danelle Posted March 30, 2004 Report Share Posted March 30, 2004 Hi everyone, I just found this site and it is overwhelming. I never thought I would find anyone quite like myself. I am so emotional right now, reading everyone's stories and concerns.I am a 37 year old RN who has been misdiagnosed for 18 years now. I was first diagnosed with MVP, then it was SVT, PAT, then we went to SA node dysfunction and inappropriate sinus tachy. I was sent to a MD in CHarleston for my IST and SA node problem, he dx me with POTS and said that an ablation would have been bad for me-very bad. I have an appt with Dr. Blair Grubb in Toledo, Ohio in July for more on this crazy POTS thing.Here is a quick overview of the last 17-18 years of my life. It all started when I was 18-19. I married early-right after high school and had my first child 14 months later. The tachy started after this delivery. The cardiologist just told me it was nothing to be concerned with even though my heart rate would go from 48 at night to 190-200 during the day.?? 2 years later I got pregnant with my second child. I had daily episodes of not only tachycardia but also premature beats and very irregular stuff. I delivered him 6 weeks early. Things got somewhat better after he was born but then fired back up with my heart rate racing from 60-70 while sitting to 150 just walking to the living room!! This has been my usual for many years. I have been on atenolol now for 16 yrs. but I still have break though tachy and very irreg rhythms that make me feel like I'm going to die. I have virtually been able to do NOTHING as far as physical activity other than work parttime which literally gives me out. I am getting extrememely depressed with not being able to do anything, some days even just pick up the house. I am tired of living this way. I have started drinking tons of water and gatorade with salt added and lots of salt in my diet. I tried the compression hose but they didn't seem to help. I am tired of my husband being my "security blanket". It has gotten to where I won't even go to the store without him in fear of an attack. I live with constant fear and panic of this crazy thing. I am not even sure they got the diagnosis right this time. But I have done some research and I sound very classic. Does anyone get very weak, shaky, sweaty with this even if their blood sugar and BP are ok? IT's like I have no bones in my body. I tried a very slow monitored exercise program here at the cardiologist office but couldn't do it. It wore me literally out. I only weigh 120 but have no muscle tone what so ever. My symptoms have gotten much worse over the last year. I could go on and on but won't take up everyone's time, I just feel so scared that I'm gonna die from the arrythmias and feel so alone because noone understands. The doctors here-cardiologist and neurologist- have never heard of POTS which doesn't help. I went to the ER the other day and that was a joke. DOes anyone know about Dr. Grubb, what I can do to make this better, what causes it, any kind of support would be wonderful. My husband's support is growing thin and it is causing problems for us. I did check out POTS place but I need more info. I feel like I am an old lady and I AM a prisoner to this thing. PLEASE HELP!! I AM DESPERATE FOR HELP!!! Thanks SOOOOOO much to anyone who will listen and I wish you all luck for the future. Quote Link to comment Share on other sites More sharing options...
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.