Orthostatic Hypotension

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A History for Comparison

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.

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Today is International SPS Awareness Day. I dedicate this article I wrote for l’orient le jour, a french publication, to all the people who have inspired me along this journey.#StiffPersonSyndrome #RareDisease

I suffer from a very rare condition that affects one or two people per million called Stiff Person Syndrome.

Almost four weeks ago, I came out of the Intensive Care Unit ALIVE - that word has never had such an impact in my life.

On the eve before the 12th of February, feeling weak I told my husband not to worry if I took time to call him post treatment. My mum asked me if I needed her to drop me, but I asked her to pick me up instead because I told her I did not feel ok.

It’s like I knew…

Post treatment, my blood pressure went so low that I passed out and after various attempts to wake me up I was taken to the ER and a few hours later to the ICU. I was soon diagnosed with Septic Shock due to four different bacteria in my blood. In twenty-four hours my condition became critical, and my dad asked my husband to travel immediately back to Beirut from Africa.

From these eighteen days, my memories are the ones that my subconscious created as I was delirious, in and out of consciousness.

I dreamt of life, and how much I loved it, of music and dancing. I heard my parents and husband’s voices and gentle words of love without being able to respond.

Their love and my strength woke me up and I was alive again and able to communicate.

I love life, my body and its strength is undeniable despite all of my sicknesses.

I am thirty-seven years old and neither Stiff Person Syndrome nor its treatments will defeat me.

Whatever defines you hold on to it, do the things you love, live life because it is truly beautiful, live every day and appreciate it.

Life, you brought me back I will not disappoint you.

To all my loved ones, this is for you!#delirium #Coma #BackPain #MightyTogether #StiffPersonSyndrome #JuvenileDiabetesType1 #OrthostaticHypotension #Gastroparesis #Dysautonomia #Arthritis @angesdavis

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I'm new here!

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

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Feeling bad today

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


Another diagnosis?

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

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Medical needs an overhaul

I was recently diagnosed with orthostatic hypotension with labile blood pressure. The cardiologist told me not to stand too long or sit too long. Wear compression socks and increase hydration. Can’t increase salt intake.. can’t take any medication. Cardiologist said I should see a neurologist because he can’t figure out why I have this.. I am 58 years old.. this condition is found in either young or older people. Three weeks later the neurologist office gets in touch and can’t get me in until October! Wow it’s hard to get answers! I had a tilt table test October 2022. Plus I broke my wrist and had surgery.. my OT thinks I have CRPS.
What other tests should I be having? How can I advocate for myself? Do I just sit around and wait?
I’m really frustrated with the medical system..
I think I may have EDS.. but I don’t know..
I know this is a long post so thank you for reading!
Any advice would be welcomed 💚