New Member From Nebraska

[leydengs]

Hi everyone! My name is Gwen and I'm 31 years old. I was diagnosed with POTS almost 3 years ago. I've had it since I was a teenager but it wasn't until I got my first ever flu shot (1 month after having my 2nd child) that I wound up in the hospital and in a wheel chair. Thankfully I was given the only doctor who specializes in POTS in this area. After a spinal tap, multiple Eegs, MRIs, etc I was given steroids and sent home. The doctors thought I had MS. It wasn't until a follow up with that doctor that I started talking about my "dizzy spells" (as I call them) that he immediately scheduled me for a tilt table test which for a person for POTS that was by far the worst test I've ever had. I almost passed completely out and I almost vomited. My heart rate went so high they had to go get a nurse to check me over before they would move the table and unstrap me. I've tried the different meds but the side affects were so much worse. I've dealt with POTS for so many years that, as strange as this sounds, it's "normal" for me so the side affects from those meds just weren't worth it. I exercise daily. In fact shortly after being diagnosed I did my first figure competition. I've done a marathon and a couple half marathons in the past. Some days it's pretty much impossible to workout so I just have to take it 1 day at a time.

I'm glad I found this site, it will be nice to be around people who understand what I'm going through. My family is, shall I say, less than supportive. I had a "dizzy spell" in front of my sister and her response was "Oh, you still have that", as it's just going to magically go away HA!

My goal is to start a support group here in Nebraska and to help raise awareness for this disorder. The most frustrating thing is the lack of knowledge about it in the medical industry. I've had nurses ask me "Are you a nurse?" when I explain to them what it is because I've done so much research on it.

[diamondcut]

Hi

Thought i would say hello as i had a quite similar story, i had POTs from a teenager i believe and i was only officially dx over a year ago, i feel so bad for you that your own family had this attitude with you, i read your other post with "i told you so" on it and did chuckle to myself.

Good luck with the awareness ideas, there are a few in the UK trying to do the same thing and its not easy getting Dr's to listen but i suppose we are the ones who can try and change that.

Hope you find support on here as i have done.

[leydengs]

It's great to meet you!! My family is starting to come around and be more supportive but that's only because I've pushed them to learn about this disorder. I'm sorry to hear you had to go so long without a dx, I know how frustrating that is.

Thanks, I hope so too!!

[looneymom]

Hi and welcome aboard. I am almost in the same boat you are. I am the parent of a 12 year old boy that has POTS. We live in Oklahoma and nobody knows too much about POTS. We have found a couple of doctors that are supportive and have been researching to figure out where to send my son for some more evaluations. Since he has been diagnoised, other symptoms have started. This is a great place to ask questions and everybody is very supportive.