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Old 05-01-2012, 08:44 PM
Location: Back at home in western Washington!
1,500 posts, read 3,754,840 times
Reputation: 3218


My oldest was recently diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). It took years of searching for a diagnosis (I've posted a bit of our journey through doctors on here). She still has some appointments to go to (cardiologist, GI, and neurologist (sp?)) before we have a definative diagnosis. Her new Internal Meds. doctor (I am so thankful that this woman agreed to see her before her 18th birthday) has begun treating her for POTS and she is feeling better, so we are sure that is what she has anyway.

Has anyone else dealt with this? The stats say that "as many as one in every 100 girls has it", so it isn't that uncommon. I don't think most people know they have it though... they likely are just suffering through the symptoms without knowing that all the random issue are connected.
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Old 05-01-2012, 09:06 PM
Location: Lompoc,CA
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What are the symptoms??
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Old 05-02-2012, 08:26 PM
Location: Back at home in western Washington!
1,500 posts, read 3,754,840 times
Reputation: 3218
Low blood pressure
Pre Syncopy (feeling faint)
Digestive problems
Racing heart upon standing up or doing anything physical
Intolerance to heat
Unexplained weight loss

These are just a few of the symptoms. There are many more and can vary from person to person.
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Old 05-03-2012, 02:19 PM
Location: North Carolina
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yes and infact there are several post on here about it if you do a search. I myself have had it for 8 years
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Old 05-06-2012, 07:03 AM
1 posts, read 712 times
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My daughter has it. She takes Metoprolol 25 mg. ER (1/2 a.m. 1/2 p.m) and fludrocortisone. These have made a great impact on her quality of life. While she's not like a normal teenager and able to go full throttle, she can manage now with the meds. They say if this is primary, you outgrow it in your mid 20's. This is not primary for my daughter but we still pray. She has started fainting but has grown accustom to what that feels like and how to prevent falling. Also, POTS patients present a special issue when sedated so make sure your cardiologist/anesthesiast work together! Make sure your child carries a medical alert. Most times when these kids pass out, all they need is an IV so a warning to any medical personnel is great for knowing how to treat the patient. There will be days of waxing and waning but eventually, your child will understand the limitations and be able to manage. Make sure depression doesn't set in because that's something else to watch for.
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