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THIS CAN'T BE TRUE


JLB
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It's 2 RNs talking about it, and they seem to know their stuff - it's from the poll/thread on benzos...

I have seen many people die of dysrhythmias. Dont know if they are POTS related or not. Thats one of my big concerns. I am going to request that my cardio specialist, when I go see her for the first time May 16, that she give me an event monitor to wear. Not a Holter monitor but an event monitor so I press a button when I feel a dysrhythmia and I call a number and transmit and they tell me right then if I need to go to the ER.

It is very plausable to assume that you can die if your heart goes wacko POTS related or not. Dont want to freak anyone out, sorry but its the truth.

My concern has always been, am I going to die, during an "attack". Not from a illogical Im panicing because of adrenalin stand point but from a logical nurses stand point. I always tell my patients to go to the er immediately if you have cardiac symptoms, time is muscle. And here I am having all the symptoms of a major MI and I know Im having dysrhythmias and Im not doing anything but knocking myself out with a valium and praying I wake up.

This Totally *****

Janine

Now I'm shaking everywhere. I've been getting worse for a long time now, and I use to be able to endure it with that notion, apparently untrue, that POTS/Dys - the h/b irregularities - don't kill you. They can, and she's seen people die of "dysrythmias" (what's that word mean, as opposed to "arrythmias"?)

God help me. There really isn't any hope. I can't get any help for my heart symptoms or anything else - except they give me Xanax and tell me since I don't have MSA or PAF that I'm just anxious, and those words from that poll thread will haunt me. Please, someone, help me feel better about this... Is it true? I vwery well can die suddenlt from this? What's the point of going on then?

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JLB please see my note under benzos. If you are not on a monitor how do you know what you had were PVC's? My arrythmias feel different and I assumed I was having pvc's, but it was actualy just short run's of svt. My pvc's, I didn't even really feel! So how did you know? morgan

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The things I feel were recorded on a heart monitor at the ER last July, three hours of PVCs, multiple PVCs, and arrythmias. Literally hundreds recorded. They've been documented before, as well, but the dx is always "anxiety" and I'm given Xanax and referred for counseling.

It's going to kill me, isn't it? It's been going on for too many years. My heart is probably in shreds by now. I just read a PDF I found on a search about SCD from MVP/irr h/b, and they said it's vastly underreported.

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JLB,

I am not a nurse or docotor - just a fellow patient, but I seem to be the only one online right now that can take a shot at calming your fears. I hope soon others with more knowledge than me will also encourge you.

First of all, though I value eveyone's input on this forum, I encourage you to be very careful not to let one or two comments define the truth for you. Everything I have read.... and I have read A LOT and am a person who loves to learn and become educated.... everything I have read has emphasized that POTS is not a deadly type of tachycardia.

Now, I just did some more reading for you about tachycardia and dysrythmia. Tachycardia is the heart beating faster than it needs, dysrythmia is beating slower than it needs. There are many many types of tachycardia. Some are very dangerous and many are not. Some need treatment, many do not. I think this is why all the literature I have read encourage patients to get checked out by a cardiologist, so that the dangerous can be ruled out.

I believe you have said that you have seen a cardio. I am sure he/she has ruled out the dangerous types, but if you are unsure, you should find a different cardio and have them do a full workup too.

When a disease or illness is dangerous or life-threatening, I can find it in the literature published by reputable medical sources. I have not seen anything like this about POTS. Now, hopefully, our two friends who shared the scary advice will come on soon and explain what they meant, so you can understand why they shared these things.

However, until then... your life is worth living. Every moment is precious. None of us knows when we will die or from what, but we must make the most of the time we are given. With that said, I encourage you to calm your fears by thinking about why God would have put you here on earth today and make the most of it... (and watch a few M*A*S*H episodes to get your mind of your fears :() I will not go into any religious talk here on the forum, but if you want to talk more about the meaning of life you are welcome to send me a personal message and I would be happy to tell you about mine.

Hang it there and I am sure we will get some anwers to your post as the day wears on.

~Roselover

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JLB : I think there are pros and cons to being online and having access to so much info that is out there.... Some info is great, some just alarming.....

I have learned not to take everything said about POTS or any other problem I have too seriously...the truth is that anyone could drop at any time from anything, and living life to the fullest without these fears is the best thing you can do for yourself....

Please do not think I am dismissing your concerns....I truly am not...

But years ago when I first had access to the Net and was reading all the horrific things about Lyme Disease I used to have a panic attack on a daily basis about never getting better... I stopped going online and reading about all the what if's and I got better or functional....

Now I only go to supportive sites such as this.

Take Care of youeself and please know you will be ok. :(

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JLB -- sorry you got so frightened by that post ... if I had read it I would have been terrified too. It's just the nature of the beast I am afraid.

Remember that long post on palpitations I posted a while ago. Go print it out, read it again and feel reassured ... THEN print out a copy for your doctor ... say to him/her, does this benign arythmia thing in this article apply to me? Is it true there is no way I am going to die from these in my particular case given all the medical facts you know about me?

Then if the doctor tells you again that it's true, that in your case it's nothing to worry about, that it doesn't matter how many years it's been like this (which you can take as a good sign) that no matter how many come in a row ... you are safe. You can take that as you get out of jail free card the next time you get youself worked up over what your body is doing.

OH! And then remind me again, because I always forget too.

Good thoughts,

EM

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Hi,

I don't know if this will make you feel any better but here goes. I have been dealing with pac, pvc's, a bout of psvt,tachycardia, few runs of pvc's and pacs. I have had echos, echo/stress test done. Get them every two years. Have worn an even monitor for over 1 year,,that's right one year and caught many things on them. I have always been told by my cardiologist, in the absence of any structrual abnormality, (not a little billowing of the valve as MVP which I have also) these pac, pvc's are benign. Most of the population have them, some daily and most are not aware of it. Our overly sensitive nervous systems make sure that we do though. I have been checked by other cardiologists and specialists and told the same.

When I was pregnant with my 3rd child 3 years ago, I was shoveling in the winter and all of a sudden I was getting pvc's and pac's, but they were coming and going every time I moved, and I mean every time I moved I had a regular beat, a pvc or pac then a regular beat and so on. I was wearing a monitor also. As frightening as it was and I was, I was told that it was harmless and would pass. It did. 3 years later I have had 2 subsequent echos and no changes have been found since the first one I had 13 years ago and every one since then.

I think you just have to remember that sure people may die of an arrythmia but what else was going on with them. Previous heart attack, stroke, heart disease, things that make your heart more suseptible to dangerous arrythmias. From what I was told ventricular tachycardias like ventricual fibrillation when they are sustained can be damaging, but this is not pvc's. And the above is not always the case, I know of someone who had two episodes of it and was told since their heart was structrual normal, she is fine.

If you check out www.medhelp.org and search on pvc or pac you will probably out of the hundreds of posts, find 98% of the answers by the cardiologists pretty much say these pvc and pacs are annoying but not life threatening. The other % and I am just guessing that there is a leftover % are probably replies to people that they can't say what is happening to them unless they get some testing.

Our anxiety every time we feel one can bring us right back to square one, I know it does for me. I have had these things since 1991, 14 years worth of this junk and lately I have had tachcyardia that gradually starts and stays high and lasts for about 1hr and gradually slows down. I have worn a monitor and caught this too and was told it is benign and don't worry. New echo and stress/echo shows nothing changed. Sure it worries me every time it happens, waiting for the next time,wondering what it is doing to my heart, but my dr. assures me and my hubby that my heart is strong and as long as it is not in constant, and he meant constantly a disturbing arrythmia, nothing would happen to my heart. Even people with a-fib can stay that way for years.

I know this is long winded, but I just wanted to tell you I know where you are coming from with these fears, I still have them, but I try to remember the reassurance I get from my dr. and try really hard to not let this control my life. You let this get the better of you, it wins...Hang in there it will pass!!!

*Just my opinion on it and what my dr's have personally told me.*

((hugs))

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I hope you have found some reassurance from others posts. POTS is a scarey illness and it often feels like we are dying. Many of us have had anxiety over whether we were dying of something. See another cardiologist! You need another opinion and if everything checks out OK you will have some peace of mind. I hope you find soem answers too. I did not read the post you read and now I am planning not too. I don't want anymore scares. Never be satisfied withone Drs opinion. They are human. Take care of yourself. DawnA

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JBL,

Please read the post Earthmother referred to up above. It was a wonderful, reassuring piece. No one should dismiss heartbeat irregularities, but once a thorough cardiac workup has been completed (including EKGs, echo, and maybe a stress test. depending on your age and other health status), any good cardiologist will tell you that the VAST MAJORITY OF HEART RHYTHM DISTURBANCES ARE BENIGN - ESPECIALLY in the context of a structually normal heart. If you have had an echo done, your doctor would be able to determine that your heart is structurally normal. That is not to say that what you feel isn't extremely anxiety-provoking! It IS! But just because it feels scary doesn't mean it's dangerous.

I have great empathy for you, as I was once where you were - fearing every flip and flop of my heart meant certain death. But, after going to the ER numerous times over the last few years, I FINALLY decided to BELIEVE what each and every doctor - including my own cardiologist - told me: these things can feel awful, but they are harmless. The havoc they wreak is in our minds. **** it, I was giving this thing WAY TOO MUCH CONTROL over my life. I decided to let go of the fear. Oh, sure, I still get a little anxious when my heart starts doing crazy things - but I just go about my business and it eventually subsides.

Virtually EVERYONE gets ectopic beats - only some of us are 'lucky' enough to feel them. Assuming you've had the workup described above, please, PLEASE try to let go of your fears. Get mad instead - and reclaim your life from these nuisances!

I've posted this before, but I also wanted to add that I ran two full marathons (26.2 miles) last year. At the start line of one of them, I was throwing off ectopic beats every other second! I was so anxious and keyed up about the race! But once I started running, I hardly noticed them and they eventually subsided. The point of this is not to brag about my athletic pursuits - :-) But rather to assure you that just because a heart skips beats doesn't mean it's unhealthy!

I hope some of what I've said has helped you. My heart really goes out to you (no pun intended!) - since I truly know what you're going through. But you need to decide that you are not going to let these things rule your life. Easier said than done, I know. But keep at it!

Best wishes,

RunnerGirl

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Guest Mary from OH

JLB-

Have you had an ECHO to see how your heart is structurally? I know you are followed by a cardio. Usually, the types of "deaths" that these people are talking about have NOTHING to do with OUR types of arrhythmias. It's people who have undiagnosed heart disease, etc. compounded by an arrhythmia.

Sometimes. Too much info is a bad thing. Talk to your dr. who knows YOUR situaition. Just put a call into the RN. I'm sure they will put your mind to rest. I wish that people would not make "blanket statements". It can be very alarming to people.

Hugs and Prayers!!

Take care! :(

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I'm confused. I don't mean to come across as ignorant about POTS, but I thought that irregular heartbeat was one of the common symptoms of POTS. Doesn't everyone experience off heart rhythms who has POTS? Mine goes flippy all the time. I used to worry, but then I read that irregular heartbeat was one of the common symptoms that every POTS patient seemed to suffer with, so I quit worrying. I even read that a lot of POTS patients throw PVC's that are harmless, so I quit worrying. Should I think about it more now? Should I worry a bit when my heart goes a little wacky? Does every POTS patient have this symptom? Dysrhythmia is a slow heart beat. How slow is considered slow or abnormal? Mine has been in the 50's a great deal since I started the Florinef. Is this something I should be concerned about?

Linda

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Linda,

Maybe I can help clear up some of your confusion. First, I think we have to define what we mean by 'irregular heartbeats" - as we're all using that term here in a very broad sense.

1. Yes, one of POTS hallmark symptoms is tachycardia (hence the "T" in POTS) - which is a form of an arrhythmia technically defined as a HR in excess of 100 bpm. Most POTS patients when speaking of tachycardia are referring to SINUS tachycardia. In other words, the heart's rhythm is being generated via the normal electrical pathway (ie, the sinus node.) It's just that the heart RATE is inappropriately high for the given activity (ie, standing). So, technically speaking, sinus tachycardia is not an abnormal heart rhythm per se. Sinus tach is quite NORMAL when one exercises, for example.

2. Yes, many POTS patients ALSO complain of other "heartbeat irregularities" - mostly atrial and ventricular ectopic beats (PACs and PVCs). But, as has been pointed out here already, many, MANY non-POTS people experience PACs and PVCs. It might be that POTS-ies tend to have a higher incidence of ectopic beats than the general population. OR it might be that we have a hightened awareness of heartbeat irregularities, undergo more testing that reveal this, etc. But the point is that both POTS and non-POTS patients have a very high incident of benign arrhythmias. Some people feel them - some don't.

3. POTS and non-POTS patients also report other arrhythmias - SVTs, afib, v-tach, etc. - but I am not aware of anything indicating that POTS people are more or less likely to experience these types of heart rate disturbances. Again, not to beat a dead horse, but arrhythmias occur throughout the population - the more dangerous ones (v-tach) happily tend to be the rarest.

4. I think 'dysrhythmia' is actually just a synonym for 'arrhythmia'. The term used to describe a HR below 60 bmp is 'bradycardia." And, again, this usually refers to a heart that is otherwise in normal sinus rhythm, but has a slower normal resting rate. Bradycardia is a common finding in endurance athletes (my HR often drops to the 40s at night, and Lance Armstrong's has been reported as low as 32!) Obviously, bradycardia can also be present in people taking medications like beta blockers. Unless you experience symptoms with your bradycardia, you probably have no need to be concerned about a rate of 50 at rest.

Hope this helps!

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I just don't know what to say to all of you. It's so hard to accept how much you all care - I'll be reading this and rereading it, and I can't express my gratitude.

I'm going to see another cardiologist, have all this done. Most of it I already did through the years, but it's been a while and I could use the answers.

I'm sorry for the hysteria. this is just the longest crash I've had with no improvement, and I got rattled... Thank you all again - I'll be keeping you updated.

What a group here. I'll go read that thread now.

Hugs to you all.

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JLB, I'm glad you asked the question because I learned a lot from this, too!

Runnergirl, thank you for the clarification. It's hard, while in the midst of heart irregularities, to not worry about them, but while my heart is calm, I don't want to worry about the "what if's." Thank you for taking the time to calm my nerves!

I agree with JLB: this forum has been the best thing to come into my life in a very long time!

LindaJoy

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JLB,

I am the one that started the poll on benzos to try and find out what would be best to help my son in his treatment. I too got terrified when I read the responses and I am a RN myself. (I think I have responded to your other posts). Just to let you know, I have worked in many areas of the hospital but never the ER. But also to let you know that I have been having tachycardia, any arrythmias and dysrhythmias for the past 19 yrs. I am still here but I also get beyond panicy when that happens, especially if they persist-like they are today. :blink: I have seen MANY doctors and each tell me that I will not die from the arrythmias(by the way-runnergirl was right-bradycardia is the correct term for slow HR-which many people who are in shape, are on beta blockers, are young and healthyhave).

Even being a nurse, I can't get over my overwhelming sense of panick when they decide to show up. I am on a beta blocker which helps SOME with the very fast rates but doesn't help with the irregular beats that scare the #&*% out of me. I am not sure why I feel I am going to die each time they happen. Sometimes I do better than others, but when they are bad, I totally freak out-even with my clonazepam.

I say these things because I want you to know that you aren't alone with your overwhelming fear. (as you can tell by all the posts). I also wanted to apologize to everyone for getting this whole post started. I was just trying to find a way to hlep my son. Instead, I have managed to totally freak everyone out, including myself :lol: , and that is the LAST thing I wanted. I just was asking for advice.

I am sure that Janine was just trying to be helpful and informative as well. I don't know her personally-in fact that is the first time we have even posted to each other. But I can tell her intention was to inform people about what she has seen, trying maybe to protect them from the serious irregular and fast beats-which we have all learned that they are not dangerous to POTS pts unless something else is going on-like heart damage, etc. It is such a touchy subject. ANd I know she meant only to be a help instead of a concern.

I am not even sure if I am making any sense myself now because I am still in my fog, AND having MANY irregular beats and tachy today BUT just think, I am still here. Even after the 19 yrs. I guess there is something to be said for that too. I just can't get it through my thick head.

I sure hope I wrote this in the context that I meant-basically if you have been checked out, had tests, monitors, ekgs, holters, etc and the dr has assured you that you will be ok, you probably will. (Listen to me-I am the POT calling the kettle black :):( ) If your very concerned get that second or third opinion. Get some counseling(which I desperately need but can't afford right now)- it can help with the anxiety related to a chronic illness and they can teach you biofeedback(it just helps you breath, etc and learn how to deal with these panic attacks that WE have). It is normal to fell scared when your heart goes whacko-I think someone would be whacko if it didn't bother them. And I truly believe Janine was just trying to help.

Janine, if you are reading, would you please respond? I would love to know if I am saying the right things, I would hate to be putting words into ANYONE"S mouth. I can't even put them in my own most of the time :o

I would like some feedback, everyone tell me what you think. Once again, I am sorry to have started total panick on such a wonderful, supportive site. (I am just as panicked as the next)

Love and hugs and NO arrythmias to everyone,

Danelle

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Danelle, you don't have anything to apologize for. It just seemed to get off track somehow, like these posts seem to sometimes. Back to the original subject.

I don't think any of us like the stigmas and possibility of addiction. Not everyone has an addictive personality. I have been on my meds since 1997 and the dose has pretty much stayed the same, unless I am having a very acute attack of meneires, then I just hurl it back up anyway. I'm sure there is a dependency involved after this long, but the benefits of this drug far out weigh the negative aspects. I just had an appt with my ear nose and throat doc today and we discussed the fact that I will be on this drug (valium) the rest of my life, because meneires just doesn't go away. And I can't do the diuretics. I dare anyone on this site to try diurtics! ;):rolleyes: The fact that it seems to help a little with my OI is just an added bonus. So I guess you need to decide what's in the best interest of your son. The pros and cons of taking or not taking a benzo. This is a fairly black and white issue with people. They help them and they like them, or they refuse to use them and can't say enough bad about them. Kinda like being far right or far left. No middle ground. I have come to terms with my use of them and I won't apologize for it. I have on rare occasions given a benzo to my son for his severe anxiety. However, it is pretty well contolled on celexa, so it hasn't really been an issue.

If my son were still as crippled by anxiety as he was in the past, and trust me, he was, then i would use whatever it took for him to feel better. I would just monitor it very carefully. And see how much he needed, how often and if he showed signs of developing a tolerance to it. I have never done that (developed a tolerance) and he does not have any type of addictive behavior and has never had to raise his antidepressant dose.

So, that's my humble opinion. As the mom of a pretty ill kid, I feel your pain, and the agonizing you must do over these type of decisions. good luck and hang in there. Again, there is absolutely nothing for you to apologize for. morgan

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Morgan,

Thank you for your kind words. :rolleyes: I agree with you about the benzos. I have to admit I was a little reluctant at first. But then I sat back and looked at the whole picture. First of all, I take klonopin and it helps me more than I can say. As a matter of fact, if I didn't have it tonight I would have already called 911 due to some pretty bad arrythmias. Secondly, thinking that it was ok for me because it helped and not for him was hypocritical. I just worry about his age-but not anymore. Then I thought, look what this child is going through. If this can help him and take away alot of the symptoms, then by all means, let's go for it. He did try ativan for about a week and a half-it worked some but never really took the anxiety away. He was having a bad POTS spell one day and I tried some klonopin-within 30 minutes he was like a new person. Not groggy just "normal" It was amazing. I called the dr and told him. He said for now, do what I need to. We have an appt on Friday. I think he will probably end up putting him on it afterall. I will encourage him to anyway, just becasue I see what a difference it makes.

So tired but just wanted to say thanks so much for being so kind to me, I needed to hear something good tonight. You actually made me smile :P;)

Many hugs to you,

danelle

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OK folks. Dysrhythmia and arhythmia are the same, irregular heart beats, there are many. Bradycardia is a heart rate lower than 60, tachycardia is a heart rate over 100.

Yes, as an ER nurse I have seen people die from irregular heart beats, the patients either came in to the ER way too late for us to do anything or the person had underlying cardiac disease.

It is normal for people to experience PVC's. Preventricular contractions. It becomes a dysrhythmia when you have a whole lot in a row. It can become Ventricular tachycardia and it can kill you.

Now, dont panic but. If you or anyone you know regardless of health status, have chest pain, shortness of breath, left arm pain, (see AHA web site for other warnings of cardiac emergencies). Go to the ER. 99% of the time you will be there for hours and be sent home with nothing wrong, and theyll tell you its stress or chest wall pain or whatever. But that 1% of the time, if you dont go, you can die. Dont risk it. Chest Pain that doesnt go away= ER visit. Call your doc he/she will tell you the same.

Calm Down All

Janine

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It becomes a dysrhythmia when you have a whole lot in a row. It can become Ventricular tachycardia and it can kill you.

That's what I have.

I'm sorry if my fear offended you, janineerrn. I think, though, that if you're going to post things like the stuff that got me going, you may want to include more info up front - I know in my case, I'm usually up until 2-3 AM with PVCs and flutters and chest pain, until exhaustion lets me sleep. Please understand that many factors enter into the panic I felt, and while your information is accurate I'm sure, it can really cause fear.

I guess (I hope) I'll calm down after I see another cardio.

Take care -

JB

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I dont mean to make you afraid. I stuggle with the same thing. pace back and forth deciding if Im going to the ER 5 or 6 times a week. Lots of people walk around with pvc's without any problems. No one can say when it becomes an emergency. A typical ER course of treatment would be monitoring and admission if you have frequent PVC's and then a cardio work up.

The whole point I was trying to make was dont mess around, go to the ER. I dont know if the people I have seen die from dysrhythmias had POTS. I just ran my butt off doing everything I could to keep them alive, no time to read charts.

Im scared too. It just hits me, bam. Then I pace around trying to decide if I should go to the ER or not.

Some of you on here describe symptoms that are considered emergencies and would get you seen at the ER pretty quickly.

And the explaining I did on my other post was just correcting some info that someone else wrote

]Sorryy to upset you

Janine

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What I find most helpful is when people share their opinions in terms of what they might do themselves given XYZ.

Janine your personal stories of what you go through yourself with arythmia and the difficult choices you make each week are really helpful. To know how helpless you felt as an ER nurse unable to save some of the people who died of heartattacks is also very heartfelt (no pun intended).

But we really should be careful when any of us make assertions about what is best for everyone on the boards.

I know many people who have arythmias with chest pain and shortness of breath and who have been told by their specialist that in their case it is nothing to worry about. Ofcourse there are also studies that suggest for women, our early warning signs are most often not chest pain and radiating arm pain but rather fatigue and insomnia that precedes a heart episode. (I sincerely apologize to anyone like myself with CFS who may become overly concerned -- remember we all see doctors all the time.)

Indeed my own cardiologist has assured me that in my case it does not matter how many times my heart skips in a row ... it doesn't mean I need to do anything. But this is me, it's my case. It's my doctor who knows me, who has done all the tests he feels he needs to do to be 99.95% sure he knows what I need to do.

With deep respect for everyone's deep feelings.

EM

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First I would like to say the the excepts taken from my posts were just that, excepts. Read the whole post.

Second It is my understanding form JBLs iinfo that he needs to go for a cardiology work up, what he is having may not be POTS related, we have no reason to assume this until the cardiology work up is done to rule out anything else. We have POTS for years, and POTS symptoms are so varied that we could easily miss a sign of something else being so conditioned to our POTS symptoms.

Third and Last (this is my last post on this topic) Anyone with chest pain should go to the ER. Read the AHA website, simple, basic.

With The Deepest Concern For Everyones LIFE

Janine

and Im sorry if I offended anyone

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I guess what's so distressing is the number of times I've been to doctors and ERs, and that I never got any help. I stopped going several months ago, when the "top" neuro around here said I don't have Dys or Pots because I'm able to walk and I don't faint every time I stand up. Just before that was the "doctor" at the ER who watched my BP go down to 50/30 as he tilted the table back, recorded several hundred arrythmias and multiple PVCs, then sent me home and told me he "doesn't believe in treating PVCs." (As condescendingly as possible, BTW.)

IOW, I know I need help - I know I could be heading into a disaster - but the help isn't there. Not for all these years (24 of 'em now), anyway, and it's scary to be so sick, and know no one will help.

I'm going to give it another try, though. I'm sending my records to a new MD, and going to see a new cardiologist ASAP.

You don't need to be sorry, janineerrn. I'm the one who lost it. Like I said, it's just been such a LONG crash this time, and it feels so much worse than before. I think I just got worn down.

Janine your personal stories of what you go through yourself with arythmia and the difficult choices you make each week are really helpful. To know how helpless you felt as an ER nurse unable to save some of the people who died of heartattacks is also very heartfelt (no pun intended).

That must have been awful. I don't think I could ever be a nurse - I don't have the guts.

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