Brye

Thanks for all your replies! Some good suggestions and I'll look into them all for sure. I think the Beta Blocker (atenolol) has a lot to do with my fatigue as well as the bradycardia it causes. I also have 4 kids and I know that's a big part of it. I had mono this past year as well and that may be back. How would one know due to the chronic fatigue anyway. It's really hard for me to see exercise as a bad thing since I've always been an athlete. I think it is true that the POTS somehow doesn't allow the body to recover as healthy people would after a work out. I may try to cut back a little and see how that goes. I LOVE the kick back and be a guilty lazy slob idea but I've discussed that one with my kids and that was denied. I have called the Grandparent 911 hotline though and they are coming to visit for 3 weeks. YEAH FOR ME!!! Maybe I can catch up on a bit of sleep! Thanks to you all, I'll be sure to post if I figure out a cure to the constant fatigue!!! Brye

Medical expenses if you go over a certain percentage of income. This includes dental, insurance premiums for health insurance, equipment, copays,meds, mileage to and from appts! We went over the amount this past year and were able to deduct some for this! Brye

Today: Sunday My husband was home so he got up and got my kids dressed and fed and I got to sleep in until 8:00. I drove 3 kids to Sunday School, my son was at a sleepover so that was a small break for me! Stood waiting for my son to come out of Sunday school when my daughter said "Jonathan isn't here today"(BRAIN PAUSE) Went to walgreens to do a quick round of coupon/discount shopping during Sunday school. Headed home and made lunch, worn out so I took a 2 hour nap. (SUNDAY FAMILY NAP TIME FOR ALL) Headed to the gym to do my little workout. (Walked 20 min and biked 20 min) Brought dinner to a friend who had a recent death in the family. Came home and made dinner for the family and washed a few dishes. (I'm never caught up on these) Got the kids to bed by 8:00 and watched the olympics for an hour while folding some laundry. Shower/computer time and off to bed!! This schedule would make a non POTS person tired!! I can't ever imagine working an 8 hour shift though. My mid day nap is critical. I joke with my friends about how I'm always off to nap, they have no idea this is a necessity for me!! Brye

Thanks Frank!!! I laughed out loud at that one!!! Brye

This is my worst symptom right now I think. I'm just dragging all the time. My HR's seem fairly well controlled but I'm so darn tired all the time!! I"m trying to increase my activity gradually hoping it'll help in the long run but I'm so exhausted! I nap every chance I get but can never seem to catch up!! I wish my toddlers could lend me some of their energy. Any tips? Go to bed earlier perhaps? There may not be an answer or cure but I know you all could sympathize anyway!! Brye

Exactly Hollie: I walked past the diaper bag on the way out the door. Then I drove past the drive through doughnut place to get a healthy nutritious breakfast of doughnut holes for my kids on the way to their day care place! SO FRUSTRATING not to have a functioning brain!! Brye

THANK YOU THANK YOU THANK YOU For sharing!! I Laughed out loud reading some of these. It's nice to see others who can laugh at themselves in spite of such challenges!! I also got some good tips out of these as well! I was a nurse pre=POTS as well and now I can't even take my own meds right now much less be responsible for someone elses! I think I may develop a check list for the car!! GREAT IDEA!! I've also noticed when I'm typing as well the words don't come out right so hopefully this makes sense!! 1. Start Engine 2. Double check to see that door is open 3. Count kids in the back seat 4. Make sure diapers are available. My kids can be helpful as well. I'll never forget my mom of the year moment when we were at the dollar store, I was distracted as my son ran out ahead. I reeled him back in the store grabbed my bag and headed out with my older 2 kids. My son said "mom are you forgetting someone?" Here my daughter who was 1.5 was sitting in the cart! That would have been bad! (I was pregnant at the time so that didn't help the # of brain cells) It's one of these things that although I feel like it's been a little worse I'm afraid to complain because then I'm doomed for another thousand dollar work up! I'm still hoping it's just a temporary change and it'll get better. Thanks to all who have shared though!! You've made my night!!!!! Brye

Over the past 2 weeks I've had some bad brain pauses. I looked right at the photo guy at my daughters basketball game and said the coaches wife is right over there, HE'S the one in the red shirt. (It was a husband) I didn't even realize what I had said until I saw the photo guy walk away with a confused look on his face. I was trying to write the date down on something today and I said to my husband "it's January what" I dragged all 4 kids to their 8:00 well child check-up early this week only to have the receptionist say it wasn't until next week. I looked when I got home and sure enough it was clearly written on the right date on the calendar. Tonight I went to take my xanax and grabbed my atenolol instead and took that by mistake and didn't realize it until I swallowed! I think I'm losing it!!! I say things totally off base and don't even realize it's come out wrong until someone corrects me. Mini strokes or something? It's hard to know what to be concerned about. Is this just a bad stretch of brain fog? I've been super tired lately and now I'm thinking maybe I've come down with mono again. I've been trying to get back in shape a little, maybe my body's just retaliating. I'm afraid if this keeps up I'm going to leave one of my children behind! Anyone with similar stories? Please share them now!! I did back out of my garage once without opening the door but that was a long time ago! I'm only 37 so I don't think I'm quite at the senior moment age!! Thanks! Brye

I think that's one of my most bothersome symptoms. I've had my beta blocker (atenolol) increased a bit but I still have tremors. I can't go any higher or I get too bradycardic. Good luck! Hope you find a resolution. I HATE tremors!! Brye

I never had an Independent Medical exam. Luckily my disability was approved the 1st try. I think a little lawyer advice may have helped!! Brye

Something makes me super sleepy all the time. Not sure if it's the florinef, atenolol, bradycardia, POTS, or maybe just 4 kids. Probably a combo of all for me. Actually I've been taking a couple day florinef break to try to get a ring off my finger that is stuck due to swelling and I haven't noticed being any less sleepy so it's probably not the florinef for me. Brye

I have a lot of Chest pains since my POTS diagnosis. Hopefully they've done all the basic tests on you to rule out the blocked arteries, blood clots, etc. I'm sure you've tried this but perhaps anti-inflammatory meds? Worth a try. I don't have much luck with thes but maybe you will! Brye

Sorry you didn't get as much info or help as you were hoping for. I think it's been about a year since my med records were faxed there and I haven't heard a thing. That is such a big fear of mine that I'm going to travel all that distance and put my life on hold and get no answers or improvement. Even if they called now I'm not sure I would go. I feel you're frustration!! It helps some that he is friendly and sounds like he is sincerely sympathetic. If I traveled all that way though and felt like all I got was a hug, some sympathy, and a "don't worry" I would probably be an irate patient. Hope his suggestion does provide you with some improvement!! Brye

I feel so bad for you!!! I was blessed with a quick diagnosis of POTS but have had a terrible time controlling the symptoms. I've seen so many cardiologists here in Arkansas and none of them really wanted to try to treat it. I think they either didn't have the time or were too unfamiliar with it. I used to be an RN as well. I'm no longer able to work. My medical bills have been huge the past couple years as well and I've seen numerous doctors who have tried and failed to treat my POTS. I'm now driving 3.5 hours to Little Rock to see a different cardiologist and still no miracle treatment for me. Have you considered applying for disability? Every little bit helps. I spoke with a lawyer before applying and he gave me a few tips and since I had seen so many doctors there were a lot of records of failed treatments. My disability was approved on the 1st try. You never know but it's probably worth a try until you're able to get your symptoms under control. I know it's not always approved as easily but it can't hurt to try. You really don't need to hire a lawyer unless you're denied and need to appeal. I don't know much about doctors in Idaho but I wish you the best in finding one. There is a list here on this site of doctors who treat autonomic disorders. Maye there's one in Idaho! Brye

NEXT DOCTOR FOR SURE!!!! Move on and try not to dwell on that bad advice. Keep searching ... That doctor just goes on his merry way and continues on with his life without another thought about it! It's not about him it's about you and you need to take care of yourself!!! I hate that that happened to you but don't stop there!! Brye

I have intermittent foot/ankle swelling and at times it's worse than others. My left is always worse than the right. Not sure why but I have a lot of varicose veins and venous insufficiency I just figure it's worse on the left. When it's really acting up I'm always torn on what to do because the obvious things can be horrible for me. (less salt, diuretic) One thing that does help is my compression socks. If I wear those a couple days in a row it takes care of it for a while. Good luck!! Brye

I haven't been swimming since I've been diagnosed with POTS I don't think. It's only a matter of time before I attempt the pool though and I think I'll be careful not to over do it on the 1st try when I do. My kids LOVE to swim!!! I've been walking and biking on the recumbant bike and so far that's been going OK! Sorry I don't have an answer but thanks for posting this ... it may help me in the future!! Brye

I wore a 30 day event monitor and based on those results they ordered a TTT and were able to confirm my POTS diagnosis. Now I have an implanted loop recorder to try to diagnose the exact cause of my symptoms so they can be properly treated. Good luck! Brye

I wear the mediven thigh high ones. I'm 6'2 and they're pretty comfortable! I get mine at a medical supply place where they measure to be sure they'll fit properly! I'm probably in the mens sizes but I'm not in them for the fashion statement anyway!! Brye

I try to be thankful that it's not worse and be thankful for what I have. I had a friend who became ill at about the same time as me. Her illness was colon cancer and she passed away about a year ago. She had 2 young boys. Thinking of her makes me feel blessed with each day I have here with my family. I still cry occasionally but I think that's therapeutic for me. I have a lot of guilt about my lack of energy and not feeling like I can keep up with my kids like I should. Then I watch them enjoy life though and they are just fine and we're all doing the best we can!! Good days/ Bad days! You can always turn to DINET friends for true understanding! Take care! Brye

I was googling information about POTS and came upon this sight. Brye

Wow!! That's awful but parts sounded very familiar!! My last ER visit I heard the cardiologist say several times "there's no cure for it, we can't fix it, so there's nothing we can really do for her" I know there are several doctors out there who are in close competition for worst doctor of the year. I've met several I could nominate. I also have a great internal med doctor who has been more than helpful and he makes up for the rest of them a little bit!! Sorry you're having trouble and hope someone can help! I've struck out here with about 5 different cardiologists who don't even want to attempt to help treat the symptoms. I now drive 3.5 hours to see my doctor. I'm well aware there is no cure but I'm also aware there are numerouse treatments to improve life quality. Hope you find the right one for you!! Brye

Yeah ... I was shopping for shoes on the internet once and ended up on the cross dresser sight. Good thing men need compression hose as well or I would probably be out of luck. Brye

What a nice offer! Those things are SO EXPENSIVE!!! I normally buy mine at the end of the year when I've met my deductible and insurance will pay them. Hope someone can use them!!! If I don't meet my deductible I've paid a small fortune for them and there is a 2 pair per year limit. I usually go through more than 2 pairs per year! I wear the thigh high ones. I'm 6"2 though so getting waist ones to fit is impossible! I wish I fit into the waist high ones. I would think they may be more comfortable. Brye

Sorry this happened to you! There are a lot of great nurses and a lot of burnt out insensitive ones as well! It sounds like they could have handled it better. Some of their comments sound like they were inappropriate. However ... if I were standing there and you were seated and fainting in front of me. Getting you up out of the chair wouldn't be an option until some back up help arrived. Can't stand you because of fall risk especially if you're slumping over in the chair. Laying you on the ground would require more than one person as well to do it safely. The floor really was the only option and that's kind of a last resort. If you're still talking I would think the oxygen was reasonable to see if that improved things enough to go for the bed option. I think the only reason I would sit you straight up though is if it were the only way I could keep you from falling off the chair. Did you end up on the floor or were they able to get you back to bed? Tell me they recruited some help and at least got you back to bed!!! You should write a letter and explain the situation. If there were enough people around to help for sure they should have been getting a wheel chair and getting you back to bed to allow the blood flow to return. I'm the 1st one to write a letter if I feel something is inappropriately handled and it's the right thing to do. If you don't report that kind of behavior it's allowed to continue and other patients end up being treated badly. I also try to take the time to write a letter if I encounter someone who is really helpful, pleasant, or good at their job. It's nice to hear the positives once and a while as well!! I'm sure there are many of us who have horror stories about nurses to share. I myself have several. Hope you start feeling better soon though and hope you get the good nurses the next time. The hospital is a scary place to be, especially when you have to worry about safety!!! Brye