amy54

Hi Minnie, I'm in a rush this morning, so can't give you a proper welcome. But I saw your question about Melbourne doctors and knew I could help with info, so... There's a place called the Baker Institute in Melbourne. They actually do research on POTS and are really knowledgeable about it. They have heaps of POTS patients. Professor Esler, or one of the others involved in the study, are the ones to look for. Just ring the Baker Institute, and ask for Professor Esler or one of his cohorts. Amy

Hi I thought I'd add my bit to this post because exercise has made a HUGE difference for me. It was suggested to me, too, that leg strengthening will help the blood not pool as much in my legs. I was pretty, no very, sceptical, particularly as my legs were of at least average strength to begin with (don't ask me why - it's not as if I could use them much). I did resistance training - weight training - just for my legs. If you can find a gym or physio you can ask for exercises that will just strengthen your legs. Lots of these can be done sitting or even lying down! I'm talking leg presses etc. against free or pin weights. See, for me, and I'm guessing for a lot of us, walking isn't (or wasn't - I'm a lot better now) an option - standing makes me faint. Different doctors say different things - I know my specialist didn't want me to do any cardio, at least until I had started getting considerably better, as she thought it would worsen my POTS. I know this may sound weird, but I stuck with it, slowly going up the weights and it made the world of difference for me. I'd never seen the inside of a gym before and felt weird going in one, but I slowly, but continually, keep on improving - which made it all worthwhile. If Dr Lowe was suggesting you do leg strengthening, I think he might have meant doing some leg exercises designed by a physio or gym? I don't know, obviously, but I know that was what my doctor meant. Hope you find something that works Amy

Hi Janine, Just thought I'd add that the thing I've usually found best for coughs when I have the flu is eating dark chocolate. I've found it helps to prevent and ease the coughing. I think there's been some studies suggesting it may actually work better than cough meds. Anyway, I hope you're continuing to feel a bit better, Amy

Linda, I?ve been in tears reading these posts. I so recognise the feeling of utter disappointment that can come after something that was hoped could help/explain etc. our condition doesn?t work out. I have been bitterly disappointed at times, after some of my doctors appointments have crushed hopes I had of finding a particular improvement or solution for my condition. I?ve tried keeping those hopes at bay, so as not to go through those awful feelings again, but at a certain point I had to realise that the only thing worse than those feelings of disappointment is not to hope at all. As for feeling angry/upset with you ? I must admit that in the car on the way home after my disappointing doctors? appointments I tend to switch between crying and (totally unfairly) swearing at my doctors. Not that they aren?t great people, doctors, etc., that aren?t trying their hardest, they?re just the easiest people to associate with my condition (other than myself, and swearing at myself leads to depression, so?). After a bit I settle down, get over it, and make my next appointment to see the doctor. If I?d been in your position, and had a computer in front of me, I would have been very tempted to write something rather ?unpretty? (and unfair), as opposed to what I believed was a genuine unthinking slip-up on your behalf (don?t worry those reading, I keep myself far away from computers and the general public after those kind of appointments). Anyway, I feel for you, Amy

Hi Evie, What drs have you been seeing in Australia that are good, if you don't mind me asking. I'm in Australia - Sydney, and haven't been able to find any recommendations for drs that have done anything with POTS or orthostatic intolerance. Any help would be greatly appreciated. BTW - I have POTS (diagnosed at the start of this year) and CFS.