Brye

I hadn't thought of this. I HATE compression hose but they're critical to my upright life. I must check these out now. Off to search the internet. Thanks Reen for sharing your thoughts!! Brye

With you on that one!! I hired a babysitter to take my kids outside so I can hibernate as much as possible. I live in Arkansas and I'm definitely feeling the heat. Looking forward to my trip to WI in a few weeks where hopefully it'll be a bit cooler. I'm also planning on looking for a cooling vest of some type. The other thing I did was apply for a disabled parking tag. That saves some treks through hot steamy parking lot. Brye

I'm a frequent fainter and I have a loop recorder implanted. It records all the life threatening ones automatically and If I faint and push the button on my little remote control it will back record at least 2 minutes. Expensive option though if health insurance won't cover it for you!! Hope you are able to catch some of your episodes so they can treat them !! Good luck!! Brye

Forgot ... my last level was in the normal range. Brye

I just finished my 8 week of 50,000 IU weekly supplements as well as taking a Vit D/cal supplement twice a day. I was at 11 when I started and the reason I went to see a doctor at the time is I was beyond absent minded, more tired than usual and had Horrible memory/focus problems. I ran 2 stop signs in a week and was scared into going to the doctor. I have POTS and 4 kids and it's almost emberassing going to the doctor complaining of excessive fatigue. Fortunately my Int Med doctor takes me serious. The 1st time it was mono, this time Vit D deficient. I am feeling better. Back to my normal tired state and I haven't run a stop sign since I started the supplement. Must have helped some!!! Brye

Sorry you're feeling so bad! I have a traveling husband as well and that makes it even more difficult. My husband doesn't really have a very good idea of how much I struggle either. I only tell friends on a need to know basis. I have 4 kids now and I developed POTS shortly after delivering the 4th. The one thing I have learned is to use my resources!! I've gotten over the guilt of spending a little money on help around the house and help with my kids. I know he can't back off on his work schedule and he's helping at times. I was dreading the summer, he has a ton of work to get done. I took care of the dread myself. I hired a babysitter a few times a week to come help, I have a cleaning person who comes in monthly, my kids have a couple camps and vacation bible school lined up, I now have summer in control. I know I will survive the summer. My kids will have a great time with me and with others as well and I can breathe a sigh of relief. Hopefully you have some resources you can draw from to help; whether it be family, moms day out, a teenager looking for a summer job. My babysitter comes at times while I'm there as well to keep my kids entertained so I can rest and get a few things done. Hope you have a sweet healthy baby soon. Keep us posted on your cute new addition and hope you start feeling better!!! Brye

So true ... how sad is it that an amputation would look easier to deal with than a bad case of POTS. Does it have to be a cardiologist? I have a great internal med doctor who has been more helpful than anyone. I drive 3.5 hours to see my cardiologist a couple times a year and have a local internal med doctor order and set up all tests needed in between. That's worked well for me if you can find a different type of doctor willing to take on a challenge. Just a thought! Brye

I'm feeling your frustration. How awful to waste your time and not get any help. I felt like I wasted time with a neurologist that I had traveled 3.5 hours to see. My cardiologist was hoping he could help treat my POTS symptoms but all he did was rule out seizures and send me on my way. He at least though acknowledged it as a cardiac problem and offered an EP referral. He was wondering why I was so upset when he got done telling me I didn't have seizures. I was thrilled I didn't have seizures but it was back to square one on my search for help. I also feel your frustration about having to keep up with a 5 year old. We had our last day of school yesterday and my kids LOVE the park. It's been in the 90's here and I can't take it at all. I've signed them up for camps, kids day out programs, vacation bible school, hired a babysitter. I still have feelings of guilt even though I know they're well taken care of. I want to be doing these things myself. I also have to have the dreaded 911 conversation with my kids in case I pass out this summer. I know they're old enough to handle it but I feel bad they should have to worry about it. (My oldest is 8) Hope you find a doctor who can help soon. Don't give up though. You're health is too important to you and your family! Brye

Sorry you weren't approved on the 1st attempt. I have a form a lawyer friend had my doctors fill out that I submitted with my original request. I would be happy to send it to you. I think it helped give them an idea of my true limitations. My primary diagnosis is POTS. High risk for syncope was noted by several doctors and I think that may have helped as well. I was approved the 1st time but I was prepared to hire a lawyer if it was denied. If you want to look at the form and see if it may help PM me your address and I'll copy it and mail it to you. Good luck! Brye

I had normal results with my TTT with meds. My cardiologist acknowledged the meds are controlling my HR. I still have symptoms but they are much improved. My problem right now seems to be too much bradycardia. It's hard to get the right dose and type of med. I don't feel quite at lightheaded as I used to but I have so much fatigue. My cardiologist still takes me seriously. He's aware it's the meds controlling the rate. Brye

I was approved on the 1st attempt. I had seen 4-5 different cardiologists and none had resolved my symptoms. My diagnosis is POTS. I never saw an autonomic specialist. I had a supportive cardiologist who didn't really have any great advice on treatment options to control my fainting. I was approved based mostly I think on my high risk of syncope. It's a workers comp nightmare apparently to hire a fainter. Hope you find the answers you need. I did have a little lawyer advice prior to submitting my paper work and was definitely planning on hiring one if it was denied the 1st time. I was thankful it was approved. Brye

I was approved on the 1st attempt. I had seen 4-5 different cardiologists and none had resolved my symptoms. My diagnosis is POTS. I never saw an autonomic specialist. I had a supportive cardiologist who didn't really have any great advice on treatment options to control my fainting. I was approved based mostly I think on my high risk of syncope. It's a workers comp nightmare apparently to hire a fainter. Hope you find the answers you need. I did have a little lawyer advice prior to submitting my paper work and was definitely planning on hiring one if it was denied the 1st time. I was thankful it was approved. Brye

My batteries almost dead so I need to be quick. I take zofran during the day for nausea and phenergan at night as needed. I take xanax about 1 hour before going to bed. That helps me fall asleep. I also take a nap almost daily to compensate for the sleep I miss at times at night. ' Brye

I've had those thoughts recently too about perhaps not needing as much of the Beta blocker. My HR"s have been dropping down in the low 40's as well lately. In the past when I've tried to cut back on my atenolol though my tremors became quite a bit worse. It's so hard to know when to adjust meds because it's so much trial and error and I hate the error part. Keep us posted on what you figure out!! Brye

Recumbant bike! That's my favorite part of my work out!! You can up the resistance and go for more leg strength or you can pedal faster for more cardio. I have a hand held yahtzee game I play while I"m biking. It makes the time go faster. Brye

In my attempt to go back to work a while back one of my work notes the cardiologist wrote my diagnosis as Potts syndrome. Very different thing. We had to have that one corrected. It was still denied but at least the return to work was denied for the right diagnosis. One of my other favorite quotes was "people your age don't die from heart rates in the 30's." This was before my Beta blocker was even started. Thanks for sharing. You just have to laugh some times!! Brye

Loved it! Definitely made me teary eyed! Thanks for sharing!!! Brye

I thought it would be a good idea to try to go without my florinef due to excessive fluid retention. I had quick negative results from missing a dose. I eventually got to where my memory started being affected. I didn't realize how badly I needed it until I tried to go without! Brye

I have frequent nausea waves as well! I take phenergan at night and zofran during the day for this. Brye

My last TTT was with my beta blocker. I had perfectly normal results! No change in treatment necessary. Maybe that's what their looking at, how effective your meds are! They already have a documented abnormal TTT right? Brye

So sorry! I'll be praying for you and your family during this difficult time! Brye

Excessive fatigue makes my congnitive function horrible. The last 2 times that was what the doctor focused on and he looked for causes for my memory problems getting worse. The 1st time it was mono, this time it was a vitamin D deficiency. I have some chronic brain fog but I only usually have it checked out if I notice it worsening. Good luck! Brye

Thanks so much for all your responses!! What great suggestions!!!! Wii games at blockbuster ... that would save money in the long run! Who know? Love the ideas! No summer school option here but I've already begun the recruiting process for the neighbor girl! Great library here ... my toddler could probably do some serious damage in a matter of minutes there though. No local Y here but boys and girls club! My husband has pool duty when he gets home from work. We have the family membership. We have a garden my husband oversees their part ... he could make an assignment before he leaves for work. Tents, playdough, cleaning, art, puzzles! Bring it on! I always start to panic this time of year but then once summer vacation arrives it's here and gone before we know it. Thanks so much for all the great tips!! Love you all!! Brye

One month until my kids are out of school! I'm starting to feel the panic set in! I would love to hear some of your summer secrets when it comes to keeping kids entertained. I know there are other parents in this situation. I'm looking forward to spending more time with them but I want it to be fun and not torture for us all. Parks are difficult for us due to the heat and my difficulty keeping up with my toddlers. Any suggestions are appreciated. My kids are 7,6,3, and 2. Some of our favorites: Play dates with friends. Water fights in the yard. (I can supervise these from the shaded porch) Bubbles/sidewalk art. Board games. That'll get us through the 1st week!! HELP!! I'm getting desperate! I've even condsidered buying a Wii system or hiring a nanny!! If only we could live without a budget! Thanks!! Brye

My favorite exercise is the recumbant bike. If I'm having a bad day I just slow down and decrease the resistance. If I'm having a good day I push a lot harder. I'm in a cardiac rehab class and the instructor has given me a work out to do and he was good about trying to limit position changes. I've gotten stronger and have noticed I get less winded when climbing stairs. I was hoping it would eventually improve my energy level. I tire out as well between 3 and 5, especially if there is not a nap. Still not noticing any extra energy but I need to stick with it!! I hope you find a work out that helps you!! Brye