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IamA 21 year old girl suffering from an incurable and sometimes untreatable condition called POTS (postural orthostatic tachycardia syndrome) uodates and more, AMA!

Jan 4th 2015 by jen235 • 7 Questions • 166 Points

Hello again everyone. I posted this link last year and I thought I would give everyone an update.

It turns out I also probably have lupus or something like it. They are running the test this month. Since the last post I have gotten better, but there are still many issues and I have to go to the doctors four times a year. I just wanted to raise awareness again and am willing to answer any questions.

Edit: Here are a list of my symptoms include: Lightheadedness, Fainting or near fainting, Palpitations, Tremors, Shortness of breath, Chest pain, Multiple stomach issues, Insomnia, Tachycardia, Exercise intolerance, Anxiety, Flushing, Blood pooling in limbs, Intolerance to heat, Feeling cold all over, Low blood pressure upon standing, Cognitive impairment (aka difficulties concentrating and brain fog), Hypovolemia (low blood volume), and muscle pain.

Proof: Last years post http://www.reddit.com/r/IAmA/comments/1kkjyb/iama_20_year_old_girl_suffering_from_an_incurable/

Q:

I am almost positive I have this. Went to a neurologist on nye and am going to be doing tests. I have all of these symptoms. The palpitations are more than once an hour and the chest pain is really scary. The passing out is so weird my vision goes fuzzy black and I feel like my hands and face are tingling/vibrating. Do you have a MTHFR mutation too? Pretty sure I have EDS as well as my entire body cracks and crunches like I'm made of wicker and my ribs are constantly out of alignment (from a shallow cough or from nothing!!!) I have been dealing with all these symptoms for a long time and I feel like I'm going to punch the next person that tells me its all in my head. How do you muster the energy to do anything? I feel like I have energy one day and the next I am totally tapped out (maybe even for a couple days.)

A:

I don't think I have that mutation. I also dislocate my ribs all the time :( It hurts so bad.

Just keep pushing until you get a doctor who will see you as a person not just another hypochondriac. There is someone out there who will help you!

And honestly I have to force myself to get up and do stuff sometimes. Like this week I didn't do much of anything until New Years on purpose, then I partied pretty hard. The next few days if I even wanted to move I had to mentally prep myself. Even today I only got out of bed to go to work and I could barely move at all.

I just try to know my limits with my energy and prepare for the days that I think might be bad.


Q:

Does knowing that you are incurable make life harder?

A:

I have my days where it gets me down, but for the most part it has just become my reality. It only really bothers me when I think about potentially having kids. I don't want to pass anything on to them.


Q:

Are you my girlfriend? She has POTS and is 21yo

A:

Nope haha


Q:

Are you allowed to drive?

A:

Yeah, I only pass out when standing up so I'm legally able to drive.


Q:

what keeps you motivated day to day?

A:

Mostly my friends, but also the fact that I still want to reach the goals I set for myself in life. I just might have to reach them a different way than I had planned on.


Q:

1) What's your regular blood pressure (when seated)?

2) Which type of EDS do you have?

A:

It's usually pretty normal. Lately it's been 100/70 though, And I have hyper mobility type


Q:

Are you still taking the beta blockers?

A:

Yep