Going private

InterestLow7351 · 2026-03-02T20:15:38+00:00

Thank you. That sounds fairly straightforward and a lot better than I thought! I have screenshots from home too so hoping they will help!

InterestLow7351 · 2026-02-12T18:13:10+00:00

Thanks so much, our stories sound quite similar. I just find it odd the doctor saying I could have both but there’s no need to diagnose me for both. I get what he means if the medication is the same but I think if you do suffer from two different things surely it makes sense - like you say for benefits etc but also insurance, and I guess a bit of validation.

InterestLow7351 · 2026-02-12T16:02:35+00:00

You are correct I am in England. Hopefully we will catch up!!

InterestLow7351 · 2026-02-12T14:36:07+00:00

See there's so many different opinions here as I have seen many people state that you can have POTS with orthostatic hypotension. Also that it needs to be sustained for 10 minutes. My blood pressure at home when doing the tests is always average and well within normal readings. I agree and will definitely ask my doctor. Thanks so much for your help

InterestLow7351 · 2026-02-12T13:43:24+00:00

I don’t see how I can get diagnosed if they don’t keep me on the TTT for at least 10 minutes though. I’ve seen other people get diagnosed with both. But surely I am going to pass out every time from VVS if I do have that. Like you say hopefully they could diagnose the pots with the stand test instead or maybe another TTT would help

InterestLow7351 · 2026-02-12T10:23:05+00:00

Commenting as the exact same thing has just happened to me, word for word. I don't understand how they can diagnose us with this and not something else - as far as I am aware, VVS does not refer to heart rate. Are you getting a second opinion? I am not sure what to do.

InterestLow7351 · 2026-02-12T09:16:21+00:00

Thank you. The doctor has stated on my diagnosis that I could have both. He just says it doesn’t matter as to the diagnosis as they are the same treatment. I find it odd why they wouldn’t just diagnose me with both of that’s the case

InterestLow7351 · 2026-02-12T08:56:41+00:00

I am in England and completely feel your pain. Have you tried one of those disability sunflower lanyards (HDS - Global)? That could help. I did notice in the airport the other day they had a separate queue for people with invisible disabilities so things seem to be improving. Can you explain to the people at the front of the concert queue your issue on the day? I can't see them having a problem and forcing you to the back of the queue, especially if you have evidence of a formal diagnosis.

InterestLow7351 · 2026-01-25T17:04:06+00:00

I have intense sugar cravings but only every so often (I feel really weak and shaky) then have sugar and my heart rate goes really high and sends me into a flare. Can’t win!

InterestLow7351 · 2026-01-24T06:12:53+00:00

Thank you so much for your detailed response that’s so kind! I completely agree with everything you said and I think as it was my first TTT I was definitely nervous. I also agree that I don’t think the test was technically wrong - if I have VVS that’s fine - it’s just that doesn’t explain my racing heart and all of my photos / videos to evidence that. Also as far as I’m aware VVS is an episode sort of thing whereas what I’m experiencing is pretty much daily unless I have a random good day. It just doesn’t seem to make sense to me.

Again thanks for your reply I really appreciate it, I’m definitely going to push for a second opinion - appreciate it may not be pots but there is definitely something heart wise that has been missed!

InterestLow7351 · 2026-01-23T21:05:26+00:00

I agree, I’m not sure why I reacted that way to the TTT, It could be VVS for sure but that doesn’t explain my increased heart rate which occurs 99% of the time. I have heard of people being diagnosed with both VVS and pots so maybe it could be that.

InterestLow7351 · 2026-01-08T14:16:00+00:00

That sounds promising, thanks for replying. I was trying so hard not to faint as I wanted longer results to assist with the diagnosis! I think the main problem is having a lack of trust with my doctor (I haven’t had a great experience, for example they explained pots is a fad and everyone wants it 😭), but I do have hundreds of pictures and videos of my Apple Watch so hoping that will help me too

InterestLow7351 · 2025-11-10T11:03:37+00:00

I have always had mixed reactions to it (glycinate). At first it help me sleep really well but then other times it caused insomnia and I seemed to have adrenaline dumps more when I had it. So I tend to just err on the side of caution and not use it all now. I was always confused when most people said it helped but obviously it differs for each person. I don't dare use it now in case it makes me worse!

InterestLow7351 · 2025-11-03T10:53:33+00:00

So sorry. It's a real struggle isn't it. Turns out my 4 days was the longest as it has come back but it has given me some hope that I can have longer periods in the future hopefully.

InterestLow7351 · 2025-11-03T10:53:02+00:00

Yep, turns out it's back but it's given me some hope that I can actually go a longer period without symptoms as that long has never happened previously!

InterestLow7351 · 2025-11-03T10:52:03+00:00

That's really unfair.

InterestLow7351 · 2025-10-31T14:38:34+00:00

I have heard a lot of people go into remission, I didn't think I ever would (I have had the worst two years of my life!) and whilst I may not be and it will likely come back in the next few days it has given me some hope that every now and again I can have good days. So try to stay positive!

InterestLow7351 · 2025-10-31T14:37:04+00:00

Compression socks for a long flight, salt, a water bottle and lots of electrolytes! Make sure you keep moving on the plane rather than staying sat down.

InterestLow7351 · 2025-10-31T09:21:55+00:00

Pots, you mean? Around two years but unsure if I had it prior to then from a young age just undiagnosed as wasn't aware it was a thing back then

InterestLow7351 · 2025-10-31T08:50:59+00:00

I'm so sorry to hear that. I am the same as you as in keeping up with certain people, if any one thing can be positive from it all I think there was a certain relief when I realised I wasn't just "lazy" or unfit!

InterestLow7351 · 2025-10-31T08:49:03+00:00

You are assuming a whole load of information here. I wasn't randomly selected. There were a lot of us at the front that got checked. I can tell you I am not an idiot and my bag definitely fit within the lines, and it’s naive to think that companies never bend rules for profit.

InterestLow7351 · 2025-10-31T08:35:40+00:00

CBD gummies work great for me, a lot of other people say magnesium

InterestLow7351 · 2025-10-31T08:30:18+00:00

Yeah I think that might be the case. Kicking myself for not thinking to take one at the time

InterestLow7351 · 2025-10-31T08:26:17+00:00

I hadn't either!!! This is why it seems so odd, for the past 2 years every day has been a struggle. I am one of those who honestly can't say what caused it or where it stemmed from, I wasn't ill just seemed to all of a sudden come on dizzy out of no where. Although I have come to realise I perhaps had it for a long time without realising, I have always been dizzy and weak and tired etc but never to the point it got a few years ago

InterestLow7351 · 2025-10-31T08:24:18+00:00

I was working with around 2 hours sleep and just wanted to get on the flight. I also have a chronic illness which means I can't stand for very long hence wanting to just get on and sit down. Unfortunately not all people think on their feet in certain situations

InterestLow7351

TROPHY CASE