jodie watson

Hi Mighty Mouse I asked for Australian patients as I don't know of any others with dysautonomia in Australia and was wanting to make contact with them and Midodrine is not approved by the TGA here for use and you have to get special permission to use it; so I was wanting to know of other Australians who had got access to it and hopefully to find out who prescribed it for them etc. Of course I am interested in all the members experience with the drug and thank you so much for your information. Just wanted to clear up why I asked for Australian patients who had tried it. I am looking forward to talking to all the patients on the forum no matter where they are from. We seem like a relatively small group even worldwide. Kind Regards Jodie

Hi to Everyone I am new to the forum. I am an Australian mother of 4 (daughters) and I have had orthostatic issues all my life since my early teens. They didn't know what it was then of course. I was diagnosed with Orthostatic Hypotension 8 years ago after the premature birth of my third daughter. I was up and down since then and have had a particularly bad relapse which doesn't seem to be getting any better; worse if anything!! I ended up in hospital in March last year and was diagnosed by a Cardiologist with POTS. I was prescribed Coralan (drug is Ivabradine) and it seemed to help for a short while and then stopped working, it was increased recently and my symptoms got so much worse after 3 months on the increased dose that I have been off it now for 2 weeks. The reason for the title of this post is to find out if any of you have or know about joint hypermobility. I have done some research of my own on the internet and there seems to be a lot of medical articles that point to a correlation between this and POTS. I am waiting to see a Dr in Australia in Melbourne which is a 3 hour flight from me, although I have spoken to him on the phone for about 45 mins. He is convinced from our initial conversation and answers to his questions on the phone that I have joint hypermobility syndrome and he believes it goes hand in hand with POTS. I will know more of course when I see him, but that may not be until the end of November at the earliest. So I guess the members on the forum would know about this if they have it themselves or perhaps have more information on this connection. This Dr believes that this joint hypermobility causes the veins to be stretchy and that they do the opposite of what they are supposed to do when we are upright, which is to constrict. He believes that this causes the blood vessels to dilate and stretch much more than they are supposed to as part of the effect of this hypermobility syndrome. Does any one who has both know about, or have been told this??? Look forward to your replies and help. I am glad I found this forum during my research into POTS and dysautonomia as it is wonderful to be able to talk to and question others who have this rare condition. Kind Regards Jodie

Hello and thank you for your reply "Endure". I do not live in Melbourne, I live in Northern NSW in the Byron Bay Hinterland. I am coming to Melbourne to see Dr O'Callaghan when I can get an appointment. He and Prof Esler are the only two doctors in Australia who specialise in dysautonomia's and Prof Esler is not taking new patients at the moment. Dr O'Callaghan works with Austin Health who are associated with the University of Melbourne. I have been taking Coralan (Ivabradine is the drug) which was prescribed by my Cardiologist who I was put under after I ended up in hospital last year in March last year. It helped for a few months and then stopped working altogether and when I went back to see my Cardiologist he increased the dose. I have been on the increased dose for 3 months and all of my symptoms have gotten much worse. I have recently stopped taking it 2 weeks ago and I still have the orthostatic issues of course; yet I feel my body is coping better with out it. I felt that by slowing down my heart it was making it much harder for my body to cope, as of course I realise now that my heart is compensating for what happens when I stand up!! I have done a lot of research and as fascinating as it is to the medical profession and to those of us who like to understand and learn for ourselves it certainly isn't easy to live with!!! I hope that Prof Esler has been able to give you some relief from your symptoms, though it sounds that your case is indeed rare and very reactive. I hope that you have good support from your parents, as it is hard if you don't. I am lucky to have support from family both extended and immediate. I have had problems on and off all my life since I was a teenager so, my family have always known there was something wrong, and weren't terribly surprised after the birth of my third daughter when things went particularly hay wire and haven't settled down fully since. That was 8 years ago. Even though people are supportive, they also get frustrated by the huge impact this disorder has on our lives and subsequently theirs as well. I at least know that someone else who has the same condition even though we all vary in symptoms and causes etc understands what it is like to live day to day with this. You would also understand how frustrating it is to not know day to day or even hour to hour how you will be feeling and need to just accept whatever comes and know that you have no real control over it. I thought I was a patient person before, I had no idea what real endurance and strength of character meant until living with this condition. It has made me appreciate the small things we all take for granted and to be accepting of the things we cannot change. Any how sorry for rambling on, I guess it is good to talk to someone who knows what you are talking about as I said before. Jodie

I am an Australian mother of four and I am new to the Forum. I have been diagnosed with POTS and previously, 9 years ago with Orthostatic Hypotension. I am interested in finding any other Australians with dysautonomia's and also if any of them have had any success with Dr O'Callaghan in Melbourne? I am going to be seeing him as soon as I can get an appointment and have spoken to him on the phone. I am keen to try Midodrine and would like to know if any other Australians on the forum have tried it? I was also wondering if anyone else has been previously diagnosed with Orthostatic Hypotension which has changed to Postural Orthostatic Tachycardia Syndrome? I am very thankful for finding this forum as it is very helpful to be able to read and talk to others who experience this condition with it's bewildering array of symptoms! I am particularly bad at the moment and needing information from others in Australia who have this condition as no one seems to have heard of it, either in the general public or in the medical arena. Look forward to hearing from some Australian patients Jodie