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Fallon2120

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  1. Congratulations! That is great! I don't have any adive because I don't have children yet, but I am very curious to hear what others say. My husband and I are going to start trying to get pregnant this Fall, and since not a lot is known about POTS and pregnancy all we have to go on is what others have experienced. Good luck! I am sure things will be just fine. Keep us updated. I would love to know how you are doing!!
  2. Thanks for the advice! I still don't feel very well today! I called and talked with the nurse at my EP office, but I haven't heard back since she talked to my doctor. What you said makes a lot of sense. I guess I was just surprised at how bad I felt for what little blood they took. We did have to fast so I hadn't had anything to eat since 9 o'clock the night before, and only had a drop of water yesterday morning so I could take my meds. I still feel very tired and kind of out of it, but the tachycardia hasn't been as bad today. Thanks again. It's nice to know I'm not alone, and more importantly not crazy
  3. I am just a little curious to see if anyone has issues after having their blood drawn. A few weeks ago I had to have a bunch of tests run, so they took a lot of blood. Of course I felt like crap afterwards, which didn't surprise me. They had taken a ton of blood. Well, today at work we had a health screening for our insurance company, they only took 2 vials, and I feel awful My heart has raced all day, I have a horrible headache, I'm clammy, my hands are freezing, and I feel sick to my stomach. Does anyone else have this after having their blood drawn? I was just wondering if I need to call my EP. I am drinking some gatorade and laying down, but I still feel pretty crappy. Thanks again!!
  4. My EP recomended trying one of birth control pills like seasonique to help with the POTS symptoms. I took it for awhile and loved it. But, my body got used to it, and wasn't stopping my periods. So I tried YAZ. I hated YAZ. I tried the ring, but I didn't like that either. I could still feel it even though they say you can't. I have tried the patch but it made be sick. I am on just plain old Ortho Tri Cyclen right now and it has been working fairly well. My husband and I want to start trying to get pregnant in the fall, so I am really looking forward to that. Many people have told me their POTS symptoms have gotten better during pregnancy. Then after we have a baby I think I am going to go for the Mirena. I have heard great things! Good luck! I know how hard it is!
  5. Thanks ladies! It is so nice to know I am not alone and there are women out there who have had healthy babies We want to start trying towards the end of summer, beginning of fall. Right now my EP is doing some research and has been in contact with an md at the mayo clinic. I have an appt in June to kind of get a game plan set, as far as whether or not he wants to change my meds before pregnancy, how often he will want to see me when I become pregnant, and how he and my OB can work together to hopefully have a good outcome. There is still so much that is not known about POTS, so there really isn't much known about what do do with us when were pregnant. Thanks again!
  6. I don't have the shaking, but I do have the tachycardia at night. It's so funny you mentioned that. Sometimes when I lay in bed at night my heart will just pound. I always go to bed very cold, but then a few hours later wake up burning up. I am glad I am not the only one.
  7. I'm sorry, I didn't mean 30 weeks. I meant to type 37. My OB and EP said they would probably go ahead and schedule the c-section for 37 weeks, but if things were going well then they would probably let me go to 39. Thanks for the replies. That is very encouraging!
  8. My husband and I want to start trying to get pregnant at the end of the summer. I was wondering for those of you that had POTS before you got pregnant how your pregnancy went? Did you have hyperemisis graviderum? Did you have a c-section? At any point did you have to go on bedrest? I'm just curious b/c right now my EP isn't quite sure what to do with me when I get pregnant. Right now he has told me I will probably have to have a scheduled c-section at 30 weeks and that they will have to watch me really closely. My obgyn said I can stay on a beta blocker they will just do more ultrasounds. Oh yeah, did you take any meds while pregnant? What were your md's suggestions?
  9. I started with water aerobics a few months ago b/c my EP said that would be a good way to start and now I work out about 3-4 days a week. I do the eliptical for 30 min and then the bike for 30 and do some weights with my arms. I just bought a polar hr mon and that helps. I am exhausted when I get done, but I do feel a difference when I don't go.
  10. Thank you all so much for sharing with me! I can't tell you how glad I am to have found this site. It's hard enough to tell people you have something wrong with you, but then to tell them you have something they have probably never heard of makes it 10x worse. I hope someday we all we find the treatment we have so desperately been looking for. Hope everyone is doing ok Well, as good as can be expected anyway...
  11. Hi! My name is Fallon. I am 26 yrs old, and was dx with POTS when I was 21. I also have MVP and GERD. All of my problems started when I was 19. I was a freshman in college, and one April morning I woke up feeling awful. I felt like I couldn't even get up enough energy to get in the shower and every time I stood up I felt like my heart was going to beat out of my chest. I was away from home, so my boyfriend (who is now my husband) called my parents that evening when I wasn't getting any better and they told him to go ahead and take me to the emergency room. My dad has high bp so I thought maybe I did to. We get to the ER and of course I'm thinking great we are going to be here forever, well we were, but not because it took forever to be seen. They took me back to the triage area and checked my vitals and the nurse turned white as a ghost. She started yelling for people to get in there and the next thing I know they are throwing me on a gurney and rushing me back into a room. When she checked my heart rate it was 220. I guess they thought I was about to have a heart attack. So here I am, scared to death, have a million people around me, and still feel like crap. They get me hooked up to all the monitors, starts IV's, and then come in to draw blood, take x-rays, and ekg's. They first put ice on my face and had me bare down, of course that doesn't work, so that start trying different meds in my IV. Nothing was working. My parents were about 2 hrs away, and my poor boyfriend who was trying to be so strong for me, I could tell was scared to death. After a number of meds they tell me they are going to try Adenosine, which if any of you have ever had, you know how horrible it is. Basically your heart just about stops in hope of getting it back into a normal rythym. They gave me that 3 times, and my HR would go from about 220 to 20, but then right back up again. I had to go to the bathroom so bad b/c of all the fluids, but they wouldn't let me get out of the bed. The nurse tells me I have to use a bed pan. Great way to break my boyfriend in! So anyway, after the Adenosine, they tell me they are going to try one more thing and if that doesn't work then they were going to have to cardiovert me, and as soon as I found out what that was, there was no way that was going to happen. So finally they put some metoprolol in my IV and after the third time it slowed down and stayed down. All of my tests were normal, they kept asking if I had used drugs, I was like if that was the problem do you think I would be here?? So at about 2 in the morning I begged them to let me leave, finally they agreed and sent me home with a rx for metoprolol and an appt with a cardiologist b/c they had no clue what had happened. So I make an appt with a cardio in my hometown, w/in 2 days. My first cardio appt my HR was still in the 130's, so he increased my meds and set me up for an echo and a holter monitor. The echo showed nothing (so he thought) and the holter showed even in my sleep my HR would go from 50-140. So when he couldn't figure out what was wrong with me he said I was just a young girl and it was probably hormonal. So here I am feeling like crap, tired all the time, no energy, horrible headaches, etc...So on to my 2nd cardio. He ran all the same tests, changed me from metoprolol to toprol xl. They would work for awhile, but then after the max dose would stop. He ran the same tests, thinking maybe it was my thyroid, but that was fine. So then on to a calcium channel blocker. That was awful. I had the worst dreams I think I had ever had. So then they put me on propanolol. Meanwhile I have never weighed more then 110lbs in my life and no matter what I did kept gaining wt. So that md turned me over to my 3rd cardio, my 1st electrophysiologist. He did another echo and found the MVP, but he didn't think that was the sole cause of my problems. So he ran some more tests, of course nothing turned up. So he puts me on Atenelol. Starting I was taking 50 mg a day, but this did nothing. So eventually he raised it to 100mg once a day. But, when he didn't know what else to do with me he asked me if I thought I needed to see a psychologist b/c he thought maybe it was "all in my head." Ok so I am PISSED! I walk out on him. The finally I meet Dr. Klein!! He is the best. After the 1st meeting, and him asking me questions no one ever has like what color my pee is, how do I feel when I stand up, how do I feel when I'm on my period, all of these crazy questions. He says I have one more test (which was the tilt table). My HR was in the 220's w/in 2 minutes. They didn't even finish they test and he said I know what you have, you have POTS. I never thought in all my life I would be happy to know something was wrong with me. For so long I just thought I would have to just get over it. He explained things to me, kept me on the atenelol and was GREAT!! Like anyone else I have good days and bad days, mostly good as long as I take my meds. I am still trying to build up my exercise tolerance, and I need a lot of sleep, but I guess it could be worse. I take Nadolol now 40 mg in the morning and 20 at night, and 2.5 mg of midodrine 3x a day. My md seems to think my POTS came from virus, maybe mono. I can't tell all of you how happy I am to have found this site!! You are all such great people. I was just wondering how everyone else finally learned they had POTS and if you are on meds, which ones? Thanks everyone!!
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