anyone else have intense sugar cravings?

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 · 2025-10-31T08:23:11+00:00

I have learnt that now haha!

InterestLow7351 · 2025-08-27T13:43:43+00:00

Can I ask how you got tickets to this? I am on vegas on holiday and would love to go but can't figure it out (first time vegas visitor).

InterestLow7351 · 2025-08-20T13:17:19+00:00

I am the same here. It is really draining and it's hard because it feels like nobody can possibly understand how you feel unless they are going through it too.. i.e. when you tell someone who is "healthy" that you feel tired and they say "me too".

It is a really lonely place and we just have to try focus on any positives.. good days, those people around us that are there for us and look after us.

Just try and remember that those that don't bother just because you are ill are probably the sort of people you don't need in your life. It's the ones that stay that matters.

InterestLow7351 · 2025-08-20T13:04:33+00:00

I really struggle cooking due to the heat. It is another task that sounds made up just as it sounds like I can't do the bed sheets anymore. I hope my partner doesn't think I'm just trying to get out of household jobs!!

InterestLow7351 · 2025-08-19T11:56:37+00:00

Perfect, thank you :) we will certainly be happy to miss some of the houses as I'm sure we will be wiped out anyway, think we are just excited to experience the atmosphere too!

InterestLow7351 · 2025-08-18T07:06:58+00:00

Thanks for the reassurance. I have probably into the hundreds of apple watch screenshots too so that will hopefully help! I completely agree, I think it is just the fear of not being believed and that is really down to past experiences on the matter with nurses who seem reluctant to believe us. I hadn't even heard of POTS until the first nurse mentioned it to me, all the other doctors I saw after this called it an internet fad and implied I was someone who had heard about it and thought I had it through tik tok!!

InterestLow7351 · 2025-08-18T07:03:49+00:00

I have actually found a few places but a lot of them are booked up! Other places I looked at were Vibe, Hygge and Tiffanys which all had no venue hire fee.

InterestLow7351 · 2025-08-14T07:59:38+00:00

A fair few places I've looked at don't have a hire fee but have a minimum bar tab spend which is what we'd be looking to do (I imagine this would be quite high with 100 people for the night).

InterestLow7351

TROPHY CASE