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Everything posted by wsc

  1. Radha~ I was started on 25 mg Toprol, too, and my cardiologist was surprised to know it didn't do a THING for me because I am a small person. It's since been increased twice - to 50, now 75. But that may be why your doctor is hesitant to increase your dose - -because it sounds like you are a little person, too. BUT, my doctor just put me on Zoloft to help me with my adrenaline related symptoms, and although I was hesitant to take it initially, it has REALLY helped SO incredibly much with that feeling you are describing. Maybe you can talk to your doctor about that. It might really help you. I'm not taking it for what it is usually prescribed ~ anxiety and depression. My doctor said it works really well to conrol the release of serontonin that can cause that feeling of adrenaline overdose. Anyway, he's right, and I'm doing much better on it. Good luck.
  2. Amy--- I just wanted to say that I hope you finally get some answers and I'm so glad that you finally have a doctor who is taking you seriously. I know that must be such an enormous relief!!! please, please let me know what the results are today. My thoughts are with you, hun.
  3. I've had several EKG's in the last week. They were all abnormal, showing ST-T changes. Anyone know anything about EKG's? i looked on line, and all I could find is how it relates to having a heart attack, which I certainly didn't have. I'm only 24! Although, I did have renal failure with my pregnanct....maybe that caused cardiac injury? Anyway, I'm scheduled for a heart cath in January, and i'm pretty freaked out about it. Anyway, has anyone had these changes in their EKG? Anyone have any idea what it could mean?
  4. Amy~ I understand your concern. Sometimes it seems doctors either want to protect us by not giving us info they don't see as significant, or they think we don't know anything, so they don't tell us all of the details. Yesterday, I was at my family doc, and she was looking over reports sent from my cardiologist. I was told by the cardio that my stress echo was normal, but as she read his report she said something like "saw some changes in heart function and cardiac output ..." I didn't know there had been any changes...and, i can only assume he didn't think that was significant. I'm DEFINATELY the patient who gets home from the doc, and then comes up with forty billion questions I wish I would've asked.... Anyway, I don't know much about it all, but just wanted to say I feel your frustration in that regard. It stinks to be worried about all of this stuff....
  5. Amy~ yeah, I've had plenty of EKG's - all were normal before. They did blood/urine to try and determine if the edema is from the toprol, my heart, or my kidneys (I have a hx of renal failure....) but, I'm waiting to hear.....when they call, I'm going to ask more about the EKG - what was abnormal about it, etc. My cardiologist never said anything about an ablation. I think he was considering the cath just as a diagnostic procedure, know what I mean? But who knows if he s even considering that....it's just me jumping to conclusions because he had mentioned doing it before, if i don't improve with meds. Anyway, IU appreiciate all the support. I'll keep you posted.
  6. Well, I finally called my family doctor about the swelling in my feet I mentioned awhile back. Went in today - had +3 edema...and an abnormal EKG. I have had a number of EKG's before, and all were normal. My family doc called my cardio, and I'm going to see him thursday. they also did labs and urine, results should be in tomorrow. My cardio last I saw him said I may need a heart catheter, I'm worried this abnormal EKG might be the last straw, and I'm so scared to death of having a heart cath. Anyone ever have one before who can offer some consoling?And it would figure this is all coming to be so close to the holidays.... Anyway, I'm totally freaking. They didn't tell me HOW it was abnormal, so I'm calling first thing tomorrow to see if I can get any more info. The nurse who did it said "Great!" and then escorted me to the lab, and off handed, I said "so, the EKG was normal...", and she looked at me like I was an idiot and said "NO, it was ABNORMAL, that's why we're sending you to your cardio" and then she ran off, offering no other words of wisdom. Okay, what part of "Great!" was supposed to infer ABNORMAL....??? Anyway, I'm wondering how this wil all unfold. Needless to say, I've been feeling like absolute sh#$ health wise. It's taking a serious toll on me, my marriage, and my little girl. I'm really battling some serious depression because of it all...hopefully this will all lead to answers, and proper treatment, and someday, NORMALCY...but right now, I'm treading water....
  7. so, my hair is totally falling out. I'm not joking. what is UP?!?! I'm totally freaking out. could this be related to POTS? also wondering - do you ladies think that your menstral cycle plays a HUGE role in your symptoms? I mean, I feel like when I'm on my period (sorry if this is too much information....) that my POTS and NCS symptoms are a million times worse. You guys feel the same way? Anyone on oral contraceptives or had a hysterectomy, or anything like that and noticed a difference?
  8. I am one of FIVE, actually, and my mom had no problems. My sisters have all also had healthy pregnancies. I, however, had severe preeclampsia, and after having kidney failure and swelling in my brain, and being in the hospital for three weeks, I was induced at thirty weeks and had a sick baby. She is FIVE and fabulous now and I'm DYING to have another baby, but my fears, my husbands fears, and my crappy health are all huge issues...it *****. that's the bottom line. But I'm hoping now that I'm being treated, I stand a better chance of having a healthy baby....and I can't WAIT! Still, I was so healthy, and in great shape, and active and athletic when I got pregnant...I was never sick a day in my life. I don't know why I got preeclampsia, and don't know if I will get it again. I don't know why I have been sick ever since. either way, I'm 24, 120 pounds, doing yoga, and on DRUGS (prescritpion drugs that is)....so here's hoping i will someday soon be able to have a healthy baby. adoption is also a wonderful option for us. We would love to adopt, and hopefully will someday! It's more a matter of money than anything else right now. Otherwise we'd do it in a heart beat!!!! And I also worry about my little girl. Medically speaking, I'm a train wreck. She's already had heart failure and emergency heart surggery, and seizures as an infant. although she is SO healthy now, I am terrified of ever having to let my little girl be sick again. I don't think I could handle it. I had to be sedated when she had her surgery....nothing's worse in this world than kowing your kiddo is suffering. It's just a real tragedy that we all have to worry about all of these issues....
  9. Oh, How EXCITING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Congratulatoins!!!!! Adoption is one of my DREAMS, that is just so thrilling that you have this opportunity!!!!!!! Congrats, congrats, congrats! and happy birthday, too! Don't worry about everything else, health wise. In my desire to have another baby, I find that worry to be so CONSUMING, but you know what? you have to follow your heart and you will be such a wonderful parent, I'm sure of it. Horray!!!!! Really, I just thinkl that is so so so fantastic. best of luck to you!!!!!
  10. I'm having HORRIBLE swelling in my feet/legs. Is this "potsy"? anyone else deal with this? could it be related to the toprol? i don't know if that's a side effect.... and last night i had HORRIBLE charlie horses, too. should i take a diuretic maybe? any suggestions?
  11. amy ~ i don;t have any different advice, but i'm so sorry you are dealing with this right now, and want you to know i'm thinking of you. please take it easy, and take care of yourself. i hope youo start to feel better soon.
  12. I live in toledo Ohio (home of MCO). I see a lot of talk of Dr. Grubb, and MCO. Is he someone I should see? what's his story? What kind of doc is he? How is he involved in dINET? any info?
  13. Beverly, My heart is breaking for you, your daughter, your husband and your family. Reading your post really touched me. Nicole is so incredibly lucky to have you for a mother. What a blessing you are to her. I'm new here, so forgive me if I ask questions you have already answered. How old is Nicole? How long has she been dealing with POTS. I'm so totally taken aback by how sick she is. How frightening. Poor girl. I am thinking of you and your family. I was recently diagnosed and was given Toprol. I was also taken off of birth control. I am not nearly as sick as Nicole, but I seem to be feeling somewhat better with the Toprol. I'm only just beginning to learn about POTS, so don't really have any advice, but I just wanted to say that you truly are and incredible, loving, and inspiring mother. We should all be so lucky to have someone like you in our corner. I hope you find some answers and Nicole can somehow find better quality of life. I'm sure being home with you is a wonderful starting point.
  14. Amy ~ I don;t have much in the department of advice, but I can DEFINATELY empathize. I too am just afraid i'm going to DIE. it's the worst feeling ever. since we are both newbies, I guess knowing is the key, so we have to just try and learn as much as we can about how to take care of ourselves and handle this. Anyway, I just wanted to say I totally feel your pain. Good luck.
  15. Katherine -- my daughter is actually, believe it or not, FIVE. (*gasp!*) BUT I had severe Preeclampsia with her, kidney failure and swelling in my brain, etc. I have NEVER felt good since so I definately think that I developed POTS and NCS and fibromyalgia post partum. You are lucky you were diagnosed so quickly. I was diagnosed with Fibro abour two years ago, but just diagnosed with POTS and NCS within the last month. I still don't understand how I have BOTH....I won't get into everything, but you can (if you want) read my first post "New here and I know Nothing"... Like you, I think of adoption and foster parenting frequently and do believe that is a very wonderful and exciting option for us, but i am not just afraid of HAVING a baby. I'm worried about caring for one. I'm just so tired....I'm so glad there are people here who understand that. I appreciate you taking the time to answer all of my questions. Thanks.
  16. Amy777~ I'm on toprol right now. I'm not sure if it's helping yet....every day is different - you know. I haven't been taking salt tabs.... I'm just trying to drink a lot of fluids and get to the gym. I haven't been sleeping well, and spend much of my night in a lot of pain.... anyway, you should give me your e-mail. Where are you from? And Katherine - I really appreciate your input. I guess I can start being hopeful that with medication, and the right care, I can look forward to feeling something in the realm of normalcy again someday. I can't WAIT. I want to have another baby so bad, but I am afraid I wouldn't have the energy for an infant anymore. I just turned 24 on Friday. i feel 90. It's so discouraging....
  17. As much as I have been trying to learn about POTS and NCS, I still don't feel like I am really grasping it. I feel like it doesn't seem like a big deal to anyone, or that it isn't a REAL diagnosis. Or atleast that's how people treat me. I don't know, I just feel AWFUL, and I want so badly for my husband and my family to recognize that. I guess since I was diagnosed, I assumed people would ask me how I've been feeling or something, but noones even so much as brought it up. It's really frustrating. I guess I just want my husband to understand what is going on and that it's NOT in my head. Well, anyway - since I'm here, I have a few questions: Is Pots and/or NCS curable? Is anyone getting better? Is it a progressive disease? should I anticipate feeling worse? What about disability - is anyone getting disability for POTS? I guess why I ask is because I'm wondering how seriously the world takes POTS. Is it recognized as a disabling disease? I mean, personally, i feel worthless. I feel like i can't do ANYTHING. I work full time, and when I get home - i literally have nothing left. I'm wiped out. I'm just so tired.... I jsut want to feel human again. I want someone to say - THIS is whats wrong, THIS is why, and THIS is going to fix it. By the way, are you born with POTS or NCS? Or does it just develop over time? I wonder how and when I got POTS. And how do I get rid of it?!?! I know - you are all wondering that...*sigh* I'm just really worn out, and emotionally, I feel like I'm good for NOTHING. O m just too tired.....
  18. Nina~ My cardiologist said the Toprol is somethining I can take during pregnancy, so I'm excited about that. That was one of the first things I asked him when he prescribed it because I want to have a baby so badly. Danielle~ I appreciate you sharing your story. I can't believe it took you eighteen years to find any answers!!!! I know the past five years that I have been dealing with this have been DRAINING, and disheartening to say the least. I couldn't imagine having to go through it another 13 years. And there are a lot of meds that can be taken during pregnancy now. I was on Labetolol with my daughter (among a million other things). Oh, and I am not pregnant now. We thought we would start trying six+ months ago, but it's been one hurdle after another with my health. I had all kinds of tests run, and everything was a mess...so it's been pretty hard for me. so you can understand what a relief it is to finally figure out what is going on. anyway, I really appreciate you guys answering some of my questions. I feel like I can relate to both of you in so many ways. What a RELIEF. After awhile, you really do start to feel like you are going insane - that you are making yourself sick, and that's all it is. I'm so glad to know I'm not insane. What a good feeling that is...
  19. Amy!!! Hi!!! I've been lurking around here for weeks and weeks - since you gave me this website and i finally decided to post. My cardiologist never said POTS...He first diagnosed me with NCS....then said "Postural tachycardia"...which is essentially pots, right? I mean, maybe I'm only assuming..... i guess now i just feel more confused about everything, bnut i read people's posts and think - hey, that's ME. so it's good to know that this is real stuff, and I'm not crazy.... Anyway - how have you been? and your little girl? e-mail me soon, ok?
  20. does pots and/or ncs effect pregnancy? anybody know anything about that? had any experiences with that? my cardiologist said he would want to see me once a month if i find out im pregnant. is that pretty typical? again, so sorry for all the questions....
  21. oh, and also...(sorry!!!) i had a positive ana and the murmur has never been found, even though the ER doctor had said it was very significant, and couldn't believe noone had ever heard it before. so ig guess it's like bin ladin...we can't find it. we'll just ignore it until it kills me, right? doc said he didn't want to do a heart cath because it ould ruin the fibers in my heart and most likely require a pacemaker afterwards. ??? see my confusion? a pacemaker? am I going to need one someday? anyone else have one?
  22. it occurred to me after i left my doctor more than a week ago that i didn't understand much of what was going on....i feel more confused than i was before. i'm 23, 120 pounds, and was always totally healthy -never so much as a cold - until i had severe preeclampsia with my pregnancy. i had to deliver my baby at thirty weeks after my kidneys failed, and i had sweeling in my brain. since then (five years now) i have never felt well. i'm so exhausted, i can hardley keep on top of my child, husband, job...life. i'm completely worn out. also, my arms and legs feel heavy and sore, they fall asleep so easily, i have horrible headaches, stomach aches, numbness and tingling in my arms and legs, sometimes even in my scalp and face. i can't sleep well because my bidy hurts so bad with pins and needles, and muscle spasms. i have dizziness, lightheadedness, and feel my heart race if i only do so much as roll over in bed. anyway, i was diagnosed with fibro two years ago. i think my family doctor got sick of repeatedly telling me i had anxiety, depression, panic, etc. i WAS depressed- depressed that i felt like i was dying and my doc didn't believe. me. so, she sent me to a rheumotologist, who said i had fibro and essentially shrugged and sent me on my way (with a script for vioxx - which my urologist almost murdered him for given my history of kidney failure...) since then, ive been in the er a number of times for chest pain. it never failed, they continued to say "panic" and hand me a script for zoloft, or ativan, or elavil, or xanax. finally, about two months ago, my husband again took me to the er after i came home from my morning run and felt a RIP through my chest down my left arm. chest x-ray showed pleurisy - swelling in my chest muscles. the er doc also said i had a "very significant mytral valve murmur". anyway -very long story short - i had a positive tilt study. heart rate was at 137, dropped to 40, i passed out, and later threw up. the cardiologist diagnised me with neurocardiogenic syncope and put me on toprol. i went the following week for another heart echo (because in the hospital, they couldn't see the murmur on cho and thought it could be from the pleurisy) - and again, couldn't find the murmur - couldn't even HEAR it anymore. However, when I arrived, my BP was 140/90, heart rate was 100 bpm. when i laid down on the table, heart rate dropped to 70 and bp dropped to 90/40. so, finally last week, i was done with the event monitor. went to see the doc, he said my heart rate was on average over 100, and with movement as simple as changing my clothes, it increased to 130's, 140's and got as high as 190 from just going from laying down, to standing up and then walking up the stairs. he increased my toprol, and said i have postural tachycardia. Anyway, I know I'm babbling - but I don't understand. The syncope is low bp, low heart rate, right? The postural tachycardia is high bp, high heart rate, correct? how can I have both? Do I have both? and what now? Anyone know anything about toprol? Any insight would be greatly appreciated.
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