Brye

Hope it goes well for you!! I got the card you sent a while back. Hope the papers I sent help in some way. It's good that you are being seen right now for your flares, not only do you need the treatment but it also documents your symptoms!! Good luck and keep us posted! (my lawyer hadn't heard of it either. He also told me my chances were less on the 1st try because of my age, Hope it's a 1st time approval for you too) Brye

Thanks for the reminder!! I just completed it as well! Brye

My kids are the reason I get out of bed for sure! Building a support system has been critical for me as well. I don't have family here. I've joined the local MOMS club and that has been a great resource. You should see if you have one in your area! It's a support group for stay at home/part time MOMS. I think you can look this up in the Yahoo group sight. This has been a life saver for me. I have a lot of guilty feelings about my time spent with my kids. They are happy, and healthy though and will be just fine. We enjoy our time together, not always playing at the park like we would like, but playing in the driveway at least. I'm exhausted daily and there are so many reasons for the fatigue. Just being a MOM alone is exhausting. I developed POTS almost 3 years ago after baby #4. Things have gotten better gradually. Not where I want them to be but I'm much stronger than I was and have better HR control. Hang in there. Try to enjoy the time you have with your baby. It does get easier as they get older and start to become more independent as will. I'll be thinking of you. Brye

Not yet! Let us know how it goes. I've been agonizing over that decision. Hate switching meds!!! Brye

I have an implantable loop recorder. I've had it Just over a year. I really don't notice it anymore. It was an easy outpatient procedure. It lasts 2-3 years, I guess until the battery goes bad. I had mine due to some fainting. So far my results have looked OK. I had some bradycardia that may require a pacemaker but otherwise nothing awful. I have POTS and right now my HR is pretty well controlled with my atenolol. It has provided some helpful info here. Brye

Sorry you're having so much trouble. I was an ER nurse prior to being diagnosed with POTS after having my 4th child 3 years ago. I haven't been able to work since. I had HR increases from 30's-40's up to the 160's when I stood up. It was a terrible feeling just to stand and I'm a fainter as well. My atenolol seems to be my best drug. My last TTT was actually normal. If I even miss one dose of my atenolol I can feel the tachycardia start to kick in. I still faint occasionally but not nearly as much as I used to. I can exercise on a recumbant bike and have gotten a lot stronger. It's hard to find the right drug combo and I hate adjusting them. I would love to go back to work but it's not looking good in the near future anyway. I get horrible hand tremors if I get at all stressed or hurry to get something done. I also have some bad memory problems. Plus there's always that risk of fainting. I did apply for disability and was approved in record time. The doctor made the risk of syncope very clear on my application. When I tried to return to work the hospital wouldn't take a work note indicating a chance of syncope and the doctor wouldn't leave that out. I didn't really have a choice. Hope they find the right treatment for you. I understand your frustration!! Brye

No fertility problems here. Hope you can get to the bottom of it soon! Brye

Perfect KC! Thanks so much for sharing. That'll be good for a while! My kids are 8,7,4,3. Perfect fishing age and they love PB and goldfish!!! We live in Arkansas and we're not used to such long stretches of snow days. Last big stretch was 2 years ago when the power was out 8 days. I'm thankful at least the lights are still on!!! THANKS! Brye

4-6 inches of snow and tomorrow will be the 3rd snow day here. Friday is not looking good either. Please share you're low energy kid activities with me. We're about Wii Fried and my energy is running out. Getting 4 kids ready to play in the snow is WAY more than I can take. All you parents out there please respond with some of your favorites. We pulled out the Christmas clearance gingerbread houses today. We may be forced to clean the house if we don't come up with another fun indoor activity. Help!!! Thanks! Brye

I took all my meds for my TTT and passed with flying colors! I've already been diagnoses with POTS though and it was a follow up to see if my meds were helping some. They are!! Good luck with the test. I failed drastically on the 1st one without the meds. Brye

Haven't had a hearing and I have no brilliant advice but wanted to wish you well. Do you find out right away if you're approved? Good luck!! Brye

Week before for me too is usually the worst. I'm generally exhausted but that week before I feel like I literally am dragging my feet on the ground when I walk. Brye

Mine reads double time at the airport. I checked my pulse when it was showing 170 and it wasn't! Brye

That's scary! Still a chance it was an error. He recovered from an 11% one before. I would think the only way for him to be symptom free at that # maybe was if it was a gradual occurance? Was his last echo 1 year ago. Praying for you both. Hope you get some better news at the follow up!!! Brye

I see an internal med doctor. He has been great. He started the compression stocking and high salt diet before even knew POTS was the diagnosis. He's been very helpful and supportive. I see a cardiologist from afar and my internal med doctor for the in between problems. Brye

Bring them over and we can have a play date. I think some of them are even about the same age!! Wish we lived closer we could help! My husband travels as well. Babysitters are my friend!! We hibernate when he's gone. If I need a gallon of milk and don't feel like going out I call a friend. I have friends who are willing to take my kids if needed. When I'm feeling well I'm more than happy to return the favor. We have no family nearby but if my husband will be gone an extended time I try to line up a grandparent visit. My house cleaning is halted and I worry about keeping my kids clean and fed. If they have to miss a day of school because I can't make it so be it. Tardy ... not much I can do about it. Good luck! I understand the struggles and how stressful it is. My big fear is I'll faint when I'm along with them. My son is 8 and has been trained on the 911 protocal. Hope it goes well for you! Give your kids and extra squeeze and try to enjoy the time with them!! I try not to obsess on my #'s and Vital signs. It just stresses me out and I just get frustrated I can't control them better. I try to focus more on how I'm feeling. Also ... have you tried one of those seat canes. Those can be a life saver if the line is held up and you need a place to sit!! Brye

I forgot to take my socks off before getting in the shower. A friend asked me what I did with my kids that morning and I had NO idea!! Hate it! I asked by cardiologist about it and he said it's probably my atenolol causeing it? I'm not convinced so I haven't switched yet. My primary doctor is looking into this as well. I get more forgetful when my vit d gets low. It's hard to know what to worry about and what's just normal brain fog a fatigue. Brye

The lawyer I spoke to also said it seemed to him like younger individuals get denied more often on the 1st try. I was 37 at the time though so I guess you never know! Brye

I waited around 3 months for mine to be approved. Brye

I was approved on the 1st try. I was so thankful after all the terrible stories I had heard. I had a friend who is a lawyer who helped me a bit but otherwise it was a fairly easy process for me. Hope you all are successful as well. The wait to find out was the most stressful part. Brye

I've been taking atenolol almost 3 years now. I'm concerned it may be causing significant memory problems. It's such a difficult decision to attempt a med change. There's always that chance of making things worse. What is a more selective beta blocker? Metoprolol was the one the doctor suggested I could try. If you do decide to switch keep us posted on whether it was effective. Good luck!! Brye

I drop a lot of items as well. It's worse when I'm rushing to do something or if I'm late taking my beta blocker. My hand tremors really kick in and I think that's a big part of it for me. I also have noticed my balance is off. I walk around like a drunk at the gym especially when I'm trying to do my workout. It feels like there's just not enough blood flowing to my brain. Brye

I was intitially diagnosed with cardiomyopathy and my heart was only pumping half strength. This was right before my POTS diagnosis and for me I think it was caused by a combination of pregnancy, virus, and possibly my congenital heart defect. I don't think POTS was the cause. I thought maybe the other way around but not sure. Now I've regained my heart function and it's back to normal. Not sure if that's due to better HR control or not. I'm sure that had to help though. I'm so hesitant to change meds as well. I've taken atenolol almost 3 years and I'm concerned it may be causing some significant memory problems. I'm terrified of switching though bacause I may lose control of my HR again. It's such a hard decision. Good luck!! Brye

I'm exhuasted all the time. I've kind of given up hope and figure I'm doomed to be tired. I have 4 kids, the oldest is 8, that causes a lot of fatigue right there. I know a side effect of atenolol is fatigue. I've had mono recently ... more fatigue. My vit D level has been low lately. I think I'm maybe a little less tired now that that's normal. Things that have helped me ... afternoon naps, only if my kids cooperate. vit d supplements seem to have helped. Hired help ... I have a cleaning person come clean every other week and have used as many childcare/school options as financially possible. Wish I had some miracle advice. This is one of my worse symptoms. I hold a lot of guilt inside when I have to tell my kids I'm too tired to do things. Brye

Unless I get a nap around 1:00 that's when the fatigue catches up. Not sure why, I always figured it was because my older 2 kids get home from school. Brye