Brwneyedchica

Out of curiousity, I have a question for those of you who do yoga. I was thinking about trying yoga at home, any suggestions on a specific "tape" that is better than another? I do pilates sometimes, but even though it's pretty low impact, it makes my heart beat uncomfortably fast sometimes.

You guys are all so sweet I wish I had found this website a LONG time ago. Now for some good news. I went to another PCP in the same medical group who I actually used to see. He called Dr. C while I was sitting in his office and tried to get in touch with him. Apparently Dr. C is having some sort of personal problems and cancelled all of his patient appts for the next 2 1/2 weeks and won't be rescheduling for awhile. MY PCP was upset that Dr.C hadn't taken the time to even try and give a verbal order to change my meds while I was in the ER. He scheduled me an appt with a local cardiologist for this coming tuesday. I've never gone that route and seen a cardiologist, but I just need a dr. that will be accessible to me when i'm sick, not months from that time. So my PCP and cardiologist are going to work together to try and find a combination of meds that work for me. My PCP went as far as giving me his home telephone number and telling me to call him if I have any problems over the weekend and he will meet me in the ER. He's a good doctor, I wish there were more like him out there...

Dear Someone, I agree with the other posts as well. Though I do want to add that you shouldn't give up. When I was first diagnosed with POTS I was angry and needed someone to be at fault or to blame. My Mom is a nurse, and tried to help me understand it, and to get me to do what I needed to so that I felt ok, though she had my best interests in mind, it was just easier for me to push her away. Sometimes it just seems like too much to deal with, nobody including your doctor seems to understand, and you hear things like "it's all in your head." Just hang in there, your friend needs your support now, even though she doesn't seem like she appreciates it. My Dad still doesn't seem to think that there is anything wrong with me, we don't live together so he doesn't witness my everyday struggles, he like everyone else just sees me when i'm feeling ok, so in his mind there isn't anything wrong. It really helped when I found information on the internet to send him, and he's started going with me to the doctor and to the hospital when i'm really sick. When you get sick you really figure out who your true friends are, they stick by you no matter what. Your friend will come to accept her illness, and to want to do what she needs to so that she feels well.

I spent most of my day today in the ER where they pumped me full of IV fluid and anti- nausea meds and sent me back home. They paged my specialist (Dr. Chelimsky) while I was in the hospital and they said he will see you on your follow up appt at the end of June. So I get home tonight and there is a message on my answering machine that states that the appt is cancelled and the office isn't resheduling for several weeks, so my appt won't be for several months. I was hoping that i'd be able to speak with Dr. C while I was in the ER. So now i've missed a week and a half of work, I have no sick time left and I don't know how to get in touch with the dr. in order to talk to him about it changing my meds and filling out my FMLA papers. My PCP is no help at all, he's a new grad and you can tell by the way that he talks to me and the things that he suggests ( such as do you make yourself throw up, do you think that you're fat) that he doesn't know anything at all about POTS. I contacted Dr. C by email and that worked before, but he hasn't responded this time. I could just cry.... I'm not sure what to do....any suggestions???

"It can always get worse." At least that is what I tell myself. I've been sick all week long not able to do anything but lay on the couch. I was dozing off and on this morning and I heard my five little brother say to my Mom, why does Alicia always get sick and throw up? Why can't she play with us anymore? How do you explain POTS to a five year old. I had a summer class to take this summer to lighten my load of classes in the fall and i'm too sick to go. I'm working on getting FMLA paperwork filled out, because I am precariously close to losing a job that I love, but I run into problems every step of the way, or so it seems. I understand being fed up. There really are people out there who have it worse than we do. My uncle who has had problems with his leg since a helicopter crash in Vietnam, was rushed into emergency surgery a week or so ago because he couldn't feel his legs. He then got an infection in his blood stream and almost died. Whenever i'm having a bad day I try and look at the big picture, and be grateful for the good days and the blessings that I have in my life May the joy you find in your good days get you through the bad ones Feel better Sue!

Congratulations!!! I was originally told when I was diagnosed with POTS, that it is inadvisable to get pregnant. I am very excited to hear from women who actually are pregnant or have been pregnant and have done just fine. Good luck, and keep me posted as to how things are going

Congrats Jessica, it sounds like good things are happening in your life either way! I remember when I moved, I had months to prepare to move out, and I had everything packed and labeled and I did it a step at a time.That was really easy, and everything went smoothly. But when I was really sick and moved back with my Mother, I had to be out ( or so the landlord said), so I had to pack up a whole apartment full of furniture and stuff and move it all in one day, with no boxes,(think garbage bags) and I wasn't able to get a U-Haul truck. I made about 15 trips that day. You sound like you have alot of help and support though, so i'm sure things will go great for you! Just continue to do what you can, a little at a time!

Wow, i'm so grateful to have stumbled upon this website. It's nice to know there are others who have been through the same things as I have. This does seem like a really great place to get support and information. I'm waiting now to see if my specialist will fill out my FMLA papers, having not seen me in quite a long time (my fault). Somedays just going to work is ****, my worst complaint is the nausea. I should've seen my specialist (Dr.Chelimsky) quite awhile ago, but I just "dealt" with my bad days. I do have good news though, I was able to up my appt with Dr.Chelimsky from July 26 to June 28!

Awww... don't give up. I know exactly how you feel, i've faced this same situation several times in my life since i was diagnosed with POTS. Here's a little poem that helps me when I really feel like I can not take one minute more of my life... When things go wrong as they sometimes will; When the road you're trudging seems all uphill; When the funds are low, and the debts are high And you want to smile, but have to sigh; When care is pressing you down a bit- Rest if you must, but do not quit. Success is failure turned inside out; The silver tint of the clouds of doubt; And you can never tell how close you are It may be near when it seems so far; So stick to the fight when you're hardest hit- It's when things go wrong that you must not quit.

Hello everyone, i'm Alicia and I was diagnosed in 2000 with POTS. All of the symptoms of POTS hit me full force right before I started 10th grade, I was 15 at the time. I've been living with it for years now, and am so relieved to know that there are other's out there like me. At one point I was told that it was psychosomatic or all in my head, I was an A student all through school and I never missed school, but anyway, I know how frustrating that can be. Like everyone else, I have good days and bad. I currently work full time in a hospital, and will (hopefully) start my nursing clinicals in the fall. It seems like my symptoms get worse like once a month or once every few months. Worse to the point where I miss work, and school. Life is miserably depressing at those times, even after all of this time my family and friends don't really understand. They think I am, "faking it" or "being a wimp." For the past few years i've woken up almost daily being nauseated. I have always been thin, but in the past few years I noticed that my hands and feet are always freezing, sometimes when my heart is beating so fast I have chest pain. I just "deal with it," I take deep breaths and hope for it to go away. Most recently, this week and last month actually, I have had "Attacks" where i'll be out doing something and start to feel a sort of burning in the pit of my stomach and I end up vomiting for hours. I've missed this whole week of work because of it this week and a week last month. I actually haven't seen the specialist that diagnosed me with POTS in several years. He put me on a beta-blocker, Inderal and that worked ok for quite awhile. I just feel that it's not working anymore and i made an appt to see my specialist. I haven't been able to pinpoint foods that make me sicker than others. After eating I always have this heavy feeling in my stomach that takes forever to go away. Last June i moved out and got an apartment with my boyfriend of 4 years. Long story short, I found out he was not who I thought he was, he suddenly couldn't keep a job, among other things, and that left the bulk of the bills to me. About that same time I got really sick and had to miss 2 weeks of a job that I had only started several months before. I had to move back home because I was to sick to live alone or even work at the time. Now i'm stuck with a lawyer and a lease i'm trying to break with no success. Is it just me, or does stress make anyone else feel worse?It seemed like the added stress of trying to pay all of my bills alone and of fighting with my ex made me much sicker. I seem to pick up colds alot more frequently than I ever did as a child, and I get sicker for longer than a normal person, does anyone else have this problem? So i'm just living a day at a time now. I've missed quite a bit of work and am trying to get FMLA papers filled out, so at least it's covered. My appt with the specialist isn't until the end of July, so i'm hoping I feel better before then and can get back to work. I'm supposed to start nursing clinicals at the end of august, i'm not sure how that will go. I hope that my meds can be changed and that we can figure out what foods if any, that i should avoid. I'm just still trying to adapt, even after all this time, to not being "normal" and not being able to keep up with things the way I used to....