Brye

I also have a lot of guilt. I have 4 kids and 2 are toddlers I have one who turns 3 in October and a 1.5 year old. It's hard to keep up and keep them entertained and run off enough energy. I have 2 toddlers which I think helps because they play together. If the weather is nice I take them outside and pull up a lawn chair in the driveway and let them play. I'm a member of the local MOMS club. You should see if there is one in your area. It's a yahoo group and has been wonderful for me to get to know other moms. It's a great way to meet others with kids the same age and there is a calendar of events that comes out each month and you decide which ones you want to attend. The price is VERY reasonable. Here I only pay 24$ a year. Anyway ... I would be happy to chat some time and maybe share some ideas. I'm always looking for new ideas on how to keep up and maintain some sanity!! Brye

Nothing like that. They're making you work for it that's for sure. I had my interview, turned in my forms, they tracked down all my records, and was approved in about 2-3 months. Maybe it's because I live in a different state. I was all set to hire a lawyer and fight the good fight but they approved it no additional questions asked. I did submit a document filled out by my physician that my lawyer prepared and I think that may have helped. Good luck though!! Hope it all works out for you!! Brye

I have a dx of POTS. I have frequent ankle swelling that is worse when I spend more time sitting during the day. Compression stockings make a huge difference for me. Don't like wearing them much but I've found if I wear them a couple days in a row I can occasionally skip a day without noticing much increase in swelling. I'm not sure what causes my ankle swelling but I'm thinking a big part of it could be the high salt diet. I don't have much of a choice on that one though. good luck! Brye

Sorry! So frustrating. Sporting events are exhausting. Bathrooms are 99% of the time disgusting ... I had to go in the port-o-pot today with my 2 year old at soccer. I left the door wide open and kept telling her "DON'T TOUCH ANYTHING" My son keeps asking "can you play basketball with me yet" and it just breaks my heart. I've been better about being honest but I still blame that one on my back problem because I know the line of questioning I'll get if I tell him the real problem and I don't have the energy for that one right now. Hope you get to feeling better. I feel your pain!! Brye

Thanks Daisy for all the info. Very helpful. My 2 older kids will be in school but my babies are 2 and 1. I didn't know there was a no lifting restriction. My baby now weighs 32 pounds so I think I'll maybe recruit some muscles for a day or two. THANKS! Brye

I'm having the internal implanted one. I didn't know there was an external loop monitor. Is that different from a holter monitor? How does it indicate there has been a abnormal rhythm with the internal loop? Can you still call in to have it read or do you have to actually go in. Bella Mia ... what kind of rhythms were you having that they needed to call the ambulance? Maybe I'm better off not knowing. I can't imagine that since I'm normally home alone with my kids. Thanks for providing me with all this info. I hate surgery and I'm quite nervous about the whole thing. Thanks! Brye

I'm getting a loop recorder heart monitor Monday. Those of you who have had it were you pretty much recovered by the next day? I'm trying to decide if I'm going to need to find a place for my kids? We have no family here but lots of friends willing to help ... I'm just trying to decide if I'll need it. Thanks!! Brye

Our family time is usually around the house! I have a collection of lawn chairs that I park in the areas we play. If we're playing in the driveway I park my chair in front of the garage. I'm thankful to have 4 kids right now! It's a whole lot of work keeping up with them but they have each other as play mates so a lot of times I can just sit back and watch the fun. They've been understanding and seem happy just to have me around and nearby. We read books and play board/card games a lot. I have a nice small lawn chair that folds up under my stroller that I take wherever we go. We know all the easy hikes in the area and know where all the parks are with the shaded benches and play areas. My kids love watching movies at the theatre and the local university has all kinds of athletic events indoors and air conditioned. It's so hard and it's sad thinking of all the things I would love to do with them. I'm SO thankful though to have 4 healty kids and I just try to enjoy all the time we have together!! Brye

I invested in an elliptical running machine and I love it. I fainted strolling with my kids in the neighborhood so I now work out in the comfort of my own home. The area underneath it is carpeted in case I do pass out. It's very easy on the joints and I like being upright when I exercise. Good luck! Brye

I've been agonizing over the pacemaker decision. If it'll help sign me up ... but it's not something that can just be tried. My next step is to get a loop monitor implanted to see if they can get a better idea of how many symptoms are from bradycardia. Good luck with your decision. If you do end up going with a pacemaker please let us know if it's helpful! Thanks! Brye

Thanks for sharing!! I hadn't seen this before and found it very helpful!! Brye

I hate dental work!! During my long hospital stay when I was 1st dx with POTS I sucked on lifesavers all day long and it took me about 5 days before I remembered I had to brush my teeth. I came out of that with 7 cavities. The thing I hate most is the no Epi in the numbing meds so it doesn't last as long and isn't nearly as localized so half my face goes numb. I've always required a lot of numbing medicine to begin with and without the epi I think maybe it wears off sooner so the dentist is always asking if I'm sure it's still numb. I hate dental pain!! Good luck and always remember STAND UP SLOWLY AFTER!! Brye

I've heard so many say it took years and appeals to finally be approved and I was so shocked and extremely thankful it was approved on the 1st try. It was about 1.5 years after I last worked as a nurse that I applied for disability. I was really planning on going back and that's why I waited so long. Brye

My primary dx is POTS. MY BP plummets if I'm coming down with anything. I had mono a few months ago and it dropped and didn't come back up for weeks. For me the #'s don't matter as much as how I feel. When my BP's that low though that's a gauranteed fainting moment. If I lost my hearing that would cause me to panic too ... I'll keep that one in mind!! Good luck! Brye

I'm not sure if there is a way to look up what the disability income is. It actually for me was more than I thought it would be but I guess I really didn't 'know what to expect. I didn't hire a lawyer but a family friend who is a lawyer got together a questionaire for my doctor to fill out. That was extremely helpful I think. Had it been denied I would have hired him for sure and he said most people don't hire a lawyer until they're denied. I went in person to the social security office to apply so I could submit that form with the application. It is bittersweet because now I have to acknowledge disabled. I fill out forms now and this is the 1st time I haven't had a work number and had to say I'm not employed. One person said to me "so you're a housewife?" Not that that isn't a very noble job it was just one of those moments for me. I was fortunate this whole time I've had health insurance but this will still help so much with all the co-pays for meds and appts. Those add up quickly!! Thanks again for all your support. This DINET site has truly been a life saver for me!! Brye

I was confused just reading your post! I can't imagine being threatened by a doctor by being fired. He's obviously not interested in your well being if he won't even listen to your concerns. Good luck trying to find the right doctor!! Brye

My onset was about 2 weeks post partum with baby #4. It started with N/V and fever though so it could have been a viral cause as well. I was diagnosed with a kidney infection at that time. I tested positive for Epstien Barr virus about 5 months after so that makes me wonder if maybe that was the cause. I guess I'll never know! Brye

I have some degenerative disc bulges and some nerves are being pinched. I know this has been covered before but what types of anesthesia problems go along with POTS. Maybe there aren't any and I shouldn't be worried about it. That's what this site is for though ... if there are some I can advise my neurosurgeon and if there aren't I can breathe a big sigh of relief!! I'm feeling a bit old these days at age 37. Degenerative anything makes me feel old that combined with all the hours spent in cardiology clinic waiting rooms with a much older crowd is a little depressing. I'm sure many of you have similar feelings!! Thanks for any advice in advance!! Brye

I had the perfect job before POTS as a nurse and it was strictly PRN. As needed and I didn't have to agree to the shift until the day of. I strictly covered the sick calls or emergency shortages. I can't work as a nurse anymore but that's the kind of schedule I would love back again because I can decide if I want to work the day of and would know if I was feeling well that day. I wonder if crisis center phone services take volunteers as needed just to cover holes in their schedules. I'm sure being a nurse you can deal with almost any crisis that comes along. It would be an interesting volunteer job. I have a friend who volunteers for a thrift store pricing the kid clothes. They let her do it from home and she has met a lot of nice people doing this. This has been a huge help for the store and you could probably do it at your own pace. Good luck and hope you get your lawyers blessing on this one. Glad to hear you're feeling well enough to give this a try. Brye

I have POTS as a primary diagnosis. I have chronic venous insufficiency which probably contributes to my problem. I haven't really been tested for anything else. I have other symptoms I blame on POTS like nausea and vomiting, trouble swallowing, memory problems, bladder problems. I figure autonomic dysfunction is causing the POTS and is probably contributing to my other symptoms. I'm just hoping to regain control of all of these symptoms eventually. If they get worse I guess I will seek out the million dollar work up for more answers. Until then I just try to keep myself upright! Brye

I used the tell the truth advice on this one!! I was getting my prescriptions filled at the pharmacy and my daughter (5)asked why I take all those medications. "Is it for your back" I was tempted to just say it all was but I told the truth. I told her my heart didn't beat like everyone elses. She asked why and I told her I didn't know. Some times it just beats too fast and the medicine I take makes it beat like everyone elses. "OH" she said and seemed happy with that answer. Thanks to all!! Brye

I wanted to share this because I know there are many fighting for social security disability benefits. I had worked as a nurse for the past 13 years until my POTS diagnosis 1.5 years ago. My husband has a stable job but we still took a hit with me not working and 4 kids to support. In addition to submitting the initial disability paperwork I had a lawyer create a form for the doctor to fill out regarding how my dx would impair my ability to work. My doctor was more supportive of my disability claim than he was of me returning to work. It was approved the 1st time around! I was all set with my lawyer to start the long fight and it was approved. Now I can focus on regaining my health. For those of you still fighting I hope you have the same results!! Good luck!! Brye

I take phenergan at night only for nausea because it makes me sleepy. During the day I take zofran ... no sleepy side effect for me. Brye

I'm visiting family here near Milwaukee for another week. If there is one coming up this next week by chance I would probably try to make it!! Brye

My 2nd TTT was to determine if I was on the right meds. I had 2 different doctors witness the tilt table test and both said they would rather do it themselves in person than have it done at a different facility. Maybe there are some little steps that make a difference in the results. Brye