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rubywitch67
@rubywitch67

Posts: 7
Joined: Sep 10, 2018

New and totally lost

Posted by @rubywitch67, Wed, Sep 12 3:42pm

I've just been diagnosed with AFIB and I'm terrified. I joined the Connect group but when I finally find my way to the AFIB discussion group, there doesn't seem to be a place for me to post. I REALLY NEED SOME SUPPORT. Thank you

REPLY

Hello @rubywitch67 and welcome to Mayo Clinic Connect,

We are happy to have you posting. Afib can be a very intimidating disorder. We currently have an Afib discussions group, just click on this link and you can see other posts regarding Afib, https://connect.mayoclinic.org/discussion/a-fib/

As you read the posts of others, feel free to click on the "Reply" button and ask questions or comment on what others have posted. This is a very supportive community and I'm sure that you will find the support you need.

You said that you were just diagnosed. Have you been prescribed meds at this point? If so, how are they working for you?

hopeful…..thank you SO much for emailing me. I am not the brightest crayon in the technology box and I fear I get myself lost quite often! Long story short, 8 years ago I had 2 heart stents placed as I have CAD they say was caused by having hypocholesteremia. After the stents, I developed PVC's and have spent these past 8 years learning to live with those and not be terrified. A couple weeks ago, I had 3 episodes of what I believed were PVC's that oddly began each night around 8-9 pm after I had eaten. They lasted about 3 hours and seemed to be one continues PVC! I also have panic disorder, so you can imagine the mess I got myself into! I called my cardiologist and he put me on a 72 hour event monitor. I felt like it was Murphy's Law, because during that 72 hours, I hardly pushed the button at all. For those 3 days I had less PVC's than normal. But this past Monday (the 10th) he called and told me I had AFIB!!!! He said he called in a prescription for Zerelto (sp) to my insurance company (I'm 67 and on Medicare and a supplemental plan) I am waiting for the meds to arrive, but have done some reading about these types of medications and now I'm scared to death to take them! I'm also sitting here waiting to drop dead from a stroke! I'm a mess. I will be going in for an echocardiogram in 2 weeks and seeing my cardio the next week. Can I assume that if he thought I was in imminent danger, he'd have me come in immediately? I live with my husband of 40 years and love him dearly, but he is not the most supportive person. I am so scared and feel so very alone. I had another episode last night. This one didn't start until around 11:30 pm while I was lying in bed reading and went on until almost 3 am. This one had a bit more of an "ebb and flow" feeling to it, but I had another major panic attack which I know just makes everything 10X worse. I'm sorry for rambling. Guess it's obvious I need someone to help me. Thank you, again. RubyWitch

@rubywitch67

hopeful…..thank you SO much for emailing me. I am not the brightest crayon in the technology box and I fear I get myself lost quite often! Long story short, 8 years ago I had 2 heart stents placed as I have CAD they say was caused by having hypocholesteremia. After the stents, I developed PVC's and have spent these past 8 years learning to live with those and not be terrified. A couple weeks ago, I had 3 episodes of what I believed were PVC's that oddly began each night around 8-9 pm after I had eaten. They lasted about 3 hours and seemed to be one continues PVC! I also have panic disorder, so you can imagine the mess I got myself into! I called my cardiologist and he put me on a 72 hour event monitor. I felt like it was Murphy's Law, because during that 72 hours, I hardly pushed the button at all. For those 3 days I had less PVC's than normal. But this past Monday (the 10th) he called and told me I had AFIB!!!! He said he called in a prescription for Zerelto (sp) to my insurance company (I'm 67 and on Medicare and a supplemental plan) I am waiting for the meds to arrive, but have done some reading about these types of medications and now I'm scared to death to take them! I'm also sitting here waiting to drop dead from a stroke! I'm a mess. I will be going in for an echocardiogram in 2 weeks and seeing my cardio the next week. Can I assume that if he thought I was in imminent danger, he'd have me come in immediately? I live with my husband of 40 years and love him dearly, but he is not the most supportive person. I am so scared and feel so very alone. I had another episode last night. This one didn't start until around 11:30 pm while I was lying in bed reading and went on until almost 3 am. This one had a bit more of an "ebb and flow" feeling to it, but I had another major panic attack which I know just makes everything 10X worse. I'm sorry for rambling. Guess it's obvious I need someone to help me. Thank you, again. RubyWitch

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Oh, @rubywitch67, I can understand your anxiety. Rapid heartbeats of any type or description are very intimidating and scary. If you are prone to anxiety and panic, it makes it that much worse.

My mother, age 92, has been taking Xarelto, for several years now with no ill effects. It has prevented strokes and that is the goal of that med.

You said your last episode started at 11:30 and lasted until 3 a.m. does sound quite long, however, while I have heart rate problems, Afib is not one that has been diagnosed. Even though your appointment for the cardiogram isn't until next week, you might consider calling your doctor and letting him know about the length of the episode. Perhaps he will see you sooner. I am going to tag another Member of Connect, Martin, @predictable. He has had many different heart problems and he will be glad to support you as well.

Hi hopeful, thank you for replying so quickly. Rapid heartbeats are fine if you're playing a rousing game of tennis, but when they come out of nowhere while you're laying in bed doing nothing does make them VERY intimidating! That your mother, who is 92, bless her heart, has been on Xarelto for 2 YEARS (I had no idea it had been out that long) and has done just fine on it, has given me a slight nudge toward calming down. Thank you for that. However, I had no idea that 3 hours was considered somewhat freaky for an episode of AFIB and now I'm really scared again. I wonder if my panic and all that adrenaline being dumped into my system is not prolonging them? When I had those 3 episodes before calling my cardio, I DID tell his triage nurse how long they lasted. Perhaps that's why he ordered a 72 hour event monitor? He told me on the phone the monitor had picked up a 6 hour episode! What's scary is that I didn't think I was having very many PVC's while wearing it…..maybe 10-20 all day! How could I have not felt 6 HOURS worth? If I can't tell if I'm in AFIB, how do I know to go to the ER? Oh dear……..I'm REALLY scaring myself now. I would truly appreciate you talking to Martin. I will gladly take all the support and advice I can get! I can't thank you enough for reaching out to me. I'm still very, very scared but at least I don't feel so alone anymore. Linda

@rubywitch67

hopeful…..thank you SO much for emailing me. I am not the brightest crayon in the technology box and I fear I get myself lost quite often! Long story short, 8 years ago I had 2 heart stents placed as I have CAD they say was caused by having hypocholesteremia. After the stents, I developed PVC's and have spent these past 8 years learning to live with those and not be terrified. A couple weeks ago, I had 3 episodes of what I believed were PVC's that oddly began each night around 8-9 pm after I had eaten. They lasted about 3 hours and seemed to be one continues PVC! I also have panic disorder, so you can imagine the mess I got myself into! I called my cardiologist and he put me on a 72 hour event monitor. I felt like it was Murphy's Law, because during that 72 hours, I hardly pushed the button at all. For those 3 days I had less PVC's than normal. But this past Monday (the 10th) he called and told me I had AFIB!!!! He said he called in a prescription for Zerelto (sp) to my insurance company (I'm 67 and on Medicare and a supplemental plan) I am waiting for the meds to arrive, but have done some reading about these types of medications and now I'm scared to death to take them! I'm also sitting here waiting to drop dead from a stroke! I'm a mess. I will be going in for an echocardiogram in 2 weeks and seeing my cardio the next week. Can I assume that if he thought I was in imminent danger, he'd have me come in immediately? I live with my husband of 40 years and love him dearly, but he is not the most supportive person. I am so scared and feel so very alone. I had another episode last night. This one didn't start until around 11:30 pm while I was lying in bed reading and went on until almost 3 am. This one had a bit more of an "ebb and flow" feeling to it, but I had another major panic attack which I know just makes everything 10X worse. I'm sorry for rambling. Guess it's obvious I need someone to help me. Thank you, again. RubyWitch

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Hello @rubywitch67. I'm glad to join your conversation with Teresa @hopeful33250. She is one of the most thoughtful and caring people you will ever encounter. I have four immediate comments: First, call your doctor and explain as accurately as you can what you experienced last night and ask for a special prescription at your local drug store. Second, if the doctor's not available to consult AND the A-fib heart beats are really disturbing, consider going to the emergency room. Third, don't be afraid of Xarelto (spelling!). It's an anticoagulant that prevents formation of blood clots in your atrium which rarely form in the upper chamber of your heart, but when they do can cause a stroke. Fourth, be sure you know the symptoms of stroke, and if you have any of them, call 911 for swift medical help in getting to the emergency room.

Here's some information on my experience; it might be helpful to you. My A-fib was diagnosed four years ago. I have been on an anticoagulant medication (Coumadin) since then. It involves regular blood tests to inhibit coagulation, and for me, that provides assurance that I'm on top of things. But I got careless a couple of months ago and didn't take care of my coagulation level, and after about three days, I had a stroke — a "small stroke," the radiologist said, when she read results of my MRI. It made me a little shaky in the legs, but after a session with a neurologist and six sessions of a physical therapist, I'm almost back to normal. As proof, my bowling league resumed after the summer off, and I rolled a 237 game and a 565 series yesterday!

I hope my experience will help alleviate your stress over your diagnosis. Can you readily connect with your doctor when you feel you need to? Would you feel better if you had confirmation of A-fib rather than PVC in your recent events? Is emergency medical help available by calling 911 in the rare case that you need it?

Hello Martin, thank you for such a quick reply. You and Teresa are really kind and caring people. It is too late today to contact my cardiologist. I'm sure if I called his office, there would be somebody on call, but I have no doubt they would just tell me to go to the ER. So far today, I have only had a few very short PVC's, or what I USE to call PVC's. I no longer know WHAT to call them. But they haven't been "bothersome" nor have they freaked me out. They feel just like what I've been living with the past 8 years. These recent weird runs have only happened in the evening AFTER I've eaten a fairly large meal and then just sprawl on the couch watching TV or reading. I think if you've read my posts, you know I have panic disorder and the more I think about it, the more I realize that when these episodes begin, SO DOES MY PANIC. Because I haven't met with my cardio yet and talked about this in depth, I am really just out here dealing with a whole lot of "unknown stuff" and "unknown stuff" scares me really bad and makes the panic come. When I first began having PVC's, I would have terrible panic attacks and I could feel the PVC's getting stronger and lasting longer. Once I started to get use to them and accept what my cardiologist said about them……that they were benign and because my heart was structurally sound, I should just learn to ignore them. Which I did. (More or less) One I reached that point, the panic attacks stopped, at least as far as the PVC's were concerned. I think I was going to make a point here, but I've gotten myself lost, again! I think I was going to say something about how I think this new diagnosis has scared me so badly, my panic attacks are really strong and that is why these episodes are lasting as long as they are. Last night, I did some of my relaxation breathing and my heartrate went way down, but then I began to OVERTHINK AND STRESS and it started back up again. I had stopped reading and turned the light out, so I was just laying there in the dark with my mind going a million miles an hour. I finally turned the light back on and started reading again. Very soon after that, my HR returned to normal, I read for a little while longer, turned the light out and went to sleep almost immediately. I slept for almost 10 hours as I think I was emotionally exhausted. And now, here I am today, 8 hours later and have had only a few mild PVC's. But I can feel my anxiety building as I think about "what's going to happen tonight?" But that's how my panic disorder rules me……….it just picks away at me and the first odd physical sensation I have, it's game over. I am on an anti-anxiety medication but normally only take it in the morning. Tonight I think I will take some in the evening and eat a much smaller dinner and not lay down on the couch.
If I WERE to go to the ER, what would they do? I know they'd do an EKG and if I was in AFIB, what would they do? See, it's that damn "unknown" that scares me so badly.
May I ask why you are on Coumadin and not one of the newer meds for AFIB? Having to have your blood checked every month, isn't that more of a hassle than taking a pill? But the pills and their side effects scare me, and I wonder if going the coumadin route wouldn't be better for me with my panic issues? I am SO confused right now. And bye the way, I am so happy that your stroke was "mild" and that with some PT you are back bowling a near perfect game.
I don't know if I'll feel better with a diagnosis of AFIB over PVC's. My cardio, who knows I'm anxious, always made a point of reassuring me that my PVC's were benign and that definitely helped. Now I don't have a clue where I am. Right now I feel like a blimp that has come untethered and is out of control.
During the week I feel like I can readily connect with my doctor, but the week-ends are a dead end. At least, I THINK they are. I've never tried to contact him after hours or on the week-end, so I don't know. Guess I just figured it was Urgent Care or the ER. And while I live in a rural area, we are only about 1/2 mile from the fire station which is very up to date and has two EMT units. The station is now also manned 24/7, so yes, there is help very close by.
I have seen my cardio every 6 months for the past 8 years since the stents were placed. I've done 2 stress/echo's, I've worn a Holter twice which showed nothing……….how did I suddenly develop AFIB? Or was I misdiagnosed and it has just now gotten worse?
I am sorry this post has probably rambled and I have so many questions. Thank you for caring. Linda

@rubywitch67

Hello Martin, thank you for such a quick reply. You and Teresa are really kind and caring people. It is too late today to contact my cardiologist. I'm sure if I called his office, there would be somebody on call, but I have no doubt they would just tell me to go to the ER. So far today, I have only had a few very short PVC's, or what I USE to call PVC's. I no longer know WHAT to call them. But they haven't been "bothersome" nor have they freaked me out. They feel just like what I've been living with the past 8 years. These recent weird runs have only happened in the evening AFTER I've eaten a fairly large meal and then just sprawl on the couch watching TV or reading. I think if you've read my posts, you know I have panic disorder and the more I think about it, the more I realize that when these episodes begin, SO DOES MY PANIC. Because I haven't met with my cardio yet and talked about this in depth, I am really just out here dealing with a whole lot of "unknown stuff" and "unknown stuff" scares me really bad and makes the panic come. When I first began having PVC's, I would have terrible panic attacks and I could feel the PVC's getting stronger and lasting longer. Once I started to get use to them and accept what my cardiologist said about them……that they were benign and because my heart was structurally sound, I should just learn to ignore them. Which I did. (More or less) One I reached that point, the panic attacks stopped, at least as far as the PVC's were concerned. I think I was going to make a point here, but I've gotten myself lost, again! I think I was going to say something about how I think this new diagnosis has scared me so badly, my panic attacks are really strong and that is why these episodes are lasting as long as they are. Last night, I did some of my relaxation breathing and my heartrate went way down, but then I began to OVERTHINK AND STRESS and it started back up again. I had stopped reading and turned the light out, so I was just laying there in the dark with my mind going a million miles an hour. I finally turned the light back on and started reading again. Very soon after that, my HR returned to normal, I read for a little while longer, turned the light out and went to sleep almost immediately. I slept for almost 10 hours as I think I was emotionally exhausted. And now, here I am today, 8 hours later and have had only a few mild PVC's. But I can feel my anxiety building as I think about "what's going to happen tonight?" But that's how my panic disorder rules me……….it just picks away at me and the first odd physical sensation I have, it's game over. I am on an anti-anxiety medication but normally only take it in the morning. Tonight I think I will take some in the evening and eat a much smaller dinner and not lay down on the couch.
If I WERE to go to the ER, what would they do? I know they'd do an EKG and if I was in AFIB, what would they do? See, it's that damn "unknown" that scares me so badly.
May I ask why you are on Coumadin and not one of the newer meds for AFIB? Having to have your blood checked every month, isn't that more of a hassle than taking a pill? But the pills and their side effects scare me, and I wonder if going the coumadin route wouldn't be better for me with my panic issues? I am SO confused right now. And bye the way, I am so happy that your stroke was "mild" and that with some PT you are back bowling a near perfect game.
I don't know if I'll feel better with a diagnosis of AFIB over PVC's. My cardio, who knows I'm anxious, always made a point of reassuring me that my PVC's were benign and that definitely helped. Now I don't have a clue where I am. Right now I feel like a blimp that has come untethered and is out of control.
During the week I feel like I can readily connect with my doctor, but the week-ends are a dead end. At least, I THINK they are. I've never tried to contact him after hours or on the week-end, so I don't know. Guess I just figured it was Urgent Care or the ER. And while I live in a rural area, we are only about 1/2 mile from the fire station which is very up to date and has two EMT units. The station is now also manned 24/7, so yes, there is help very close by.
I have seen my cardio every 6 months for the past 8 years since the stents were placed. I've done 2 stress/echo's, I've worn a Holter twice which showed nothing……….how did I suddenly develop AFIB? Or was I misdiagnosed and it has just now gotten worse?
I am sorry this post has probably rambled and I have so many questions. Thank you for caring. Linda

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Good morning, @rubywitch67! To answer your questions, I'd start by saying I probably overemphasized going to the ER. I'm always ready to do that, but I'd call 911 only if I know that my symptoms are severe and in need of emergency attention by the best doctors available. In most cases of A-fib incidents, the arrhythmia isn't that severe, although it could be. Check this source on the Mayo Clinic web site for more information: https://www.mayoclinic.org/diseases-conditions/heart-arrhythmia/symptoms-causes/syc-20350668.

A-fib is an electrical misfiring in the upper chamber (atrium) of the heart, as compared with PVC — premature contraction of the ventricles (lower pumping chambers). A-fib has a very wide range of symptoms, and treatment of it depends on what they are and how likely they are to cause you injury. In most cases, A-fib doesn't deserve immediate emergency treatment; even severe cases tend to be addressed with surgical procedures (not open-heart surgery) to correct disruptions in the electrical signals that cause the heart to beat.

Coumadin is my preferred drug for reducing the tendency of my blood to coagulate. I take a pill every day and drop in to my medical lab on the way home from the bowling alley once a month. No hassle; I get a call within a few hours about my coagulation index and what my dosage should be for the coming month. More hassle than Xarelto, but I'm glad to have the relentless monthly check on how things are going on the status of blood clotting in my heart.

Did you find the information on the Mayo Clinic web site helpful and reassuring?

Martin I wrote you a response that took me close to 2 hours and when I hit "post reply" I just got a little circle thing going around and around. I was afraid to do anything, so I just left it to hopefully fix itself, but when I came back to it 2 hours later, the entire message was gone! I have no idea what happened, but I will write again tomorrow.

@rubywitch67

Martin I wrote you a response that took me close to 2 hours and when I hit "post reply" I just got a little circle thing going around and around. I was afraid to do anything, so I just left it to hopefully fix itself, but when I came back to it 2 hours later, the entire message was gone! I have no idea what happened, but I will write again tomorrow.

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Sorry that happened, @rubywitch67. I'll be here when you can revive the discussion.

Hi (again) Martin……I was wondering if my post that "disappeared" was simply too long? Or perhaps accessing this site from my email page messed it up, but that's how I've contacted both you and Teresa each time I've written. Well, we'll see what happens with this one. I'm going to keep it very short and just ask a few questions. I would really like to know what AFIB feels like for most people, and how long their "episodes" last. To me, it feels very, very similar to my PVC's, but I get a lot more. It seems to happen on and off all day and well into the night. Most times it seems to settle down by the time I'm ready to turn out the light or it is very faint and I'm able to fall asleep. (As long as I can keep my anxiety under control) My PVC's use to happen a few times a day, and then it might be several days, if I was lucky, before I had more. Now, as I said, it's every day. Is this a really BAD thing? Could the fact that this diagnosis is less than a week old and has me so scared, caused my panic disorder to trigger it? I received the Xeralto from the cardio and was terrified of taking it because of side effects. I took it and have had absolutely no side effects. I honestly think I was mistakenly looking at side effects for anti-arrhythmic drugs, which DO seem to have an abundance of side effects….I think I was scaring myself for nothing. Martin, I'm going to close this now in case I lose this one, too. When I went to the Mayo Clinic Connect site directly, I couldn't see where to log in and I could find our discussion. I need some help with navigation as well. I hope you get this……I'm working myself into a panic again. Thanks so much Linda/RubyWitch

@rubywitch67

Hi (again) Martin……I was wondering if my post that "disappeared" was simply too long? Or perhaps accessing this site from my email page messed it up, but that's how I've contacted both you and Teresa each time I've written. Well, we'll see what happens with this one. I'm going to keep it very short and just ask a few questions. I would really like to know what AFIB feels like for most people, and how long their "episodes" last. To me, it feels very, very similar to my PVC's, but I get a lot more. It seems to happen on and off all day and well into the night. Most times it seems to settle down by the time I'm ready to turn out the light or it is very faint and I'm able to fall asleep. (As long as I can keep my anxiety under control) My PVC's use to happen a few times a day, and then it might be several days, if I was lucky, before I had more. Now, as I said, it's every day. Is this a really BAD thing? Could the fact that this diagnosis is less than a week old and has me so scared, caused my panic disorder to trigger it? I received the Xeralto from the cardio and was terrified of taking it because of side effects. I took it and have had absolutely no side effects. I honestly think I was mistakenly looking at side effects for anti-arrhythmic drugs, which DO seem to have an abundance of side effects….I think I was scaring myself for nothing. Martin, I'm going to close this now in case I lose this one, too. When I went to the Mayo Clinic Connect site directly, I couldn't see where to log in and I could find our discussion. I need some help with navigation as well. I hope you get this……I'm working myself into a panic again. Thanks so much Linda/RubyWitch

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I want to respond right away, Linda (@rubywitch67), so you'll know that your messaging is getting through. Then I'll take some time to pull together some references to help you sort out your concerns about A-fib and PVC and the antiarrhythmic medications prescribed to suppress wayward blood clots from forming when blood pools with the heart. I'll have more later this evening. I'll also send you a private message with contact information on me. Martin

@predictable

I want to respond right away, Linda (@rubywitch67), so you'll know that your messaging is getting through. Then I'll take some time to pull together some references to help you sort out your concerns about A-fib and PVC and the antiarrhythmic medications prescribed to suppress wayward blood clots from forming when blood pools with the heart. I'll have more later this evening. I'll also send you a private message with contact information on me. Martin

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Hello Martin I am SO glad my posts are getting through to you. I was more worried than you can imagine. I think I may have gotten something mixed up in my post to you this morning. When my cardio ordered the Xeralto, I looked up side effects for ANTIARRYTHMICS, which do carry more side effects, but now I realize the Xeralto is an ANTICOAGULANT and all I've found for side effects of those are some concerns with bleeding. I'm not real crazy about THAT either, but I am no longer terrified of taking the Xeralto. I will look forward to hearing from you when you have time to find me hiding under my bed. Linda

@rubywitch67

Hi (again) Martin……I was wondering if my post that "disappeared" was simply too long? Or perhaps accessing this site from my email page messed it up, but that's how I've contacted both you and Teresa each time I've written. Well, we'll see what happens with this one. I'm going to keep it very short and just ask a few questions. I would really like to know what AFIB feels like for most people, and how long their "episodes" last. To me, it feels very, very similar to my PVC's, but I get a lot more. It seems to happen on and off all day and well into the night. Most times it seems to settle down by the time I'm ready to turn out the light or it is very faint and I'm able to fall asleep. (As long as I can keep my anxiety under control) My PVC's use to happen a few times a day, and then it might be several days, if I was lucky, before I had more. Now, as I said, it's every day. Is this a really BAD thing? Could the fact that this diagnosis is less than a week old and has me so scared, caused my panic disorder to trigger it? I received the Xeralto from the cardio and was terrified of taking it because of side effects. I took it and have had absolutely no side effects. I honestly think I was mistakenly looking at side effects for anti-arrhythmic drugs, which DO seem to have an abundance of side effects….I think I was scaring myself for nothing. Martin, I'm going to close this now in case I lose this one, too. When I went to the Mayo Clinic Connect site directly, I couldn't see where to log in and I could find our discussion. I need some help with navigation as well. I hope you get this……I'm working myself into a panic again. Thanks so much Linda/RubyWitch

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I have supra ventricular tachycardia or SVT. It feels like my premature atrial complexes or PACs when it is happening. I also have very bad Anxiety and panic. I get scared because I am 72 years old and I wonder what's going to happen to me. I really need to get the anxiety and panic under control. When it's better, my heart feels better.

@anniegk

I have supra ventricular tachycardia or SVT. It feels like my premature atrial complexes or PACs when it is happening. I also have very bad Anxiety and panic. I get scared because I am 72 years old and I wonder what's going to happen to me. I really need to get the anxiety and panic under control. When it's better, my heart feels better.

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Hi, @anniegk. Glad to have you on this discussion with us. Hope you have had a chance to review other postings in this discussion, including mine of 3 days ago when I posted a Mayo Clinic web site link that you may find very helpful in giving you some assurances: https://connect.mayoclinic.org/discussion/new-and-totally-lost/?pg=1#comment-125372. If you can check that out, we'll be glad to know what you think of the information it provides.

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