Alison

Thanks Kooky for your hugs and for the name of the specialist. Did the specialist help you at all? I don't really know whether to push for a referral - I'm going to see how I do for a while with lifestyle changes I think. The Pots is not affecting me physically very much - more cognitively, and that is a hard thing to measure - to know whether it is improving or not. Or getting worse.

I raised the head of my head with planks by about 4 inches. After two weeks I was much worse, instead of occasional dizzy spells during the day It felt like life was one long dizzy spell, and I felt like I needed to lie down most of the day - I'm usually up and about, I work and do sport. Has anyone else experienced this? Somehow raising the head of the bed doesn't seem to make sense?

Has anyone else had a bone scan, and if so, how were your bones?

I'm wearing waist high sports compression tights, i feel so much better since I started wearing them, the brain fog has really decreased, I'm finding exercising easier too

Im assuming I probably have low blood volume. I'm wondering what the implications of ths are for a whole load of issues: Bones - does this mean that my blood may not be feeding my bones enough calcium and other nutrients? I'm hoping to have a bone scan - not sure if my GP will agree it s necessary Thyroxine - I read quite a lot about low thyroid before I was diagnosed as my symptoms seemed similar, my blood levels relating to ths were okay, maybe a bit low, my doctor said they were fine. I read that some people who have slightly low levels really improve if they take thyroxine - maybe a Pots person would? If we haven't got enough blood, maybe the usual blood tests aren't really meaningful? Iron, vitamin D etc - maybe there are a whole load of things that we'd benefit from taking a lot of? General nutrition - does the low blood volume mean that our bodies are a bit starved generally? Being new to the form I don't know if this as been discussed before - I have had a browse in previous topics.

Did the doctor just measure you BP, or did he measure the heart rate too?

Sorry to hear you are having a rough time Andy and , I'm so sorry to hear you have been told it is terminal - that must have been a hard thing to hear the doctor say. I hope the catheter works out - getting up ten times in the night must be making you and your wife exhausted.

I wasn't sure how much to push my GP for a referral to a specialist. I'm feeling a lot better with compression tight, but already am a bit fed up of wearing them! I've also just started a high dose of vitamin d and that seems to have hugely reduced the dizziness. I'm planning to take a break from work, when I do that will give me more time to think about it all. I was wondering if it matters why I have Pots? I've been looking at my elbows tring to figure out if they go out more than other people's - whether I am hyper mobile? Thrre's no sign of it elsewhere in my body except I've noticed at yoga classes that when we squat I find it easy, and hang a lot lower than everyone else - I see most of the people in the class finding it an agonising position. I'm in Hertfordshire, so could see a doctor in London. lyla you are right, it is hard to accept that I'm not 100% healthy - though I did know it really beforehand anyway - perhaps the doctors had managed to convince me it was all in my head.

I'm so glad I found this forum. I'm newly diagnosed, it's incredible finding out there are people out there feeling similarly to me. I first went to my GP about five years ago at the age of 39 and said I was feeling lightheaded, it sounded daft! She ran some blood tests and they were all ok so that was that. I went back last year, and said the same story, and also that my memory seemed really bad, I could hardly bear to admit that, I had the usual round of blood tests, and was told all was ok. I was asked if I was anxious person, and I started to wonder myself if it was just health anxiety. I feel worse in the winter, don't know why? come November last year I was feeling was than ever, and having a sort of dizzy feeling in my head about ten times a day. And my lack of memory and concentration were scaring me. I saw a different G.P. who had thankfully recently read an article about Pots. She did a version of the tilt table test and sent me away to read about it on the Internet saying 'I don't think there any specialists'. I fit the category of tall, skinny and am a runner. I think I'm a runner because of the Pots - all my adult life I have known that I only feel well when I exercise - only now it doesn't seem to be working - the exercise isn't keeping me well. It's wonderful to have a diagnosis, but I'm finding that when I think about it my eyes well up. I had plans for my future - am I going to be able to them? Am I going to continue to get worse? Cognitively I have been feeling so bad I'm not sure if I'm fit for work. I keep telling myself to get a grip, especially as I can see others are clearly a lot more affected by Pots than me, I have three children and work parttime, Pots has barely affected me up till now, though I think I have always had it - I remember feeling lightheaded after a long walk when I was 21, at the time I thought that perhaps I didn't breathe properly. And now I realise why I have always felt the need to sit down, perhaps it also explains the worsening continence, and those restless legs that I had when I was pregnant. And it explains why I've never really been on top of my household chores, I always felt compelled to sit down after a bit and I truly believed I was lazy. I have so much that I'd like to discuss, but don't want to do a really long post - I'll save the rest for next time. Just wanted to introduce myself, and say thanks to those who run this forum.