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Yesterday I was braiding my hair when I started to feel my heart rate rise. This normally happens when I braide my hair. But then I went to walk to my room and I collapsed on the ground! Out of no where! I hadn’t even felt dizzy before it! Luckily I didn’t black out, so I got to my bed and checked my heart rate. It was 243! I’ve never seen it so that before. But I had a GI appointment that afternoon so I got up, grabbed my cane, and went to my car. I drove myself to the appointment and went through everything. Towards the end of the appointment, my GI doctor told me to go to the ER directly afterwards to see my heart.
Apperently I was having a SVT attack. They rushed me to the emergency room and started doing so many different things. I felt like I was in a doctor show! Luckily they got it under control and I’m feeling much better today.

I thought I had pots for years, but I haven’t been tested for it yet. Does anyone with ehlers Fans los Syndrom or POTS have any experiences with SVT or SVT attacks? I’m going to meet with a cardiologist soon, but wanted to see what you all thought while I wait.

#ChronicIllnessEDS #EhlersDanlosSyndrome #LivingWithPOTS #PosturalOrthostaticTachycardiaSyndrome #svt #SupraventricularTachycardia #InappropriateSinusTachycardia #ChronicIllness


Physical health #CushingsSyndrome #svt #Steroids #MyalgicEncephalomyelitis #atopy

Home from hospital now, so happy to see my children. The worst part of all this is how suddenly i become unwell and end up in hospital and have to leave them with someone else. Looks like my heart is the issue, i went into SVT and they had to give me IVs to stablise my heart rate. Looks like it could be cushing syndrome too, and steroid induced diabetes with my blood sugars going above 20. They’re looking more into what’s going on with my heart and I’m now going to be under the cardiologist, as well as the thoracic clinic too with my usual respiratory consultant. Will have occupational therapy, respiratory nurse to visit at home as well as speech and language to help with my voice and swallowing problems. We are going to try and reduce the steroids a bit as currently on 50mg and have been for ages. The weight should start to fall off with the reduction too. My new wheelchair comes tomorrow one i can wheel myself rather than being pushed so will give me some freedom. Been a really awful few months, they want me to do counselling because of how much my life has changed and how limited i now am and they said they can arrange it for me though I already have a private therapist so not sure what I’m going to do yet.

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Anyone out there in their 20s or raising a toddler with hypopituitarism? Looking to make a friend that understands :)

I’m a 24 year old mum to a 2 year old girl from Australia, currently living in the thick of the Victorian Coronavirus pandemic. I’ve also got hEDS and some heart problems along with all the other fun bits and pieces like anxiety, depression, RLS, scoliosis etc but the thing causing me the most trouble right now is the hypopituitarism. I would love to make some friends with the same condition. #Hypopituitarism #HEDS #svt #heartabnormalities

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Electrolyte imbalance and such #ChronicIllness

Okay, I have a huge problem with electrolyte imbalance and I also have heart issues. And it affects my kidney function. Had to go to ER last night and got massive amounts of fluids. I've been resting today and drinking fluids but my feet are still swollen. How do you all handle your electrolyte issues? I drink water and Propel and Vitamin Water and some days it helps, others, well I look like this. We continue to play with my meds and we have me on one a fluid pill that spares my potassium but if I don't take my fluid pill my feet look like this. Such a catch 22!! So any suggestions are welcomed! #earlyckd #afib #svt #Hypertension #electrolytes #vitaminddeficiency

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Cold/flu season

Had to go to the ER. My HR shot up and had chest pain. Also just felt miserable. My counts showed I'm probably getting an infection. An infection with #AutoimmuneDisease is not simple. So moral of the story: if you are sick, STAY HOME! It is dangerous for us. I am glad I went because it could have been way worse if I had waited. Rest and fluids for now. #svt #afib #Fibro #autoimmunelife #heartpatient


Rare and Mighty is what I strive for. #

I will be bionic after I get my other knee replaced and my other shoulder replaced. I will tend to my garden and life will be better.
My true super power is educating people about my illnesses. So many have responded with "My cousin/friend/etc had Lupus, I thought she just had to stay out of the sun." It's so great to see the light bulb go off above their head as they realize what life is like for someone they care for. It's a flash of empathy that I hope stays with them.
#RareAndMighty #HEDS #Lupus #tietze Syndrome #stage 3 Kidney Disease #Shoulder Replacement Surgeries #knee Replacement Surgeries #svt #a -fib #chronic Pain