When I was first diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) I took in the internet with one huge gulp of air.
I had to know everything.
I had exactly one million and nine questions. And knowing there were Facebook support groups where I could semi-anonymously ask these questions gave me unimaginable relief. Over the next few months I would ask and watch others ask the same questions over and over. And then it was time to learn things for myself. Years of experience as a patient with severe dysautonomia have given me a lot of insight, and so, as we gear up to the 2016 Annual Dysautonomia International Conference I wanted to jot down a list of all the advice I’d want to give a newly diagnosed patient:
- Yes, it’s normal for your heart to beat that fast. When you get on the right beta blocker it’ll slow down.
- No, you won’t die, even though it feels like it. It’s okay to feel like it though. It’s okay to go to the emergency room and get an EKG. It’s okay to take a Xanax. It’s okay to cry because you’re scared.
- You’re not lazy, exercise intolerance is a real thing and it happens when your heart is beating that fast, that often. It’s going to take you some time to re-learn how to exercise and you might gain some weight during the onset of your symptoms. It happens to everyone. You’ll figure it out.
- You’re going to run into doctors who claim POTS isn’t “real.” It is.
- You’re going to run into doctors who will call you “lazy” and say you’re “faking it.’ You’re not.
- You’re going to run into doctors who will say you won’t need a handicap pass, don’t qualify for disability, won’t prescribe a wheelchair or circulation stockings for you.
- These doctors are uneducated and wrong on all of these issues. It has nothing to do with you. Please go find another doctor who is educated on dysautonomia. Please don’t give up on getting better.
- Yes, people with POTS have problems with temperature control.
- Yes, people with POTS need a high-salt diet.
- Yes, people with POTS can benefit from IV saline therapy.
- Yes, there are people with POTS who use ports and PICC lines.
- Yes, people with POTS often find they have other related diseases like EDS, gastroparesis, and MAST Cell.
- In my opinion, having been there and done that, the POTS Clinic in Dallas Texas is not what it describes itself as. It is a biofeedback center which does not address the symptoms of POTS patients. I do not recommend spending $5000 to go there and be treated.
- A great way to exercise is a recumbent bike (stationary bike.) This is often recommended during cardiac rehab (another physical therapy you can request from your doctor.)
- POTS patients see doctors from all over the specialist spectrum—neurologists, internists, chiropractors, etc.
- Yes, “blacking out” but not fainting is normal.
- Yes, not fainting can still mean you have POTS.
- YES—There are studies happening all the time on POTS, we are on the lookout for cures. The wheels are in motion, constantly.
Feel free to add your own facts/advice for new patients below!