Hi! I'm new here, I haven't officially ben diagnosed with POTS but I am currently having investigations. I'm struggling so much with the symptoms and don't know what to do. I've been ill since I was 15 years old, the docs thought I had ME because they couldn't find anything specific wrong with me. I'm now 37 and am still no better. I recently found out I am hypermobile, but the doctor was reluctant to call it joint hypermobility syndrome (even though I meet the diagnostic criteria) because it wouldn't change his treatment. 7 weeks ago I was admitted to hospital because I had severe lower abdominal pain, UTI symptoms and I kept going weak and falling over. The hospital were pretty cluless, did a few tests and said there was nothing wrong. They took my blood pressure laying and standing. The doc said my results were normal but my pulse would go up 20-25 beats per minute every time. It went over 30 beats per minute on 2 occasions (first thing in the morning). I saw a cardiologist who was a bit cluless. She just said they would do a tilt table test as an out patient appointment. I had the test 2 weeks ago. At first they said they couldn't do it because I use a wheelchair and I can't stand for more than a few minutes but I said I would try and I lasted just over 10 minutes. They wouldn't tell me the results and said they would get the doctor to review them. I've been ill for the past 7 weeks and my symptoms are getting worse. I've gone from being able to walk around my home with a walking stick to barely being able to go 5 yards before I go dizzy and collapse. I still haven't heard from the hospital and don't know when I will. I don't know which cardiologist is going to review my results so I can't even call and find out. I've been taking my pulse and blood pressure at home and I have a pulse increase of over 30 beats per minute every time I stand up. Sometimes my blood pressure falls, sometimes it stays the same. I don't know what to do. Is it worth going back to my GP or should I just sit it out and wait for my results? I'm just struggling so much and don't know how to look after myself. Any suggestions? Clair
