Chronic Heart 2 Heart Podcast Episode #1 David Interview HyperPOTS

Villainari_
Villainari_
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Published 2023-05-22
*Please note this is not to be used as medical advice, Chronic Heart 2 Heart is a Podcast where people with complex, invisible diagnosis share their stories with the internet. It is simply a podcast of information sharing and caring*

This is a call to anyone in the community who has mental health diagnoses/chronic health conditions or who is considered to be disabled, if you or anyone you know would be interested in being interviewed for my YouTube channel and sharing about your life with your diagnoses please message me. would love to have anyone wanting to participate in my new podcast Chronic Heart 2 Heart.

Posting new podcasts at least once a month for now due to the documentary filmmaking that is happening.

I aim to raise awareness for rare conditions and bring about hope for others living with chronic health conditions. I live with Ehlers-Danlos syndrome, hyperPOTS, and MCAS. I want to help others share their stories Rare and complex illness needs more awareness, and people living with complex health conditions matter too.

Feel free to join me on social media
linktr.ee/villainari
All Comments (4)
  • @78jgvincent57
    I love that you’re doing this! I have hyperpots and still trying to find a specialist so not really well controlled at the moment. Never met anybody else with hyper subtype
  • @chrismaddison7464
    THANK YOU SOOO MUCH for creating these videos. I’ve just been diagnosed with Hyperadrenergic POTS and it’s such a relief to know I’m not losing the plot! I can totally identify with all the weird symptoms you’ve both described (I’ve also been in A&E with suspected heart attack because of chest pain a while back and had a TIA). I think I’ve been really lucky with getting diagnosed. I have a healthcare background and was able to piece things together (eventually) and opted to see a Autonomic Cardiologist who was amazing. Nothing showed on initial tests but he ran some really specific tests, including tilt table, and they showed wild blood pressure changes and pretty serious hyperventilation amongst other things. Have just started meds to try and address fatigue and the horrendous adrenaline surges at night. Took around 18 months to get this first diagnosis this time around but have clearly had this most of my life. Tests also indicate the immune system might be involved so waiting on results for Mast Cell involvement. I can identify with so much of what you guys have gone through.