vasovagal syncope

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Classroom Accommodations for Dysautonomia

As we settle into the spring semester, here are our recommendations for classroom accommodations for dysautonomia! What accommodations have helped you?

Classroom Accommodations for Dysautonomia: ⁠

Priority seating ⁠

PDF textbooks with screen reader software⁠

Access to PowerPoint presentations ⁠

Recordings of lectures ⁠

Note taker⁠

Access to seating during labs⁠

Additional breaks/use of restroom⁠

Eat/drink in class⁠

Extended time on tests⁠

Arriving late to class/leaving early⁠

Health-related class absences ⁠

Extensions on assignments⁠

#Dysautonomia #POTS #VasovagalSyncope #College #Accommodations

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Applying for disability

Calling all young people. Have any of you applied for #Disability . I don’t want to live off the government but it has gotten to the point where I need money and cannot find a job that I can actually do or that is accommodating. I am only 21 and I am overwhelmed with the whole process and honestly confused. #help #VasovagalSyncope #Dysautonomia #RheumatoidArthritis #Fibromyaliga


Feeling like 💩

I’m at a conference with my friends and it’s halfway through and I literally can’t go anymore. I’m completely out of spoons and all I want to do is cry. I hate being like this it drives me crazy. #VasovagalSyncope #RheumatoidArthritis #Spoonie



Y'all, help a sister out. Anybody know the best mattress for someone with hEDS? I wake up 3-5 times per night not because I NOTICE discomfort or pain (it might've been there in my sleep, but how do I know?) but seemingly for no reason. Ironically, I'm currently staying with my Great Aunt for spring break and I've never slept better than on her COUCH. Not a pull out matress. Just a regular couch. For the longest time, even my doctors assumed I have insomnia. Maybe. I'm not even sure anymore. Help me out here, people. I'm desperate. #hypermobileehlers-DanlosSyndrome(hEDS) #HEDS #EhlersDanlosSyndrome #EhlersDanlosSociety #Ehlers -danlos #Dysautonomia #AutonomicDysfunction #VasovagalSyncope #Epilepsy #Gastroparesis #Insomnia #SleepWakeDisorders


I have too many titles to pick one.

2020..... It’s been a year.

Still on the road to recovery from my June 13th 2019 open surgery for the condition MALS. (Median Arcuate Ligament Syndrome)

Recovering from my December 11th 2020 AT (Auto Transplant) of my left kidney from Nutcracker Syndrome.

In the past decade I have undergone 5 surgeries, not including times I was under anesthesia for tests and procedures, LASIK twice, wisdom teeth removal.....

I no longer have a gallbladder, or an appendix, my sinuses were ballooned, a ligament compressing my diaphragm was removed, and my kidney is on the other side of my body now.

I still have multiple chronic health conditions, on a genetic level, and fight against them daily.

But my goal isn’t to complain that I have a mountain to climb.

It’s to show others it can be climbed.

“If you’re going through hell, keep going.” - Winston Churchill

And it only seems fitting that on New Year’s Day I find out I’m Covid positive.

What a way to wrap up a decade, and ring in the new year.

#nutcrackersyndrome #MALS #malswarriors #malsawareness #MedianArcuateLigamentSyndrome #PosturalOrthostaticTachycardiaSyndrome #InappropriateSinusTachycardia #VasovagalSyncope #Dysautonomia #EhlersDanlosSyndrome #rosecea #IrritableBowelSyndromeIBS #Gastroparesis #PolycysticOvarySyndrome #AutoTransplant #COVID19


How to have a positive attitude with chronic illnesses

I know that its so hard to have a cheerful attitude when you're chronically ill, but I thought I'd share my top 4 things to remember to help keep your spirits high even with a malfunctioning body. Link below.

(Also feel free to browse the rest of our site! We are here to help raise awareness about chronic illness, and to support and encourage fellow warriors!)

Wishing you all well, and sending lots of love and spoons to you!

IG: @positively_jord

#EDS #POTS #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #ChronicIllness #ChronicIllnessBloggers #ChronicPain #AdrenalInsufficiency #HypothyroidismUnderactiveThyroidDisease #VasovagalSyncope

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Does anyone with #POTS or vasovagal syncope think that fitbit counts their episodes as flights of stairs?

I havent done any stairs today but have had several episodes from standing up too quickly on accident... noticed the stairs. Weird coincidence? #POTS #Spoonie #Fitbit #Tachycardia #vvs #VasovagalSyncope

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Choose Happy

I had an EEG, MRI, and 2 MRA's January 2nd. The doctor said his nurse would call me back with the results within the week. FOUR weeks later the nurse calls and says everything was fine but there was an irritation on the EEG that needs a closer look so they referred me to another neurologist. They called me within 3 days. She said that I needed a video EEG. I asked if I could wait til April and she said, "Honey, this needs done now." I am looking like a biker (pretty cool huh! LOL). I'm not a huge fan of staying home on the couch vegging out. I see things need done and at first I was irritated. Then I thought of Apostle Paul when he stood before King Agrippa and said, "I think myself happy..." If Paul who was a prisoner in an actual first century prison can think himself happy in his horrible situation then I can think myself happy as a volentold couch potato. This won't last forever and Lord willing the doctor's will be able to help me with whatever is going on! So....I will think myself happy and do this thing! 🙌🙌😜#videoeeg #Seizures #neurocardiosyncope #VasovagalSyncope #thatslife


Avoiding 911 happened. WHAT? Oh, I'm glad you asked. I fell asleep...ok...I out right passed out sitting on the toilet in a public restroom. I'm not sure how long I was out...not very long. When I woke up I thought, "Do I attempt to wash my hands and risk passing out again...and having people call I sit here...on the toilet and wait for this next bout of 'graying out' to pass?" You guessed it! I sat on the toilet of the public restroom in this very expensive hotel to wait out a wave of whatever you want to call it to save face. I lived! No 911!!! #Dysautonomia #VasovagalSyncope #NeurocardiogenicSyncope

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