Hi Adam
You attached your question to an old, "dead" thread from two years ago. Please click the "Post a Question" button at the top of the page and copy/paste your question there so you can start a new thread of your own so people will see your question. Thank you!!
Hi my partner has been diagnosed with Dysautonomia and we are also living in Sunshine coast, I am hoping to find a Doc or specialist who knows about this illness, We live near Noosa and would appreciate any help or suggestions
thanks
Adam
Dear Rach,
Sorry to hear you've had a rough time with DYS, I have recently been dx with POTS and live on the Sunshine Coast, Qld. I am on a strict low FODMAP diet that helps immensly with the chronic IBS, it is a new diet from Sue Shepherd and I'm sure will help you. I have asked for the TTT at Brisbane Hospital, but their technician has left and there is quite a delay. In any case, it is not essential to diagnose the syndrome. The key is that dys is a syndrome often caused by other factors and although it is often difficult to find the cause, it may hold the key to successful treatment. So there is a list on dinet.org that may be worth looking at. I hope you find some answers xo
I hope you can get treatment that helps you with your complex medical issues! It must be frustrating not living close to a place that knows better how to treat dysautonomia! And you're welcome!
Well that gives me hope!!
Thanks so much, wonderful to have this forum... more answers here than in most of the hours of searching I have been doing. Thanks LivinginHope!!!
I don't have the slow emptying, though I've read there is medicine to speed motility out there. Sometimes I do get painful gas in my stomach and have to take some simethicone though. Have they checked your abdominal aorta since your dizziness increases with distention?
Yes! I distend within minutes of eating anything and then it can be hours before it all calms down, if it does. Sometimes, if I eat again three or four hours after the last eating I can spend most of the day distended, even if I only have a few bites. Generally it resolves overnight after a day like that, but not always. This morning I didn't even eat anything but had to get out of bed quicker than my usual stage-by-stage routine... my tummy just blew up big without even food. I wondered if there is a postural link? I know when my tummy distends my dizziness increases. Do you have this problem with your tummy too?
Wow- I'm so glad you found something not so far away as the U.S.A. (or England) that's a possibility! You're welcome & thanks for the kind words! I hope you are not iron deficient besides all your other medical issues? It's a common problem, an internist once told me, with the menstruating female. And you can become iron deficient before it every shows in your complete blood count (it happened to me). This problem can exacerbate your tachycardia and your fatigue, etc., so if you haven't had an iron panel (with ferritin, iron saturation percentage, T.I.B.C. and blood iron level) you might ask your doctor for that kind of blood testing.
Does your stomach empty slowly?
Thank you for the articles, the Mayo clinic testing diagram was fantastic. It would be great to just send my blood to a clinic somewhere instead of taking myself! I continue to explore the possibilities.... hoping that we can find some information about an autonomic testing facility I saw mention of on an EDS forum... they just said autonomic testing was available in Brisbane (which is not impossibly far from me here in Auckland) but no details. I have put out some feelers and I am hoping to find out more today. Thanks so much for responding to my question 'LivinginHope'... your tag is a good one!