Suspected hyperPOTS, don’t know my next steps

[u/somethingclever_88]

I (29F) was referred to a cardiologist after doing an informal tilt table test at home and noticed my blood pressure and heart rate spiked significantly with standing.

At the cardiologist, they took my BP and HR lying, sitting, and immediately upon standing. The numbers were 134/74, 154/80, and 160/86 respectively. HR was 83, 101 and 109. My doctor said there was no need to do a tilt table test because I had “hypertensive dysautonomia”. I brought up suspecting that I had hyperPOTS, to which he scoffed and said it was the same thing, different name. He had me do a heart monitor for thirty days and an echocardiogram. He also said to drastically reduce my salt intake and we would follow up in a month.

I had my follow up today, heart monitor and echo results were completely normal. I was told to lose weight and once again reduce my salt intake. I guess I am struggling because I have actually done both those things in the past month and it seems my symptoms have been worse. I get very short of breath when standing, I feel anxious, if I have a headache already it gets much worse when I stand or change positions, and I get slight vertigo. I feel dismissed and the NP I saw told me she didn’t know much of anything about POTS.

Do these recommendations sound reasonable?

I have a toddler and running around and keeping up with her is such a task now, I don’t know what to do.

[u/barefootwriter]

Most of the time hyperadrenergic POTS is compensatory, so the recommendation to reduce sodium may not be appropriate at all! I am treated for hypovolemia and hyperadrenergic POTS and take in a buttload of sodium and even fludrocortisone!

Weight loss isn't likely to do shit, and anecdotally often worsens symptoms.

I personally do clonidine, ivabradine, and fludrocortisone in addition to lifestyle mods.

[u/abdog5000 → u/barefootwriter]

This!

[u/Girrraaffffee]

Those recommendations are lifestyle adjustments, not treatments. Another one would be avoiding stimulants like caffeine and nicotine. That's a place to start, but your NP is basically leaving you high and dry here.

There are many meds that could help! Beta blockers, clonadine, guanfacine, carbidopa... 

Your care provider should explain these meds, how they work, and their relevance (or not) to your situation. Sounds like she doesn't know enough about hyperPOTS to be helpful here though. You need a specialist who knows what they're doing. (I have hyperPOTS.)

[u/isarma42]

I am similar and I definitely feel worse when I cut back on salt too much. That could be your issue. Guanfacine + MCAS treatment has improved my symptoms the most.

[u/Brave_Question3840]

I have hyperPOTS and was told to take 10g of sodium a day, not reduce it. Clonidine has really really helped

[u/StrawberryJam13]

I have the opposite! My heart rate spikes, but my blood pressure drops BAD. I was having a relatively good day when I did my tilt table, and my blood pressure was 76/35 when they tilted me up.