Recently diagnosed, with dysautonomia, but could it be pots?

[Alicat_326]

Hello, I recently went to urgent care for migraines and mentioned my heartrate had been doing crazy things. I've been active my whole life, dance, working out 5 days a week. I was sick with mono for about 3 months in early 2020 and my body never fully recovered. Almost Everytime I stand up my heart rate skyrockets, my vision goes black, I get shakey, I have brain fog all the time, I'm always exhausted. I get nauseous after eating, I cant stand longer than an hour without my legs getting a throbbing ache. They put a heart monitor on me at the urgent care and set me up with a primary care physician. The monitor came back and I had sinus tachycardia, they found I was vitamin D deficient through blood tests, but other than that I wasn't anemic, so they couldn't figure out what was wrong with me. My primary care physician referred me to a cardiologist who listened to my long list of symptoms that have been going on for close to a year now and she said I had dysautonomia. They tested me for POTS by having me lie down, taking my blood pressure, having me sit up but still remain seated, check my blood pressure, and then they had me stand after a few minutes and took a final blood pressure. The doctor told me I did not qualify for POTS because my blood pressure did not drop enough when i stood. But the way they had me seated was my legs right out in front of me and not on the floor like they would usually be. And usually I wouldnt have such long pauses between each phase when I'm just standing up to move throughout the day. Is this an accurate gauge for if I have POTS or not? Or should I get a second opinion? They didnt explain much to me at my visit (thankfully indo my research so I knew what they were talking about) and they said they'd see me in a year unless things got worse. Gave me a treatment plan of increase my sodium and water, wear compression garments, and slowly work on exercise. No specifics, no general amounts for sodium intake. This was all about a week ago so I'm still trying to figure everything out. But I'm wondering how that was an accurate test for pots and how they could rule out orthostatic hypotension in a setting like that when in everyday life my vision goes completely black and I almost faint multiple times a day. If anyone has any tips at all as far as day to day goes, or if I should get a second opinion, i would really appreciate it, if you've read this far, thank you. It means more than you know. 

[somewhere over the rainbow]

Hi,

POTS IS  a form of Dysautonomia. Dysautonomia is an umbrella term that describes a bunch symptoms and literally means dysfunction of the autonomic system. It includes a group of conditions, POTS being one. 

I, myself have POTS, and I'm not a Dr, but what you're describing sounds just like POTS. The test you had done is called the poor man's tilt table test, and that is actually how I was diagnosed. You should have been sitting with your feet on the ground, though. The important part is that they waited the appropriate amount of time in between blood pressures, (preferably it's best to take them manually, bc the automatic machines aren't always reliable, but that's not mandatory). I can attest to that from my own personal experience. Either way, the biggest factor is waiting the appropriate amount of time in between blood pressures.

They didn't perform the test right thiuy bc your feet should have been on the ground, sitting in an upright position, not with your feet out in front of you.

Some ppl will say the only day to diagnose is by a tilt table test. That is the golden standard. But the "poor man's tilt table" test is just as reliable and accepted if it's done properly.

You are being treated and managed as if you have POTS, the first things they start with usually are increasing fluids and salt intake, which usually is just salting everything you eat, I was never given an amount of salt. I was told to not worry about how much salt I had, which is usually the concern. Wearing compression garments helps with blood circulation, to minimize the pooling in legs and feet. The other thing that is usually added in from my experience, and talking with many others is a beta blocker.

With that being said, I ALWAYS tell ppl to follow your gut instinct. You have to be your own advocate, and of there's anything I've learned over the many years of my journey, it's that. If it were me in your shoes, I would get a second opinion. That's just my two cents, fwiw. Hope that helps.

 

 

[Pistol]

5 hours ago, Alicat_326 said:

The doctor told me I did not qualify for POTS because my blood pressure did not drop enough when i stood.

Hello @Alicat_326 - welcome to this forum! --- The above mentioned statement is actually a sign that the doctor does not understand POTS. In POTS the HR increases at least 30 BPM within the first 10 minutes of standing WITHOUT a drop in BP. If the BP drops it is called orthostatic hypotension - also a dysautonomia but not POTS. An increase in HR in response to a drop in BP is normal. 

I agree with what @somewhere over the rainbow has said. All of your symptoms and the fact that they started following a viral infection does sound like POTS. Salt and water increase and wearing compression garments are the proper treatments for POTS, and yes - often a beta blocker is the first med they prescribe. Here is a statement from the DI website regarding how much salt to take in: 

Increase Fluid and Salt Intake
It is often recommended to increase both fluid and salt intake in order to increase blood volume, which is typically low in POTS patients. This has proven to be particularly helpful in patients with blood pooling, hypovolemia, or hypotension.² Except for the hyperadrenergic subtype of POTS, a fluid intake of approximately two liters and an intake of three to five grams of salt is typically recommended per day.³ Note that salt includes sodium and chloride. One gram of table salt contains approximately .393 grams (393 milligrams) of sodium. That means that five grams of salt contains approximately 1.965 grams (1965 milligrams) of sodium. This number can be useful when tracking salt in food with nutrition labels, which often list sodium content.

I would see another doc for a second opinion and proper testing. It is correct - if done right a poor man's tilt table test can be enough to diagnose POTS, but it has to be interpreted  correctly. Having said that - you are very lucky to have found an urgent care physician that actually knows about POTS! 

[Alicat_326]

Thank you both for your responses so much. This was so helpful and reassuring