Fall-Di Posted February 10, 2015 Report Share Posted February 10, 2015 Hello,Just signed up. I have severe Orthostatic Hypotension and my Cardio just said he didn't know what to do for me. Tried Flurdo, Midodrine, compression stockings and lots of gatoraid/coconut water. Always dizzy and faint. There is only one doctor in the area that treats POTS, which I don't have, but I am on the waiting list. My bp drops when I stand and my pulse nearly stops. I have multiple autoimmune issues, Sjogren's, IBD...Just wanted to make sure I am in the right place.I am in my 40's and house bound. Not diagnosed with Autonomic problems yet, but I strongly suspect. Trying to get into Mayo or John Hopkins. Advice is welcome.Thank you,Di Quote Link to comment Share on other sites More sharing options...
gjensen Posted February 11, 2015 Report Share Posted February 11, 2015 Fall-Di, it sounds like you are in the right place.I am sorry that you have these challenges. I think that you will find a group of thoughtful and helpful people here.I do not have any particular advice. It is important that we see physicians that are qualified to treat our condition(s).I wanted to ask you if your heart stop after any increase in HR or certainly no increase in HR? Quote Link to comment Share on other sites More sharing options...
Fall-Di Posted February 11, 2015 Author Report Share Posted February 11, 2015 Gjensen,Thank you for the welcome. My diagnosis went as follows:Neuro sent me to Cardiologist. Cardio didn't take it very serious until I said, "I think I am about to pass out." and went white.Cardio had me stand up and took my blood pressure for three minutes and became very serious. I don't remember it all very well, but hubby was there watching.Cardio said, "That ain't right." (no joke). My blood pressure dropped 30 points in under a minute. The Cardio said he could barely find a pulse and that my HR was low as well but I didn't get the number. I had a heart halter test done and my ticker is quite healthy, I have always worked out - although very modified now.My Neuro wanted a tilt table test done, Cardio didn't think it was necessary. I can't find a place in Oregon that does it, OHSU is a possibility but I have heard they don't have anyone trained yet.Thank you for listening,Di Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 11, 2015 Report Share Posted February 11, 2015 Hi Fall-Di,You're in the right place. You might try Nuun tablets instead of Gatorade. I now have had 2 docs who deal with lots of dysautonomia patients tell me they are much more effective than the "--ade" drinks. It turns out they are more cost effective too. I've found them cheapest on Amazon. If you try them you want the "Active Hydration" option. I was told to drink 3 of them a day (you dissolve them in 16 oz. of water) plus drink more plain water and any other decaffeinated drinks I'm going to have. Not that I think it will solve all your problems but every little bit helps.I am not saying anything bad about Johns Hopkins, but I live in Baltimore so that is where I first tried to find an autonomic specialist. There isn't anyone who specializes in dysautonomia for adults there. Just one doc in pediatrics. They may however have specialists to help with your autoimmune issues but I'm not sure on that. Vanderbilt and Cleveland Clinic, in addition to Mayo, have dysautonomia specialists. And hopefully someone can chime in and let you know which Mayo has the good dysautonomia specialists. I know I've heard you need to go to the right location for Mayo.Welcome aboard! Quote Link to comment Share on other sites More sharing options...
Fall-Di Posted February 11, 2015 Author Report Share Posted February 11, 2015 Katybug,Again thank you!That is just the info I needed. I do not like sugary drinks, I'm a water drinker. I will check Amazon for the Nuun tablets. I had heard the same thing about Mayo and Hopkins. I have to go to Hopkins for Sjogren's, it's currently having some sort of party with my Kidneys, but I knew there was only one dr and not for adults for Dysautonomia. I was so hoping to avoid multiple clinics, I have been considering Cleveland. My Rheumy wants to work with John Hopkins and will leap tall buildings to get in to the right dr. I have a weird case and my Rheumy is a great dr., unfortunately he knows nothing about Dysautonomia but wants to learn. Thank you, off to Amazon shop...Di Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted February 12, 2015 Report Share Posted February 12, 2015 Hi Fall-Di!Welcome to the DINET Family! Sorrry we had to "meet" under these circumstances, however, atleast we are fortunate enough to have a place such a this where we can all come together, right? I hope that you can find some similar situations as yours, and please don't hesitate to ask questions! in the upper right corner there is a search option, it may be helpful to type in some of your symptoms to see if others have related in the past.Let us know if we can be of any help.. I absolutely love Amazon. It's kind of a problem actually.. My fiancé says, " Are you kidding, those better not be shoes." I love my shoes! Sarah Quote Link to comment Share on other sites More sharing options...
Fall-Di Posted February 12, 2015 Author Report Share Posted February 12, 2015 Sarah,Thank you for the welcome. I have really been using the site and have learned a ton already. Several people have helped me with locating a dr, I am so grateful this site exists!I too have an Amazon problem, my husband caught the condition from me. So now it's, "Is it mine or yours?"Are we the new cat lady? Amazon Lady... Sounds better than cat lady. (I have two kittens - there is no hope for me, save yourselves!).Have a 'good day',Di Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 12, 2015 Report Share Posted February 12, 2015 Have you ladies found the addictive joys of Etsy, yet? Even more addictive than Amazon and kitties!! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted February 12, 2015 Report Share Posted February 12, 2015 Katie -- LOL!! t'll be our secret. Quote Link to comment Share on other sites More sharing options...
Fall-Di Posted February 13, 2015 Author Report Share Posted February 13, 2015 Katy & Sarah,I bought my handmade cat water fountain from Etsy... It's a fountain for my cat. I think I need an intervention.Di Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 13, 2015 Report Share Posted February 13, 2015 Lol! I might be an online shopping enabler, so you must seek intervention elsewhere. Teehee! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted February 13, 2015 Report Share Posted February 13, 2015 Di you really are the cat lady!! LOL!!!Its okay, im the dog lady: 2 yorkies and 1 great dane!! Quote Link to comment Share on other sites More sharing options...
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