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Hi. I'm so glad I found this site. I need some answers and hope that I will be able to find some.

I'm 31 years old, married with 2 children, ages 3 and 1. I've always had palpitations that earlier this year was diagnosed as PACs, PVCs, and SVTs. I had a 24 hour holter test in March that showed my average heart rate to be 91 with several hours over 100 bpm, and an hour where I was over 120 bpm.

My cardiologist was not worried and so, in I go for a diagnostic laparoscopy for endometriosis. Several hours after the procedure it happened. I got up and felt this warm wave rush from my belly to my chest (thank goodness I was already in the ER for a catheter because I was unable to void). My heart rate was around 130 lying down. I kept feeling the rushes of heat and then my heart rate would increase dramatically. I was admitted to the hospital where I was monitored for 2 days. Eventually, my heart rate was pretty normal when lying or sitting, but would dramatically increase whenever I got up. My cardiologist discharged me with the diagnosis of inappropriate sinus tachycardia.

Well, after coming home and researching on the net, I knew that I did not have IST - I had POTS. I just got back from seeing Dr. Fouad at the Cleveland Clinic who comfirmed that is what it is. She took wonderful notes and history from me, the testing was wonderful. They told me I had POTS and basically wanted me to leave?!?! I started crying. I want someone to help me with this and they seemed uninterested.

I'm hoping maybe someone could answer the questions that they "didn't have time" to answer...

1. What is the long-term effect on my heart? Isn't it bad that my heart has been racing like this for who knows how long? Is my heart damaged? If it's not damaged yet, will it become damaged?

2. At what point do I need to stop what I'm doing? My resting heart rate (with beta blocker nadolol) is around 65-75. The nurse at Cleveland Clinic told me to rest at 90. If I rest at 90, I'd be sitting around all day long. For example, if I'm cleaning at 110, should I stop even though I feel okay?

3. What is florineff (sp)? Any bad/good results from this drug?

4. Right now, all I have is the increased heart rate (weird feelings in my chest when this happens). Will I get more symptoms?

Thank you so much for reading. I know it is so long. Thank you for your patience.

Scared and lonely,

Jennifer

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Hi Jennifer,

Another Ohio girl!! Welcome to the site! We live east of Cleveland, so we will probably know alot of the same Dr.'s.

My daughter is 19 and has POTS. I don't know if you've read past posts or not, but recently there was a discussion about Dr. Foaud--unfortunately everyone's had about the same experience with her, you're not alone. She great at dx, but forget any type of follow-up. My daughter was placed on a beta-blocker by Dr. Chelimsky at University Hospitals when she was first dx'd. We saw Dr. Grubb in Toledo a few months later, he took her off the beta blocker and put her on florinef and there was almost an immediate difference. Dr. Grubb has now started her on promaitine along with the florinef, although it doesn't seem to be working yet, I'm hoping once the dosage is tweaked a little that she'll be feeling better.

As far as your heart rate goes I'm not sure. My daughter's is always very low, but she also gets weird feelings in her chest alot. ALL the Dr.'s, especially Dr. Grubb would always say "POTS is a very annoying condition, but it is not life threatening", which is reassuring.

Take care,

Patti

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Hi Jennifer

I'm trying to figure all this out myself. I don't have many answers for you but would like to welcome you to the group. I am 28 mother of 3 (6,3&1) and I know how hard it is to not over do it.

My symptoms are horrible nausea, migraines, brain fog and easily fatigued and becasue of this illness depression. I don't have all the tachy symptoms so I can't relate. My doctor says my hr/br is on a rollercoaster - up and down. I'm probally just so nauseated I can't feel anything else. I've been sick for 1 yr. I don't know the cause

I hope you find the answers you are looking for. As long as your a member of this group you don't have to feel lonely anymore. The support these people give is wonderful.

Dayna

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Hi,

Welcome to our forum.

You will find many friends here.

The only question I can answer is about Florinef. It is a medication to increase your blood pressure/blood volume. It works on some people but I did not have success with it. The only way to know if it will work for you is to try it.

Ernie

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:D Hi Jennifer and welcome to the land of us POTSY people! So sorry that we have to meet this way but now that you have recieved diagnosis I hope that you will find this forum to be both a support and informative as it has been for me. B)

I'm Zoe, 26 yrs old diagnosed with POTS / NCS / CFS and Seizures back in 2001. I have had the condition for four years now and although still experience major ups and downs, both physically and emotionally, I have now got to a stage where I am able to maintain my independence and continue my work as a midwife.

Potsplace.com is very useful in providing answers to a lot of the questions that first arise so I suggest this is definately worth an in-depth read for starters.

Florinef is corticosteroid which has a high mineralocorticoid activity and basically results in fluid retention...hence the reason the majority of us take it in order to try and prevent effects of vasodilation and encourage maintenance of blood pressure. Without this I tend to drop my BP a lot more often due to vasodilation. Please shout if none of this makes sense...I'm in the middle of a night shift at ten to four in the morning and I've got my medical head on so please forgive me if using medical jargon. :blink:

I know you probably feel anything but, however I am glad that at present you are only experiencing the tachycardia side...although I know how scary and disabling this in itself can be. You may find that as you find out more about the condition that there are indeed other symptoms that you have but may never have associated with POTS as our symptoms are so varied and diverse.

I do hope some of this makes sense as I feel I'm at that time of night where I'm just rambling now. I do understand how difficult it can be, especially at the beginning when you have so many questions and a lack of support from your doctors. B) Trust me there are lots of people here who wil welcome you and support you so please do not feel alone.

Take care and hope to speak again soon. ;)

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Welcome Jennifer!

I'm so happy that you were able to find us!

Before I was diagnosed with POTS at UPenn, I was seeing a cardiologist about the racing heart, too, although it sounds like yours were more prolonged and frequent than mine. I don't have anything sound to add in regard to your questions about possible heart damage (I didn't have any) or the HR issue, except that I would try to maintain as best quality of life as possible. I don't see a problem with HR 110 dusting if you feel fine; my line is usually "listen to your body" -- in general, if you feel odd, resolve the problem, but if not, continue on your merry way! I'm not a physician, though, and have never had to worry about high heart rate, so better to talk it out with people who are better informed. In the early POTS stages my resting HR was 37 (shocked the Tilt Table Test technicians! ;) ); even in testing at Mayo it didn't get astoundingly high, but was elevated significantly enough to merit the POTS diagnosis.

Ernie gave a good general description of Florinef, but if you're interested in more minute detail, you could always search it on the web.

As for symptoms, everyone is different. I'm happy all you've been having trouble with is the increased HR -- I sincerely hope that will last! For most of us on the forum, a plethora of symptoms accompanies POTS/dysautonomia variants-- we're able to boast a very wacky collection! :blink:B)B):D If you're interested in knowing some of the more common ones, POTS Place has a good list.

Welcome again! I'm glad you've been able to find a diagnosis and hope that you'll be able to get into an effective treatment regimen soon! Ask all the questions you want!

Angela

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Welcome Jennifer.

As far as what Dr. Grubb described to me, no, the heart is fine, just pumping fast. You asked in another post about what meds...we're all on different things, combinations of things you'll read on the main DINET site, and some folks on no meds at all. Please take some time to read through the articles in the help yourself section.

http://dinet.ipbhost.com/index.php?showtopic=1954

Also, within that topic, you'll see all the link to DINET's info on medications listed under "what helps".

nina

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Hi Jennifer!

I'm so glad you found this site. I am from Cleveland, OH and was just recently diagnosed with POTS by Dr. Fouad in May of this year. This forum is a great place to get all your questions answered and to feel like you're not alone in dealing with these nutty symptoms (and emotions!).

As far as your heart function goes, it's probably fine. But if you are very worried about it, you can always ask your primary care doctor. I had the same concern about my own heart and was reassured by a simple echo test which revealed normal heart function. It sounds like your resting heart rate is perfectly normal on the beta blocker.

In terms of activity, i share your frustration about heart rate. Mine is in the 80's just sitting up doing nothing. I usually limit my activity based on my other symptoms (dizziness, fatigue, brain fog, nausea, fainting) rather than heart rate. I think it's more about your own comfort level than numbers.

Sorry you have been given a new diagnosis with little medical help, but glad you found this place...these wonderful people have made a huge difference in my life already!

Kristen

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Hi Jennifer,

Have you had an ECG and stress test to confirm that the structure of your heart is OK? Based upon these tests, my docs have told me that my heart is normal and POTS won't do anything to damage it. I think this is the case for most of us on this board.

And, since my heart is normal, my docs told me that I should go on with my routine life as much as possible, and not to worry too much about the number of my heart rate too, unless it is really high (like 150--this number is different for everyone). In my case there are a lot of other symptoms, like dizziness, nausea, and headaches which have kept me from being active. And also I get tired pretty easily, so I know I have to rest a lot. If you are not getting these symptoms, then you're really lucky! :)

Florinef is a steriod which increases blood pressure and blood volume. I took it for almost a year. It did help me initially, but now I don't need it anymore. It can have some crazy side effects, so I would recommend trying lots of salt and compression hose before going on florinef. I see that you are already taking a beta blocker. That's what has helped me the most!

Anyway, just wanted to say welcome.

-Rita

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Hi Jennifer,

Well I'm also from Ohio, alittle outside of Youngstown. I also was just up at the Cleveland Clinic and saw Dr. Fouad. As for the testing, it was great, and she listened well too, but as for after her telling me it was pots, she did put me on Lapressor and Levsin, but that is all. I have left a few messages to ask a couple of questions about my B/P. They didn't return my calls for days. I was upset.

My heart at rest is around 90, up moving around it ranges from 130 to 180. For me, I listen more to my body about how I feel, then my heart rate. With having three children, (6,5 and 2) I am usally always running around.

As for systoms for me, I get out of breath really easy, and the heat really makes me tired, and I get very hot to the point I almost pass out. I don't have alot of the systoms that others talk about, but I was just diagnosied in July.

I hope things get better for you.

Tracy

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hi jennifer -

welcome! i'm sorry you have a reason to be here but am glad you found the site. while, as you're already learning, there are lots of questions without answers as of yet with dysautonomias, there is a lot of great info on the site & some pretty neat people too.

as of two weeks ago today, i'm also an ohioan:-) actually, i was born & raised in ohio but lived in maryland for 8 years and have just returned. i actually live less than 5 miles from the Cleveland Clinic now and was just there last week for an appointment as i'm trying to switch all my docs from baltimore to cleveland.

i'm 25 & have Autonomic Neuropathy, OI/POTS, NCS, & other things that may or may not be related.

unfortunately - as you've found - even if/when one gets an accurate diagnosis, which can be plenty tough enough in and of itself, follow-up with docs can be even tougher. it doesn't fix the situation, but know that you're not alone in this frustration.

regarding your questions, the link nina/mightymouse gave you had LOTS of good info, as have others' responses, but i'll give my 2 cents as well.

in terms of your heart, most folks with dysautonomia have totally healthy hearts. i agree with you that logically it would seem that all that extra beating & high speed work could do damage, but most of the time - thank goodness - that is not the case. largely autonomic issues tend to be functional...that is the organ/part of the body is in and of itself just fine, it just doesn't communicate right with other things going on in the body. so...like others have mentioned, oftentimes tests are done to be certain, esp b/c some symptoms can overlap, but generally speaking the heart muscle itself is okay & will continue to be.

in terms of the question of "when to stop" it varies for everyone. i don't want to question what a professional told you but am i'm a bit surprised that a nurse told you to rest at 90. perhaps by rest she means no running a marathon? who knows. like you mentioned, many of us wouldn't be able to push on with anything if we rested at a certain number, although that varies from person to person. i know for me there is a point where i must sit or lay down or i will black out, but in general it's more important how i'm feeling. so, while the doc's input is important, if you're feeling okay cleaning at 110, i can't see how there would be any harm in that, especially as you would still be in a situation where you could stop when necessary.

others have given you the general florinef info. fyi, as a corticosteroid it does not have many of the "standard" side effects that people tend to associate with steroids. that doesn't mean it doesn't carry it's own issues. personally it has done be good in the past but i am no longer on it, partially b/c we weren't certain that it was helping any longer & partially - probably more so - b/c it was causing me problems with low potassium & my GI tract couldn't handle the potassium supplements. florinef can deplete potassium & not all docs follow-up on this so while it's not a problem for all, it doesn't hurt to ask about this as it can be checked with a simple blood test.

regarding where things will go for you with symptoms and the like, the course of dysautonomia is SO incredibly varied that it's really hard for anyone to predict. so....while i know the HR issues are no fun in and of themselves, there's no way of knowing whether you'll develop other issues down the line or whether your symptoms may even disappear altogether. the only guarantee is that there is no guarantee:-) and yet you will find that most of us have lots of ups & downs (pun not intended but there none the less) but that can mean different things to different people. some have periods of few to no symptoms, for others "good" means being able to get out of bed and walk around a bit. there is A LOT of variation from person to person &, even for the same person, from day to day. so...bottom line is, as hard as it is, do the best with dealing with what you're dealing with in the here & now b/c one could drive him/herself crazy trying to figure out the what's going to happen tomorrow scenario.

okay...enough ramblings from me.

most importantly, welcome!

:-)melissa

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Jennifer I am sorry to hear that you are having so many problems ,but I would like to welcome you to this forum. I have trouble with my heart rate change and going to high upon standing, although when I am lying down I am the oppisite my heart rate goes really low ( in the 40's ). When my heart rythm goes to high I will most of the time pass out. I am not sure of how to fix this. I do take florinef but would like to warn you , watch your blood pressure very close and watch for to much weight gain.

Welcome,

Rita s

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If I had to rest when my heart rate hit 90, I'd be pretty well rested! I tend to have a heart rate of 100-120 while walking around the house and cleaning and gardening. I generally ignore it. I do feel shorter of breath, but I believe that the less you do, the faster your heart rate will get. Activity generally can reduce heart rate over time, although I don't think it works as well in POTS patients as it does in those without POTS. But exercise is beneficial for everyone, even people who've had heart attacks and are in congestive heart failure. It strengthens the heart muscle.

Glad to hear your beta blocker is at least helping a bit.

Tracy, where do you live? I am from Canfield originally.

Amy

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Amy

Well I'm from Ellsworth, lived here my whole life. Went to Western Reserve.

Where in Canfield, and did you go to Canfield school? I also went the the Voc.

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