Brye

My negative TTT definitely doesn't mean symptom free but it was such a step in the right direction!! There are so many other symptoms that go along with autonomic dysfunction that I still need to resolve. I still have black outs and I'm definitely a fainter but my heart doesn't race like it used to with the meds I'm taking. I'm hoping the syncope will decrease in frequency. I would love to know how to conquor the excessive fatigue and my atenolol dose just got bumped up a notch so that probably won't help. Hopefully that'll help with the black outs though when I stand. This TTT was a breeze compared to my 1st one when they diagnosed POTS. My HR shot up to 160 and stayed there the entire time. I broke a sweat, got all cyanotic looking, and felt like I was running a marathon just standing there. This one I felt a little lightheaded and sweaty by the end but it was overall fine. I'm so hopeful that we're heading in the right direction. The other symptom I hate is the hand tremors. There are so many on this site who have such severe symptoms I almost hate to complain but this one poses such a threat to me going back to being a nurse. People who don't know about my illlness I"m sure think I'm going through some kind of withdrawal. Now that it's looking like I'm on the right meds I'm going to attempt to increase my activitiy a little at a time and hope for the best. I love this DINET web site and all the support it brings to us. Brye

Just wanted to share my joy!! My TTT today was negative with my current med combo. (atenolol,florinef, and potassium)I didn't pass out, my HR never went over 100, my systolic BP never dropped below 90 even after the nitro. On with the next round of getting back in shape and regaining control!! Thanks for all your support!! Brye

I've been worried about the house plant accusation too!! HA!! Brye

Thanks for the responses. Some good tips!! It's hard to explain to adults what the problem is much less a child. It's been difficult to know how much to tell them because their little minds wander so much and the next thing you know we've been spayed. (That one made me laugh out loud ... thanks for sharing that!!) I'm a little afraid to tell them I have POTS ... who knows how that one will come out at school. I'm just getting very tired of making excuses but don't want them to think I'm horribly sick. Thanks!!! Brye

How horrible to be treated like that. No one should be treated like that!! You can't fake a TTT and you've been officially diagnosed. I wish if doctors didn't think they could treat the problem they would just fess up and send you to someone who can help. Very frustrating but you need to keep looking for that right doctor for you who can look at your diagnosis and come up with a treatment plan with you. I've now gone through 2 cardiologist, 2 EP doctors and I'm now on my 3rd EP doctor who's giving it a try. One of them retired but the other 3 just weren't comfortable treating POTS because they hadn't seen it before. They would never admit to that but it was obvious. The 4 doctors together probably had at least 60 years experience in their cardiac fields but just didn't see POTS frequenty enough to know what to do. I was devastated when my one EP doctor retired because he was the only one who has tried to help. KEEP LOOKING AND DON'T GIVE UP. I've been dealing with this for 1.5 year so far and I'm just so hopeful I will get my life back at some point!! Good luck!! Brye

I need some help on when to tell my kids and what to tell them about being sick. For those of you who have had to take on this task I would love to hear your ideas on how you handled it. I try really hard to hide it from my kids. They think I'm a clutz and fall a lot but I don't know if I should tell them. Their ages are 7,5,2,1. Obviously 2 are to young but I have a hard time coming up with excuses for not making things. We don't go to the park because it's too hot. My 7 year old asks me what does it matter that it's hot. He keeps asking me when I'll be able to play basketball with him and why I can never take them to the pool. It's so heartbreaking!! I don't want them to remember me as a mom who is always too sick and tired to do anything. Anyone who can share what worked or didn't work for them would be greatly appreciated. I know there are a lot of people out there trying to deal with this illness and keep up with young children. Thanks! Brye

I wish I had someone to take care of me but even more I wish I had a live in nanny to help me with my kids!! Sometimes they suck all the energy out of me but they're also probably the reason I get out of bed and get dressed every day. I'm so thankful to my husband who has a good job and can support us all. That has been one of my saving graces!! I don't think he quite understands POTS but it's a difficult thing to understand unless you're the one living it. My 7 year old keeps asking me when I"ll be able to play basketball with him. I'm holding out hope that some day I will!!! There's my whine for the day! Good luck in your doctor search and hope you get some help!! Brye

I try to keep my friends updated actually. I think people shy away from illness and they don't know what to say. I know I have a lot of friends I don't see often and I finally just sent one mass e-mail out. I got a lot of replies thanking me for the update and offering help if needed. People didn't know how much trouble I had been having. It's always touchy for a friend to ask about a personal health issue. I just try to fill them in and save the awkward moments. That way when I do see them we can talk about other things. I don't know that I've had any horribly inappropriate comments yet. I guess one of my pet peeves is when I wear pants over my support hose because I'm embarassed I have to wear them and more embarassed about the horrible state of my legs and they say "aren't you hot wearing those pants?" The tempting answer is "yes and I may pass out if I stand here too long talking to you" The answer I use is I'm cold blooded. Keeping my friends informed so far has been a huge help to me! Brye

My stress test was in the a.m. and had no abnormalities. I didn't have any CP though during my stress test and they were afraid I would pass out if they got to that point. I would love a good EKG while I was having my CP and I would feel a whole lot better. I just have this horrible fear that there is some small ischemic event going on every time I attempt a good walking pace. Brye

I have CP frequently and I would love to know why. Some times it goes along with bradycardia. I can't walk any decent amount of distance without having CP. It's very frustrating. I've tried anti-inflams with no relief. I'm thankful my stress test was negative and I'm only 37. It doesn''t make it any less frustrating though!! Sorry no answers from here but great question!! I have the throat tightening a lot too. HMMMM! Brye

I get the heat part... I live in Arkansas and it's supposed to hit the 100 mark the next 3 days. My poor kids are going stir crazy because we can't leave the house. We try to go out early in the a.m. and I sit in the shade while they play in the driveway until it gets too hot. I dread support hose during the summer however I dread feeling cruddy and passing out even more. I used to be all self conscious and wore pants over them but now I've gotten over that and wear the thigh high ones with shorts and it's not so bad. I've found the 20-30 compression aren't quite as stifling hot as the 30-40 and do provide enough support to help. I had one EP doctor that told me I was drinking too much water and diluting out my system and gator aid would be helpful and should be included in my fluid total so I try to drink some of that too. I'm certainly not the expert but these are things that have helped me. (POTS is my dx) I haven't tried the cooling vests the price is a little intimidating but if the temps keep up the way they have been I may have to splurge. I just look at all my medical expenses over the past 2 years and It's hard for me to justify one more thing. If you're symptoms are still from your racing HR"S though I'm not sure what to tell you. My HR"s haven't been racing anymore I have more trouble with Brady from the BB and Low BP that cause my problems I think. Good luck though. We're heading to WI at the end of the month to visit family and I can't wait. COOLER WEATHER!!!!! Brye

I understand cardio doctors are busy but what is it about not taking any phone calls. If someone is adjusting my meds I don't understand why they can't just take a moment for a question here and there. POTS is a condition that requires some med adjusting and not always an appt is needed to do this. I've switched doctors and I have to drive a little further but I think now if I have a question about a side effect I'm having trouble controlling there will be at least a nurse who can handle a phone call and pass on a message. I'm also taking florinef with really no side effects that I've noticed on my low dose. I can tell it's helping but when I increase my dose I have too much fluid retention. I took midodrine for a while and kept a close eye on my BP. It helped but I had bad hand tremors from it so I had to stop. I think the key is to start at low doses and work your way up. Then you figure out what side effects you can stand and what you can't. I'm not a fan of taking medication but I REALLY hate passing out. Good luck!! Brye

I have bradycardia a lot with rates down into the 30's. I've had 2 EP doctors tell me that a pacemaker may actually be helpful. Why wouldn't it be? Several people now it seems have described symptomatic bradycardia. I know it won't help the tachy rates but if the feeling crummy is from bradycardia and the pacemaker kept this from happening why would that not help some of our symptoms. I've been agonizing over the pacemaker decision and I'm sure the only way to find out it helps is to have one put in. I just keep hoping the POTS will just magically go away and I won't need a pacemaker in the end. Any thoughts on pacers or has anyone else had one recommended for their brady rates. Down in the 20's is severe bradycardia right ... even if you're sleeping . Brye

I have a love/hate relationship with my support hose and my atenolol. I know they are both extremely helpful but the hose are too hot and restricting and the atenolol causes a little too much bradycardia and fatigue. If my POTS ever resolves I those are 2 things I depend on right now that I would be happy to do without!! Brye

I'm still trying to figure out the disability and how it works. I've applied for disability and I fall in the "husband makes too much money to qualify" category. That part has been denied already and now I'm waiting to hear about the supplemental type of disability that I think I qualify for because I've worked a certain # of hours over the past 10-15 years. I live in Arkansas and I'm not sure if different states have different criteria. Brye

Sometimes I just need a good cry!! I love it when I can hold my babes tight and just have a good cry. I don't want my kids to know I'm sick but when I have just my 2 and 1 year old to myself I can get a huge hug and cry in all at once. My kids (7,5,2,and1) keep me going and I just look at them and remind myself how blessed I am to have 4 beautiful, healthy, children. My pity parties can only occur during certain hours because I try not to cry in front of my older kids. I really don't want to tell them I have this illness but it's hard to hide it from them. They're getting so smart!! At some point I'm going to have to explain it to them but I just keep hoping it'll go away. I played college basketball and my 7 year old keeps asking me to come out and shoot hoops with him. Some day I will!!!! Brye

Sorry! Did you just cry when you 1st found out? I've been a nurse for 15 years and have worked ER for most of them. After 1.5 years of trying to control my POTS symptoms I've finally given up hope of returning in the near future. I'm remaining optomistic long term but for now I finally applied for supplemental disability. The reality hit when my EP doctor wouldn't clear me to go back to the ER and do chart audits (not even pt care) prn due to the high risk of syncope. I've often thought my ER nursing days may be over. I can't get the hand tremors in control and they're worse when I'm stressed (Which pretty much involves any trauma pt) I guess I wouldn't want the nurse with the hand tremors starting my IV. Not to mention half way through the code I may pass out. My EP doctor joked about wearing a helmet if I returned. I didn't find that one all that funny. I guess I just figured some day I would return to a less stressful area of nursing. The thought never ocurred to me they may not renew my license. I've just been trying to figure out how to keep up my CE's so I don't lose my license and my CEN title. To work in the ER there were all those CE's required and the hospital always paid for them. Maybe I won't have to worry about that in the end. I guess looking on the bright side (which I've been trying to become better at) I would think it would be hard to deny a disibility claim after that statement from the nursing board. Best wishes to you on the disability claim. I'll send some prayers in your direction. What a frustrating illness!!!!It makes me shed tears just thinking about it!! Brye

I had never heard of a seat cane until now. What a great idea ... here I've had a folding chair tucked under my stroller at all times. Those look so compact and easy to keep on hand. Thank-you thankful for that suggestion!!!! Brye

I've been taking pain meds the past few weeks for a back problem. I have a POTS diagnosis. If I take any sleepy meds I'm way more likely to hit the floor ... especially during the middle of the night bathroom trips when I'm already half asleep. Be careful and RISE SLOWLY. Brye

I hate getting caught in a standing conversation. I too start looking around for the nearest bench and then start breaking a sweat praying I don't pass out mid conversation. And then I'm forget to pay attention to what they're saying anyway because I'm busy looking for a place to sit down. I like the "lets sit down and chat" line. I plan on using that one in the future. I can tell when I'm having a more light headed week because the palms of my hands start to feel bruised from leaning on furniture, railings, etc. Anyway ... I'm feeling your pain!! Brye

After I finish this I'm heading for the "how to lose a doctor in 30 days" post. That sounds like a good laugh. I am so blessed to have a great PCP. Any problem I have that isn't being dealt with all I have to do is call him and he'll back me up. (You don't live in Arkansas do you?) My EP doctor was also wonderful and was doing everything he could to help until he retired in January. I understand the anxiety of seeing a new doctor. The new EP doctor that took over was bombarded by a double patient load and I don't think he had ever treated a POTS pt. My 1st appt with him he didn't even look over my meds or hx before walking in the room. He told me I was diluting my system with water and that gatorade was going to be the solution to my problems. I should try this and follow up in a year. (the gatorade idea was worth a try but didn't make a difference in the end) He didn't really review my history until I asked him for a work release. Then he decided he better look over the history to avoid liability if I pass out at work. He then proceeded to tell me after further review I was unfit to go back to work (computer chart audits ... not even E.R. nursing) After reviewing my chart I was a candidate for a pacemaker if I wanted. Sorry ... I just went into vent mode. I would make it clear that you're aware that these aren't common conditions but that you really just need someone who is willing to take the time to help you treat them. I know that EP doctor of mine probably could be very helpful if he was just willing to take the time to help. Half the battle is finding a good doctor who is up for a challenge. Good luck to you though. I hope you find someone who is willing to help!! Brye

Thanks for sharing! I have 4 kids also and was DX with POTS 1.5 years ago after having my 4th. It's great to hear how much you've improved. I also have horrible heat intolerance and we live in Arkansas. My kids love the park but that's not even an option this summer. It's nice to hear there's hope for improvement. Hope your better health continues!!! Brye

Reading all these posts on this topic make me SO THANKFUL that they were able to diagnos my POTS almost immediately. My frustration now is with finding the best specialist to treat it. After hearing all these awful missed diagnosis I'm now looking back and appreciating the fact that I haven't had to go through all that. How much can a person take without ending up with a psychiatric dx. Good luck to all of you and these have been helpful to read. I often wonder if I'm depressed but I think frustrated is more accurate for now. Brye

Has anyone see this doctor? Any good/bad reviews? I'm pretty confident POTS is the right diagnosis I just need some a doctor to help with which meds I should be on. Thanks! Brye

I'm so glad you asked this question. I have been so torn on this. My current EP doctor I don't think has ever treated a pt with POTS and I often feel like I'm treating myself but feel guilty if I adjust things without approval. I feel like I need to be on a different beta blocker and when I brought it up to him he said we could switch it if I want. I guess I would feel better if he could come up with some treatment suggestions based on his medical experience. He could at least attempt a little research for me to help figure out the best one for me. There was a stretch when I couldn't control my BP and felt like I needed some midodrine for an extra boost and the nurses couldn't give me any advice and the next available appt was 3 weeks away. I wanted to start my midodrine so badly but I felt I needed expert doctor approval to do so. I ended up just being miserable from something that seemed so easy to correct. I'm an ER nurse and have had POTS over a year now and I'm starting to figure out what meds help and don't help. It's good to know there are some who are adjusting their meds based on their symptoms and I'm looking forward to finding a good doctor who can help me with this. Thanks to all for sharing! Brye