Misdiagnosis?

[Jasmineak]

Ever since I can remember (5) I've had these symptoms as though I'm about to faint but I never actually black out. If I'm stood up too long I feel dizzy, sick, sleepy, my neck and my ankles ache, I get hot and sweaty, I got confused and find it hard to speak, my feet and ankles go purple and cold (these are the basics) When I eat I feel extremely sick and sometimes I am sick. I can't do much exercise because when I do I get hot and then dizzy and all my symptoms come on. I then go into a two and a half week period in which I have all my symptoms if I move my head too fast or stand up etc. A couple of weeks before I go into this stage I can't lift my head up to the sky as I lose my vision and it feels like the blood is draining from my head and it makes me dizzy. I've been told I have low blood pressure as I had a tilt test and my blood pressure dropped to 76/16 so I was told I tested positive for reflex syncope however I've never blacked out or fainted. Is this the right diagnosis?

[Hidden]

Struggling with these unpleasant symptoms since you were 5 years old is a long time and can appreciate your frustration. Some of these symptoms do suggest reflex syncope (vasovagal syncope) for which you have a diagnosis but discolouration of your feet and ankles are symptoms linked to PoTS. We would suggest you ask for a referral to a consultant who understands PoTS for a second opinion. Unfortunately there are few specialists in the UK but if you need guidance please email [e-mail] and we will endeavour to help.

[Boombiddy in reply to Hidden]

Hiya Jasmineak,

It sounds like you have been having a really rubbish time!

Please don't be disheartened if you have not had a lot of answers to your post, as the first answer, from STARS UK, is the best, the one you would find most helpful.

So although I cannot responsibly answer your question, I just wanted to say it really really is worth speaking to STARS if you haven't already. They would be knowledgeable and supportive.

I do hope you get thoroughly sorted, and they are a good place to start.

Best wishes from Boombiddy.