melly4 Posted September 4, 2005 Report Share Posted September 4, 2005 Hello, everyone, and blessings to anyone affected by Hurricane Katrina. I posted back in July about my son, who will be 13 next month. We just moved, so I am just now following up on replies. My son had a pheo workup, including the usual 24-hr urine, which was positive for VMA, a cardiac event monitor, a head and an abdominal CT scan. The scans were negative for pheo. His month-long event monitor revealed sinus tachycardia, sinus arrhythmia, PVC's, and PAC's. This was done before we moved. I never heard back from the peds cardiologist, so I just asked for his records to be transferred to me to take to a better doc down here. Our insurance doesn't kick in here until Sept. 15th, so we're playing the waiting game. Just to let you know, as so many of you have posted, that I'm quite tired of doctors, too. And my husband and I are healthcare professionals!! My son, a well-trained athlete, lives with bouts of wildly-fluctuating blood pressure, tachycardia, syncope, and near-syncope episodes. What really upsets me, other than the fact that he is without diagnosis and all the docs seem to throw their hands up in the air, is that his pediatrician's medical records show that my son's BP has been recorded in the 95th percentile or above since he was 9. It was never addressed!! When he stands up, it gets very low. I have also had extremely low blood pressure all of my life, but recently it has been 80/50 or below at times and I am also starting to have tachycardia. I have had bouts of this before and was told it was panic attacks. I am currently on 3mg of Klonopin a day, and I am still having problems. I have lost 12 pounds in the last month (didn't need to) and my son can't keep weight on either, despite voracious appetites. We've both been checked for thyroid disease. I have also taken a low dose beta blocker in the past for the heart palps, but it really didn't help that much. If anyone on this website lives in the Georgia area, and knows of a good endo doc or internnist, please let me know. We, as I know so many of you, are desperate for answers that seem to elude most of the docs we saw back in SC. I have been frustrated for years about my own strange health problems, but now that my son has them (or a variation of them), I am even more determined to find a name and treatment for this illness. It's not in our heads!! We are otherwise very healthy. Also, if anyone else here has had dysautonomia of any sort run in their family, that would be of great interest to me. Sometimes it it wise to be armed with info before going to see your doc!! Thank you for letting me vent and for the support I received from my last post back in July. Melly Quote Link to comment Share on other sites More sharing options...
Sara831 Posted September 4, 2005 Report Share Posted September 4, 2005 (edited) mellyi. am so sorry to hear about you and your son. its all sounds so parrallel to lives of me and my daughter,who both suffer from dysautonomia.i recently posted a quetion about mothers and daughters both suffering.the replies i got were veryinteresting.not only mothers and daughters,but often many people in the same family suffer.please vent as much as you need too.take caresallyannSorry! Sara was still logged in when i tried to make this post so it ended up under her name, please forgive me for any confusion Edited September 4, 2005 by Sara831 Quote Link to comment Share on other sites More sharing options...
Aprilmarie52 Posted September 4, 2005 Report Share Posted September 4, 2005 I think mine is a hereditary form. my grandmother on my dads side has it and both of my brothers have issues too. I sent you a pm about drs in ga Quote Link to comment Share on other sites More sharing options...
Ernie Posted September 4, 2005 Report Share Posted September 4, 2005 Hi,Mine is hereditary. Ernie Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 5, 2005 Report Share Posted September 5, 2005 My sister and I both have POTS. Fortunately for us, it is fairly mild with treatment with a low dose SSRI. I believe our grandmother had it and it was just never diagnosed.My sister lives in Georgia and has an electrophysiologist in Savannah. If this is near you, send me a personal message and I will get the doctor's name to you. Katherine Quote Link to comment Share on other sites More sharing options...
melly4 Posted September 5, 2005 Author Report Share Posted September 5, 2005 Thanks to all for the support and info. My mother just came to visit today, and after talking, have discovered that we come from a long line of family members who suffer from some sort of dysautonomia or another. Even my brother and grandmother have issues. My mother, a cousin, and an uncle does, too. It's amazing. Thanks for all who sent doctors in GA. We hope to get help soon. God bless all and stay healthy, Melly Quote Link to comment Share on other sites More sharing options...
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