i think this is a thread worth having on the new forum. actually, i think all of them are, but this one particularly... justin ---------------------- ethansmom2002 Intermediate Joined: 07 Aug 2003 Posts: 32 Location: Washington DC Metro Area Posted: Wed Sep 03, 2003 10:24 pm Post subject: Tell us your own personal POTS story . . . -------------------------------------------------------------------------------- This may have been posted before, but some of the newer people might like to get to know everyone better. Tell us your own personal POTS story!! When did you first get sick, and what were your main symptoms? When were you diagnosed? What has life been like for you and your loved ones? How old are you? How do you feel now compared to when you were first diagnosed? What do you believe contributed to or caused your POTS? Are you currently working or attending school, and if so, what do you do? And above all, what do you feel has helped you the most? If you could tell everyone with POTS one thing, what would it be? What are your future goals? We'd love to hear all about it!! _________________ Jessica Age 21 Diagnosed with POTS November 2001 Full time Mom to Ethan, born December 2002 & Part time college student Back to top ethansmom2002 Intermediate Joined: 07 Aug 2003 Posts: 32 Location: Washington DC Metro Area Posted: Wed Sep 03, 2003 10:53 pm Post subject: -------------------------------------------------------------------------------- I'm going to start this one off by responding to my own post here!! I didn't want to put my novel at the bottom of that thread. I am a 21 year old female, and I first got sick in October 2001. I was a healthy, active person who was enjoying life a lot. My boyfriend and I had just moved out on our own, gotten an apartment, and were working full time jobs and going to school part time. It was busy, but I loved it. One day, while I was at work (I worked for a small military insurance company), I was eating breakfast in the breakroom and the whole room started to spin, and I nearly fainted and could barely breathe. It was weird, but I went on with my day. About 2 days later, it happened again while I was shopping at the mall- BIG TIME. Enough that it sent me to the hospital, where they told me I may have asthma and referred me to a Pulmonary Specialist. It was then that I was given Predisone and Albuterol to help with the shortness of breath which they thought was causing the dizziness. ALBUTEROL- can you even believe this? After several days of getting worse and worse, I saw a cardiologist, because I started to have major heart palpitations too (no thanks to the albuterol I'm sure). I wore a heart monitor for a few days, and was told that I had a few palps but it was nothing to worry about. Weeks went by, and I was missing a lot of work from feeling so sick. In November 2001, my mom flew up for a week to help me take care of the house and stuff, and she was determined to find a doc who could help me. She looked in the phonebook and saw a cardiologist who specialized in near-syncope, and called them, we went for an appointment that day. That's where I was diagnosed, and he's the same doctor who is treating me today!! That mother's intuition never goes wrong!! The doc started me on Pro-Amatine and an exercise regimen, and over the next few months I continued to struggle with extreme lightheadedness and shortness of breath. I would wake up in the night and think I was dying. I was fired from my job in early December, and spent mostof my days on the couch with sunglasses on (the light hurt my eyes so badly). Taking a shower was terrifying, I was sure I would faint all alone in the bathroom, so I would stay in my PJ's all day until my boyfriend came home to supervise. It was awful. I had to put school on hold as well. Finally, in January, I took a trip down to Florida to the Mayo Clinic (in Jacksonville, my mom used to work there so I was able to see a few of the specialists on short notice). After a series of tests in January and March, including a tilt table test, equilibrium testing, and autonomic function tests, they concluded that I had a mild case of POTS, and agreed with my doc's diagnosis and treatment plan. So I returned home with renewed confidence, and with a little more medication adjustments, I began to slowly creep back to a healthier state. In April 2002, I was stil unable to work, but having 50/50 good and bad days (much improved from 99/1). Things were getting rocky between me and my boyfriend, because I had had no income since December, and had become a completely changed person because of this illness. It was a very dark and depressive time in my life. He moved out for a while to think things over, and it was during this time that I discovered I was pregnant with our son. We talked it out, and agreed that this was worht working on, and so we proceeded with life as it came. My pregnancy was wonderful, I felt great, and slowly weaned off the medications completely by the end of the 9 months. I was working part time and going to school for the first time since I got sick, and it felt good to be normal again!! We moved out of our apartment and bought a house in the country, and little Ethan James was born December 15, 2002. I wanted to nurse him, so I risked staying off the meds, and continued to feel reasonably well. In May of this year, I began to feel lightheaded a lot again, around the time the weather warmed up. I tried to stick it out, but I paid a visit to the doctor over the summer, and I started back on the beta blocker. Within a week, I had to go back on Florinef as well, because I was having major blood pressure dips and I was afraid I would pass out with the baby. I just started that about 2 weeks ago, and for the past few days have been feeling quite a bit better. So that's where I am right now!! am currently not working, but I am going to school 2 days per week and taking care of my son 24/7. My POTS doctor has offered me a job this fall, so I'm hoping to work in his office part time at that point. My boyfriend David and I are doing much better now, our 4 year anniversary is coming up this November, and having Ethan has changed our lives for the better. I feel that POTS has made me a stronger person, and I never take things for granted anymore. Things as simple as shopping, or riding a rollercoaster, don't come easy to me. I believe that I am genetically predisposed to POTS, because some of my family members (including my mom) have had a wide array of symptoms that closely mimick POTS, only they don't have it full blown. I'm the lucky one I guess!! I also have had things happen during my lifetime that I can now relate back to POTS. I had bowel and stomach problems from age 10 to age 17, and was finally diagnosed with food allergies. I also landed in the Emergency Room twice with unexplained Tachycardia where my resting heart rate shot up to over 200 bpm. I've always been heat intolerant, and fatigued very easily. Now it all makes sense!! I feel that what has helped me the most is to keep a positive attitude, and going on with as normal of a life as possible is essential to the well being of a POTS patient. My future goals are to get my Ph D in Photography, and either teach it at a college level or make it a career to become a practicing photographer. I'd also like to have more children someday, and get married (hmph, talk to David about that one!!). I beleive that my quality of life will continute to improve, and I hope that someday, enough will be known about this condition that we can live a completely normal life. Thanks to anyone who took the time to read my novel here . . . and to think this is just the abbreviated version!! Can't wait to hear your stories!! _________________ Jessica Age 21 Diagnosed with POTS November 2001 Full time Mom to Ethan, born December 2002 & Part time college student Back to top poslisa Newbie Joined: 03 Sep 2003 Posts: 3 Location: Upstate New York Posted: Fri Sep 05, 2003 10:38 am Post subject: -------------------------------------------------------------------------------- Hi Jessica - Thanks for starting this thread. I find it very interesting to see how other people came about finding out that they have POTS. During my 2nd pregnancy back in 1995 (I was 26) I started becoming very short of breath while I was 4 months along. I was ordered to wear a holter monitor and it was found that my heartrate would go up into the 160's - 170's and stay there for a couple of hours at a time. The slowest my heartrate would go would be during sleep and even then it was in the high 90's to low 100's. It was at this time that I was diagnosed with Inappropiate Sinus Tachycardia (IST) My cardiologist (who I also worked for) started me on a betablocker which helped a little but I would still have break through's all the time. After the pregnancy I went through stages that I would be off the beta-blocker due to having postpartum hypothyroidism, but the tachycardia and shortness of breath always came back. In 1999 I started talking to my cardiologists about getting pregnant again and was advised against it due to how fast my heart would go. They feared that if we were unable to control the heartrate that I would end up with a cardiomyopathy. I was told about ablations and that if I had one and it worked I could get pregnant again. So, in Sept. of 99 I underwent my first ablation. They found out that my tachycardia was caused by the sinus node and I had an unsuccessful sinus node modification. We gave up on getting pregnant and decided to adopt a beautiful daughter from China. While in China I absent-mindedly forgot to take my meds with me and I felt fine the entire 2 wks. over there. When I got home I just continued to stay off of them. I had left my job to stay home and watch children and was feeling fine for the first year. In about December of 2002 my symptoms came back worse than I have ever had them. I would become so short of breath and lightheaded anytime I walked up the stairs. I would have to lie down at the top because I felt so terrible. I became extremely exercise intolerant. In 5 months time I put on about 25 lbs. In May I went back for a 2nd sinus node modification which at the time we thought was successful. About 3 wks. later I was standing in line at the grocery store and became extremely dizzy and short of breath, I checked my pulse and it was 172. I was started back on meds but we found that the meds that used to work for me didn't work anymore and we had to double things up and add more to them. I still felt horrible everyday. My EP and cardiologist both suggested going to Philadelphia for another ablation with a strong possiblity of a pacemaker. In August I decided that that was the route I was going to take. My husband begged me to get one more opinion (he figured the 6 cardiologists that I worked for were enough) and so I went to another EP for an opinion. After talking to me for 1/2 hour he told me he thought that I had POTS and should stop my meds and try Proamatine. I went back to my doctors who contacted Dr. Grubb in Toledo and he also said that I have POTS. I'm so thankful that I went for another opinion and although I still trust my cardiologists with my life it just shows you that there is so many different conditions out there that it does not hurt to get other opinions. I had my tilt table test and failed it - almost passed out with a BP of 62/38. Now we are trying to decide what is the best meds for me to take. I'm hoping that we find the right one soon. Here are my major symptoms: Tachycardia, shortness of breath, lightheadedness, fatigue, exercise intolerance, irritable bowel (which we always thought was because of the meds), occasional chest pain with any aggravation (happens frequently in this household!) and fatigue, fatigue, fatigue! I'd like to hear what main symptoms others have. Lisa Last edited by poslisa on Sun Sep 07, 2003 8:31 pm; edited 1 time in total Back to top SparkNik Newbie Joined: 17 Jul 2003 Posts: 9 Location: Lynbrrok, NY Posted: Fri Sep 05, 2003 5:46 pm Post subject: -------------------------------------------------------------------------------- i am testing this out first becaue I am never able to post so this is just a test before I write my story Back to top SparkNik Newbie Joined: 17 Jul 2003 Posts: 9 Location: Lynbrrok, NY Posted: Fri Sep 05, 2003 5:54 pm Post subject: -------------------------------------------------------------------------------- Ok now I can post. Anyway my condition started back when I was 19. I started to get palpatations and anxiety fro no reason what so ever. So I went to a cardiologist and was told I had Mitral Valve Prolapse. So I was put on a beta blocker. I did well for 5 yrs but had alot of problems with anxiety so I was then put on a very small dose of Paxil. I did well again (never great but was able to function). Then last year out of the blue I woke up in the middle of the night with the oddest feeling in my body and my heart was racing so fast and pounding, I thought that I was dying. From that day on it was **** on earth for me. I had so many debillitating symptoms that led me to take a leave of absenced from work for 4 months. I was experiencing tachycardia, palpatations, constant diarrhea,stomach pains,adrenaline rushes,panic attacks,nausea,dizziness,jittery,and just plain sick all over my body. I am now on 75mg of Toprol and 25mg Paxil CR. I also take half of a .05 Klonopin before bed to help me sleep. I am doing better enough to be working, but I am not the same person I was last year. This condition has taken alot away from me. The only good thing that came out of this was I met wonderful people who share the same condition, and have become good friends with them. Well that is my story. Hope we all get some relief one day. Back to top Lisa Newbie Joined: 28 Jul 2003 Posts: 7 Location: Long Island, New York Posted: Sun Sep 07, 2003 7:38 pm Post subject: -------------------------------------------------------------------------------- I am a 17 year old girl and I am a senior in high school. I remember exactly when the POTS started. It seemed like I was fine one second, and then the next I could barely breathe. I was an athlete. I was able to run without being tired and I was in great shape. In 8th or 9th grade I remember when we had to run a mile for gym class for some fitness test. I was the 2nd one finished and I did it without stopping--I jogged and ran the whole time. No tiredness, no shortness of breath, no palpidations. I was just a normal althete. In 9th grade I made the JV basketball team. It was great--our team wasnt that good but we still managed to enjoy ourselves. It's so wierd, but it all seemed to change during one game. I was running down the court when I felt this strange feeling in my lungs--this feeling like my lungs weren't accepting air. I kept trying to breathe and catch my breath but couldn't it just felt like it wouldn't go down far enough in my lungs. My coach must have noticed my stuggle because she pulled me out of the game. I rested for the rest of the game. I thought I was dying or something. I stuggled for the rest of the season. Sometimes I just tried to play because I just wanted to play so bad. I didn't want anything to be wrong with me. I would exhaust myself to the point of having coughing fits. My heart would race so fast and I would feel so faint--I would be in this dreamlike state and I would feel like I wasn't there. I didn't want to accept the fact that something was wrong. I tried to explain to people about what it felt like, but it was really difficult. My parents were getting concerned so they decided to bring me to the doctor. I was diagnosed with asmtha and was given Albuterol and 2 other inhalers that I had to take everyday. I was continually sent to breathing tests after breathing tests. I had to blow through millions of tubes and machines. They all showed that I didn't have any kind of breathing problem, but basically the doctors didn't know what else to do so they just kept me on the inhalers. My doctor then thought that something was wrong with my vocal cords and that what was causing the difficultly breathing. I had to go through this horrible thing where they stuck this tube up my nose and down my throat to check my vocal cords. It hurt so incredibly bad that I cried afterwards. But they found that everything was normal. The next step was a stress test. I had to run on a treadmill while these 2 pulmonary nurses watched and could see what happened. After 10 minutes I had to stop. My heartbeat was past 200. I was flushed and couldn't breathe. I got that faint feeling again. But still no answers. Then I was sent to a cardiolgist. I was given a heart moniter and was instructed to place it on my heart whenever I felt the palpitadions. Then I had to call this place and I had to place the machine up to the phone and sent over what the monitor had recorded. A few times the attendants accepting the heart monitor messages called my cardiologist because they were concerned. My doctor's response was that the attendants were "probably new" and that everything was "pretty much normal." He then said that "if I needed anything else to call him," which basically meant that he was giving up on me. I began to grow tired of all of this. I was so tired of explaining it to doctor after doctor, so tired of being misunderstood. I even began to believe that maybe it really was all just in my head, that maybe it was just something that I was making up to get attention or something. I was really hard on myself. Then I was sent to a new cardiologist. He ordered me to have another test and I protested. I was thinking, well what's the point. I was all tested out. I just didn't think it would matter. But I went through with it anyway. My doctor had scheduled a tilt table test. I felt so horrible during the entire time. I didn't faint but I was very close. All of my symptons that i had been having for so long were finally seen by a cardioologist. I finally had a name to what was happening to me--I was diagnosed with POTS. That was 2 years ago. I've been doing a lot of research and I am still learning. I was doing so great for awhile but lately it's been pretty bad. I don't play basketball anymore, and now I give a doctor's note to my gym teacher that says I don't have to run the mile. The school nurse keeps gaterade in case I am not feeling well. The only explanation for this that me and my family have come up with is the fact that at the end of 7th grade my appendix burst and I had to have surgery. I have read that POTS can be caused by a severe body stressor such as surgery. Now, I'm just trying to live day to day. Some days I feel great, and I forget that I even have a medical condition. I even still ride rollercoasters without feeling too badly, so maybe I'm one of the lucky ones. Other days I just feel so crappy I don't even want to move. Walking upstairs is now an obstacle and I'm starting to forget what it's like to be "normal." I can barely remember the days when I could walk upstairs pain free. It's hard to remember what it feels like to be able to breathe all the time. I can't even remember what it's like to excercise and actually feel good, instead of bad. It amazes me that at one time I actually ran a mile. I wonder what that feels like? I thank you for letting me share my story and I wish you all well.
