Brye

I have POTS and have been struggling with it just over 3 years. I'm not sure the cause of my POTS but I think being diagnosed with POTS is a lot of times an indicator there's a type of dysautonomia causing POTS to happen. I'm pretty comfortable at where I'm at right now. If my symptoms get worse I would decide to pursue a more detailed work up. For right now though I'm thankful to be able to drive, walk, stand, shower ... you get the idea. My most debilitating symptoms are for sure the fainting but I also have a lot of fatigue, brain fog and nausea. I miss working but I can't get anyone to take back a fainter, not to mention the hand tremors and memory problems. Who wants the nurse with the hand tremors. Hope you get some good advice!! Brye

Pretty sure it's not something you should be starting and stopping abruptly. It's a drug you're supposed to wean off of even at low doses. I don't get headaches from it. Have you tried taking it yet? Maybe you won't have any troubles with it. If you start at a very small dose you can kind of see how you'll respond. I don't like the fluid retention much but the benefits for me outweigh the side effects. Brye

I suffer from a lot of momma guilt!! My kids however are very confident, compassionate, and have adjusted well. I have a babysitter who comes in during the summer. She comes 3 times a week even when I don't have anywhere I need to go. She's able to take my kids outside on hotter days, they have a great time and I get a little rest. I also have the guilt of missing baseball and softball games and totally understand wondering what other parents are thinking. My close friends know I'm sick but parents of teammates don't know and my kids teachers don't know. My daughter's quote ... what is your mom really good at? "SLEEPING" Wonder what that teacher was picturing. My kids all love their schools and love the friends they get to play with. It's really good for them. When I'm having too much momma guilt I try to take a step back and remind myself how blessed I am to be here for them at all. They would be lost without their momma!! I make the most of the good days and get through the bad days. They are very understanding and appreciate the time we do have together!! When I do make a game they are extra excited!!! Brye

Happy Mothers day to all!! It's exhausting being a mom and trying to deal with POTS. All of us POTSY moms need to support each other and not forget to take care of ourselves. I'm so thankful for each of my kids, they are the reason I get out of bed and work so hard to get better each day!! Wishing you all the best this Mothers day and don't ever give up ... even on the bad days!! Brye

I had that a couple years ago. I had everything scanned and tested. My infectious disease doctor finally discovered it was probably mono. Brye

Naomi: You really need a lawyer to help. You've gotten such great advice I really have nothing to add but hope you find some help soon! I'll be thinking of you! Brye

I did get an approval on the 1st try. For those of you hesitant to even apply or waiting to find out the 1st response there is a chance. I waited over a year after my diagnosis to apply because I had heard so many rejection stories. I did seek the advice of a lawyer friend prior to applying the 1st time and he was extremely helpful. I also understand the frustrations with doctors when it seems like they aren't taking your symptoms seriously the temptation is to give up on doctors all together and stop seeking help. That's always an option but that's also when your documentation of your symptoms ends as well. The lawyer really had me prepared to have to appeal, my young age (38) he told me would work against my chances. I was shocked and relieved when I got the approval letter. I just wanted to share for those who are hesitant like I was in the beginning. For those of you fighting the system right now I wish you all well and hope you find someone who can help! Brye

So sorry Lieze! I'll be praying for you. Raising 4 kids is exhausting for a healthy person. There is someone who needs something every minute of the day it seems. There is more work to do in the house than 2 people can ever do, especially since it sounds like your husband has things he needs to deal with. I get frustrated with my kids as well when they can't decide and the need to sit down is so overwhelming I can hardly stand it. Then if I lose my temper I feel bad because I know they don't really understand. You've already gotten some great advice I really don't have much to add. I am a member of a local MOMS club and that has been a great source of support. Maybe you could see if there's a group in your area. MOMS are great advisors and maybe they have some ideas of local resources. That's where I go if I need a babysitter, plumber, house cleaner, crib, clothes, ride for my kids, you get the idea. It's a yahoo group if you want to look and see if there's a group in your area. I'll be thinking of you. I must go now and try to do a few dishes before I go to bed. Similar situation here too!! Constant chaos!!! Brye

Have they done a holter monitor to see if you're having any rhythm problems? I exercise on a recumbant bike. Less risk of falling. I have a fast HR feeling sometimes while sitting but when I check my HR it seems normal. I've kind of attributed it to some type of adrenalin overload. Brye

Standing or sitting? Mine are definitely lower when I stand up. Sitting though the lowest I get is in the high 80's systolic. Are you having symptoms when it's that low. I would look into a cause if mine were that low. Brye

ACB, I had a work note that had a diagnosis of Potts as well. They had to change that one too. It was from my cardiologist, you would think he could write the proper diagnosis. Brye

I take zofran and it helps. Phenergan just makes me sleeping. Brye

Google Jonathan No Excuses workout products. They have one that is less than 45$ with free shipping. Brye

I don't have any brilliant advice but I did want to wish you well. Hope it goes well and is approved soon! I didn't have to have any follow up testing. My lawyer did tell me it seemed to him you have less of a chance of being approved at a younger age on the 1st try. Good luck!! Brye

I have one I like. I got it on the Jonathan No excuses work out sight. It cost less than 50$. I've had it over a year and use it all the time. It has a chest strap you wear with it but my HR's are right. Hope you find one you like! Brye

I do a cardiac maintenance program at the hospital fitness center. It's mainly for cardiac rehab grads or those who need a little extra supervision when they exercise. It makes me feel more at ease knowing there will be someone to help if a problem comes up. They have a defibrillator hanging on the wall, someone there who knows how to use it, and the center shares a parking lot with the ER. Perfect set up. I love the recumbant bike. Seated exercise and I can work hard and not worry about falling off. Brye

I think Mom guilt is unavoidable. We all want the best for our kids!! I have 4 kids 8,7,4,3. This is a challenge for a healthy person. I have learned to use my resources. I have no family nearby but try to schedule there visits during spring breaks when my kids are home or when my husband may be gone for a trip. My friends are more than willing to help if asked. Friends with kids similar ages have been key. Play dates have been so helpful to run off energy for my kids, especially as they get older. I may not be able to do all that I would like with my kids but I look at all my kids and they are happy, healthy, and they all love there mom. The more people in there lives the better and that love from others doesn't take away the love I have for them and they have for me. We have some adoring babysitters, teachers, and even a housekeeper that adores them. I will always be there Mom and will cherish all my moments with them. My kids have been very understanding and are very open to just sitting and reading a book or playing a game. You're not lazy, you're sick and doing the best you can. I have to remind my husband occasionally. Improvements have been made but I'm EXHAUSTED all the time. Although I like to hide the fact that I am sick I give my friends an occasional update so they are aware that I stilll struggle. Those reminders seem to make a difference if there's something I can't do people tend to be more understanding. My kids are the reason I get up each day. If it weren't for them I would not be pushing myself so hard to get better. I will never give up because they depend on me and it may not always be perfect but I will not quit trying. Keep fighting for your health! Cherish the good days and survive the bad days!! Brye

I wear them to try to raise my BP. Not sure how helpful they are if you have high BP's. I don't find them terribly comfortable but they definitely are helpful. Brye

I didn't know you could get a watch to track BP's. Learn something new every day. I have a polar type watch I got on the internet I like for less than 50$. No BP tracking though. Brye

You can exercise with POTS. I don't work out without my HR monitor. I wait to move on to the next task until my HR drops below 100. I also take a break when it goes over 140 because that's when I start to get really light headed. I'm not suggestion you use those #'s for you. You have to try it and see how you feel to figure out what your ideal #'s are. Brye

Laundry system ... Hmmmm. A common response I use is I'll add that to the bottom of my to do list. You need to take care of you. We have 4 kids as well. There is more work in this house than the 2 of us can conquor. I had a chat with my husband regarding the areas I felt I was struggling with. I told him I either needed more help or I needed to hire someone to help and we would budget that in. I now have a house keeper who comes every other week and use babysitters during the summer. Dinner Divas ... that was a fun find ... they deliver meals to the house and all you have to do is heat them up. My husband travels as well. when he's gone practices and games are on hold if I'm not up to it. They will survive missing an event. Some times I can recruit another parent to take my child. They know I'm struggling and are usually more than willing when asked. Chronic illness is hard because people forget you're sick and don't offer help. When I do ask though my friends have really stepped up. A also try to time my family visitors with my husbands travel. They Get grandkid/niece/nephew time and I get extra help. So tough and so exhausting. I'm always overwhelmed. Don't forget to take care of you though!!!! All those things are listed put a dent in the budget but hospital bills are way more expensive than dinner divas,babysitters, and housekeepers. Hope your appointment goes well Saturday! Take care of yourself and hopefully all else will fall into place!! Brye

I wear one. I don't look at it unless I am having some concerning symptoms. I've determined that my goal is not to have perfect vital signs my goal is to feel well. I've noticed my heart rate does drop in the 40's at times. I'm more likely to black out if my heart rate is really low before I stand up. I tend to get lightheaded when my HR goes above 130. I also only check my BP if I'm feeling bad or adjusting meds. Otherwise it just stresses me out. It's difficult to know what to be concerned about when all the #'s are so abnormal. I have an implanted recorder as well and that makes me feel a little better because I know if there are any life threatening rhythm problems they will most likely be recorded. Brye

I just walked into the DMV with my note and they gave me the tag for the mirror immediately. I didn't ask for a license plate though. I thought there would be a charge for sure but it didn't cost me a thing. Brye

Scary, but great news they found it and it may be something that can be fixed. How great would that be if it resolved your symptoms!! I remember when they 1st found my heart defect I was actually happy maybe they found a cause that could be fixed. Didn't turn out that way for me. Oh well! Keep us posted, thinking of you!! Brye

I was lucky. Mine kicked in about 1 week or 2 after baby #4. I was in the hospital with nausea/vomiting and was diagnosed with a kidney infection. I was admitted and a nurse noticed my HR was in the 30's. They ordered a Tele monitor and it went from 30-160's every time I stood up. I had been fainting prior but I also was pregnant and then I got sick after. It was a cardiologist who diagnosed it but sent me home without treating it after 2.5 weeks in the hospital. I kept fainting and returned and finally an EP doctor was willing to treat it after a TTT confirmed it. I feel blessed to have been diagnosed so quickly!! Brye