MommytoSJEA Posted December 11, 2009 Report Share Posted December 11, 2009 Hi everyone! I'm new here and hoping to get as much info as I possibly can. My doc is of NO help whatsoever. I started having all the "symptoms" back when I was about 15, but never went to a doc until I was 20. I was dx with SVT, had an ablasion (12/04). Seemed better for lack of a better word for about a year. At least in that year I did not faint. Docs changed and a new Electro took over for the old one. Saw him, told him the symptoms were coming back. Dizzy, swimming dots in my eyes, racing heart, "fishy flopping" feeling in my chest and terrible chest pain. He says sounds like Atrial Fib, lets ablate again (11/05)! Goes in finds something else to ablate, and it did not help. Enter next game of finding the right meds for you! Yeah, not fun. Beta Blockers, Calcium channel bloackers, BP meds, and anti-arythmics...nothing helped. If anything everything made it worse. The tiredness, nausea...uggg. EP doc says well, I guess its just innapropriate sinus tach. Great IST. I begged for a pacemaker, he said no. Too young. He sends me to Strong Memorial in Rochester (I live in Buffalo, NY) for a consult and they decided to do a sinus node modification. They deemed that a failure, with a shake of thier heads saying I just don't get it. It should have worked. We "burned" your heart 36 (yes, 36) times! Back to Coreg and Diltiezem (sp?). My EP adds midodrine to that mix. My pharmacist says stupid since one if to raise BP and the other to lower, but what do we know. So I take them, and imediately become stupid. Can't hold a conversation, can't stay awake. And the nausea is so bad that I don't know if the next time I open my mouth I'm going to vomit on the person in front of me. Yeah, that was fun. Called EP, he said and I quote "Suck it up for a bit longer" I went back to the office threw a raging fit, and he send me to Dr Feuod (sp?) at the Cleveland Clinic in Ohio. She dx me with POTS. That was this Sept. Told me my EP could monitor me from Buffalo, and have a nice day. I see him 2 wks ago (yeah he let me go almost 4 months from when I went to Cleveland to have a follow-up with him). He asks me "did you ever go to Cleveland" He never got any paperwork nothing. So I tell him what I remeber from the tests. Tilt, Blood volume, and ANS test of some sort. He says well she knows her stuff, so, if thats what she says it is then thats what it is. I don't know what to do for you other then keep playing the meds game. I was sent off to take Florinef for 6 wks to see if this helps. Oh yes, and when I was crying, yet again, because its not fixing the problem, hes says well im sorry, your life is going to be completely miserable, but your not going to die from it I think I need a new doc. Oh, and I know now from all the reading I have done, those 3 ablasions I had...not so good.Ok that was long. I'm sorry. I just have tons of questions seeing as how my doc bites the big one. Im in Buffalo NY, anyone know any docs out this way....besides Cleveland. I dont even know about this Floinef. He did not tell me anything about. I read that im supposed to be uping my intake of water, possibly salt tablets. He told me NOTHING. Wait, no he told me I might bloat around the tiome of the period. Thanks doc.Any help or advice would be much appreciated. If your still reading this far...thank you~Kelli Quote Link to comment Share on other sites More sharing options...
Brye Posted December 11, 2009 Report Share Posted December 11, 2009 Welcome ... sounds like you've had an awful time! I've been diagnosed with pots! It's very hard to control the symptoms. It has required a lot of med adjustments and that still doesn't always to the trick. I was taking atenolol at one point to slow the HR which also caused my BP to be too low. I had to take midodrine to counteract the low BP from the atenolol so I could keep taking the atenolol. Then when I get too bradycardic they tell me to hold the atenolol to let my heart speed up again and I end up with a racing heart.You need to find a doctor who can help safely adjust your meds. I had a hard time finding one and have done a lot of my own research on what meds I should be taking. I called the clinic before I went to see if they treated POTS patients. That doesn't guarantee anything but I figured at least they would have some idea about treatments. I drive 3.5 hours to see an EP doctor who has been helpful. He's not an autonomic specialist but if I have a question or problem he takes the time to figure it out for me. My favorite insensitive doctor quote was "people your age don't die from HR's in the 30's" I take florinef, atenolol, and potassium for my POTS. I have as needed meds for nausea as well that I take. I'm not bed ridden but I still faint occasionally and fatigue is another huge problems for me. I avoid med adjustments like the plague because I worry so much about getting worse and passing out more than I do already. Hope you find some help in treating this!! The cardiology clinic I started at had this no cure / no treatment attitude. I know there is no cure but I won't let my life be miserable and I'll keep trying until I get that right combo!! Good luck! Hopefully you'll get a good doctor recommendation as well! Brye Quote Link to comment Share on other sites More sharing options...
janiedelite Posted December 11, 2009 Report Share Posted December 11, 2009 Here's the list of physicians in NY who treat dysautonomia. Hopefully you can find someone close by, but often we have to travel to find the physician who is truly able to help us. I had to fly from Oregon to Mayo in Minnesota as there were no local docs who knew what to make of my symptoms. And now that I've followed all of Mayo's advice and still need help, I'm now with a new cardiologist again. When one doctor says they can't help you, it's time to ask for a referral or do some searching on your own. Best of luck to you!Julian M. StewartDept. of Pediatrics Munger Pavilion New York Medical College Valhalla, NY 10595 914-594-4370Treats Children Information on Dr. Stewart's current research study is available on our website at: http://www.dinet.org/studies.htm Svetlana Blitshteyn, MD835 Hopkins RoadWilliamsville, NY 14221716-531-4598Dr. Blitshteyn specializes in autonomic disorders, headache medicine and general neurology. She is highly recommended.Mount Sinai School of MedicineAutonomic Disorders Research and Treatment ProgramDepartment of Neurology, Box 1052Mount Sinai Medical CenterOne Gustave L. Levy PlaceNew York, NY 10029212-241-7315 Autonomic LaboratoryTreats adults Dr. Kiril KiprovskiDepartment of NeurosciencesHospital for Joint Diseases301 E. 17th StreetNew York, NY 10003212-598-2375POTS, NCS, PAF/Secondary Autonomic Failure, MSA, Orthostatic HypotensionAutonomic LaboratoryTreats adults Dr. Ludmilla Bronfin650 First Avenue., 7th FloorNew York, New York 10016212-532-6298POTS & NCSTreats adults Dr. Max HilzNew York UniversityDepartment of Neurology550 First Ave.New York, NY 10016212-686-7500 ext. 7755POTS, NCS, PAF/Secondary Autonomic Failure, MSA, Familial Dysautonomia, Diabetic Autonomic NeuropathyAutonomic LaboratoryWill treat children Lindsey Lee Lair, MD35 East 35 St. Suite 202New York, NY 10016917-991-1992Comments:Dr. Lindsey Lee Lair completed her fellowship in autonomic and peripheral nervous system disorders.The Syncope Center at Columbia Presbyterian Medical CenterHarkness Pavilion, Room 342180 Fort Washington AvenueNew York, NY 10032212-305-9940Treats adults Louis H. WeimerNeurological Institute of New York710 W. 168th StreetNew York, NY 10032212-305-1330Orthostatic Intolerance (POTS), PAF/ Secondary Autonomic Failure, Multiple System AtrophyAutonomic LaboratoryTreats adultsDr. Weimer primarily performs testing. The Neurological Institute of New York has a large movement disorders group experienced with MSA, and there is also a syncope center that treats NCS (See: The Syncope Center at Columbia Presbyterian Medical Center). POTS/OI patients are considered on a case to case basis. Quote Link to comment Share on other sites More sharing options...
MommytoSJEA Posted December 11, 2009 Author Report Share Posted December 11, 2009 Svetlana Blitshteyn, MD835 Hopkins RoadWilliamsville, NY 14221716-531-4598Dr. Blitshteyn specializes in autonomic disorders, headache medicine and general neurology. She is highly recommended.OMG! This one is about 20 minutes from me! My searches have all turned up all the other ones you posted, but not this one. Thank you. I will be checking this out.~Kelli Quote Link to comment Share on other sites More sharing options...
erik Posted December 11, 2009 Report Share Posted December 11, 2009 Welcome! I hope you can get out of or through the medical maze soon. The folks here are great and you'll love the forum. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted December 12, 2009 Report Share Posted December 12, 2009 Svetlana Blitshteyn, MD835 Hopkins RoadWilliamsville, NY 14221716-531-4598Dr. Blitshteyn specializes in autonomic disorders, headache medicine and general neurology. She is highly recommended.OMG! This one is about 20 minutes from me! My searches have all turned up all the other ones you posted, but not this one. Thank you. I will be checking this out.~KelliGreat! Dr. Blitshteyn actually helped make the recent DINET DVD on POTS. She seems to be very knowledgeable and compassionate. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 12, 2009 Report Share Posted December 12, 2009 Dr Stewart is a leading authority on POTS and related disorders. His team have made some impressive steps forward in studying POTS. Quote Link to comment Share on other sites More sharing options...
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