Brye

Busy Mom: No recommendations on specialist but I have 4 kids to keep up with and can kind of relate. I like my EP doctor but really need an autonomic specialist at some point. There are none any where near here and my trips need to occur in my spare time ... oh wait ... there is none!! I'm sure you're in the same situation. Hope you find someone who can do a full eval. Keep us posted on your success in getting help because at some point I will also be needing to travel to get some answers to all my symptoms and not just my heart rhythm problems! Best of luck!! Brye

A big turning point for me in acknowledging I had POTS was when I finally gave in and bought my shower chair. I passed out more times than I wish to admit because I was too stubborn to get a chair. Every time I was in my doctors office ..."do you think you should get a shower chair" It made me feel old and incapable. Buying that chair was one of the best decisions I made. It still ***** out the energy but the chance of passing out is so much less!! I usually take my shower right before I crawl into bed at night. Then by the next morning I've usually recovered!! Brye

Thanks for taking the time to share!! I love success stories and hearing what worked!! Gives hope for sure!! Brye

My babes are 7,5,2,1. I had POTS symptoms with the last pregnancy but wasn't diagnosed until after. One think you didn't mention is support hose. They helped some of my symptoms when I was pregnant. Sorry I can't be more helpful but be sure to take care of yourself. Hopefully friends and family can help out with your kids to keep them entertained and happy. It's hard keeping up with kids when your pregnant much less pregnant and not feeling well! Good luck! Brye

I keep telling my doctors that it doesn't feel like my brain is getting enough blood. So far I've only seen heart specialists to correct my rhythm problems. I get so light headed and can't think straight. I've been trying to get back in shape a little at a time but I feel so light headed and end up quiting before I fall off the eliptical. Perhaps my brain really isn't been getting enough blood. That's a little scary. Hope it doesn't cause permanent damage. Thanks all for the info! Brye

For me I've also found it's a lot of work just picking up before she comes every other week. It's all well worth it though to know once I have picked up someone else is coming in to finish!! That is the one day a week I can sit in my house guilt free after my house cleaner leaves and feel like I can read a magazine. (Yes this is my 2nd post on this topic but my housekeeper has saved my sanity) Brye

You go!! Thanks for posting what worked for you! Love hearing success stories and what worked to get you there!! Positive attitude has been key for me also in not allowing myself to become inactive and not giving up. We're all different with our symptoms, past historys, and outlooks! I loved reading your post and never plan on giving up or losing my positive attitude!! Thanks and best of luck!! Brye

Best money I could have spent. It was a little awkward the 1st couple times but I've gotten used to it. We've chatted enough that she knows about my limitations! Mine comes in twice a month. Wouldn't have it any other way now!! Brye

Free child care and an napping suite!! Brye

My 1st thoughts when I read your post is that you shouldn't be emberassed and my 2nd thought was take out food. I guess maybe just be prepared with ideas that you feel like your body can handle. Someone suggested hanging out and watching a movie. If you're self conscious about always feeling sick just tell him you're really tired this eve and pull out your list of things you could do! I'm brilliant with suggestions but I also am famous for hosting a playgroup and in the end thinking what the heck was I thinking. I do love having friends over though and I don't want to isolate myself either. For me though having friends over also means more eyes on my kids and playmates. I understand feeling sick though and still not wanting to admit it. I admit it I guess but I still beat myself up trying to do the things I would normally do when I was healthy. So in the end I guess no great advice from me but I totally understand what you're saying!! Brye

I feel like that's what happened to me. I made it through 3 pregnancies with only mild symptoms and with the 4th I just couldn't bounce back. Now I have a really hard time keeping up!! I'm remaining optomistic that it'll get easier as they grow older. Brye

Thanks for sharing. It's so nice to hear that there are those who are doing better after long struggles. Thanks for taking the time to update!!!! It gives so much hope!! Brye

Not offended one bit! It would have been a really tough decision on whether or not to have more kids if I had known about my POTS syndrome. I'm blessed with 4 fairly "easy" children so far. (are any children really easy) Let me clarify ... no food allergies, no obvious health problems, fairly laid back, and GOOD SLEEPERS. (this last one is key) That has been my saving grace! I also have a husband with a stable job with good health insurance (thank goodness) who is willing to help out and not afraid to change a diaper or bathe a child. Otherwise I would probably be in need of a therapist to help me cope or a very good nanny!! Brye

My POTS symptoms developed after baby #4. Looking back there were warning signs with my other pregnancies but nothing I couldn't blame on just being pregnant. Now we're just doing what we can to keep up with them all. Baby #4 is lucky to be here because if I had known I would develop this we wouldn't have 4 babies. The perk though to having so many is they always have a playmate!! I also have 2 in school during the day which helps out a lot!! Brye

Thanks for all the recent posts from moms of older kids. They were very encouraging and I appreciate all of you taking the time to write them. Guilt is a hard thing to deal with it's nice to hear how resiliant kids are in the end. We all just need to keep doing the best we can I guess. I'm so thankful that I have 4 energetic, healthy kids! When I look at the big picture they are what keep me going!! Thanks for the wise words!! Brye

My watch with the chest strap says water resistant. I'm not sure that's water proof though as in can swim with it. Brye

I bought mind for 50$ from the "Jonathan no excuse work out site" that I got started on through my flylady yahoo group. I'm very pleased with it. IT has a chest strap I wear and the watch and it seems very accurate. I didn't think the price was too bad. So far I haven't been able to work out since I bought it but it has a lot of great work out features you can use to calculate highs, lows, averages, all kinds of fun stats. Good luck!! Hope you find the right one! Brye

Welcome! There are many of us trying to keep up with little ones while dealing with our symptoms. Hope and determination is what gets me through. It will get better and I won't accept an alternative option. My kids are very understanding but it's been really hard on my 7 year old who just wants a good game of basketball from his mom. My kids love playing board games though and seem to just like to spend time with me ... even if it's laying around watching movies. I Hope you can find some help with your symptoms. I haven't made it through the waiting list for Dr. Grubb so I don't have any input on that one but I hope you can get some good advice!! I have found an EP doctor who has been very helpful and I'm very optomistic my symptoms will be controlled at some point. I've also had POTS for almost 2 years. I've had some horrible doctor experiences but I'm not giving up! Good luck and let us know how it goes!! Brye

I'm 6'2, 250 lbs, female

Nancy ... I was wondering if you have 2 holes have you had any fixed or do you not need to? I'm not sure if I'll need mine fixed until after I have my TEE next week.

I've been trying to control my POTS symptoms for over 1.5 years. I've gone through numerous cardiologists who have tried to treat my symptoms. I'm seeing an EP doctor in Little Rock, AR and he ordered a bubble echo and found a congenital heart defect. I now need to go back for a TEE (transeophageal echo) to see how big the hole is. Wondering now if this is maybe the cause of my POTS. I'm holding out hope that maybe if they fix the hole it would resolve my tachycardia. I'm sure the high salt diet has been great for my heart if this defect is the problem! Time will tell I guess!! Brye

Have you been tested for mono ... I have a POTS dx and had a stretch of low fevers for 6 weeks. I blamed my POTS for the fevers and the fatigue for about a month and finally saw an infectious disease doctor and it was mono. No treatment but at least I had a reason for it! Good luck! Brye

I responded a while back to this question that I thought my ankle edema was just probably from my POTS and high salt intake. I just found out I have a congenital heart defect. You just never know. I tend to just blame it all on POTS but it's always best to rule out other causes too! Brye

I take xanax every night at bedtime. I feel like when I lay down to go to sleep my adrenaline doesn't shut off. I have horrible tremors and can't get to sleep. I don't think it helps control my tremors but it does make me sleepy so I don't have to endure that awful feeling as long! Hope it helps you!! Brye

Hope you get the help you need. I understand the frustration. I'll never forget shortly after I was diagnosed with POTS my daughter had this big birthday party with all her pre-school friends. I was trying to dish out birthday cake quickly and I couldn't control my hand tremors. It's so hard to control those adrenalin rushes and this wasn't something that really should have been stressful. I wish there was some way to control it!! Take care of yourself!! Brye