butterfly Posted December 14, 2004 Report Share Posted December 14, 2004 hello everyone.my name is kylie,im 17 and was diagnosed a year ago with POTS, and inapropriate sinus tachycradia (IST). i dont know anybody with either conditions, and have had a tough year with them. its great that i can talk to people with these conditions. Its like a family who all know exaclty what you are goin through, just to live normally everyday. thanx for your wonderful help with information too.-Ky Butterfly. Quote Link to comment Share on other sites More sharing options...
luckygoat3 Posted December 14, 2004 Report Share Posted December 14, 2004 Hi,You may also want to check out www.dynakids.org. they are aimed towards kids and young adults. wishing you luck,susie Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted December 14, 2004 Report Share Posted December 14, 2004 Welcome Kybutterfly! A lot of people who recently came on board are in a similar situation to yours! There must be something in the air lately! Anyway, glad to have you here, best regards, tearose Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted December 14, 2004 Report Share Posted December 14, 2004 Welcome to the forum, KY Butterfly. We're glad to have you here. There are a lot of wonderfully supportive people here, and we're here when you need us. Michelle Quote Link to comment Share on other sites More sharing options...
Ernie Posted December 14, 2004 Report Share Posted December 14, 2004 Hi Butterfly,What a nice boardname! Welcome to the forum. I have POTS and NCS and it is confirmed that I don't have IST.Take careErnie Quote Link to comment Share on other sites More sharing options...
danelle Posted December 14, 2004 Report Share Posted December 14, 2004 Welcome young Butterfly, glad you found us! If you don't mind, l would like to ask you a few questions. How were you diagnosed with POTS, and how were you diagnosed with IST? How long have you had symptoms and what were/are they? Is there a family history?Post as often as you need and want to, there is wonderful support here and so many people are glad to help and share their experiences with each other. IT really helps Hugs sent your way,danelle Quote Link to comment Share on other sites More sharing options...
Jersey Girl Posted December 14, 2004 Report Share Posted December 14, 2004 Welcome BUTTERFLY from Australia! We're really becoming world travelers on this site. Hope you're feeling ok. Martha Quote Link to comment Share on other sites More sharing options...
blackwolf Posted December 14, 2004 Report Share Posted December 14, 2004 welcome Butterfly,This is the most remarkable site, I hope you get out of it as much as I have.BlackwolfPOTS/CHF(chronic fatigue syndrome) Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted December 14, 2004 Report Share Posted December 14, 2004 Hi Butterfly, I hope you find much help here You certainly are not the only one in this group with POTS and IST. Nina Quote Link to comment Share on other sites More sharing options...
blackwolf Posted December 15, 2004 Report Share Posted December 15, 2004 Forgive me but,AMEN Quote Link to comment Share on other sites More sharing options...
Eillyre Posted December 15, 2004 Report Share Posted December 15, 2004 Hi Kylie! Nice to have an aussie potsie to add to our very eclectic family! I had a bunch of Australian friends growing up -- I learned your monetary system and territories before I learned the American ones! How's that for patriotism?! Anyhow, glad you've found us, butterfly!With a smile,AngelaP.S -- What kind of butterfly are you? Blue morpho, monarch...? Quote Link to comment Share on other sites More sharing options...
butterfly Posted December 15, 2004 Author Report Share Posted December 15, 2004 Hi,You may also want to check out www.dynakids.org. they are aimed towards kids and young adults. wishing you luck,susie<{POST_SNAPBACK}>Hey! thankyou heaps, i will check that site out. luv butterfly Quote Link to comment Share on other sites More sharing options...
butterfly Posted December 15, 2004 Author Report Share Posted December 15, 2004 Welcome young Butterfly, glad you found us! If you don't mind, l would like to ask you a few questions. How were you diagnosed with POTS, and how were you diagnosed with IST? How long have you had symptoms and what were/are they? Is there a family history?Post as often as you need and want to, there is wonderful support here and so many people are glad to help and share their experiences with each other. IT really helps Hugs sent your way,danelle<{POST_SNAPBACK}>G'day.... thankyou for replying.Hope your having a good day.... ohk to your first question. i collapsed at school twice, with fast heart, and weird breathing, after walking to my class, in summer, so i got taken to doctors, they said that it was just nothing. then it kept hapening, neer colapsing everyday, (because of the heat, it was summer, it made it worse) then i went bak to docs, and they refered me to a cardiologist beacuse my dad demaded. they just werent doing anything for me, then it hapnd the next day, neer collapse, and i got taken to hospital. they couldnt find anything after 5 hrs being there. the netx week i went to cardiologist, they said i probly have svt, or inapropriate sinus tachy. then after the stress test, i lasted on it for 3 minutes walking quiet slow, with a heart rate of 206. so they stopped me before i collapsed, and sat me down. got put straight onto best blockers, which helped. then i kept having fast heart everyday, and feeling breathless the usual, but this time also having a weird flip-flop feeling in my heart so i got sent to ST Vincents hospitail in sydney top visit a elecrophysiologist, who did tests and saw wen i stood up and felt faint, it was my blood pressure., he said that my heart rate increased, and blood pressure went real low, so my heart didnt have much to pump. i was put on a larger dosage, of metoprolol. i have to have blood tests alot, and, everymonth i must visit my gp, my doc sed this. just to make sure im ok with blood pressure and heart rate. i get my blood test results tomorro!! i have high cholesterol(6.4) they think it might be hereditary. hopefully, tomorros test will show a drop in the level though. wow this is so cool.... its cool that all you know what i feel like eveyday..... for a bit i thought it was in my head, and was begining to doubt myself. I just have to have to say this... i hate it wen i make my bed coz i get puffd out.... do u guys aswell? i guess you do. also do any of you get affected by eating chocolate.. it makes my heart race.worse. oh by the way answering your other q. i was diagnosed with IST, then it was found i had POTS asweel, and that the POTS made my IST worse. wow thats confusing.and my symptoms are al the ones listed on this site that names symptoms.um, ther is a family history of heart probs, a couple of 2nd cousins mysteriously droping dead whilst playing football, they were my age. and also my grandmother has cardiomyopathy,(diagnosed a year ago, same day as i was with IST) and she used to complain of geting dizzy wneh she stoood up, especialy in the sun, docs didnt think anything of it.Thanx for listenning, i have to go and have my santa photo now hahaha, yep 17 and still getting them, with my sister (16) and brother (12) we get them done to keep our parents happy! hahaha, hav a great day......luv kybutterfly. Quote Link to comment Share on other sites More sharing options...
butterfly Posted December 15, 2004 Author Report Share Posted December 15, 2004 Welcome BUTTERFLY from Australia! We're really becoming world travelers on this site. Hope you're feeling ok. Martha<{POST_SNAPBACK}>Hi marthaYeah, u are getting lots of members from other countries.Am i the only one from aus? i am feeling very good today actually, i started my school project assingment... for design and textiles. Its a wedding dress. it looks very nice, its verry puffy and pretty. i mite send you a picture whens its finished.hope your having a good day too.luv butterfly Quote Link to comment Share on other sites More sharing options...
butterfly Posted December 15, 2004 Author Report Share Posted December 15, 2004 Hi Kylie! Nice to have an aussie potsie to add to our very eclectic family! I had a bunch of Australian friends growing up -- I learned your monetary system and territories before I learned the American ones! How's that for patriotism?! Anyhow, glad you've found us, butterfly!With a smile,AngelaP.S -- What kind of butterfly are you? Blue morpho, monarch...? <{POST_SNAPBACK}> hey!haha cool,so i guess u know where NSW is, thats the state i live in. oh by the way....the type of butterfly i am is one thats trying to find her wings... because when you find your wings you can fly....also, i always talk to my mum... and when my heart is racing i tell her that the butterfly is back.. because it feels like a butterfly is flapping its wings inside my heart, trying to get out .. or sumthing lol hahha. hav a good day... luv ky Quote Link to comment Share on other sites More sharing options...
danish Posted December 16, 2004 Report Share Posted December 16, 2004 Hi Kylie!Welcome! I'm 15 and totally relate to what you're going through. The whole collapsing in school thing is never fun . Along with dyna kids you might want to check out http://illnessesnz.hyperboards2.com. It's a forum for teens in New Zealand with chronic fatigue/dysautonomia/fibromyalgia, but there are a lot of aussies there too. Maybe you'll be able to find someone who lives near you!Good luck with everything.~Sarina Quote Link to comment Share on other sites More sharing options...
geneva Posted December 16, 2004 Report Share Posted December 16, 2004 Butterfly, welcome to the forum. You sound like a very happy young woman in spite of the health challenges. How wonderful that you have supportive parents and family to help you through the difficult spots. You have a great way of expressing yourself as the butterfly has returned! Very clever and appropriate when your heart is pounding. Again, welcome! Quote Link to comment Share on other sites More sharing options...
Ling Posted December 17, 2004 Report Share Posted December 17, 2004 Your name attracted my attention immediately as I work with insects for a living. Not that a butterfly is an insect but it is sort of in my line. Entomology department for an international research company in South Africa.Butterfly this site is great it keeps me going when I feel weird and alone. Even days were my doctor does not understand I just get on the site and talk to everyone. It is a better support system than my family could ever be. We are the same and have similar problemsBy the way have a Glucose intolerance test. The sugar thing sounds like you are sensitive to sugar. It is one of my six problems. All falling under P.O.T.S but a problem on its own as well. Leaving sugar changed my life allot. Sugar is in almost everything now days.Good luck and you lucky you found help so soon. It took me 9 years to get diagnosed probably. I just sort of collected the diseases and found not inner peace until I finally got diagnosed with P.O.T.S. Plus I have my own Chemist in my cuboard at home. Doctors love tablets. Now everything makes sense. I understand my body more and I accepted the daily challenges that we all live with. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 18, 2004 Report Share Posted December 18, 2004 Im another aussie. How have you gone with finding a good doctor? Quote Link to comment Share on other sites More sharing options...
DancingLight Posted December 20, 2004 Report Share Posted December 20, 2004 welcome butterfly/kylie from australia!sorry i am a little late in welcoming you...i am a bit behind on my posting!i love your reason for choosing butterfly as your name...it is also great to have people here from all over the world.i cannot believe how many young folks have just joined in the past couple of weeks...i know you will all find a lot of support and information here...emily Quote Link to comment Share on other sites More sharing options...
butterfly Posted December 20, 2004 Author Report Share Posted December 20, 2004 hi, um i have a good doctor, from st vincents hospital. and another from a specialists center.i live in sydney, where abouts are you? i dont know any other aussies with this. do you have a good doctor?butterfly Quote Link to comment Share on other sites More sharing options...
briarrose Posted December 21, 2004 Report Share Posted December 21, 2004 Welcome Butterfly! I too am behind in my posts, it will probably be another 1-2 weeks before I catch up probably after the holidays in fact. I'm glad that you found this site it's a family here. steph Quote Link to comment Share on other sites More sharing options...
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