Autonomic Dysfunction Community
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Avatar universal

not getting ANY answers

hi everyone. I'm a teenager who has had POTS symptoms for over 2 years, but was just recently diagnosed this past October. I've fought and am still fighting for answers to understand my condition. before i was diagnosed, my pain got so intense i could barely move. we found a holistic doctor and he told me i had parasites, and possibly have had them for many years. I'm wondering if there could be some truth to that, since many people go through life living with parasites. my POTS specialist pretty much just told me i had POTS, told me i could eat whatever i want, drink more water, eat salt, exercise, etc. i was left to my own devices with my family to understand what madr my body react and be so sick. i have so many questions, but the doctors seem to have no answers. the only tesing for dysautonomia I've had is the stand-up test which was done when i was admitted to the hospital. im afraid i have another condition alongside with it, and I'm scared that i could get worse. if anyone has any advice PLEASE share, i have no idea what to do. I'm doing everything i was told, including dietary changed, lifestyle changes, and I've also started acupuncture therapy.
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Avatar universal

I feel like I'm in the same boat. Where are you Located? It seems to me from what I have been reading there is ALWAYS an underlying cause. Unless you find a doctor who is experienced in Dysautonomia or POTS you won't get anywhere. I have been doing the high salt high fluid thing for years and not seeing any improvement. I am awaiting a Dysautonomia specialist in Hamilton and his reviews are great. I guess he tries to get to the root of the problem and actually cares.
In terms of diet, I have found that gluten and dairy both trigger a string of bad days. I didn't make the connection until very recently with the dairy, but ta becoming more and more obvious.
Remember that the improvements you will notice will not be huge, because it takes huge amounts f time for your body to heal. The improvements may be so slight in the beginning that you don't even notice them. But if you pay close attention or keep a journal you might be able to figure out things that make you feel better or worse. This is the only way I have been able to function .
Good luck in your journey.
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