GypsySoulNicole Posted May 8, 2012 Report Share Posted May 8, 2012 Hello All! I've been "living on" this forum every night for the past few months and thought I would finally chime in and introduce myself. I am a 32 year old mother of 3 from Indiana. I believe I have had POTS and other weird stuff since I was young. At the age of 6 I was struck by 2 cars and suffered traumatic injuries. I remember POTS like symptoms appearing soon after I was out of the body cast and wheel chair and able to walk again. I had an echocardiagram at around age 8 after complaining of a strange feeling near my heart. Nothing was seen and so the issue was dropped. I started passing out not to much longer after that. We all just assumed I was weak, hadn't ate enough, etc. I wore a heart monitor for a week while I was in highschool after passing out and having the sensation of everything turning black and palpitations. yet again, nothing was found and I was reassured that I was experiencing sugar lows because I probably hadn't ate enough. From then on, I associated palpitations and POTS symptoms with sugar lows. Syncope has just been a part of my life. I have always been treated for the results of the syncope and no one ever questioned why the heck I was passing out. I have broken my jaw, busted my face and needed stitches, hit my head numerous times and even broke my pelvis in 2 spots from passing out in the checkout line at Walmart while I was pregnant with our 3rd daughter! I would instruct people to get me a candy bar cause I was having a sugar low! LOL! About a year and a half ago I had to switch PCP's do to an insurance change. I was nervous to meet my new dr. but something miraculous happend to me that day. I met with the Nurse pract. first and as she took my vitals and noticed my purple feet she decided she would get the doctor and have her meet me. She walked in the room, shook my hand, looked at my feet and started giggling. She said, You have dysautonomia. She had just watched the episode on Medical Mysteries and found it fascinating and researched it. She directed me to Dinet.org but also said there was not a treatment for me so I had to live with it. I was just excited to find out there were other people like me out there! Something changed a few months ago though. I developed a bunch of new symptoms including Raynauds, breathlessness, severe brain fog etc. So, I was ordered a lupus panel & a trip to the cardiologist. The Cardi. gave me the event monitor and scheduled the TTT. I had a positive TTT after passing out at 2 minutes upright. My HR was stuck at 30 for about 15 minutes after they reclined me back down and finally came back up after some oxygen. My event monitor recorded several severe SVT's and Brady's. My neuro stuff was not good either. I seem to be having the opposite of the "norm" for doctors and POTS. My doctors, although they don't seem to know much about Pots/dysautonomia, seem very concerned that things have been going down hill so fast. They referred me to Vanderbilt and after receiving the paperwork last week and an appt. set for November the Neuro called me back and said that it wasn't acceptable and he didn't think I could wait that long. They have started the referral process to Cleveland Clinic today. I am so grateful for this forum and all the info it provides, but most importantly the feeling of connection. That I am not alone, there are others out there just like me! Thank you so much for all of you sharing your stories for others! Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted May 8, 2012 Report Share Posted May 8, 2012 Welcome! You will find that this site is a great place to go for information and support. I hope you get some answers to your situation soon. Quote Link to comment Share on other sites More sharing options...
issie Posted May 8, 2012 Report Share Posted May 8, 2012 Sorry, you had to find us, but it is a great place because you are NOT alone. So, many people understand and care and we're all on this journey together. Even though most of the time - we're searching for a way to get off this ride. I hope you get the answers you need and get more pieces of your puzzle. It's so scary when we don't know what our body is doing and why. Issie Quote Link to comment Share on other sites More sharing options...
Monstrosity Posted May 9, 2012 Report Share Posted May 9, 2012 Wow, thats some ruff stuff... What doc are you seeing at the Clinic? Quote Link to comment Share on other sites More sharing options...
GypsySoulNicole Posted May 9, 2012 Author Report Share Posted May 9, 2012 Thank you for the kind welcome jpjd & Issie! @ Monstrosity I'm not sure what doctor I'll be seeing yet. I should hear something later this week. Today I had an opthamologist appointment to address temporarilylosing vision in my right eye off and on the past couple weeks. I have a mri with and without contrast scheduled for Monday. Quote Link to comment Share on other sites More sharing options...
issie Posted May 9, 2012 Report Share Posted May 9, 2012 Hoping for answers for you.Issie Quote Link to comment Share on other sites More sharing options...
abbyw Posted May 9, 2012 Report Share Posted May 9, 2012 Welcome and I hope that just as G-d sent you the right doctor before, you will be directed to the right doctors now to get you feeling better.Amazing that your doc had just seen a show on dysautonomia.Abby Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 9, 2012 Report Share Posted May 9, 2012 That was one smart nurse practitioner to notice your feet and even more miraculous that the Dr. knew about dysautonomia - thank God for TV! LOL. Hope you get answers and some help. Quote Link to comment Share on other sites More sharing options...
sarahm Posted May 11, 2012 Report Share Posted May 11, 2012 Hi I was just curious where in Indiana you are living. I grew up there and my parents still live there. I lived with them for 9 months last year when I got sick. I didn't have much luck with drs there, so I am glad to hear you are going to some good hospitals. Quote Link to comment Share on other sites More sharing options...
GypsySoulNicole Posted May 11, 2012 Author Report Share Posted May 11, 2012 Hi I was just curious where in Indiana you are living. I grew up there and my parents still live there. I lived with them for 9 months last year when I got sick. I didn't have much luck with drs there, so I am glad to hear you are going to some good hospitals.sarahm. I am just west of Ft. Wayne. Where did you grow up? Quote Link to comment Share on other sites More sharing options...
sarahm Posted May 11, 2012 Report Share Posted May 11, 2012 I grew up in NW indiana Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted May 13, 2012 Report Share Posted May 13, 2012 Welcome. I see you also have breathlessness issues. It one of the more rarer symptoms. I have several post on here you might want to search about it. Good luck at Cleveland, be sure to update us. Hang in there! Quote Link to comment Share on other sites More sharing options...
Libby Posted May 13, 2012 Report Share Posted May 13, 2012 Hi Nicole!That's such an interesting story about how you were diagnosed! Reality TV is good for something. And I totally hear you on the low blood sugar thing. I was the same. And it looks like you're right because you sit down or lie down while you're eating the sugar, so the POTS backs off...I'm glad you've found us and that you've decided to come out of the woodwork. It's really, really nice to have a place where other people get it. Welcome! Quote Link to comment Share on other sites More sharing options...
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