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Can I get some love from some fellow POTSies? 🙂

Do y’all have any idea on how to reduce fainting? I drink water and eat salt but I seem to be more progressive with my fainting. Any ideas? #dropitlikeitsPOTS #potsielife


Hi my #POTS peeps!! Anyone have a recommendation for a tri-salt supplement in pill form??

My doctor recommended tri-salts and I ordered the powdered form lol. Which is basically just salt. I went to Amazon to order pill-form and saw all sorts of brands and electrolyte supplements - thought I’d ask if anyone had one they’d recommend!!
#PosturalOrthostaticTachycardiaSyndrome #EDS #EhlersDanlosSyndrome #LivingWithPOTS #potsielife


Feeling Really Really Defeated by #PosturalOrthostaticTachycardiaSyndrome

Trying to figure out a treatment plan for #PosturalOrthostaticTachycardiaSyndrome is kicking my butt. I’ve tried Fludrocortisone but I had a weird and bad reaction to it. I can’t take beta blockers due to my low blood pressure and Raynaud’s. Now my cardiologist is suggestion only physical therapy which I’m trying to due but I don’t have a lot of energy. I spend most of my time in bed. My primary thinks saline infusions may be the way to go but we need the cardiologists approval first and if he says yes, then I have to go into an infusion clinic regularly. But I can’t because of the pandemic. I don’t think my insurance covers home health care. I don’t know what else to do. I feel so defeated and sad. I’ve distanced myself from pretty much everyone. I don’t know what to do anymore. #LivingWithPOTS #tired #depressed #EDSAwareness #potsielife

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My story

When I was 13, my appendix ruptured and I had it taken out, that was the point when I started passing out and having 'seizures'. Multiple doctors told me it was in my head and I was doing it for attention so eventually we paid privately for a doctor in London who officially diagnosed me with PoTS. I tried different medications and treatment and none of it made any difference. My passing out got worse to the point when It would happen 5 or 6 times a day and I was absolutely exhausted. As a child I was always tearing the tendons in my ankles and had always been very flexible. 4 years later i was also diagnosed with EDS3. I don't pass out quite as much now but I have a whole host of other symptoms. My bowels have started to become a problem which i was told might happen. Fatigue is one that is a daily battle and I feel very guilty about. Brain fog, back ache, I click everywhere, I'm incredibly flexible and I have lots of heart burn to make a few. was told it was something that I could possibly grow out of but the age I am now, the doctors are pretty sure if things were going to get better then they already would have by now. I still struggle with feelings that I am causing this to happen deliberately but I have a very good support network of people who help me with this. Finding this app has been fantastic and seeing all of your stories has really helped me. Thank you all. If you have any advide or tips, please please tell me! #EDSAwareness #EhlersDanlosSyndrome #hypermobileehlers-DanlosSyndrome(hEDS) #LivingWithPOTS #Potsie #potsielife #potssyndrome #hypermobileehlers-DanlosSyndrome(hEDS) #postivivepotsie
#Pain #iHaveANaughtyBowel


Wierd PoTs episode

Just had something new happen. It was like a typical episode with the tingles and such but then all of a suden it was like i blacked out for a second and when i came back was real confused about what i was doing and where i was but quickly came back to my senses within a min or two. Anyone ever have this? #LivingWithPOTS #POTSLife #potsielife

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New to the group #LivingWithPOTS #spoons

I've been a Potsie for about 11yrs, diagnosed for 5yrs. I was symptom/med free for about 4yrs. Symptoms kicked in about 8 months ago. Gotta love the never knowing when it's going to hit. I'm a very positive person most days. Lately not so much. Just when I thought I was on the upswing, WHAM! Thankfully I have a new doctor who is supportive and getting me referrals to neuro, gastro and nutritionist. I'm ready to feel normal. I feel like I'm a burden on family and friends. They are an amazing support system. Don't know how my hubby does what he does. He's by my side through it all. It would be awesome to hear from others like me. With all the support I have I still sometimes feel I'm alone. They see what I'm going through but thankfully, don't know how awful it really is to live it. I'm here for anyone who wants to talk/rant/cry. We have to band together!

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Broken Window

I look at life through a broken window,

Once so clear,

Once so smooth.


I never loved my unbroken window.

Though it was there with me always,

It remained unloved and unseen.


I complained if the view

Was not to my liking.

Too rarely to appreciate

The beautiful view.


Too often I barely

Looked through my window.

It would always be there,

Always be clear.


Later, I could enjoy

The sun from my window.

Later, I could enjoy

The view I could see.


But later does not always

Look like expected.

My window did not

Stay unbroken for me.


Now I look at the world

Through this broken window.

It’s hard to see

What road lies ahead.


The beauty is there,

But harder to reach.

My window won’t open

To let in the air.


I’m trapped behind

This broken window.

I can’t seem to fix it;

It’s too shattered and cracked.


I can’t unbreak my broken window.

The damage is done.

To try to restore what once was

Only draws blood.


Railing against my broken window

Breaks more and more

My heart and my soul.


And so I must accept this broken window.

Let go of past clarity

And accept this fragmented view.


For while my unbroken window

Was clear and bright

And showed me all beauty

In clearness divine…


My shattered, broken, distorted window

Has its own unlooked-for beauty

And throws into my darkness

Small rainbows of light.

#Poetry #poetrytherapy #LivingWithPOTS #potsielife #MastCellActivationDisorder


Newly Diagnosed #LivingWithPOTS Advice??

Today, I was officially diagnosed with POTS as well as some ventricular issues. I’m overwhelmed by the fact that I have a confirmed diagnosis. My doctors are meeting and will get back to me later this week about treatment plans. Any advice about POTS and managing it? As well as possible treatment plans? #ChronicIllness #EDSAwareness #potsielife #Advice


Need suggestions

I am kinda freaking out right now. Last Friday my IOP ended and last Monday my other counselor explained they will no longer be able to see me.

I have an eating disorder, mental health issues, medical issues amd am trans. I have issues with places because of my identity and medical issues. I may have the ability to go into a residential treatment center but also may have to leave my service dog at home.

My birthday is next month and if I go in would spend it in a facility. My family is scheduled to visit next month and they are huge triggers. My family expects me to be there for them but I need more support than they can give.

Do I go (insurance pending) and take care of myself or stay out?

#ResidentialCare #BorderlinePersonalityDisorder #Bipolar1Disorder #PTSD #potsielife #EatingDisorders


Favourite self care products #EhlersDanlosSyndrome #potsielife #IntestinalFailure

I'm absolutely terrible at self care and I really need to do it more. Im a single mum to 2 quite demanding children. I have EDS, POTS, MCAS, intestinal failure. Having been in lockdown for 17 weeks with no help im beyond exhausted. My parents have been over to decorate my room so I have a calming space. So what are your favorite self care products?