Frustrated With Doctors

[vepa]

Hi everyone. I'm brand new to this thread, and here's the deal:

I am absolutely certain I have POTS, but am unable to get a diagnosis. Since I was a young teenager, I've had issues with dizziness or blacking out when standing, my hands often going numb (and swollen and red), extreme fatigue, and headaches. When I read about POTS or read forums with people talking about POTS, it all sounds exactly like my experience. I have done the stand-test on my own multiple times, with consistent results of my heart rate going from 70-80bpm to anywhere from 115-150bpm. 

However, every doctor I have visited has told me it's simply anxiety, dehydration, or "completely normal to get a 'head rush' if you stand up too quickly." If I bring up POTS on my own, they brush me off. There seems to only be one doctor in my entire state that specializes in POTS and my attempts to schedule an appointment with her have been ignored.  I also can't afford to travel. So I've basically just been trying to drink a lot of water and eat more salt based on what I've researched myself, but I'm not a doctor and have no idea what I am doing. I would really like to have an actual doctor to help me with treatment and to get officially diagnosed.   

I'm at my wits end trying to overcome the health care obstacle course. It's expensive and unbelievably frustrating.

 

[statesof]

Hi Vepa, not sure if this financially works for you or what your insurance is like, but there is the physicians list with POTS/dysautonomia knowledgable doctors who would know how to diagnose these disorders. There may be one in your area: https://www.dinet.org/physicians/

[DizzyGirls]

Hi Vepa!  Welcome to the forum!  You said you are not a doctor and you are trying to find a knowledgeable one to help you.  I, too, have said those words early on.  I'm still not a doctor, but I sure as heck know a lot more than most doctors put together.  There is so much information on the internet and you have already begun your diagnosis because you are consistently getting the same results when you do the "poor man's tilt table test".  So, you do know what you are doing.   Our cardiologist at UCSF didn't like the tilt table tests.  He said they were barbaric and that you can get a good analysis of a person by doing just as you have done.  Write these records down, put a date with them, keep them somewhere safe.  I know we can't prescribe our own meds, so for that you will need a doctor, but many of us have diagnosed ourselves and searched for the doctor after.  That's how we handled my daughter's cervical instability.  Nobody and I mean NOBODY knew what was going on.  It wasn't until I started looking into Chiari and then my dad found information on cervical instability, that we then searched for a doctor who knew about Ehlers Danlos, POTS, and cervical instability.  She's now 5 weeks post op!

Whatever you do, don't sell yourself short!  You found this forum, didn't you!?