hholmes13 Posted July 2, 2011 Report Share Posted July 2, 2011 Hi! My name is Heather. I'm 28 years old and live near Rochester, MN. I've been recently diagnosed with orthostatic intolerance. My doctors originally thought it was POTS because of my tilt table results, but a neurologist who specializes in autonomic dysfunction does not believe that to be my problem. He believes I have excessive blood pooling and that my body just won't keep my blood in my head when I'm upright. I'm currently on Midodrine which helps ease the symptoms some, but I'm still nowhere near where I'd like to be! My symptoms literally came on overnight a little over 3 months ago. I haven't had any kind of a virus for a very long time. I deal with excessive fatigue, light-headedness/fainting, brain fog, headaches, and major nausea/loss of appetite. I never knew how debilitating this kind of illness could be! I'm still learning my limits and how to deal with this. It's so nice to find a network of people all dealing with the same thing. Even though I know it's a real illness, it sometimes makes me feel like I'm crazy. Anyway, I look forward to meeting you and learning more about dysautonomia and how to live with it! Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted July 2, 2011 Report Share Posted July 2, 2011 Welcome Heather ~I wish you didn't have to join this elite club, but let me tell you that you have just found yourself the best, most caring, loving, knowledgeable friends for life here. Here you can be free to say what you want, and no one is judgmental. Most of us are in a similar boat trying to stay afloat. Sometimes we drift away for a while, but back we come when we need help, information and a kind word from the ones we love ~ I wish you the best here and count me in as a friend. I believe we are all here for a reason. Why????? I think God made us all stop and stay still and made us kinder, a bit more understanding, able to reach out to others and we know better than anyone how to research anything. We arm ourselves up with information for ourselves and for others who come here. So I hope you stay with this illness is a short one. I wish I could say the same for me, but I already know my deal ~Good Luck sweet one and the only dues are: kindness and respect to all ~ I think you're going to like it here ~BellaMia ~ Quote Link to comment Share on other sites More sharing options...
caroline Posted July 3, 2011 Report Share Posted July 3, 2011 Hi Heather. Welcome. I have the same symptoms as you and the same diagnosis. Also take midodrine. I am a lot older than you but also struggling to live with this illness. Hope this lively group gives you lots of info and support. I would like to recommend the NDFR HANDBOOK FOR PATIENTS WITH DYSAUTONOMIAS on another site as well as the DINET bibliographies. Be well! Caroline Quote Link to comment Share on other sites More sharing options...
caroline Posted July 3, 2011 Report Share Posted July 3, 2011 Oops! That should be NDRF HANDBOOK. Sorry. Caroline Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted July 3, 2011 Report Share Posted July 3, 2011 Hi Heather!Im sorta an oldie-newbie.... lol. I'm Tennille, 33, have 2 kids and live in the upper corner of eastern TN.... and have had this disease for 8 years. Only recently have I found a good doc to help me sort this all out and get some answers and try some new meds. These women and men are great here. Bella hit the nail on the head here with everything she said. Many, if not all of us are deep researchers, as we have to be in order to find whatever pieces we can find to help us understand more about our disease. A lot of gals and guys on here, the information they share, will piece together parts of my puzzle. I have learned so much, but one thing most of all.... this place is my safe haven and it is the only place were people truly understand what we go through. Message me anytime you like dear! Glad to have you aboard!best wishestennille Quote Link to comment Share on other sites More sharing options...
hholmes13 Posted July 4, 2011 Author Report Share Posted July 4, 2011 Thanks for the kind words! I'm not happy that everyone has to deal with dysautonomia, but I'm glad to have found such nice people to share this experience with! Quote Link to comment Share on other sites More sharing options...
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