Friday, February 28, 2014

POTS Symptoms

This is the only list I've found on POTS symptoms (in list form) and it said incomplete but you know. It's something.
☑ Lightheadedness
☑ Fainting or near fainting
☑ Visual blurring or tunnel vision
☑ Palpitations
❓✴ Tremulousness (shakiness) and weakness, especially of the legs
☑ Fatigue
☑ Exercise intolerance
❓✴✴ Hyperventilation
☑ Neck pain, also called “coat hangar pain”
☑ Shortness of breath
☑ Anxiety and panic feelings
☑ Chest pain
☑ Nausea and other stomach and digestions symptoms
❓ ✴✴✴ Acral coldness or pain (meaning in the extremities)
☑ Concentration difficulties (brain fog)
☑ Headaches and migraines
☑ Sweating problems, either too much or too little
☑ Increased heart rate while laying down
❌ Foot swelling and obvious blood pooling in the legs
❓✴✴✴✴ An increase in adrenalin levels in the blood (called norepinephrine and catecholamines)
✴Only when I'm pre-syncope
✴✴Not normally but anxiety causes it so I can't say yes or no.
✴✴✴No clue what that is. My feet hands get numb cold and tingly but I don't know if that's the same.
❌ Not as far as I'm aware
✴✴✴✴No clue
So a whole lot of ☑, 4✴ (maybe or I'm not sure, need further clarification, or explainable by other symptoms/not frequent), and one lonely not that I'm aware of/no.

Tuesday, February 25, 2014

To Vanderbilt or Not To Vanderbilt

That is the question.
I saw my Electrophysiologist last week. It'd been 6 months since my last appointment. Probably more since they rescheduled it. Probably closer to 7 months. We talked about the weight loss I'd had and how even the diet change, while I felt better, I didn't FEEL better. We also talked about how the calcium channel blocker wasn't NEARLY as effective as the beta blocker I'd originally been on. He mentioned that it was common and upped the dose plus put me on Florinef. Well, generic.
Then I asked the question I'd been meaning to ask at nearly every appointment but wind up not for some reason. At a few appointments he'd mentioned POTS in passing and I'd wondered since the beginning if I had it too. He said he'd always leaned more towards POTS for me but to say definitely that I did, I'd have to undergo more testing, something about sweat test and possibly more. I always thought a tilt test could tell both but I don't know, maybe the NCS got in the way? He also said that testing is done at big hospital/universities, the closest being Vanderbilt. He said while it's his opinion that I do indeed have POTS, he hasn't sent me yet because the treatments are the same/similar but he'd refer me out if I wanted.
I don't want to change doctors or have to go to Vanderbilt for all appointments and I'm not sure if it'd change anything but I WOULD like a definite "Yes, you do." Or "No, you do not." I don't know what I'll decide. He said we could discuss it again at my next appointment in 3 months (not 6, since I'm not doing as well as we'd like) or if I felt the need, I could call any time but the wait is 6-12 months.
We shall see.