avidita

Hi, Tachy Phlegming! I have not been tested for MdDS, but it doesn't sound like what I'm experiencing. Since this started I've flown numerous times between the US and Europe with no real problem.

Hi, Ana! The ENTs did every single ENT test there is: hearing tests; eye tests; balance tests of all kinds (the one where you stand on a platform, the one where they spin you in a chair); also the caloric test with hot/cold air (which was normal, too, both times they did it). The only thing that came back abnormal was a VEMP test, but they explained that it has to do with my vestibular migraines and it doesn't explain the constant dizziness as it does not test the organic state of the vestibular system (like the caloric test does), but rather the way it processes information (sound in particular). Thank you for your answers! Margarita

Thank you for your reply, Maggie! I btw want to add for anyone reading this that I am not completely insane with my exercise questions. I've done extensive POTS research and I am aware of how it affects those with the syndrome. I do have days where I am completely non-functional and just lay in bed b/c of the dizziness and nausea, my pulse is really wacky and gets high, etc. But then there are those other things and it makes me (and my doctors) confused. That's the reason I ask. Thanks again! Margarita

Hello everyone! Thank you for having such a wonderful site full of resources for people who have dysautonomia and their families. It is a difficult condition to have and every little bit of support and information is heaven sent. This post is intended as a question to anyone who has been diagnosed with having POTS to help me understand the condition a little better. Just as an overview, all my life I?ve had vestibular migraines (ones where you just feel extremely dizzy) before exams and when studying too much. Then in the beginning of ?07 after a few months on Yaz I got very dizzy in a way that wouldn?t go away no matter what I did (lay down, etc.) for 2 weeks. Had a vestibular workup, stopped the Yaz and was put on Xanax, which made me feel good. The extreme dizziness got better, but ever since I?m dizzy on a daily basis (a type of swaying/rocking sensation). This year I just couldn?t take it anymore and did complete workup: MRI, blood work, ENT test (with 3 different doctors btw), tilt table test, the works. Everything except the tilt table came back normal. Now, I have two diagnoses. The doctor who did the tilt table thinks I have POTS (because it was a positive tilt table) and all other doctors think I have anxiety. I am getting a third opinion, soon, but it would really help me understand POTS better if I got your thoughts on the following few questions if that is OK. 1. With POTS, do you think you will be able to do a long hike without making your symptoms worse? (this summer in the middle of a bad period of dizziness I went on a 4 day hike at 10,000 feet above sea level and did 10 hour trails without getting my symptoms worse) 2. With POTS, does Xanax-type medication make your symptoms get a lot better or even go away? (Xanax has been the only medication, together with Atarax, to make my symptoms get a lot better or go away, even more so than drinking lots of water) 3. With POTS, is it possible to work out 1-2 hours a day and feel fine during the workout? Does cardio or weights make you worse? (In general, when I feel bad, taking a long walk or doing elliptical makes me feel great during the work out, then I return to my usual dizziness. Very rarely do I get worse after a workout, and it is usually after weight lifting, not cardio). 4. With POTS, on days where you feel bad even when sitting or lying down, does standing up and walking around make it even worse? (for some reason I feel the worst when sitting still. To make it go away, I usually get up and walk around) 5. With POTS, do stressful events or situations make your symptoms worse? (needless to say they do for me) Any response to the questions above will be appreciated. I want to stress again that I am seeking a third medical opinion and this is not intended to substitute medical advice. Thank you in advance for anyone who takes the time to reply! Sincerely, Margarita