Is this POTS and is my doctor being unreasonable?

[Healthposter]

DD12 experiences grey outs regularly, edges of her vision go black and she needs to sit down before she faints. She has fully fainted 2 or 3 times.

We did a poor man's tilt test at home which showed spikes from 60bpm at rest to 110bpm after standing but these spikes didn't last for more than 30 seconds. Her heart rate generally trended around 90-95 after standing. She is incredibly tall for her age and hit puberty very early so I'm wondering whether the benchmark should actually be the adult measurements rather than kids?

The GP did a slap dash attempt at a poor man's tilt test in the surgery and buggered it up in my opinion. DD had only just sat down so it wasn't a proper resting measurement and then the doc got distracted talking to me so didn't take the standing measurements at the proper intervals. Just took a couple of readings and that was that. It didn't show much of a sustained spike.

Now I'm doubting myself because DD managed to go on a lot of spinny rides at the fair without too much trouble (although she did very briefly black out on the waltzers, but then that's possible with the G-forces involved I think?)

Here's the part that didn't sit right with me. The GP said something along the lines of "it could be POTS, but really you shouldn't think too much about these things because the symptoms are always worse if you focus on them".

AIBU to think that the GP should come to a decision one way or another about whether it's POTS or not? It doesn't seem right to tell a patient to try and ignore their potential condition because "we can't treat it anyway".

I'm happy to be told it's not POTS but it doesn't seem very professional to mention a condition and then shrug and be indecisive about it.

Are there any POTSies out there who can share their insights?

Is she hyper mobile?
the first action is to smaller meals regularly over a couple of larger meals, drink more water and add more salt.

try these and see if it makes a difference

And get her to tense her legs a few times before standing.

I should add she had an ECG and full bloods including fasting blood sugar and all clear.

@yakkity yes she is hypermobile to a degree. The physio scored her 5 out of 9 on the Beighton scale. Physio thinks it may be hypermobile spectrum disorder but she can't diagnose that, so that's another discussion to have with the GP. She definitely doesn't meet the criteria for Ehlers Danos so it may be a bit of a reach.

Both my girls fainted quite a bit in the early teenage years. They are both hypermobile (and officially diagnosed with EDS, it runs in our family unfortunately) . Nothing was done about it. As adults now, one has improved re fainting and it doesn't happen so often, but the other has severe POTS .. her heart rate goes from 40s (very low normally like her Dad) to nearly 200 and she has fainted just about everywhere you can think of (embarrassing for her as she's actually a doctor herself now!)
More salt than is healthy and plenty to drink... there is no magic answer other than that. It's horrible but not dangerous . My dh greys out very frequently too (same heart rate) and he's 63 and still healthy :)

While it sounds dismissive of the GP, he's right really..there is nothing much you can do, and it's probably best to be lighthearted about it.

Meh POTS everybody has it/had it, it’s similar to having pins and needles from sitting on your leg too long as a diagnosis.

people love a diagnosis/name for everyday ailments

GP is bang on, it will be as big a deal
as you make it/want it to be.

Why is the hyper mobile an issue with it? Just jumping on as my 13dd is the same can have high to low BP, gets v.bad head rush’s and has fainted a couple of times. Has very mobile hips (legs behind her head type thing), but is Audhd so struggles experiencing pain in a normal way. I’ve been giving her an iron supplement and just kept a watch n wait approach as getting any help from GP is a battle & with her high level of anxiety I didn’t want to worry her.

Even though it can’t be cured, there are many things you can do to ease the symptoms and it would be useful if your gp had discussed this with you. My Dd, for example,
wears compression socks
takes beta blockers
uses a shower chair
smaller meals, more salt and no alcohol
exercise - swimming and yoga
avoids taking the stairs

Fucks sake. You seriously think it’s like pins and needles?

Oooh this is interesting as I’ve never thought I have POTs but do get the blacking out thing, am hypermobile and do get spiky heart rates sometimes.

Unconnected, but I often crave salt so have bought some sea salt flakes that I have a pinch of when I get a craving and have been making an effort to drink more water, and now I think about it can’t remember the last time I lost vision (it was happening almost daily for years).

@AmIHumanOrAmIAYeti, you beat me to it.
@WeakAsIAm, maybe educate yourself on what POTS (a real, diagnosable medical condition) is before you post?

It could be Vasovagal syncopy? I have that, it causes random fainting and dizziness. There is still no real identification of the cause. Your vagus nerve gets irritated and you faint, but no one is quite sure why. You test for it by having a tilt table test (different to the tilt test you describe I think?) They strap you to a table, stand you up, then tip it back 45 degrees. If you faint (I go out like a light!) then you’ve got VVS. If it is that then meds can really help. I’m 100% fine on Midodrine with no side effects.
I also crave salt and have a very low bp in general.

I believe it's because people with the hypermobile disorders can experience fainting as well as anxiety and a bunch of other symptoms. DDs physio has suggested Hypermobile Spectrum Disorder as a diagnosis but theres also Ehlers Danos and a bunch of other connective tissue disorders that can cause fainting as one of the many symptoms.

My Ds now has PoTS (possibly as a result of being given ALL his teenage vaccinations again in one go as GP 'had lost notes & consultant recommends'
He is also ASD, hypermobile & had a lot of gastric issues as a baby.

For him, it is not 'pins & needles'. He is totally exhausted, air hungry, syncope, appalling burping/digestion issues, blood pooling in legs/feet, arms/hands, brain fog, intolerance to hot/cold temps/ deconditioning due to inability to exercise. Can't eat sugar, carbs, chocolate, coffee, onions etc (obvs no alcohol either)
It is also very anxiety making & depressing to feel so ill as a young person.

He was diagnosed by a Cardiologist, post heart failure (now ok but POTS)
There has been a surge of heart issues in young people following covid (some say the disease, some say the vaccs, I've heard Consultants say both)
There has also been a surge in Pots as a result of Long Covid (according to my GP & Ds Cardiolgist)/ overstress of the immune system in young people.

@siliconcover with my Dd glandular fever was the trigger,

Same for my sister.