSyndrome #Migraine #Insomnia #Psychosis #PanicAttack #PanicDisorder

I woke up more or less ok, i ate breakfast, then drank some 100 plus ( electrolytes) and bam I'm nauseous. Just eat zofran hopefully I'll feel better cause to have school and today is a long day. # orthostatic hypotension

So, after insisting that I did not have joint laxity/instability the first time my physical therapist (who specializes in chronic pain and always screen's for hEDS)- I finally realized that I do meet most of the diagnostic criteria. Some of the issue was me being taught to ignore the constant pain as a child and minimizing my symptoms. My PT and I reviewed the diagnostic criteria that she could check and I'm within 1 point of a diagnosis. She said that means we will definitely address hypermobility in our sessions. Next step is talking to my primary doctor about referral to a geneticist.
Even without the genetic conformation or an official diagnosis, EDS explains so much about my experience of pain, medical complications, mental health, and even dental issues. I know it wasn't all in my head before- but somehow that's so much more real to me now. It's not a defect in my character (which it never was anyway but sermed like because the tests always came back "normal"), it's a physical problem that makes the everyday so much more challenging.
Just so relieved to potentially have so many answers to questions I was afraid to ask. My symptoms haven't changed- but knowing more about why seems to make them a bit easier to manage.
Thanks for reading my ramblings. Looking forward to more information and a deeper understanding of what this condition means for me and how I choose to live my life going forward.
#HypermobilitySyndrome #PTSD #Fibromyalgia #ChronicFatigueSyndrome #PolycysticOvarySyndrome #OrthostaticHypotension #Migraine #longcovid #Dysautonomia