Syra

Thank you. It is encouraging to know you had a reprieve firewatcher. Cheers (with a liter of saline IV) to all of us recovering! 

On August 10, 2017 at 4:37 AM, firewatcher said:

Hello everyone. 10 years ago, I was diagnosed with POTS (hyperadrenergic tendency type) at Vanderbilt University. My condition has waxed and waned and flared up during the years, but mostly improved. Two years ago, I was frustrated with my progress and did the Levine Exercise Protocol for POTS. It was difficult, but possible and I almost ditched my POTS diagnosis. I was excited at my progress, but my local doctors in Atlanta were not, and were very discouraging, so I stopped...and things got worse. I thought that if I ignored my issues (like they did) and did not bother to treat it, it would go away. It did not. I have also been hit with almost daily migraines, and now perimenopause issues, so I am trying to get back to where I was two years ago.

Anyway, I did a very adolescent thing: I ignored my conditions. I denied my diagnosis. 

I was so tired of wearing this ****** diagnosis like some merit badge, that I pretended like it did not exist.

It makes it difficult to find doctors who will treat me, because they've never heard of it and don't have time to familiarize themselves with it, other than a blurb on Medscape...they all stop at the word "benign." I still do not have a "treating" doctor for my POTS: the local cardiologists say that a neurologist needs to follow it, and the neurologists say it is treated by cardiology...forget family medicine.

So in frustration, and seeking understanding, I am back.

Good to hear that the Levine Protocol was effective! I tried many times but my body just can not push past the pre-month intervals. I also tried to ditch my POTS diagnosis but it caught back up with me as well. Daily migraines here too. All this, to say, I hear you! The hormonal connection discussed here is interesting. I'm surprised to see other women here in my age range. So sorry to hear your frustration firewatcher. You're not alone. And thank you for posting because this thread got me to sign up just now. Newbie alert. LOL