CoreTheConquerer

Hey there, thank you so much for the reply!!! At the time of my sisters death, it was basically a suspected V-fib. However, by the time she got to the hospital... she was already basically gone, almost no brain function and they basically treated it as if she were dead. They didn't do much and we really didn't get many answers. No autopsy- either, because it wasn't suspicious or anything. If it had happened 5 years earlier, before NY overturned a law for mandatory autopsy for sudden death and such, then it would be a very different story. I wish my family had persued a lot of different things at the time but.... It's understandable to me to an extent that they didn't. Honestly, to this day.... I think i'm the only one that knows (with a fierce intensity) that she didn't drive herself to death. I always get "well, she was really, really stressed out....". Well, yeah... I can more than understand why by now! Thank you so much for the advice on how to go about checking out and recording my patterns. Also, I will definitely be looking into a test for vascular type EDS! I always kind of thought it'd be more obvious but after going to the site you recommended... It's changed my mind. I will also be getting a TTT soon, the cardio just has to go about it a certain way for my insurance company to be on board. I have had an ultrasound done of my heart about two years ago and they did say one of my valves appeared to be maybe-abnormal and they wanted me to get.... an MRI maybe? or CT? I cannot recall. I'll be making sure to get all of that checked out as soon as possible, also. I've been brushed off and put into the crazy box for way too long. I'm finally ready to fight, even if I keep having to push myself along but.... It's been such a relief to see people experiencing similar things. Even facing what I know will be a life-long fight to some degree, I feel so energized mentally just getting to be among people who understand, who fight, who are constantly searching for a way to not let all of this drag them down.

Hey there (: So, backstory- I'm a 23 year old female. I have never even heard of POTS or EDS whatsoever until about 2 weeks ago. My new cardio mentioned it briefly on our initial visit, among other things. I went home and looked up POTS immediatly... and it absolutely BLEW MY MIND. Finally! I feel as if I have some sort of answer for what has been going on with me my entire life. Naturally, I stumbled across Ehlers-Danlos at this point & it seemed like yet another thing with resonance in my life. I have daily nausea (have my ENTIRE life), have had "fainting spells" and near fainting for as long as I can remember also. SO many things... Honestly, the list would be seemingly neverending. I'm sure a lot of you, or all, know what i'm going through and mean. I also got a heart rate monitor for when I work out... out of curiosity, I checked out what my heart does. Besides being highly erratic all of the time, basically.... My heart rate jumps at least 30/bpm even just sitting up more. Just standing in my kitchen it was hitting 170. When it comes to the EDS- my entire family was always just "super flexible"... I never realized it could mean anything. I can't even count the amount of times I've asked doctors about the possibility of having arthritis and been tested. I can disclocate my shoulders, my hips do it (definitely never do that intentionally =/).... I'm basically translucent, you can see not only major/big veins but the tiny ones, also. There is a definite family component. However, the POTS seems to not have affected any of the men really beyond teenage years... through recent conversations it was something they grew out of. Out of 6 sisters, only one had it like I do. Unfortunately, she suddenly died a month after her wedding about 3 years ago. She had gotten progressively worse over the years, seen a million doctors... nobody found anything significant.... they said she was just anxious and making herself that way. Hah. I feel very mixed about the implications of all of this but... I have NO CLUE where to start. What do I do first? Where do I go from here? Does this seem to fit or am I actually being a crazy hypochondriac??? I don't know how much longer I can do this sometimes... Thank you for any input, thoughts, anything!