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Wow, Urgent Care, Ambulancr and ER docs all knew about Dysautonomia!


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I haven’t been to the hospital in more than 15 years.  Today I wound up going to urgent care because of extreme bleeding from my mensural cycle for a couple of weeks which suddenly got worse today.  The doctor was afraid that I needed a transfusion so she made me go to the hospital by ambulance. Every single person from the Urgent care doctor to the ambulance workers to the ER nurses and doctors knew dysautonomia/POTS. The doctor told me she has dysautonomia!  It was surreal as this was the very first hospital I went to when I first got sick many years ago and people had no idea what I was talking about.  Awareness has come along way.  
 

My issue is not resolved and I have to follow up with doctors for a bunch more tests, though it is likely something minor like a fibroid cyst causing this. But I still feel so happy that this was such a positive medical experience.   

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@yogini - I am so sorry you had to go to the hospital! I hope all will turn out OK and they get the bleeding under control without a transfusion. --- I can see how reassuring it must be to come to the hospital in such a state and to be met with understanding and competence regarding POTS. Things are changing! Good job to the staff of your hospital, I hope this trend will spread!!!!!!! --- Best wishes, get better soon!

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Wow, what a change! That is very heartening.

Sorry you had to go to the hospital, but it is good that your doctor took the bleeding seriously. Hope it gets sorted out soon.

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So sorry, I have had that issue in the past and it is very scary, and does warrant an ER trip if severe.

I also had the experience of being in the same hospital where I was told I had severe anxiety, years later, and staff actually were aware of POTS.  Unfortunately I do not think ER staff are routinely informed--for example--to test orthostatics when symptoms and and other testing warrant, and also that most patients w POTS who come in feeling very poorly would benefit from IV saline before being sent home.  But hopefully we are moving in the right direction with awareness in the general medical community!

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Thanks everyone for the very kind and supportive wishes. I've seen POTS in the news a lot more because of Long COVID, so maybe that's why ERs here in New York City are much more aware than they used to be.  I imagine a lot of confused people flooding the ERs with strange POTS symptoms the way I once did.  

I was able to meet with my PCP and he ordered an external ultrasound which I had on Friday.  Seems it'll be a couple weeks by the time I get my test results and see a specialist but they think it is something like fibroid cysts or endometriosis that can be treated with birth control. 

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  • 1 month later...

The young (and handsome, why do they always send the best looking ones when I feel and look my worst! 😔) paramedic who helped me the other day had also heard of POTS and even said it before I told him what was wrong. So far only encountered 2 doctors out of 30+ ER trips that knew much about POTS and both were young, It’s nice to know people especially the younger generation are becoming more aware of this condition.

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@sunbun - my autonomic specialist told me years ago that POT and dysautonomia was now an approved condition that has to be taught in medical school. My daughter had to see a pediatric cardiologist a long time ago who was ancient. He gave me that empty, blinking stare when i mentioned POTS, but the two medical interns in the room nodded their heads when I told him about HPOTS and NET deficiency. So there is definitely a bright light of a lightbulb going off on the horizon!

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I have found it is hit and miss with the Medical professionals in my neck of the woods. Not sure if they just ignore dysautonomia for whatever reason or just don't have the proper skills to recognize it.

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  • 4 weeks later...

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