joiedevivre516

It's so nice to see these new responses and to meet so many wonderful new people! Thank you!! I hope to be able to talk to you all more as I continue along this new and challenging journey. Thanks for your support! Kate

Hey y'all: I was supposed to go on vacation today - fly up to Rhode Island for 10 days to do some sailing and see my grandmother, but my POTS got so bad throughout the day that I couldn't even make it into the airport, and my mom took me straight back home to bed. We're going to try to go tomorrow morning, but of course that means we won't really get to do all the Easter stuff that we were hoping to. To make matters worse, my dad's all angry at ME for messing this up (even though he wasn't coming up to Rhode Island in the first place, and there was NO financial penalty for switching the tickets to tomorrow), and I'm just getting so frustrated with his ignorant "you can control this; it's your fault; why are you being so weak" attitude. It just breaks my heart that people I love are disappointed in me for something I can't control. Kate

Thank you SO MUCH, Diana! I can completely identify with EVERY feeling you've had regarding your music, and I can't tell you how nice it was to see this post today! So many constructive suggestions!! I'm definitely going to try the abdominal binder, and I'll also keep going as much as I can and just plug through! You are just great - I feel like you've given me a new lease on my life! I wish you ALL the best with your music! I've heard that seratonin really, really helps curb the POTS symptoms, and it's a proven fact that music releases seratonin, so that might be why you feel that "high" you were talking about! Let me know how things go for you! Kate

i have one and i wear it all the time, even though i'm 18 years old and don't feel like it's the world's most fashion-forward thing! i drive, and i can't risk being somewhere by myself or on the college campus by myself and blacking out, particularly if unaware paramedics gave me adrenaline!! that's incredibly dangerous for anyone with POTS! i know what you mean about not wanting to be reminded, but sometimes when i DO forget and i'm not taking care of myself, i see it and i'm reminded to drink some water or eat some salt! overall it's been a really good, helpful thing for me. good luck!

Hey Amber!! I'm SOOOOO sorry you're not feeling well! Are you sure it feels like it's in your muscles, or does it feel like it's just under your skin? If it does, it could be a sun reaction - I know it's really hot where you are. There's also the possiblity that it's Restless Leg Syndrome, and that doesn't always just happen in your legs. Good luck and let me know how you're doing!!

My problem with playing piano is that I get really dizzy sitting up for such a long time - I used to practice for six hours a day; after my injury I was down to two at a time (but still six total), and now I'm LUCKY if I even get two in. I had already accepted that I wouldn't be able to major in piano in college like I'd originally planned, but this is waaay worse than I bargained for. I also have extreme muscle weakness so I can't really milk the difficult and strong passages like I need to (bye bye, Rach(maninoff), I'll miss you!), which is soooo frustrating. Also, even if I do get in two hours a day, that's not NEARLY enough to really build up any kind of strength or ability. Hopefully I'll be able to keep up singing a bit (I don't want to waste 10 years of lessons); at this point I can only get in about 15 minutes at a time, and even that really isn't all that satisfying, cause I don't have the same strong sound I used to. Things may get better! As for breathing advice - make sure that when you breathe you're not "inhaling" but creating a space for the air to go. Just expand your rib cage (like an umbrella) and your diaphragm (without actually inhaling), and the air will go in - nature abhors a vacuum! That's the best advice I've ever gotten - you won't get dizzy from sucking in air so fast, you won't require as many breaths, your mouth won't dry out as fast, and the sound will be stronger and more supported instead of breathy. Thank you all SO much for your responses and support! Good luck with all YOUR musical pursuits as well!

Hi! Definitely go to the disability office and talk to them. I'm a freshman at Georgetown living in the dorms, and I was lucky to have a private bathroom that I share with my roommate, so I could just close the bathroom door and take a bath or a shower. That was the best part - when I was not feeling well I could take a bath so I didn't have to stand up. You should definitely ask if there are private rooms available. Most community bathrooms will have a handicapped shower stall with a built-in seat and a much larger area so that the steam can dissipate a little bit. Even if the dorm room DOES have AC, you should be prepared for it not to work! Mine hasn't worked since the day I moved in, so I've had to have a REALLY effective fan. You can't really count on being able to open the window for ventilation - you may be over a street so it's too noisy, there might be exhaust, you might be over a dumpster (I am), and you might be right inside where everyone goes to smoke (I am). Therefore, you might want to request a room that overlooks an open area so you CAN have your window open. Be sure you don't have a bunk bed - that's **** when you're having a bad POTS day. As it's so important for those of us with POTS to get a lot of rest, you might want to ask about being placed on a quiet floor so there's not a lot of noise keeping you up. If they can't do that, you might want to request a room right near the RA's so that, if there are noise violations, the RA will hear and hopefully do something about it. Sadly, quiet hours aren't often taken seriously... Ours are 9 pm to 9 am on weekdays and 12 am to 9 am on weekends, and I don't REMEMBER the last time it was quiet! Good luck, and most importantly, have fun!! Kate

Thanks! I noticed a typo in my post - I've been singing seriously since I was 8, but I've been playing piano seriously since I was 4! Oops! I definitely know what it's like to have to come back to piano after not playing for a while - when I was 15 I dislocated my shoulder and tore up all the shoulder structure already there - I couldn't even move my arm and was in a sling for almost a year AND had surgery, so there was no piano for Kate for quite a while! Now it's just frustrating because it feels like just as I've gotten back to it after getting over my injury (I'm now almost 19) I'm dealing with POTS, which is also making it difficult... Hmm...

Hi! I'm a very serious piano and vocal student (have been since I was 8), and I've just been diagnosed with POTS after a very positive TT test. Due to the dizziness, etc., I hadn't been able to do as much with piano or voice this past year, but I'd never linked the two. Now I'm reading that singing may actually be BAD for someone with POTS! For any musicians out there, have you been able to keep your music going even with POTS? If so, are there ways to combat the negative effects (particularly of singing)? I don't want to do something that's bad for my body, but I've dedicated most of my heart and soul (and time) to piano and voice, and I can't imagine having to give them up! Thank you!

I'm leaving for about 10 days on Friday and I'll be flying - the flight's a short one, but I'm still kind of nervous. Usually I do fine on planes, including trans-continental travel, but this is my first time flying since my POTS diagnosis and since I started my meds (Florinef, Gabapentin, Toprol XL). I've not been doing that well, anyways - since I started the Florinef I've had trouble sleeping through the night, not to mention the usual headaches, weakness, dizziness, fatique, and one collapse that always come with POTS. Any advice you guys have would be GREAT - I don't know how my body will react to all this! Hopefully I'll get some good rest on vacation, and, who knows, maybe the change of scene will do my body some good! Kate

Hey Amber, it's Kate! I'm SO sorry you aren't feeling well today - that sounds like a major drag. I actually had something similar to that a few nights ago - I could've sworn I had the world's worst hangover but of course hadn't had a single things to drink. I found that drinking like a ton of water and taking some painkillers really helped. It didn't get rid of it completely, but it made it so I could function quite a bit better. Good luck!

Hey, everyone. I completely understand what you're saying - I missed my last semester of high school due to POTS (I wasn't even diagnosed then), and I somehow made it through this first year of college, although I'm finishing the spring semester at home. I hope to go back in the fall, but who knows. Everything you've done, including getting out of bed and putting one foot in front of the other, is an accomplishment. I have a cousin who has no health problems, dropped out of school, got his GED, and is now living a very free-spirited life in Puerto Rico, and my whole family is still very proud of him. You should be even MORE proud of yourself because of everything you've overcome to do what you have! I'm sure you could someday go to college, or maybe get an online degree. Please, please don't get down on yourself for POTS - there's a song that I love that says "the only measure of your words and your deeds will be the love you leave behind when you're gone," and I honestly believe that. Be proud of yourself for who you are and what you have inside, POTS and all. Kate

Thanks to all of you for all of that wonderful advice and your kind welcomes! I'm feeling a little bit more confident about things thanks to all of you, and I'm definitely having a better POTS day today than I was yesterday! I'm about to get signed up with Georgetown's disability program, which will provide me with more options and leeway when it comes to classes and health. I've also decided to stick with only a 3-4 course load per semester, as opposed to my 5-6 course load I was handling this year! Thanks for EVERYTHING, and I'd love to hear even more from everyone.

Oh my gosh, thanks so much to you all for posting this topic! I'm 18 and was just diagnosed with POTS, and one of my many concerns has been whether I could date normally! One thing an ex of mine and I used to do when I was feeling poorly (before we even knew what was wrong) was lie on the floor, listen to music, and get out one of those fun "If" books with all those questions in it - you know, the ones with hundreds of questions starting with "If" like, "If you could be the author of any literary work, what would it be?" and ask them back and forth all night. We had such a great time and learned so much about each other!

Hi, everyone! My name's Kate, I'm 18 years old, a freshman at Georgetown University, and I was diagnosed with POTS on Thursday after three years of endless tests, hospital stays, doctor referrals, and FINALLY a positive tilt table. While I'm relieved to actually know what's going on with me and thrilled to find what seems to be a VERY supportive community, after talking to my doctor, several nurses, and doing my own internet research I'm feeling very, very overwhelmed with everything. I'm a serious pianist and I'm studying to work as a human rights relief worker in Africa someday. I want to grow up to get married, have a family, and truly do some hands on things to change the world. Now I'm terrified that I won't be able to do this. Just having a normal social life seems daunting enough - I've lost a lot of friends who haven't wanted to put up with the strains of having a friend with POTS. Luckily my parents are two of the most incredible people in the world, and I do have a few good friends who have been there for me through everything, and who are so fun to be around. I'm really hoping to find other people out there who would like to talk and can share their stories with me. I'm great at listening, and as much as I'd like to find supportive people, I'm also great at BEING one of thos supportive people! Is it really possible to date, fall in love, get married, have kids, and have a successful career with POTS? I'd appreciate any wisdom or just input you have to offer! What a wonderful community we have here! Things seem a lot less terrifying with all these resources. Kate