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meandean

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  1. Hi Gena, I live close to Fort Lauderdale, I have POTS and SVT. Like your friend I haven't found any doctors who know about Dysautonomia. I've been seeing an EP in Ft. Lauderdale who diagnoised me with POTS, but doesn't know how to treat it, he just wants to do another EP ablation on me, the first one failed! And after finding this site I know that ablations don't work on pots patients. I went to a very good nero in FLL who recommended me to another cardiologist/EP who is highly regarded in his field, I don't see him until 11/27/06, but hopefully he will be able to get me somewhat back to normal. He also gave me a name of a good endo, but wants me to go to the cardiologist first, then the endo. Right now I work, eat and sleep, that's about the extent of my activities, I'm exercise intolerent which is really hard for me to handle. I was a competitive natural female bodybuilder training five days a week with weights and cardio, now I get out of breath going up a flight of stairs! I've been to Cleveland Clinic in Weston, FL, University of Miami and other's in the FLL area and they all are clueless when it comes to pots. If the new cardiologist/EP is all he is supposed to be I'll let you know or you can email me for his contact info and the endo's info. Tell your friend to hang in there, I'm sure you already have since you are going through the same thing. Take Care, Dean
  2. SUNNY here in South Florida, clear blue skys, high of 80 today, had a cold front come in on Tuesday, whew chilly down to 61, burrrr.....LOL My husband wishes for some cold weather, not me grew up in that cold white stuff, give me the sun!
  3. Thanks to all of you for replying to my post. Iam hoping that the new neurologist that I see tomorrow can level me out and answer all questions, address my symptoms and has some idea about POTS. Still have the strange pain on my right side that radiates in between my shoulder blades, not unbearable yet, but there just the same. Thanks again, for sharing your experience and the testing advice. Regards, Dean
  4. Yes, on all of your symptoms. With me it feels like someone has a slight choke hold on me and I'm constanly swollowing, I've also had a hoarse voice since June. I can't sleep laying down, because you know how when you are crying very hard and you do that hyperventalting thing like you are trying to gasp for air, I'll wake up in the middle of the night doing that if I'm sleeping laying flat in a bed, laying flat causes my heart to race which between the two causes me to wake up, and on bad nights when I struggle to get a breath, I actually get on my knees to feel like I can breath again. I sleep in a recliner, with my head elevated which seems to help, sure would be nice to sleep by my husband again! I try, but always wind up back in the recliner. It is scary at times because we all know these things that happen are not normal. Hang in there, this site has really helped me deal with all the strange symptoms that POTS brings into our lives. This whole thing is crazy, but helps to know other people deal with it daily too. Take care of yourself, Dean
  5. Sunfish, You poor thing, after you suggested searching for GB on the forum I did and read about your GB surgery. What an terrible experience you had. I am going to a new nero on Friday who is also an internist and I will tell him of all of my old & new symptoms of POTS. I haven't found a doctor who is actually treating me for POTS, my EP diagnoised me with it, but doesn't know how to treat it????? This whole thing is so crazy. Thanks for your input and advise. Amby, Let me know how your appt. goes Thanks for the feed back!
  6. Hi all, Another new symptom..... I'm having pain just below and behind my rib cage along with right side abdominal pain and eveything I eat goes right through me. Can gallbladder problems be causing this or could it be something else? Any ideas guys? On a good note I had two great days, but then bent over to pick up a glass that I broke and felt like someone sucked all of my energy from me. I enjoyed those two days......felt human again! Any thoughts would be appreciated! Thanks, Dean
  7. Hi Jess, I'm in South Florida too, any luck finding a doctor in our area who treats POTS? I have not, BTY Cleveland Clinic is not all is cracked up to be. I was admitted there in late July of this year for my HR being very high, this was before my EP told be I had POTS and even though I told the doc's at Cleveland Clinic my history and all the symptoms I had, they kept me over night to cover their butts, but released me the next morning basically telling me it was all in my head! I haven't found a doctor here who treats POTS, but I'm going to the University of Miami tomorrow to see a new EP and have been referred to a nero my nerosurgeon. Let me know if you have any luck in finding a dr., I'll do the same. Hope you are well. Dean
  8. Thanks to everyone who has replied to my post, I don't feel so lost or alone anymore. Thanks for all the help and suggestions! Any ideas on how to cope with being tired all the time? I slept for 36hrs this weekend and still felt like I could sleep my life away. Does bending and then getting back up effect anyone? I'm having a really tough time with that, guess I need to learn to think before I act with this POTS thing! Thanks again, Dean
  9. Dionna, Thank you so much for that helpful information and the welcome aboard note. My nerosergeon had a thought that it could be the vagus nerve, but never went any further with it, becaused he referred me to another EP at the U of Miami. I see the new EP on Wed. hoping he is somewhat familiar with POTS. Are you in the Marine Corp? I'm wearing my USMC t-shirt at the moment, my husband is a Marine. With my voice I sound like one of the chipmonks most of the time and in the last few weeks have been experiencing tightness, like someone has a slight choke hold on me. Thanks again for the article, I appreciate the time you took out to send it to me! Dean Good to meet you to, I hope my POTS does resolve on it's own as fast as it came upon me! Dean
  10. Hi Everyone, I'm new to this form, my name is Dean and my EP diagnosed me with POTS last month, but isn't treating me for it. This was after he did an abalation on me in June for SVT, for two days after the abalation I felt ok, but went down hill very fast from there. At first I thought I was only dealing with SVT, but after POTS came up I started to research it and found this site and it has helped me to feel like I'm not CRAZY! My story is that before POTS hit I was an athlete, training five days with weights and cardio, in January of this year I started to feel short of breath and my heart began to race and had severe fatigue. I knew this was not normal for someone in my physical condition, long story short went to the Cardio doc, after stress test, echo, etc. they said I had SVT and to see an EP. In Feb I saw the EP he wanted to do an abalation right away, I didn't want to because I've been through some serious surgerys, brain 1998 and cervical neck surgery in 2004. I continued to train and try to beat what ever was trying to keep me down, but one day in early June I was doing cardio and could not manage to do 5min and was extremly out of breath and was having severe chest pain. I was able to get in to see my EP quickly and again he said the abalation was my only answer, I agreed and went through with it, before surgery they gave me Reglan and I had a BAd reaction to it, I lost controll of my tongue and couldn't speak right. The docs got me stable and continued w/surgery. After seeing all kinds of doctors and test after test, my EP comes up with POTS, can an EP even diagnose POTS? I've got some questions for you guys, has any one had hoarseness with POTS, I've had it since June before the abaltion, I've been seen by an ENT, my Nero who is wonderful and everything they've tested me for comes back neg. Besides being hoarse, I'm tired all the time, have no energy, exercise intolorent (which is really killing me!) I lived to weight train, I was a competitive female natural (no steroid use) bodybuilder. I experience most of all of the symptoms that you all do. Any suggestions of any doctors in South Florida that treats pots? I've gone on long enough, but any help in trying to deal with this would be appreciated! Thank you! Dean
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