Brye

I've had a couple bad experiences with doctors. I wrote them a letter in each case not knowing whether they would actually read it. One I got a phone call from the head of the clinic who apologized and was wanting to know how she could Help. (I think it was a cover their tail call because I think there was a big HIPAA violation in there.) Another the doctor read because when I saw him again when he was on call to do my hospital discharge he walked in and said "I guess I'm the last person you want to see right now." I got my point across! I'm such a non confrontational person that I just would have broken down and cried. After I sent in my letters I felt better and moved on the the next doctor. I pay them a lot of money and it's not to be treated like crap. I go the them for help. If they are too busy I'll find someone else!! I'm now driving a lot further to see a doctor but if I need something they are there for me! Good luck!!! Brye

I have a friend that got sick at around the same time I did 2 years ago. She was diagnosed with colon cancer. We had a lot in common and although they were 2 completely different illnesses we were both fighting for our health. We were both dealing with the frustrations of doctors, insurance companies, and health care providers. She passed away less than 1 year after her diagnosis and I miss her dearly!! We were supporting each other through our illness. It has made me appreciate each day! I don't worry about what other people think and have a better appreciation of just being here to enjoy my family! Good luck to you and hope you can overcome your differences and learn to support each other!! Brye

I can share my e-mail address or I'm a facebooker as well so either is fine with me! Thanks! Rebecca

I have POTS and mine were elevated this last ER visit. I need to have them rechecked in about 3 months to make sure they aren't rising at all. For me I 'm thinking maybe from all the meds or recent weight gain. Brye

There has to be some way to group us together so we can just share with each other. Then maybe we can send out a whole group message weekly as well in case others want to join us. I also have weight to lose. I've had 4 kids and have lost my weight in between but this last one I developed POTS. Usually I just exercise to lose weight but that's not as easy any more. I have about 50 pounds to lose. This is one time I'm thankful to be so tall! I'm 6'2 and you would never know I'm that much over weight. I'm looking forward to a healthier 2010 though!! Brye

My doctor told me I was drinking too much water and diluting my system. Gatorade was going to resolve my problems. Not sure it helped all that much. I buy these cheap powder pink lemonade things from walgreens to add to my water. It gives it a little flavor and makes it more tolerable! No nutritonal value I'm sure but tastier than just water. Brye

Love this!! Fitness support group from afar!! I'm in. Not planning on any marathons either but just joined the local fitness center in an attempt to stay upright. My goal is to get a little cardiac work out in without falling off the equipment!! If I do fall off the fitness center is across from the ER parking lot so that'll be easy access. My membership kicks in after Christmas!! I've considered starting a group with my moms club I'm in to support each other but I know they don't understand all the challenges I'm facing!! Looking forward to it!! I keep thinking 2010 has got to be a better year for me!!! Brye

I take zofran for my nausea. Phenergan has helped but makes me too sleepy. The zofran helps my nausea but doesn't make me sleepy! Brye

I have a love hate relationship with my compression stockings! I wear the thigh highs and I have 2 different amts of compressions I wear. The lighter compression #'s are more comfortable but less helpful so if I'm feeling really bad I wear ones with higher compression. Very hot in the summer so I have to decide if I'm more likely to faint from being too hot or from not wearing my compression stockings. You should give them a try. My insurance covers 80% of the cost. They aren't pretty and I've found if I go with the Lacy top ones they're less comfortable and tend to stretch at the top!! Good luck!! Brye

My days are normally from around 7:30-1:00 and 3-8 that I'm up. It's really hard for me to make it through the day without my nap. The heater repair guy showed up at 2:40 today (20 minutes earlier than scheduled) and said as I answered the door half asleep "that was good timing". Good timing for who? Too much info probably! Point is I can barely make it without my 2 hour nap in the afternoon. Thank goodness my kids cooperate with the napping plan!! Brye

AWWWWW Congrats on the new baby!! I play the saxaphone and I've nearly passed out numerous times. Hmmm ... never checked my BP. Love the longer baby naps!! Also love the sleeping through the night!! Glad your son is "functional" Hope he continues to improve and ends up in the "feeling great" category we're all striving for!!! Thanks for sharing!! Brye

1. Haven't looked at my pupils ... too busy trying to stay upright. 2. No head sypmtoms when I lean forward! 3. Hands get cold/blue. I'm a fairly cyanotic looking person if I get stressed or cold! My hands are frequently cold and blue!! Brye

You vent away!! This is the place for it!! I have this problem in public as well as at home. Dinner time is very stressful for me and that's when I snap at my kids. They're always under my feet because they're hungry. I get interupted a gazillion times to help them with reaching markers, going potty, changing a diaper, fixing toys ... you get the idea. I want to sit down more than anyone can understand. By the time dinner makes it on the table I've snapped at them 10 times and I'm too tired to sit down to eat with them. I'm also stressed hanging out in my kitchen to begin with because it's never as clean as I would like it. I've seen these Martha Stewart type people say the kitchen should be the heart of the home and you should welcome you're children in and allow them to be a part of it. I don't know how many times I say during dinner prep "Everyone out" So much for welcoming them in! We all have our moments we would like to be more patient and in a perfect world we would be. We're all just doing the best we can and hopefully our loving, caring, patient, hard working moments will make up for our occasional moment of impatience. We're all human and are facing a challenging time in our lives right now. I wish you a season full of short lines and helpful friendly customer service people!! WE all need to vent once in a while and now I've got my venting in for now as well!! Brye

What lifestyle changes did you make that you felt really made a difference? Love hearing that you're doing better. I love it when people take the time to write back during their good times as well!! Brye

I had lots of people respond to my getting back in shape post that strong muscles help! I figure it's worth a try!! I've lost so much muscle since my POTS symptoms started and I'm thinking maybe that's contributing to my uncontrolled symptoms! I've now joined a fitness center (in the same parking lot as the ER just in case) and I'm going to give it a good try!! Hope it helps you as well!! Brye

VERY FUNNY!! THANKS! Brye

Welcome ... sounds like you've had an awful time! I've been diagnosed with pots! It's very hard to control the symptoms. It has required a lot of med adjustments and that still doesn't always to the trick. I was taking atenolol at one point to slow the HR which also caused my BP to be too low. I had to take midodrine to counteract the low BP from the atenolol so I could keep taking the atenolol. Then when I get too bradycardic they tell me to hold the atenolol to let my heart speed up again and I end up with a racing heart. You need to find a doctor who can help safely adjust your meds. I had a hard time finding one and have done a lot of my own research on what meds I should be taking. I called the clinic before I went to see if they treated POTS patients. That doesn't guarantee anything but I figured at least they would have some idea about treatments. I drive 3.5 hours to see an EP doctor who has been helpful. He's not an autonomic specialist but if I have a question or problem he takes the time to figure it out for me. My favorite insensitive doctor quote was "people your age don't die from HR's in the 30's" I take florinef, atenolol, and potassium for my POTS. I have as needed meds for nausea as well that I take. I'm not bed ridden but I still faint occasionally and fatigue is another huge problems for me. I avoid med adjustments like the plague because I worry so much about getting worse and passing out more than I do already. Hope you find some help in treating this!! The cardiology clinic I started at had this no cure / no treatment attitude. I know there is no cure but I won't let my life be miserable and I'll keep trying until I get that right combo!! Good luck! Hopefully you'll get a good doctor recommendation as well! Brye

Erik and Elfie ... Good choices ... there's probably a reason those are both expensive places to live I guess. Jan ... you are living in the right place for you! I grew up in WI loved playing in the snow, skiing, and ice skating. I've become a southern wimp I guess!! Enjoy the snow and cold!!! I'm hibernating until Sunday. It's supposed to warm up by then! Brye

Firewatcher ... panic mode sums it up! I really had to focus and try to take deep breaths to keep myself from passing out!! Where should we all live? Not too hot or too cold ... California maybe! Too expensive I think. Thanks for all the responses!!! Brye

This eve I was out with friends and when I left the place we were eating it was 18 degrees out. I think I had one of my worse POTS attacks ever. My whole body was shaking uncontrollably. I wasn't outside that long but I had a hard time driving home. Uncontrollable shaking, chest tightness, trouble taking a deep breaths! It made me so thankful to be living in the south where this weather doesn't occur all that often. Northerners ... how do you do it? I didn't even have to scrape off any snow and I thought I was going to turn into an icicle!! Apparently cold weather and POTS don't go well together!! Brye

I share! I've been battling this for almost 2 years now and I need the support of my friends and family. I try not to dwell on it or complain a lot. They know how hard I'm working to improve my health. But when I need a hand I send out a crisis e-mail and my friends know how difficult this has been for me and are very helpful!! I have nothing to hide and am not emberassed about it! This is just a bad time in my life and I'm dealing with it the best I can. Everyone has issues in their life from time to time and sometimes we all need some extra help. I also am a fainter and I think it's cruel not to tell. A perfectly healthy looking person passing out near me would be terrifying ... especially if I didn't know it was a common occurance. I also need people to know about my driving limitations. There is a reason I won't carpool with my friends and if they know the truth I don't have to make up excuses! Brye

Hope it's approved! I'll cross my fingers for you!! Brye

What? How much money did you pay him for this appointment? That's awful ... so sorry! That my require a letter if you have a moment with an extra burst of energy! Hope you don't let that discourage you from getting another opinion!! Brye

Avoiding the health care system is understandable. I've had numerous visits that I've felt were a complete waste of my time and money. When it came to requesting my disability however I at least had well documented injuries and symptoms. I also had numerous doctors not knowing how to even treat POTS. I think that helped me with my claim getting it approved on the 1st try. Brye

Hate that feeling as well! Not sure the cause. Worse at night for me and for sure if I'm awakened by something before it's time to get up!! Brue