Brye

I have one in. It cost a small fortune. Fairly non invasive. I had some ugly V-tach runs when in the hospital and I pass out as well. It picks up all the life threatening rhythms automatically but when I faint it will record back 2 minutes prior to when I hit the button. My problem has been it usually takes longer for me to get to my clicker to push the button so it's been hard to catch the actual moment. Make sure your insurance will cover it though. It was quite expensive. Brye

My HR doesn't go up past 120 either. I can walk at almost 4MPH (long legs) and my HR still doesn't climb much. Stairs really do me in. That's when the tachy moments really kick in. I get short of breath and light headed. Hope you are able to find the right exercises that work for you. My favorite is the recumbant bike. I can play my hand held yahtzee game and get a work out in. Hard to fall to when you're sitting. It's frustrating for me as well being so out of shape. I weigh more now than I did even when I was pregnant. Not giving up though!! I'm hoping if I lose some weight that'll help some of my symptoms as well. I figure it can't hurt. Brye

I called to confirm they had received my records a long time ago. They would call me when they could book an appointment. Maybe if I was more persistant I would get a bit further. I'm kind of torn right now though as to going. I have a good diagnosis (right diagnosis is a better word) I'm confident in. I could use some help with treatment options and med adjusting but recent posts have kind of indicated that's not one of their strong points right now. Taking care of me falls well below caring for my 4 babes right now and it's hard to justify the expense and inconvenience. I had a EP cardiologist who was able to consult with Doctor Grubb via phone but her retired last January and left me hanging. I think maybe they had studied together at some point. It's such a tough decision to make. I have also had the frustrating experience in traveling and wasting time seeing a neurology specialist and coming out with no answers and a bunch of medical bills. I know many can relate. Probably too much info for this post but I sure hope you get an appointment soon and get some much needed help. Keep us posted. If you are able to get in please share your experience whether you found it helpful. I'm trying to decide at this point whether to pursue this option or not anyway. I think maybe my paperwork was lost in the shuffle and perhaps that's some kind of sign anyway. Good luck!! Brye

I've been waiting over a year now, records have been sent long ago and haven't heard a word. Hope you have better luck! Brye

Interviewer at mine was strictly gathering information. They seemed to encourage doing the whole thing on line. I did the interview option because I had a questionaire my doctor filled out I wanted to submit and wasn't sure if that was an option via computer. I didn't ever end up seeing another doctor other than my own either. Good luck!! Rebecca

Definitley have those moments. For me it's usually when I'm more tired than usual and it just feels like I can't focus very well! Brye

I succeeded with my disability claim the 1st time around without a paid lawyer or an autonomic specialist. I had a lawyer friend who wrote up a questionaire for my physician to fill out with info he know from past experience was critical to making a decision. I submitted that with my initial forms at my interview. I didn't gather my med records I just signed a release. The only thing I submitted was the questionaire and my TTT results. I was shocked when it was approved the 1st try. I think I still have a copy of the form if you're interested. I had a deal with my lawyer friend that if it was denied I would hire him for the appeal and I was thrilled when it was approved!! I think he was a little shocked even because he said it's more difficult if you're younger. I also had frequent documentation of failed treatments by numerous Doctors as well as frequent hospital records and ER trips and I think that helped too. I had return to work notes as well that were denied by my employer due to I think liability concerns. My favorite was "may return to work provide a safe environment should syncope occur" Denied ... what would that be a rubber room perhaps? Hope your request goes smoothly! I'm so thankful I had such an easy time especially after seeing some of the hardships so many go through. Brye

Wow ... do they give a reason why they reject you? Is there a certain criteria needed? Brye

I take xanax at bedtime every night. It just makes me sleepy. I did recently start taking 2 though because it doesn't seem to be helping as much. HMMM! I often wondered if taking it every night makes me an addict? I did go a stretch without it though and had not withdrawal effects. Good luck! Brye

Daily thanks to my fancy blue shower chair!! Brye

What's your HR walking?. I would go by your symptoms. I can do a brisk paced walk for 20 minutes and my HR only gets up to 115. 130 is the fastest I've seen. I'm pretty sure that's due to my beta blocker. 130 though and I'm starting to get a bit light headed and it's time to stop. If you have a healthy heart and no blocked arteries fast heart rates can be tolerated quite well. You kind of need to go by how you feel. Have you had a cardiac stress test and talked to your doctor about increasing your workouts. Hope all goes well!! Brye

I'm a member at the hospital fitness center and they have a supervised cardiac rehab drop in class for those who have cardiac problems. I signed up for that and it's been helpful. The trainers who run it have extra cardiac experience. They helped me set up my work out and adjust according to symptoms as I go along! All I could use is a child care option and it would be just perfect. Hope you find it helpful. Brye

Definitely more support the higher the number. I've found the 20-30 range more comfortable but The 30-40 definitely are more helpful for me. I wear the 20-30 ones if I'm having a good day and the 30-40 if I'm feeling more lightheaded than usual! Brye

I'm a frequent faller. My big kids know how to call an ambulance and my toddlers just think it's a lot of fun when mom gets on the floor to play with them. I hate passing out and sometimes I can tell it's coming. I've learned to walk next to the wall and find something to lean on during a conversation. I've also considered getting a handicapped parking permit to avoid fainting in a dark parking lot at night. It's terrifying but it's just another part of my life. I hate that it happens but I try not to let fear hold me back. Good luck! Brye

I'm an eternal optomist!!! If it can't get better on it's own, I'll do everything in my power to make it get better!! I was diagnosed 2 years ago after baby #4. It has gotten some what better for me due to the medications. I'm still dependant on my meds but my quality of life has definitely improved since my meds started! I'm still not happy with my current level of functioning. I'm trying to gradually get back into shape and gradually increase my activity level! Brye

Joy: I love the fall risk bracelet in your photo. I feel like I should be wearing a sign some times. Every time I'm in the hospital I get the purple falling star taped on the door so everyone knows!! Brye

I have the lump in my throat feeling often. I haven't had the work up and it's yet another thing I've just attributed to POTS. I did discuss it with my doctor though and he did a CT scan to make sure there wasn't a mass impeding my swallowing. Brye

I was holding out to see if you would get a response. I had some problems with dizziness back in college due to some ear nerve weakness problem on one side and went through some vestibular rehab. That was many years ago though and things may have changed. I think it helped at the time with my balance and focus when upright. It was a long time ago and it was actually at the UW hospital in Madison. They had me stand on a platform and focus ahead and the walls in this booth kind of moved around me. I think it was to work on balance. Long time ago though. Don't recall how long I did it either. Good luck! I hate dealing with all that insurance out of network stuff. I was told I had to exhaust ALL my in network provider options before I could leave the network. I drive 3.5 hours to see my cardiologist. I think if he doesn't help he has to claim defeat and then I can see someone out of network. Too complicated. Hope all is well in WI!! I placed the Grandparent 911 call and they arrived from WI this weekend. Very exciting for my babes and extra reinforcement for me!! Yeah! Talk soon! Brye

WHEW!!! Way to go!!! I found my approval very bittersweet! I was thankful that it was approved but it was a little depressing to me that I qualified for it!! Oh well! What a relief for you!!! Now you can focus your energy on getting well!!!

New doctor for sure!!! It's so hard though when you need keep starting over. My EP doctor was so afraid of the liability if I fainted at work he jumped at the chance to get my disability approved. He wrote me these horrible return to work notes that I think he knew would be denied because he was afraid of a lawsuit. "Return to work but provide patient a safe environment should syncope occur" What is that ... a rubber room? That one was denied. Keep looking and don't waste anymore time on him. I've found the cardiologists in this area are too burdened by just keeping up with the typical daily cardiac patients they don't have time to figure out the best treatment options for me. As soon as I figure out I'm a burden to them it's time to move on!! I'm not paying them money to burden them, I'm paying a lot of money to get some help. Good luck! Brye

ATENOLOL!! I can't miss a dose without feeling the heart start to race!! Brye

This has been one of my biggest losses as well. I was diagnosed with POTS 2 years ago and I miss my active life I had before!! I was a college athlete as well. I'm really working hard though to get back into shape!! I haven't decided yet if it's been helping yet or just causing too much fatigue. The hospital fitness center here has a supervised cardiac rehab drop in time 3 days a week and I've signed up for that. The trainer who helps out has been very helpful in setting up a program for me with limited positional changes during my work outs. I also know if I do pass out there is someone around who won't panic. A while back a yahoo group was set up to enable us to support each other with our fitness goals. You Could consider taking part in that. I get CP while working out but I've had all the necessary tests to rule out anything awful. My atenolol does a great job controlling my HR but sometimes I think it works too well. I worked out today and biked 5 miles and my HR didn't even get above 100. At rest it drops into the 40's. I get this feeling like there isn't enough blood flowing to my brain when I'm working out. I sometimes think I would be better off if it ran a bit faster once and a while. If I back off on my atenolol dose though I have a horrible time controlling hand tremors. It's so hard to find the right balance!! I plan on continue to work on getting back in shape. I just don't see how being inactive has helped me over the past 2 years. I've had some set backs already but I'm not giving up!! I hate the racing heart feeling but with my beta blocker I really don't get that anymore unless I miss a dose for some reason. Maybe you need a different dose or beta blocker to better control your symptoms. Anyway, I've rambled long enough. I feel your frustration though and hope that you don't give up! Brye

My last TTT was perfectly normal on my current meds. I still feel terrible, have no energy, and still faint! I'm thrilled my vitals are pretty normal but what about my other horrid symptoms? It's very frustrating and almost more discouraging that my VS's are fairly normal and I still feel awful. My last contact with my MD was call if you continue to have more problems! Really? How often do you want the phone call! I understand your frustration. I'm not accepting my new normal!! I'm going to keep pushing until my new normal is something I can tolerate. It is not normal to faint! This whole "of course you faint you have POTS" is for the birds!! And my last cardiologist I saw in the ER "there is no cure so really we can't do anything for her" Could you maybe try to help me treat the symptoms at least. I'm done venting now ... thanks for listening! Good luck! Brye

Kayjay you summed it up for me!! Love/Hate relationship with my elliptical, embraced the nap, love the shower but couldn't do it without my chair. My work outs have helped some with my endurance I think but worsened my fatigue overall. I'm not as winded when I walk, feel stronger, I can walk faster and bike further. I've given up on my soccer team return and these days I am just thankful to be upright. I'm frustrated yet thankful all at the same time!! Brye

Flex spending account totals you can't include? We were well over the 7.5% but don't think we deducted the flex spending totals! Learn something new every day!!! Thanks for sharing your CPA knowledge!! Always helpful!! Brye