Iheartfrogs217 Posted December 30, 2013 Report Share Posted December 30, 2013 Hey everyone!I know that the cause of POTS isn't really known, but I saw a site today that said that POTS HAS to be caused by something. Is that true or has anyone else heard this? Also, the doctors really can't find anything else wrong with me, so I was wondering if adolescence could be the cause of POTS in some patients? I started having symptoms when I was around 14 or 15 and now I'm 16. Any information anyone may have on this would be greatly appreciated! Thanks! Quote Link to comment Share on other sites More sharing options...
Katybug Posted December 30, 2013 Report Share Posted December 30, 2013 As far as I've read, some adolescents do experience idiopathic (no known cause) pots which they eventually grow out of once their body adjusts to new hormone levels, growth spurts, etc.. But, it is important to work with doctors to ensure that there is not some other cause as many other diseases and syndromes also have an adolescent onset. Quote Link to comment Share on other sites More sharing options...
looneymom Posted December 30, 2013 Report Share Posted December 30, 2013 My son was diagnosed with POTS when he was 11 years old. However, going into puberty may not have started his POTS condition. Recently my son has had testing that indicates it is immune related.Have you had a tilt table test done? This is the gold standard test. My son was seen by MAYO in December 2011. This test and several others were done to determine this condition. Dr. Grubbs in Ohio has written articles on POTS and the adolescents. You should be able to google his name and find some of his articles online.Rachel Quote Link to comment Share on other sites More sharing options...
Iheartfrogs217 Posted January 1, 2014 Author Report Share Posted January 1, 2014 Thanks for both of your responses!To Rachel/looneymom: No, I have not had the tilt table test. Matter of fact I have had no testing done. My doctor was sure I had POTS just because of the extreme tachycardia and discoloration of my feet and legs, along with the other symptoms I have that all correspond with POTS. I have not had testing because we don't have insurance and we can't afford it, because my dad is self-employed and my mom is a stay at home mom. Although, we are in the process of thinking about getting tests done just to make sure there isn't an underlying condition. If you don't mind me asking, how much does the tilt table test generally cost? Thanks for your help! Quote Link to comment Share on other sites More sharing options...
looneymom Posted January 2, 2014 Report Share Posted January 2, 2014 Hi Iheartfrogs217I have no idea how much this test cost. A cardiologist ran this test on my son but we had insurance. Has your doctor done a poor man's tilt table test? The first doctor that suspected this condition with my son did this in the office. However, you can do this test with some help if you have a blood pressure kit. You take your blood pressure while standing, sitting up right, and then lying down. If I remember right, you take the readings five minutes apart. The other way you can do it is by standing up and take a reading every minute for at least 10 minutes. However, this is not an accurate way to determine if you have POTS. It allows you to see how much your blood pressure is fluctuating. There are several members on the forum that have done this test. If you do a search for this, you will find several old post.Trying to determine if your POTS is caused by an underlying condition, can be hard to do. My son was put on medication to help with his low blood pressure and tachycradia. However, whenever my son would get sick, a new symptom would appear. After being on this medication for 9 months, he was finally able to walk and stand for very short periods. He could walk for 10 minutes and then he would start having tremors from waist down. After this he caught the flu and has never been able to stand up and walk. His story is on a blog called survivingpots.com. He has been through a lot and has just recently seen an immunologist.Rachel Quote Link to comment Share on other sites More sharing options...
Iheartfrogs217 Posted January 3, 2014 Author Report Share Posted January 3, 2014 Rachel/looneymom:First off I'd like to say sorry about your and your son's hard trial with POTS. I can't even imagine going through what you are going through with your son, with one of my family members. This morning I thought I had it bad with POTS because I had so many heart palpitations, but I am, thankfully, still able to walk. I hope the doctors can treat it soon so he can walk again! It's people like you and your son who are true warriors. I will be praying for you and your family and I hope they can find a cure for this nasty syndrome soon! I'd also like to thank you for the advice on the "at home test" for POTS. No, my doctor didn't even do the poor man's tilt table test. We were just sure I had it based on symptoms and rise in heart rate. Technically I diagnosed myself. I brought in the proof and definition of POTS to my Dr's. office and she said I had it based on the definition. Ever since then I have believed that it was true and living with it since. So now I'm stuck trying to find a cause, if there is one in my case. Like katybug said, it could just be idiopathic. How did you figure out your son's POTS might be immune based? Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 3, 2014 Report Share Posted January 3, 2014 My tilt table was $1800. Im 35 and feel I've had symptoms for a few years. I can't imagine having symptoms as a teenager. My girls are about your age. Prayers with you. I know how hard it is with insurance/ cost. They've referred me to mayo. Just can't get there. We have 5 kids Quote Link to comment Share on other sites More sharing options...
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