Brye

I had healthy babies with undiagnosed POTS as well! I'm a fainter but baby survived the falls fortunately! My last baby was my biggest healthiest one yet and that's when my symptoms were getting really bad. I'll share a brain fog moment for me! I was shopping at a dollar store with my 3 kids and My oldest ran out the door. I ran to catch him and got him back inside and told him he needed to wait for the rest of us to be ready before walking out. I grabbed my purchases and turned to walk out and Jonathan says to me "mom are you forgetting someone?" My youngest daughter who hadn't made a peep the entire shopping trip is still sitting in the cart. Baby #4 healthy and all my other babies somehow have survived all my brain fog moments!! Take care! Very excited for you!!! Brye

I see Dr. Neuhauser in Little Rock Arkansas. Not sure how far you are from there but I drive 3.5 hrs to see him. He seems pretty thorough! He's done a tilt and implanted a loop recorder. His nurses are very accessible and will find answers if you have a question or problem! I had a horrible time with doctors as well and he was the last in-network provider for me before I searched else where. Good luck!! Brye

I have a lawn and garden kind of husband as well. Our yard/lawn is immaculate ... then you walk into the house. We argue a lot over chores around the house. Even if he just would empty the dish washer once in a while that would help! When pregnant with baby #4 I finally told him I needed more help. I needed him to give me just 15 minutes a day to help out with dishes/cleaning/floors etc. I told him if after a couple months he found this too difficult it wouldn't be a problem I would just hire someone to help me. After our 2 month evaluation nothing had changed. I now have a house cleaner who comes in every other week. It's hard sometimes because half the battle is picking up the clutter but it's well worth it. That has helped us some ... not solved everything but helped!!! Brye

Definitely fighting fatigue. I have 4 kid fatigue. I have POTS which causes excessive fatigue. I take atenolol which causes excessive fatigue. Bradycardia ... fatigue. I'm also recovering from mono .... FATIGUE!! Have you by chance been tested for mono? Never know? I haven't pursued the CFS diagnosis. I guess I'm not familiar enough with it to know whether it even pays to pursue. I just feel like I'm doomed to be tired. I sleep as much as I can and I still feel like I could crawl back in bed at any time. If you find a resolution please share it with us!! Sorry I can't offer much advice. I think I need to go to bed now. All the fatigue talk has made me tired!! Good luck! Brye

Thanks so much Nina for sharing that article about quality of life with POTS!! I hadn't seen that one before!! I may share that one with my husband. He tries to understand but it's hard because I don't look like an unhealthy person!! Brye

Sorry you're having so much trouble!! I'm caught in the cycle as well. When I fainted at my PT appt last week After I went to the ER my HR dropped in the 30's. They held my atenolol for a few doses and sent me home the next day. They sent me home with the my heart racing every time I stood up. My blood pressure plummets usually when I'm sick and it's the same balancing problem ... need the atenolol for my racing heart but is it too risky when my BP is so low? It's such a frustrating balancing act. I'm so torn on getting a pacemaker because at least I wouldn't have to worry about the horrible Bradycardia feeling. Talk about causing fatigue!!! It's such a permanent decision though!! Great description on the vibrating inside feeling. I HATE that! Not sure what that ones from. It keeps me up at night though and I take xanax to try to help it and it makes me fall asleep quicker but I still vibrate!! It happens a lot during my mid day naps also if I wake up before my alarm goes off. ODD!!! I haven't ever fainted laying down though. That would be very concerning!!! That's when it's not longer just an orthostatic upright problem. Horrible dysrhythmia maybe? Monitor needed perhaps? Good luck and sorry I'm not much help as to treatments but I can sympathize!!! Brye

I find myself with all these symptoms and I just figure they're POTS related. For me it's partially because after seeing so many doctors and getting this answer "just pots" I've started using it myself. I also know there are certain things that if I complain about them they'll require a whole different specialist and I don't have the energy for any more work ups right now. The worst part for me is when they look at me and tell me "of course you faint ... you have POTS" The last cardiologist I saw reminded me there is no cure and there's nothing he can do for me. That's a whole lot of bologna ... I'm not expecting a cure ... just some help with the awful symtoms!! I share you're frustration and I also feel better now that I've vented!!! I am thankful to my PCP who has taken the time to do his research and isn't afraid to admit when he walks out of the room some times it's to google for some suggestions!! At least he's trying!!! Brye

What great advice from all of you!!! Thanks so much for responding!! Lifesaver ... I have that blob feeling too! That truly sums it up and I must overcome it. I blame some of my weight gain on fluid retention from meds but not all! A lot of it is just inactivity for me!! My stroller kind of acts as my trekking poles when walking. Kits ... How can you not love an eliptical!! So low impact and smooth!! I would take that over running every day. I actully used to mall walk all the time with the seniors in the area. They all loved my babes. I've become blobby and lazy though and it's so much work dragging them in and out of the car. Their stroller is almost more than I can handle itself!! I do walk in the neighborhood sometimes though and the kids love it!! I'm hesitant though after passing out with them. Erik ... Thanks so much for the article info and advice!! I had strong legs before this and have lost almost all of it. Maybe that's also contributing to my problems! I'll have to work on that once I figure out a work out routine! Brianala ... I was a rollerblader before my POTS. Love that you are able to do the roller derby thing!! I will rollerblade again but I need to get the fainting in better control! We have some good hills in the neighborhood and it makes a great work out!! Kayjay ... I do have some pilates videos and that's a great idea as well!! Love their 10 minute work outs!! That way if I get too tired there are frequent stopping points!! Firewatcher ... I don't know much about tilt training. I'll have to look into that a little more!! I'm not bed bound yet but I would love to go from blobby to dancing myself!! Ramakentesh ... Do you still drive? What I hate are the doctors who tell me not to drive but won't offer any advice or even try to help with treatment options. My last ER visit I heard the cardiologist say to the ER doctor ... there's no cure and theres really nothing we can do for her. Thats a line of bologna ... there's not cure but there are lots of treatment options and sometimes all it takes is a med adjustment. Flop ... did you find an exercise you could do without passing out. If you have please share!! I'm afraid to swim because the thought of the 15 year old lifeguard pulling me out of the pool makes me more ill. The hospital here has a cardiac maintenance program for those who have completed there cardiac rehab. Supervised work outs 3 times a year for 15$ a month plus the membership fee for the gym. I'm heading there tomorrow to see if they'll take me. I'm hoping at a hospital work out facility they won't turn down a fainter. We'll see! Thanks to all of you for your support!! GREAT SUGGESTIONS!!!!! Good luck to all of you in your fight to control your symptoms!!!! Brye

I've had a whiplash injury but it was quite a while before I became a walking POTS disaster. Otherwise no neck problems! Brye

It's been almost 2 years since I have been diagnosed with POTS. I can no longer work. I'm trying to reduce the # of pity parties I have for myself and have been trying to get back into shape. I've passed out walking with my babes in the neighborhood, fainted at my last PT appointment, and have even fallen off my eliptical running maching. My last ER visit the dreaded "do you really think you should even be driving" conversation came up. I have a loop recorder and so far there have not been any toxic arrhythmias that have caused my syncope. I need some ideas on what activities you all do to stay active. I was once a college athlete and now I can't even get a walking work out in! Also I was wondering if anyone has done a cardiac rehab program. This has crossed my mind as maybe a safe place to work out where there would at least be someone older than 2 to help out. Thanks! A very frustrated Brye

Love it!! How funny it is that so many of us can relate to this crisis!!! Thanks for sharing, I really needed a good laugh!!!! Brye

Thankful for: 1. 4 beautiful, healthy, energetic kids. 2. Great family and friends who help me keep up with my babes!! 3. Each day I have to enjoy my life! 4. DINET support!! Happy Thanksgiving!! Brye

What great suggestions Rach on keeping kids entertained!! Thanks so much for sharing! Ethans mom The hardest time for me with trying to keep up with my other kids was when I was pregnant. I wasn't officially diagnosed until after baby #4 but it was exhausting keeping up with my other kids and feeling so miserable. My babies are all here now and although I have all the unfortunate POTS symptoms they seems easier to deal with now that I'm not pregnant! My kids keep each other entertained a lot which is so helpful!! I'll be thinking of you during this blessed but difficult time and hope all goes well! I'm sure you know how time flies and that cute baby will be here before you know it!! Brye

This is such a common question with no standard answer. I have 4 young kids and I am so tired all the time!! Not only do I have 4 young kids I'm trying to deal with POTS that causes excessive fatigue and my beta blocker to control my POTS which also causes excessive fatigue. Those 3 factors right there make me feel doomed to be tired all the time. I've been diagnosed with POTS but so far have seen only cardiologists. I've tried to get back in shape but I'm also a fainter. I just spent Thursday night in the hospital after fainting at my physical therapy appointment. The cardiologist who admitted me reminded me there is no cure and there really was nothing that could be done for me. Very reassuring!! There was a stretch when I was running a fever along with my fatigue and after scanning everything they could think of to find a cause it ended up being mono which there is no treatment for anyway. I guess all I have to offer is understanding. I'm so tired of being exhausted and there doesn't seem like there's anything anyone can do about it. I'm thankful to have 4 healty kids and at the same time very frustrated that I can't enjoy them as much as I would like. Hope you find an answer and if you do please share it with us!! Brye

I try to hide the fact that I'm sick. I sign up for things I know I should be able to handle ... if I were healthy. For me I've become more selfish. I've hired some one to come help clean the house and I've gotten over the guilt. If I were healthy I could do it but I'm not. If I need a nap in the afternoon I take one. The cleaning and chores can wait. They'll be there when I wake up. Holidays really take their toll on me. I barely can keep up with life in general and then the holidays come and theres more work. I want to make them special for my kids but a lot of times I barely have the energy. I guess I've just learned to quit beating myself up over what I can't get done. I look healthy to everyone but I know how much I can really take. I've learned when I need to put life on hold and take a break for myself and my health. I can't imagine having to move!! Good luck with that and hope you get some good advice. I'll be checking on these responses for sure for some good tips!! Brye

I have constant fatigue but some of that I contribute to trying to keep up with 4 kids. Memory problems vary depending on my level of fatigue. Since we're sharing ... I backed out of the garage one day and forgot to open the door. That was one expensive hypoxic brain moment!! Brye

I had a 72 hour ambulatory eeg to rule out seizures. I have a POTS diagnosis but there was not evidence of any seizure problem. 2nd opinion sounds very reasonable. Hope you get an answer soon! Brye

I have good days and bad days. I have 4 kids that keep me going. I'm thankful to be able to function fairly well and for the most part I'm able to hide my symptoms from my kids. I HATE the fatigue. I think that's the worst part for me. Kids drain my energy to begin with and it's already running low. I want them to remember me as energetic and fun and some days I can barely get out of bed. I was also a nurse before Dx with POTS and right now there's no way I could make it through a shift. I'm still hoping that'll change at some point but for now keeping up with my family is my main focus. Glad you're feeling a little better right now. Hope that keeps up!! Brye

I hit the wall at around that time too and of course that's right when afternoon naps are ending and kids are coming home from school. It helps me a lot to take a 1-2 hour afternoon nap to get the through the eve!! Good luck! Brye

I have internal tremors/quivering but it's not concentrated to my abdomen. It keeps me awake and the best way I can describe it is it feels like my adrenaline just doesn't shut down and instead goes into high gear. I take sleep meds to help me fall asleep sooner. It doesn't get rid of the tremors but makes me sleepy at least. Brye

What a nice offer!! Thanks so much for thinking of all of us who could use a little get away!! Hard to travel with 4 kids but If I ever get a get away pass I'll keep this in mind!! Thanks! Brye

I miss Hot Tubs and baths!! There's that commercial on TV I see frequently where they have that walk in bath tub with a chair type seat. It's aimed at an elderly population but I've been tempted to look into that option. I occasionally look longingly at my neighbors hover round chair as well. Some times I just feel old and I keep thinking I'm too young to be old yet! Frustrated ... Brye (thanks for listening)

Makes me feel better that I'm not the only one who still feels cruddy in spite of fairly normal vitals. Mountain Girl do you see a cardiologist for you POTS or have you seen an auntonomic specialist? The explanations for symptoms in spite of good vital control seemed very logical. Now how can it be fixed? It's been very discouraging that my vitals seem to have improved and I still feel so cruddy all the time? So frustrating!!! I'm thankful for the improvements I've had but is this it? Brye

I've noticed this as well. My heart rates are so much better controlled now than they used to be but for some reason I'm not feeling a whole lot better. I expected to have more energy when my heart racing stopped, I was hoping to stop fainting, I was hoping my tremors would subside. Didn't happen. I've been seeing strictly cardiologists and I think I may need to focus on some of the other problems caused by dysautonomia as well. Brye

HMMMMM! Grandmother with cardiomyopathy. I had cardiomyopathy after my last pregnancy with an EF of 30%. It's resolved now thankfully. Grandmother and all 4 of her children had congenital heart defects as well. I also have a heart defect. Could be some connection? Brye