Going To Cardiologist Tomorrow...

[erickamcc0523]

I'm starting off by writing down a list of symptoms, but I was thinking about also printing off the symptoms of POTS here on dinet and highlighting all of them I have. I will also insist on having my pulse taken while I'm sitting (after doing so for at least 10 minutes), and then after I stand. I will also insist on a ttt, but other than that I have no idea how to talk to him about this, so I was wondering if anyone had advise on how to do so.

[firewatcher]

I would do a poor-man's-tilt on your own tomorrow morning. Before you get out of bed, take your HR and BP. Stand up and take them both again at 1 and 3 minutes. It will always be worse first thing in the morning. Print some of the shorter articles on POTS and ask to be tested, if he doesn't feel qualified, have him send you to Vandy. Ask him if there are any other conditions that could be excluded or would explain your symptoms better than POTS. Let us know how it goes!

[ByteMe58]

A list of symptoms would help. It's not just dizzy or passing out. Don't forget things like numbness in the lower extremeties. sweating, eating disorders, tinlging on the top of the head while standing, difficulty seeing and hearing, and headaches.

Take your shoes off and look for swelling of the veins in your feet while standing. Pooling in the hands and feet in the first few minutes may help the doctor to believe.

INSIST on a diagnosis, don't settle for anxiety, mid-life crisis, or what a cardiologist told me "why don't you just buy a sports car like everyone else?".

Good Luck

Frank

[erickamcc0523]

Thanks for the information... I have trouble taking my BP by myself (especially in the mornings... my hands don't like to work so well, and I have an old fashioned BP cuff... I can't put it on myself too well), but I have been checking my pulse rate every morning, and there have been a few times it has spiked to over 150 in the mornings. I have written down a list of all of the symptoms that I believe that are related to POTS. I will ask for a ddx, but currently, I am 99.9999% sure that my symptoms are caused by POTS. Quick question about a symptom, though... when I'm feeling presyncoptic, sometimes my mouth and throat (and sometimes lungs) will feel very tingly, and when it hits my lungs, it almost feels like they are paralyzed for a short moment. Could that be related to POTS?

This is the second time that I have diagnosed myself... when I was 20, I had my gallbladder removed, but only after 5 years of horrible gallbladder attacks and a few GI docs telling me that I was having psychosomatic stomach pain and nausea. The whole time, I knew it was my gallbladder. At that time, I didn't know about a HIDA scan (until 2 weeks before my gallbladder was removed, when it finally confirmed that it wasn't working), but if I had, I would have insisted on that test.

[Brye]

No brilliant tips but best of luck! I was lucky to get a quick diagnosis. I saved a lot on the stress. Not so lucky on the treatment success but at least they made the diagnosis quick!!! Finding a good cardiologist is so critical!!

Take care!

Brye

[erickamcc0523]

Great news!!! I missed a return phone call earlier from Dr. Leppanan, who is listed as a local resource on Vanderbilt's Autonomic Disorder Clinic's website. He specializes in autonomic testing, and one of his collegues (a Neurologist) in the same practice is very familiar with POTS. I didn't get a chance to talk to him, but he left a voicemail saying that he told his collegue about me, and that he agreed to take me on as a new patient!!!! I will still be going to the cardiology appointment tomorrow, but I am very thrilled to know that I have another local option to exhaust before needing to travel to Vanderbilt. I am even more hopeful that I won't have to, as long periods of travel really tires me.

[firewatcher]

Excellent!