JaneEyre9

Hi Amouna, I cannot give advice about getting florinef, but I welcome you here and hope that you are able to get some improvement in your health. Glad you found this place! Kristen

I'm thinking of you and your husband today, Jan.

What a fantastic post, Corina! I am so thankful to be here and know all of you. I'm thankful that POTS isn't a terminal illness. I'm very grateful that i was finally diagnosed this year, because pre-diagnosis I was so sick and felt like i was a miserable failure due to my constant fatigue and inability to perform well. I'm so glad I live at home with my parents because it really helps to have people who will take you to the doctor, do your shopping, wash your clothes, bring you fluids in bed, and pay your rent for you! I'm very thankful for my close friends who have patiently listened to me, learned about my limitations with me, distracted me with fun quiet activities, and prayed for me. I'm thankful that my bosses have been very understanding and that they specialize in cardiology and are able to 'get' why I am sick. I'm especially thankful I fainted in front of everyone in my office because for a long time a lot of them thought I was making a big deal out of nothing. Like Amy mentioned, I'm super thankful to get time to SLOW DOWN. I too appreciate simple things in life so much more now. I feel like a kid again...appreciating standing, walking, riding in the car, time with my friends and family like i never did before because before i was too tired and sick and everything felt like a chore. Now i'm free to sleep as much as my body needs and say 'no' when i physically cannot do something. Also, i've learned how to be more patient with myself and with others. Thanks for the chance to post this. I have been so blessed by all of you. Kristen

Jan, I will pray for your husband's healing and for you and your family. Kristen

Bamagirl, You are not alone. We are all here facing the same feelings of uncertainty and discouragement about our futures. I bet many of us lay in bed, as i do now, with the laptop on our stomach wondering if we'll ever have the energy to do the things we want to do. This illness is very unpredictable and so it is so scary. I understand your feelings and hope right along with you that someday doctors will figure out how to treat this stuff. It seems unsatisfactory that in this day and age people like us are suffering from a disabling condition with no cure. It almost makes me laugh/cry when my primary doc says, "well, we both know there is no cure right now." How can there not be!? I am right there with you, but there is hope that we can all improve. We just have to hang on to that and keep pressing on each day. That's the only way to make it through these dark times. I like to listen to a song by Third Day called "tunnel." clip at: http://www.thirdday.com/music/#player or second track on the homepage: http://www.thirdday.com It reminds me that life keeps changing and we have hope for the future. Kristen

Lauren, it's so frustrating that they cancelled on you at the last minute. I know the feeling of being frustrated and discouraged. it actually made me feel a lot better to read your post and emily's and to know i'm not alone in my feelings of discouragement. Thanks for just being there and being honest and sharing. i don't know what i'd do without this place. kristen

Hey Sophia...thanks for posting that for me I especially liked: "If it doesn't clear up in a week, give me a call." (I don't know what it is. Maybe it will go away by itself.) and "Well, we're not feeling so well today, are we...?" (I'm stalling for time. Who are you and why are you here? )

Emily! You are so thoughtful to keep track of what is going on with me. I never posted actually about the HIDA. I'll PM you the story about the tests and whatnot. I found no new body under my tree...but i did find chocolate covered pretzels...which is the next best thing.

Merry Christmas!!!...here's to hoping those new bodies are under the tree. Wait, that would look sort of creepy. Nevermind. Kristen

That is so sweet! I always think POTS people should get extra credit when they do kind things because it takes 4 times more energy than a regular person (conservative estimate) I wish i could wear a sign that says that so people would know how much effort it takes. Persephone or Lauren, do you have the list of the doctor phrases? I'd like to read it Kristen

Hey Lauren, An elongated T-wave means that your ventricles are taking a longer time to relax than normal before the next beat. These electrical patterns can mean a lot of things. I would suggest going to see an electrophysiologist because they are more specialized in electrical patterns and what it means for your particular case. Heart problems are nothing to mess around with even in young women. (Though, i just read a testimony today of a young woman who had similar symptoms and was also ignored in an ER, so it seems you're not alone.) It's not something that you should be scared of, but something that you should pursue and take seriously. As far as suing goes, if you want to do it, I would suggest contacting a reputable medical malpractice firm. They can probably give you a consult over the phone and let you know what your options are. On a more emotional level, i'm so sorry to hear you were not treated properly at the ER and that your doctor didn't explain your test results to you. I hope that you're able to get more info and clear up your concerns about everything soon! Doesn't help that all this is happening around the holidays Hang in there! Kristen

I've had this for several years off and on...actually before i started passing out. I saw a urologist and was brushed off as fine. I have problems with diarrhea because of IBS too. I think everything in my body works a little to fast for my taste Glad to know i'm not alone. It can be a little scary when the urge is so strong and sudden. I used to commute about an hour to school and i remember many panicked trips around the parking garage looking for *any* space so i could run to a building and use the bathroom. The same thing happened like clockwork when i went to rehab this fall. I could count on having to urinate badly about halfway through the trip. Kristen

I think responding at 4:30am helps support that I can understand what you're going through! It's so frustrating...especially when everything that normally works stops working. Hope you're sawing them off and stacking them in a corner by now! Kristen

Congratulations, Persephone! What an encouraging uplifting post. Thanks for sharing! I'm so glad you were able to make that long walk. What an accomplishment. You're right. We all need empathy!

I had a terrible case of mono when i was 15....Was treated with steroids because my throat was swelling shut (had strep too). I don't think my body's ever been the same since.

Wow, Ernie. That is a very scary experience! I cannot believe you were kept upright for so long after fainting! That doesn't seem right at all. Was this a different specialist than the one you saw on Wednesday? I am amazed that you have the strength to type today after all that happened to you on Friday. Thanks for keeping us updated. What is even more amazing to me is how you endured the painful surgery on your neck with no anesthetic! You are so strong. Were they at least able to tell you anything helpful from this test or the other one? I'm glad that you made it through this week. I can't imagine how scary it must have been for you. I'm at least glad your friend was there to help you and keep an eye on how you were treated. Kristen

Hey Melissa... I'm so glad that the cpap machine could help your energy levels! I'm hoping it exceeds your expectations. Here's to a fixable problem Talk to you soon....thanks for checking in on me earlier. I was feeling down this week. Kristen

Sorry you're so sick, Nina! Take care and get lots of rest. and chocolate. that helps me Kristen

Hi Amy, I'm facing changes in my own life, so i empathize. It is so hard to deal with not working. For a while I was on a break, but I am slowly facing the fact that i cannot just go back full time in January. It is hard to deal with emotionally. I think you are being very wise and positive in the way you are handling this. Go easy on yourself if you feel down. This may be a positive change for you, but it will have its tough times. Hang in there! Kristen

Hi Ernie, I really admire your bravery. I can't imagine how you must feel, so I will just say that I care and that I appreciate your thoughtfulness and maturity in the way you posted here. Thank you for sharing your secret with us. Sometimes it helps just to tell others who care for you. I hope the tests can help the doctors improve your treatment. Kristen

Happy Birthday, Melissa! I'm thinking about you!

Nina, that is awesome! Reading your story really made me smile and gave me encouragement. Hope you have a very speedy recovery back to baseline I know ice cream always helps. Kristen

I don't have stiffness, but i do have tachy in any position. That is pretty typical POTS. Kristen

Primoz, Exercise will definitely raise your heart rate, so you have to do it very carefully. I am in cardiac rehab, and they started me out very slowly doing just a few minutes walking (slowly!) on the treadmill. They did not add weights in till much later (a couple months). The weights were incredibly light and i lifted them while lying down. The key is to really listen to your body and if you start to not feel well, stop what you are doing and lie down if needed. Exercise is really important for managing POTS, but it is also very tricky because it can cause episodes like the one you descibed. Kristen

Hi Stacey, I had had a regular stress test on a treadmill. It was really hard, i won't lie, but the people who gave it to me knew i had POTS and they let me lie down afterward, and I had fluids and food. I did not have a big crash after the test. I hope that everything goes well for you. It may be uncomfortable, but maybe if you communicate with them, they will be able to give you as little medicine as possible. Also, you might want to see if you can have some IV fluids after the test since you will (i assume) have an IV in already. Just an idea. good luck, Kristen