Almost died from autonomic storm and the cardiologists kept insisting I was ok and I was practically screaming it was my brain and it took me researching in the hospital to see it was happening because I have delayed hydrocephalus from a 2cm pineocytoma that caused a CSF leak and increased intracranial pressure... My HR was 16 and BP was 70/50 and swung up 211 250/200 and everywhere in between in one day. Most doctors know nothing about it and dismiss the symptoms even though they're fatal but you need to find a good neurologist and electrophysiologist to get dx. Thanks for the video
I'm so sorry you had to go through that-your determination and research made a crucial difference in your care. Finding a knowledgeable neurologist and electrophysiologist is key. ❤️
If you go into emergency room with these symptoms they will say you have anxiety/panic attack. Medical practitioners need to be educated on symptoms of dysautonomia and if anxiety is suspected they must attempt to rule out dysautonomia. Anxiety is always a diagnosis of exclusion after everything else is ruled out, unfortunately many medical practitioners use anxiety as a cop out. Again, learn about dysautonomia, pharmaceutical companies need to come up with an antidote to this illness.
Almost died from autonomic storm and the cardiologists kept insisting I was ok and I was practically screaming it was my brain and it took me researching in the hospital to see it was happening because I have delayed hydrocephalus from a 2cm pineocytoma that caused a CSF leak and increased intracranial pressure... My HR was 16 and BP was 70/50 and swung up 211 250/200 and everywhere in between in one day. Most doctors know nothing about it and dismiss the symptoms even though they're fatal but you need to find a good neurologist and electrophysiologist to get dx. Thanks for the video
I'm so sorry you had to go through that-your determination and research made a crucial difference in your care. Finding a knowledgeable neurologist and electrophysiologist is key. ❤️
Thank you for sharing❤❤❤❤. Alot of Drs have gaslighted me and are lazy and accused me of thinking it's in my head. So messed up
If you go into emergency room with these symptoms they will say you have anxiety/panic attack. Medical practitioners need to be educated on symptoms of dysautonomia and if anxiety is suspected they must attempt to rule out dysautonomia. Anxiety is always a diagnosis of exclusion after everything else is ruled out, unfortunately many medical practitioners use anxiety as a cop out. Again, learn about dysautonomia, pharmaceutical companies need to come up with an antidote to this illness.