BeforeTheMorning

POTS symptoms often vary so much from day to day, that it is possible to have a negative TTT and still have POTS. Maybe you could try doing a Poor Man's Tilt Test at home and see what results you get?

Thoughts are with you. Hope it's good news. Lyla

Hi, Welcome to the forum! It's nice to 'meet' you. It's great that you finally have a diagnosis, but I know that it can be really hard at times to accept that you are not a 'normal' healthy person. I got diagnosed with POTS this past December, after several years of symptoms. Andybonse is right, have you looked into the cause of your POTS? Mine is probably also caused by Ehlers Danlos, but I'm still waiting to see a specialist in that. Best Wishes, Lyla

Kham - I also find that when I'm concentrating hard on something it's like my body forgets to breathe, I'll suddenly realise that I'm not breathing and have to start myself off again.

Yes, I get this. Sometimes it's funny as my friends will think I've suddenly come up with a great idea or something, but no, I'm just breathing!

I'm sorry I don't know why it happens either. But I get out of breath for no apparent reason, sometimes when I'm just sitting doing nothing, or even when I'm lying down. Some days I'll just randomly gasp for air every now and then, and it's not like a voluntary thing, it's like I NEED that extra air!

Hi, A year or so back I felt nauseous all the time so I can relate. The thing that I found helped most was cutting out lactose, so only having lactose free milk, etc. Have you tried anything like that? Best Wishes, Lyla

Yay! I'm so glad you are feeling that bit better again. It sounds like you are seeing quite a lot of improvement for only your 12th adjustment out of 72! Hope you continue to improve. Lyla

I don't have any ideas, but I'm so sorry you are having such an awful time. Thoughts are with you, Lyla

When I had an Active Stand Test back in April last year I met the criteria for POTS but I was only told that it looked like I probably had POTS and I should drink more water, eat more salt, etc. I didn't get my official diagnosis until December (when I actually saw my doctor for the first time) after going through lots more testing. I think there are lots of things that can give you the symptoms of POTS and doctors often like to rule things out before giving a definite diagnosis. Did your doctor talk about doing any other tests? That's good that he's already prescribed a medication that he thinks may help you, I'm still waiting to be started on a medication that my cardiologist was thinking about after my Testing back in April! Hopefully that won't be too long now. Anyway, I know it is frustrating not to have an official diagnosis, but I hope that the medication will help you. Best Wishes, Lyla

I hope you have a good appointment, let us know how it goes. Hope the cardiologist will know about POTS and be able to help you. Best Wishes, Lyla

Hi, Sorry I can't answer your questions, but I just wanted to say welcome to the forum! I'm sure there are many other people on here who will be able to help you out with your questions. Best Wishes, Lyla

Wow, thanks for posting this! How do I get the whole article? Lyla

Hey, that's great that your treatment is helping, I hope you continue to do really well. Best Wishes, Lyla

Hi meme, Welcome to the forum! I hope you'll be able to get a diagnosis and help soon. Nice to meet you, Lyla

My cardiologist suggested that I have a look on amazon at compression clothing because he though it might be helpful for me. However he didn't say what kind of compression clothing or what level of compression would be best, so I'm kind of in a quandary as to what to get! Has anyone had any luck with things like sports compression socks? Or are the only things that will help a Potsie the extremely firm compression waist high things? I expect these questions have all been asked before, so sorry about that. But thanks in advance for any help, Lyla

Hi, Welcome to the forum! Many of those symptoms sound very familiar to me and probably to most of the other people on this forum as well! I'm sorry you're having a hard time with your docs. If you suspect POTS have you or your doctor tried doing a poor mans tilt test? Lyla

I get headaches like you are describing where it aches right down into my teeth and jaw. A while back my head ached like that for pretty much two weeks straight. I don't know what causes it but I'd be interested to know if anyone else does?

Hi Becia, I don't really have any suggestions other than waiting it out with rest and fluids. ( And yeah I know that's probably not very helpful, sorry. ) I just wanted to say I'm so sorry you're feeling really bad and I hope you get through this rough patch quickly. Best Wishes, Lyla

I'm not on any meds at the moment. I'm currently increasing fluids and salt, and I'm planning to start exercising next week, as soon as I've got over this cold. My New Year resolution will have to be to stick with an exercise plan! That's great that you've seen a lot of improvement, I hope you continue to get better. Lyla

I often feel a lot worse after eating chocolate. Chocolate does have theobromine in it, which can speed up heart rate and dilates blood vessels, so maybe that's why some Potsies can't handle it?

Wow I can't believe no one's done this yet either! I'm glad someone is going to be researching this soon. Thanks, Lyla

Wow, how great to have found your primary cause is something that can be treated! That's fantastic! I hope your treatment goes really well and you are soon feeling better. Best Wishes, Lyla

Is POTS caused by EDS actually something gone wrong with the autonomic nervous system or is it simply because of stretchy blood vessels? I guess it probably has to be something more on top of just being too stretchy or everybody with EDS would have POTS, right? Does having EDS just make you more likely to get POTS? Sorry for the ramble, I'm kind of thinking aloud here! Lyla

andybonse, It is the dinet website that has changed, not the forum.