Possible Pots/eds- Thoughs/comments/anything?

[CoreTheConquerer]

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!

[arizona girl]

Hi, welcome and sorry you needed to find your way here.

May ask what your sister died from? It is concerning and something that can happen with one particular type of EDS. The vascular type. There is actually a genetic blood test for this and considering your symptoms and your family history, something you should for sure rule out. I myself had that test done. It is important for you to find an EDS specialist in your area, they are usually rheumatologists and genetics doctors. EDNF.org is a good resource.

If you don't own a blood pressure cuff yet, I'd pick one up. Get one that records multiple readings. If you haven't read about it yet, you can do what is called a poor man's tilt test at home. Start with taking it first thing in the morning while still supine and not moving around a lot. That will give you your baseline, then take it at 5 and10 minutes of stationary standing. I would also take it when you are feeling off. Keep a chart of your numbers and what posture you were in when taking it. Doing this will give you a lot of information. It will help point you to which forms of dysautomia you are dealing with. Pots is only a rise in hr on standing. You may find you are also hypotensive on standing or hypertensive, you may also find you are hyper on hypo when supine.

You may want to ask your doctor for a tilt table test as well. Pots and eds are often found together. Did your cardiologist do any imaging testing of your heart and vessels? It is important that you let them know of your sisters sudden death. Obviously there was something wrong and no one believed her. It is unfortunately a very common experience for most of us on the forum. You know in your gut somethings up, listen to yourself and don't allow yourself to be brushed off.

Hope you get your answers soon, glad your taking the time to do what is right for yourself and reaching out to others. You will get a lot of support here to do that.

[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.

[Chaos]

Welcome! Sorry you have a reason to be here. Arizona girl gave you good advice. I would second her opinion that you get to an EDS specialist and get the test for vascular EDS done given your family history.

Good luck with your TTT! On the poor man's TTT at home they usually recommend that you also take readings at 1 minute, 3 minutes,5, 8 and 10 minutes while you're standing, I believe.

At least if you can put a name to your crazy disorder, it helps a lot. I think most of us have had that experience. It's a real relief at first to get that diagnosis and know you're not alone. Learning to live with it.....that's another matter.