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How Did You First Learn About Pots?


puppylove
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I am just very curious because for a long time when I was feeling sick my parents and I didn't even know my symptoms could be relating to my heart or that I should see a cardiologist. My Dad's coworker's son had been having the same symptoms as me for a while and we are the same age. The first time I ever heard about POTS was when my Dad brought home an article about it that his coworker gave him. They were testing his son for it. Well his son has POTS. And I do too. :) Ironic I know! But I was just wondering how everybody else even learned about it because I just got SUPER lucky...

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I'd been sick and off work for 4 months (although I'd been having lots of symptoms prior to this) and had been searching the web for anything that would match my endless list of symptoms. My husband suggested lead poisoning as a possible source of my illness. I didn't think I had it, but to appease him I looked up some info on it. One of the symptoms listed was dysautonomia. I was curious as to what that meant as I wasn't familiar with the term. Up popped a lot of articles and I spent about 6 hours reading like crazy because it all seemed to describe my life! It was one of the most exciting days I'd had in a long time to finally find something that explained what I was experiencing.

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Pretty much same as Chaos. I googled my symptoms and learned a lot, but it took awhile. It was even more confusing because I had hypothyroidism, ferritin deficiency, fibromyalgia and dysautonomia all at the same time. My doctor proved to be worthless so I was clearly on my own. It was a very bad time. Thank goodness for the internet and this forum to say the very least!

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My doctors had been testing me for Lupus and early M.S., so I started looking up diseases that presented similar symptoms and low and behold, on a health forum, someone had written about having dysautonomia and how it had some similar symptoms to Lupus. I had never thought my symptoms could be related to my heart or to standing, even though I knew I felt awful if I stood for "long" periods of time. (I knew my hr was a little high, but never thought anything of it). I had even watched the episode of mystery diagnosis where the woman had Orthostatic Intolerance and thought "wow that sounds a lot like me", but once she started fainting, I decided I couldn't have that and didn't look further into it. When I told my doctor I thought I had POTS, he told me he would bet money on it that I didn't, and my cardiologist who did my first tilt, told me it came back normal. Fortunately, I had seen all of my numbers during my tilt and knew my hr had steadily climbed up to 180 bpm. After explaining that to my cardio, he admitted that he didn't even have my hr's from the tilt, only my bp! So it took a lot of research and lots of arguing with doctors before I finally got the right diagnosis and was able to find much better doctors for treatment

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I was in hospital for investigation of my tachycardia and severe shortness of breath which popped up out of the blue a couple of weeks beforehand. My endo came around to see me and wanted to take orthostatic BP for whatever reason. My BP didn't do much but I was on a holter monitor at the time which had an alarm which would alert my nurse if I went really tachy. Standing up for the BP test set the alarm off so they decided to keep doing orthostatics for the next couple of days to see if it was a consistent thing.. which it was. A cardiologist happened to be on a medical team that popped in to see me one day and as soon as I told him what my heart rate was doing, he said he bet I had POTS! I didn't even realise it was an orthostatic thing until then, I got pretty lucky!

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I spent six months getting glucose tolerance tests, diabetes insipidus tests, thyroid tests and more thyroid tests, before one day just finding a website on POTS - it linked to this site and I saw the symptoms and it was like aha! rang the doc on this site and saw him. he did poor mans and told me I had POTS - confirmed by tilt a month later.

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I diagnosed myself using the internet when those poor excuse for doctors brushed me off as anxiety. I knew my body and symptoms well enough to know it wasn't anxiety so I went online to google search engine and typed in the words "heart racing when standing up" and one of the results during the search was about POTS.

So I then searched for a neurologist in my area who was also specialising in Autonomic Disorders and I took my self-diagnosis to him asking him to do a table tilt test for me. He then confirmed I was correct.

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When did we get smarter than Doctors? Don't they have google too? I went from Doctor to Doctor for years. Finally mentioned to one Cardiologist during an echo/stress test that I've noticed I feel less dizzy when I lay down. A lightbulb went off his head and he had the nurse take my BP laying and then standing. She thought my BP dropped 30 points - so he diagnosed Orthostatic Hypotension and gave me a script for Florinef. During that same round of testing I'm watching my heart rate go from the 70's to 114 just sitting up and wondering if that was normal. The Dr. said nothing about it. I bought a BP machine and found my BP doesn't drop significantly when I stand, but my heartrate does shoot up. Googling OH brought up info about dysautonomias, including POTS. Took all this info to an ANS Dr. who did the tilt and diagnosed POTS.

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My son's doctor's kept telling me it was anxiety or that he didn't want to go to school. So finally I took him to a psychologist. The psychologist researched his symptoms and told us to see a cardiologist that she thought it was OI. So several doctors couldn't figure it out, it took the psychologist to get us pointed in the right direction. It took us 3 years to get the correct diagnosis.

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six years of in and out of drs offices and frustraition.internet can rock sometimes! my hubby found it! it was the third week / third month at mayo that I was diagnosed

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My daughter had passed out standing up and sitting down. We were referred to a pediatric cardiologist who diagnosed my daughter with vaso vagal syndrome. The doctor said she would not put her through a tilt table test, because my daughter would be miserable. I was around 40 years old then and that is when I learned it was not normal to stand up and see stars and/or get dizzy.

Around a year later, my daughter played a soccer game and attended her 10th birthday party. She went to bed happy and feeling great. The next day she woke up screaming in pain. Her neck and joints in her hands hurt so badly she was crying hysterically. She could not get out of bed. She was dizzy and sometimes had to crawl to the bathroom. Our pediatrician ordered Xrays then MRI of her neck. All tests ok. Pediactric neurologist in Dallas thought it could be rheumatoid arthritis so we saw specialists at Texas Children's in Houston. No one knew what to do. After two months of being completely bedridden and numerous tests, pain meds, etc, I finally took my daughter to the ER at Texas Children's hospital on friday night Memorial weekend. The docs at the ER didn't have a clue what to do and were about to discharge us when the Tx Children's neurologist I had been trying contact, Dr. Lebron, agreed to see my daughter.

At 7pm on a Friday night, my daughter explained her symptoms regarding her neck, hands, and dizziness. The strange thing was that migraines had not been a problem the last two months. Dr. Lebron's first response was "I don't do hands", but she kept on asking questions and observing. Dr. Lebron left for awhile and when she came back she starting giving us all of the symptoms of POTS. Both of us answered "yes" to almost every question. That is how both my daughter and I learned about dysautonomia. My daughter became Dr. Lebron's second of many dysautonomia patients. When Dr. Lebron was stumped about my daughter's care (before we saw Dr. grubb) she attended an autonomic conference and presented my daughter as a case study. Although we were Dr. Lebron's second patient, she had experience with familial dysautonomia when she trained under Dr. Axelrod in NY. We have been very blessed to have Dr. Lebron in our lives.

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I was showing symptoms of a pituitary tumor and was referred to an endocrinologist. He did a "poor-man's tilt" on me in the office and found the huge HR jump when I nearly fainted (thank God for strong nurses!) He told me that I had Mitral Valve Prolapse Syndrome, so I immediately went to a cardiologist, who checked and found no prolapse! I wondered how I could have MVP without prolapse and found University of Alabama's Mitral Valve Prolapse and Autonomic Dysfunction Center website. I printed out some info for my primary doc who sent me to Vanderbilt for confirmation, but he was pretty sure it was POTS after reading the literature from the UAB site.

I still have pituitary issues, but no tumor!

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Right after I got sick and complained of extreme /lightheadedness/dizziness, my primary doc referred me to a cardiologist. I cant remember whether if it was that cardio or a distant cousin that is a cardio who first suggested orthostatic hypotension as a diagnosis. From there I had a TTT and was diagnosed with POTS.

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