new diagnosis, is it POTS?

[joanne.b]

So my daughter is 16, since last year she has fainted and lost consciousness 3 times. Very short, few seconds. She was seen by a cardiologist and neurologist. Finally they said it was Neurocardiogenic syncope and she should stay hydrated and salt... He recommended alpha lipoic acid if the salt and hydration didnt work She is dizzy all the time when she is up, not while seated or while laying down.  Her PCP says its nothing to worry about, nothing to do. She has an upcoming Neuro follow up appt in November. What questions should i ask, and what testing should she have? Thanks! 

[MomtoGiuliana]

Hi joanne

Here is info on how POTS is diagnosed that may be helpful:

Has she had a tilt table test?

One thing I have seen members do which may be helpful is keep track of your daughter's blood pressure and hr sitting and standing once or twice a day over several days or weeks to get an idea of any trends.  Sharing this with a doctor may be helpful.

Writing down all symptoms in advance may be helpful too.  It's easy to forget things once in the doctor's office.

[vepa]

NCS is a different form of dysautonomia that can be very similar to POTS, so I wouldn't pigeon-hole yourself into trying to get a POTS diagnosis. It's my understanding that NCS is more commonly diagnosed with actual fainting, because most POTS patients dont actually faint. But the initial treatment of salt and hydration is the same for both. And in fact, some doctors consider them all to be one disorder with multiple names.

My doctors still can't agree whether or not I have NMH and POTS, or just NMH. My heart rate jumps by about 60, but my blood pressure also drops by about 40 upon standing, and some doctors say the heart rate is irrelevant if the blood pressure drops and others say you can have both diagnoses. And despite reading a lot of medical literature and asking doctors a lot of questions, I'm STILL confused as to whether NMH and NCS are the same. Some people say yes, some say no. But in the end it doesn't really matter because with all of these disorders, they focus on treating the symptoms. So the medications overlap, the lifestyle changes overlap, etc. If her heart rate is too high, they prescribe meds for that. If her blood pressure is too low, they address that. Etc. The label of the diagnosis doesn't seem to be super relevant. Dysautonomia is dysautonomia. POTS is just the most common type.

I'd say definitely find a doctor familiar with dysautonomia so they can go beyond just saying to drink water and eat salt and instead consider other treatments, but don't drive yourself crazy about which type of dysautonomia they label her with. A good doctor will give adequate treatment regardless.