danelle

DITTO DITTO DITTO DANELLE

Hi, I'm having a bad day today. Unable to work!!urgh!! Can't type too long, makes my sx worse? I'm looking for someone in my area that has POTS, so far everyone I've talked to around here has never even heard of it (I work at a large hospital too!) danelle

I take 50-62.5mg of atenolol(tenormin) per day-depending on my tachy. I also take clonazepam .5mg up to 4 times a day as needed for anxiety. I have been on the atenolol for 15 yrs now. I started out at 6.25 and gradually had to move up to keep the tachy down. It keeps the fastest stuff away but even still, i get spells up to 160 with lots of other arrythymias as well. I do stay tired but I could NOT survive without the tenormin. Yes, my BP usually runs pretty low. Danelle

Thanks to ALL of you once again! I will probably try the 20-30 hose out first and get used to them before I go back to the 30-40's. About the anxiety and panic attacks, I have been on clonazepam for several years now. Sometimes it helps and sometimes it doesn't. On my really bad days, it just barely takes the edge off of the panic-that's when i load up on it too! Even though I have had Tachy and wild symptomatic arrythymias for 17+ years, most of the time when the bad ones hit me I get panicky-just like it was the first time all over again-URGH!! SOme days I can deal with it better than others. Thanks for all your help, suggestions, but most of all your support. Talk to you all again very soon!! Danelle

Thanks SO much to all of you who have so kindly responded to me today. You will never know how much it means. I guess I'm not all alone after all. Ernie-Thanks for the info on Dr. Grubb, wish I could get in to see him sooner. Nina-MM- Thanks for all the sites full of info. I will research them all! Shayden-How does Dr. Grubb make a dx so fast??Thank God you found him-heart transplant- good grief that is a scary misdiagnosis!!!If you don't mind my asking, what is your critical POTS situation? (I ask only because I feel that way myself) Merrill-what compression measurement do you have on your hose. I tried the 30-4o and they were way too tight, didn't stop the tachy and I was afraid as tight as thery were that I was gonna throw a clot!! Mindy- your info was so touching. I will ALWAYS remember what you passed along. My husband is another story. It's a long one. Sometimes supportive, sometimes not. We've been married for 20 yrs. He doesn't show much interest in learning about my problem. More later>>> Tearose-Odly, I do feel at home here and what a blessing it is!! I will do as much research as I can before July. I want to know as much as I can before I go to see Grubb and I pray he can make my life more manageable and give me a better quality than I have now-It could be worse though so I feel bad for complaining sometimes! Deanna-I definately agree-POTS *****!!!!I will remember my list to take with me-however-sometimes the drs don't listen anyway. Once again, I can't express enough how much this has meant to me. I feel like I have just found a new extended family. If there is anyone I can lend an ear to please let me know, I'm sure I will need one again very soon. My thoughts and prayers are with all of you-my new POTS family!!!!! Keep the replies coming!

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.