BeforeTheMorning

Glad you finally have a diagnosis. And I hope the doctors will now really be able to help your daughter.

Best Wishes,

Lyla

Haha, that's great! Although probably we would all end up with purple heads from blood pooling the other way!!! How about a holiday camp for Potsies in outer space with zero gravity guaranteed!

I think it would be good to redo the test, because Potsies can be so different on different days, hopefully if this is her second time she will be less anxious about it. I know sometimes you can get more anxious the first time you have a test because you have no idea what to expect. It must be really hard for her going through all the testing etc at such a young age. I really hope that everything goes well and you can find great help for her.

Best Wishes,

Lyla

I get bad pooling in my feet and lower legs, and I tried knee highs. They seemed to help my feet, but the blood started pooling in my knees and thighs instead, so they probably didn't really help overall. That said, I'm sure it's going to be different for everyone, so there's no harm in trying! I love the fact that the knee highs come in loads of different patterns as well, I wonder why those companies don't do thigh highs too, I'd definitely be buying from them!

AnaBanana, Thank you! And lets just hope we both get some answers at our appointments. That's funny about the fine line between hot and cold, I get that as well. On a recent warm day, I was finding things hard because of the warmth, and someone said to me "Hang on, just a few days ago you were saying it was too cold for you" I said "Yeah, there's a very fine line right between the two that's just right"! I think POTS can be a very fussy illness!!!

Hi,

I also have an appointment with an EDS doc soon, and I'll be interested to see other people's suggestions too.

One thing that I think is good, is to wear light layers, so that you can take things off in the hospital, as they're almost always overheated, and if I get too hot then I'll get more dizzy and lightheaded and that really doesn't help when you're trying to communicate with someone!

I hope you're appointment goes well.

Best Wishes,

Lyla

Ha ha AllAboutPeace and Chaos. It's kind of funny that people can believe you're feeling great when really you just feel really ill. The other day when I was wandering around feeling worse than usual, someone kindly commented on how great it was to see me with so much energy! This really is an invisible illness!!!!

Blue you're amazing to keep putting that smile on your face when things are tough, keep it up, you're being an inspiration to the rest of us to keep putting that smile back on!

Best Wishes,

Lyla

Congratulations on the arrival of your baby boy!

Recently I've kept thinking that my phone is going off in my pocket because I can feel the vibrations. It's really strange.

Hi,

Welcome to the forum!

Yes, you can definitely have POTS without passing out on your test. I'm sorry I don't really know answers to your other questions, but I'm sure other people on here will chime in with good advice. It's good that you've found a doctor who knows about POTS and I hope you do well on the florinef.

Best Wishes,

Lyla

Sorry you're going through this. Thinking of you.

Best Wishes

Lyla

Sorry to hear about your knee.I totally get what you mean about being pleasantly surprised when the first test comes back abnormal! I guess it's because potsies often have to go through SO MUCH testing before getting the correct diagnosis. Hoping you recover soon.

Best Wishes,

Lyla

Hi, Welcome to the forum!

I find that when I have to sit for a long time, I will get a strange sensation in my chest, almost like an empty feeling? And I'll be gasping for breath, just sitting and I'll feel really bad and want to lie down. Mostly it will be when I'm in a meeting or something and sitting still for ages, and I just have to try and push through. It's really unpleasant though. Maybe you should talk about it with your doctor.

Hi,

I also found biking harder on my body than walking, and I was using a recumbent bike. I can definitely keep going for longer without crashing if I'm walking rather than biking. Maybe partly for me it's the fact that I can make myself walk slow, but I tend to get carried away and go slightly faster when biking. Probably it is also to do with the fact that when you walk your legs are pumping the blood back up better. Anyway, for whatever reason, I definitely find walking a lot easier.

Lyla

I know that some compression socks you have to carefully measure your leg in various different places to make sure you get the right size so you don't damage your leg. But I don't seem to fit any of the sizes, my feet will be one size and my legs another. Does it matter at all if I have a slightly wrong size if the stockings are only 15-20 mmHg?

Thank you,

Lyla

Thanks for the suggestions Katybug. I don't think I've tried Bonine yet so maybe I should try that this time. And that sounds like a great idea about the snacking.

Thanks again,

Lyla

So glad you've finally got a diagnosis, though of course I'm sorry you're going through this. It's great when you finally have a place to really start from.

Best Wishes,

Lyla

Hi Sheena,

Welcome to the forum! It's nice to 'meet' you. Though I'm sorry you have reason to be here. Sorry I don't really have any suggestions, I just wanted to say that I feel for you and I hope that you will be able to get the help you need when you see the specialist in July. You've asked some great questions, and I'm looking forward to seeing others answers.

Wishing you all the best,

Lyla

Since I developed POTS I've found travelling really hard. I feel so sick whilst travelling and I get extremely dizzy afterwards, like lightheaded and as if the ground is moving around beneath me. I have almost a whole day of travelling soon, and I wondered if anyone has any good suggestions for things that help. I've tried a couple of over the counter drugs, (I can't remember what they're called right now) but they didn't help at all. I'd really appreciate any suggestions.

Thanks,

Lyla

Hi,

Nice to meet you. I was diagnosed with POTS last year and I'm now on medication. But there are also other things that help with symptoms like drinking plenty of fluids, I try to drink 3 litres every day. Some people also say to try drinking around 500ml before you get out of bed in the morning as that can help your heart rate not to climb quite as high. Compression socks can help if you have bad pooling in your legs, they help to pump the blood back up so your heart doesn't need to go so fast. I find that limiting my refined sugar/carbohydrate intake can help me not to feel so bad as well. Hot environments can make me feel really bad, so I try to avoid them too.

There are so many great people on this forum so probably someone else will come up with something a bit more helpful.

Wishing you the best,

Lyla

I agree with dkd, I think it's good that they want to do the testing, so that maybe they can discuss the results with her when they see her afterwards. This was how it happened for me. I had a load of tests before I actually saw my doctor, which was great because we could discuss the results together when I saw him. He has a really long waiting list, so if I'd had to wait and have all my tests after seeing him, I would then have had to wait for ages to see him again and discuss the results. So I think it's a good thing. I hope you can find help for your daughter soon.

Best Wishes,

Lyla

I also get quick blips, and I wasn't really sure how to describe them. I think that dkd has pretty much nailed it though. It is a kind of weightless, not quite in tune with your surroundings, feeling.

Wow, that is so exciting for POTSies! I sure hope they can find a cure.

Thanks for posting this.

I like the GU Brew Tablets because they are only sweetened with natural sweetener and they don't have any artificial other stuff.