minnie17

I get this as well. I find that pumping my arms while I walk really helps this.

Sorry for the topic, but I am a little worried. For the past 18 months (even before I got diagnosed) I have been getting edema mainly in feet and legs and my weight fluctuates up to 4kgs in a couple of days. Now my urine has started to be foamy. I thought maybe this is just due to my high salt diet cause you can also see particles in my urine. Now I have started to worry that there might be something wrong with my kidney's (and maybe this could be the underlying cause of my problems..???). Does anyone else get foaming urine from their high salt diet? Thanks for your help and sorry again for the topic

I very hot too. Before all of this I used to be the kind of person who would have heaps and heaps of blankets on the bed to keep warm and would always wear long pajamas. Not now though. I am so hot all the time! Even now as it is getting colder in Australia I still don't want an extra blankets.

I have had constant sinus problems for for the last 6 months. Is this related to POTS/NCS?? I had thought it was seperate but now not sure as you all seem to have the same sinus issues as me..???

I do sometimes feel like a complete air head! I do find myself staring at people when I am out and not actually registering that I am doing it. I am really hoping that once I get my medications worked I might stop doing this. Also before I go to the shops I always make sure I am really hydrated and have more water with me.

Thank you all so much for your replies! I read them at the beginning of the weekend and had a much better weekend for it. I may even goes as far as to say that I enjoyed my weekend! To answer some of your questions I have had a stress test done on my heart which showed everything to be normal but it was that test that really was the trigger for my diagnosis as on the report it said that my resting heart rate was 90 beats per minute and being very athletic my resting BP had always been around 40 beats per minute. When I saw that I started to investigate the symtoms I was having including tachycardia in the search. About the salt and water loading. My cardio did recommend this. I find the water bit OK but I find when I have the salt as well I get really bad pressure behind my eyes. I don't know if this is high blood pressure or not..??? Has anyone had experience with this..?? The hard bit is that my symptoms feel better when I have the salt but then I get this pressure and pain behind my eyes, I don't know which one is worse? Also I am going to my GP this week so I am going to ask for a referral to the Baker Institute so I can get a second opinion. Thanks again for your support M

Hi Everyone, I am newly diagnosed after having had a TTT about 4 weeks ago. Luckily for me my symptoms only started about 4.5 months ago so to get a diagnosis in 4.5 months I think is actually pretty good compared to what I have read for some other people. And also I only had about 4 wrong diagnosis in that time (they told me I had benign proximal vertigo, a neck problem !!!, a virus, anaemia). It was only when I went to my GP telling her I thought I needed a TTT that she actually even thought it could be a blood pressure disorder and sent me for the test. Lucky I did my own research or I would still be undiagnosed! I have a couple of questions that I was hoping people could help me out with * Prior to actually feeling unwell (VERY light-headed, exercise intolerance, migraines, bad brain fog) I had been getting swelling in my ankles for about 1 year. I had just ignored it because although I am only 27 I have had varicous veins for about 10 years and thought that it was just my bad circulation. Does anyone else have this and what do they do about it? * Because I already had swollen ankles my cardiologist did not put me on Florinef. I have gone straight onto Dothep (Dothiepin Hydrochloride) which is a tricyclic antidepressant. He said he can get me Midodrine but it is not registered in Australia so your have apply for special access through the government. The Dothep has been OK but I do feel like I am not very alert on it and I am still getting headaches. Has anyone else been on this? * I was also wondering if there is anyone else out there that lives in Melbourne Australia and was wondering who they see for their condition? I have been seeing Dr Hamer at the Epworth in Richmond and Box Hill. * I also have polycystic ovarian syndrome (PCOS) that I see a naturopath for. She put me on herbs for my PCOS and I now essentially have no symptoms? Has any been to a naturopath for their POTS/NMH? And if yes what did they give you? I also have also thought about trying liquorice has anyone tried this? Thank you so much for reading all my questions I was so relieved when I found this website! Also I read a post about people being very active before they got sick. Just for the record I used to run about 4 miles a day and do 25mins of pilates stretching. I am trying to keep up the exercise, I still go out every morning but can't run as far and do more walking then running, but I have kep up with the pilates. Thanks