Reassurance needed if possible please

Hi

I originally had Dilated cardiomyopthy when i was 14 years old. heart was beating up to 260bpm. I had two ablations and ended up having a pacemaker fitted. Had my first one in for five years and had my second one in two years this august. Ever since being poorly i panic about literally anything. I am just wondering is it possible for anything to go wrong with my pacemaker? I keep feeling a little fluttery in the chest but when i check my pulse it seems normal. I have been to ER a few tiimes (last time being monday night just gone) and they do ECG, take blood, X-rays, temp and blood pressure and always send me home saying all is normal. I cant shake this anxious feeling yet i have been to ER that many times over nothing that i am quite embarrassed to go again ecause i feel a flutter but i generally am very scared. Could i die?

14 Comments

Hello

by Bionic Man - 2010-03-07 01:03:26

I was diagnosed with a Dilated Cardiomyopathy also. I haven't had any ablations. My irregular beats are being controlled somewhat with medication. Although I still have some fluttering and crazy beats from time to time. I'm not exactly sure what kind of beats you're having. I asked my Dr if the crazy beats I was getting would kill me and he said "NO". You may want to ask your Dr the same question. I was having lots of anxiety and stress. These definitely made my heart beat worse. Some days I'd feel absolutely miserable. The stress is beginning to fade and so is the anxiety. It's no coincidence the crazy beats are fading also. I wouldn't worry too much about the pacer malfunctioning. As far as when to go to the ER. That would be your decision based on how you feel. I've had times when I thought I should go but the feelings pass. Sometimes it's best to play it safe and go. Don't ever feel embarrassed to ask to see a DR. I know what you're going through because I have the same thing.
I hope this helped,
Bob

Thanks Bob

by Freshfemale - 2010-03-07 01:03:36

Thank you for response Bob. Its awful. My lovely beautiful stepfather passed away in May he was only 48, massive heart attack and since then im ppanicking really badly about it and wondering if i could just die. I keep checing my pulse and its 60bpm but i have lke a nervous fluttery feeling and feel a little dizzy. Its scaring me. I am doing everything i can to occupy my mind, i would usually have a nap but im even scared to do that. I hate this :(

suemarie

by Freshfemale - 2010-03-07 01:03:45

Wow, thank you for that. That makes so much sense and kind of hit the nail on the head for me. I have been like this from being 17 but got worse this past year. I take three lots of regular medication for my anxiety (Sertraline - weaning off these now though, Duloxetine - just starting these and Amitriptyline been on this for years and years) I also have Diazepam to hand but i have had one every day this week and i am starting to worry i will get addicted to them so trying my best to override this but it really is hard. Even writing this now, i know i am being totally irrational and probably sound ridiculous but i honestly cant help it. I try (maybe not hard enough) to push the thoughts out like i say "lalalalalala" in my head - as nutty as that sounds but that is kinda getting old. I try and think of goin on holiday and stuff. I had a few drinks last night so am a little scared to take a diazepam lol... im scared of everything ARGH!!

anxiety

by Suemarie - 2010-03-07 01:03:52

Just wanted to tell you that I have been dealing with anxiety off and on over the years and although I don't want to give advice that you should receive from your doctor, in my case the fluttering was due to these anxiety issues. It's so hard to overcome them when you are in that "mode" and our bodies are in a contant state of stress and fear. I know you probably feel alone just I like I did because I would see other people going about their business and wish I would be more like them. Some even said just "get over it" but I know it is easier said than done. In these situations of anxiety, you can work through them with breathing technques to try to get your body back in a normal breathing pattern, but you have to keep working on it for a while. Try diaphragmatic breathing where you take in a deep breath but instead of your stomach going in when you take in the breath, make it go out, hold your breath for a few seconds, and blow the air out having your stomach go in (just opposite of what we think we should do). Maybe even an as-needed anxiety med to help calm you down might help just until you can get through this because after a while, you won't even need it all the time. It seems like they have confirmed that nothing is wrong with you on your visit to the ER, and I really think it is related to your stress and anxiety because we don't breath properly when we are anxious and when I had it, my doctor said it was stress. If you could go for some counseling for anxiety, I think you would gain a lot of confidence in yourself and the fluttering would eventually go away. I just know it will because you will not be thinking about it constantly. Make some plans to get some counseling just for some "you" time! You are special and you will work through this....it will pass. You are going to be okay!
Suemarie

My unprofessional opinion

by Pookie - 2010-03-07 02:03:40

I think you need some counselling. I too lived what you are going thru.

I didn't want to go to counselling, but in the end, it helped tremendously with the anxiety, then most of the weird beats disappeared too.

Anxiety can wreak havoc on our lives, but it's up to us at some point to reach out and get the help we deserve to enjoy life.

Only occasionally do I need a Clonazepam now...equal to your Xanax in the States. The breathing, I think, is the key. Just practice it and you will see that it helps. It will take some time to see a difference, but I promise you that it will.

And it's only my opinion, but you shouldn't be mixing alcohol and those drugs.....safety first!!!!

I know it's hard, and you have taken the first step by voicing your feelings on here. You will be amazed by the overwhelming support you will receive by this awesome group of people.

Remember: You are not alone.

Take care,
Pookie

thank you pookie

by Freshfemale - 2010-03-07 03:03:32

Just to clarify. when i do have a alcoholic drink (rarely these days) i do not take any medications that day ... again im too scared too lol im actually scared of everything. i have been in bed all day today and its been lovely here in the UK. i am currently having therapy but not seen her for a good few weeks now. I have taken one 2mg Diazepam about half an hour ago and im not really feeling the benefit. Debating whether tot ake one more but guess what? lol, im scared!!! ARGH! im going insane.

I would just like to thank you all for your lovely reassuring responses :)

Seriously though, is there something wrong with my pacemaker? How do i know its an anxiety attack and not someting more serious?

Call your doctor

by DanaT - 2010-03-07 04:03:21

Hi Fresh. Can you call your EP or Cardiologist first thing in the morning? (I don't know what time it is where you are) I think it's anxiety too, but have them interrogate you. Have you have them do that lately?

Dana

dana

by Freshfemale - 2010-03-07 05:03:45

im in the UK. its currently 21.12 here.No not been interrogated since october. was going to go to my GP tomorrow and see what he says. im not in much pain or anything just feeling really nervey and i have checked my pulse and stuff and it feels fine. i just never been anxious constantly all day like this. I had a bit to drink last night and im thinking that may have something to do with it. I have taken two 2mgs of Diazepam and feel slightly better, just still feel uneasy. its cack :(

Hello

by lenora - 2010-03-07 07:03:25

I have dilated cardiomyopathy also and I get anxious like that sometimes like something terrible's about to happen. Usually it's when I'm in flutter, but with the pacemaker I can't always tell when I am in it. It is very scary, I'll agree. DCM is a demon to battle. Statistically I shouldn't even be here after 10 years, but I am!! I have the same old stubborn heart plus the pacemaker, but I'm still here. You may be in fib or flutter if it's making you that anxious, but you can't necessarily feel that in your pulse. Get your pacemaker interrogated tomorrow. Don't ever give up hope. Warm wishes and prayers for you. Lenora

To all of you :)

by Freshfemale - 2010-03-07 08:03:42

I have just arrived back from A&E and all was fine. They did an ECG, bloods, blood pressure, temperature and pulse rate and they said everything was spot on and that it was anxiety related. still feel a little uneasy but feel better now that they tell me im fine. Going straight to GP tomorrow, i cant stand being like this any longer, im 22 and im scared of EVERYTHING. Thank you all so much for responding and giving me the reasurance i really needed. So nice to have a bunch of lovely people who know exactly what it is m going thru. Thanks guys xx

Hi

by Kathy.m.wenger@gmail.com - 2010-03-08 03:03:15

First off don't ever feel bad to go to the Emergency Room, its your health. I too went through that for the first 6 months with my pacemaker, I would have a problem, fluttering, extra beats, low blood pressure, and felt awful. This site was great to ask questions, and see if others have had similar problems. It is always nice to not feel like you are alone. My advice is never feel bad to ask questions, and more questions. There was something you said too that could be causing you anxiety, your Stepfather passing away, grief is very hard on the body, and when you already have physical issues with your heart this can make the problem worse. Don't be so hard on yourself, give yourself time to grieve and don't be afraid to ask for help, whether that is from this site, or family, or friends, or from the medical side too.
Hang in there, Spring is on the way, and I am wishing you a sunny day in the UK.
Sincerely kathy

Kathy

by Freshfemale - 2010-03-08 03:03:16

Thank you so much for your response. I think you could be right there regarding my lovely stepfather passing. I was a bit panicky before he passed away but even more so now. Funnily enough i just caught up with an old friend from school (no pacemaker) vbut she did lose her dad too and she is saying that se suffers really bad panic attacks too so i think you are right. Thank you so much for taking the time to respond to my question, so nice of you all. Thank you again :) xx

Glad to hear...

by wenditt - 2010-03-08 07:03:40

So glad to hear you took the trip to the emergency room and that everything turned out OK. I've had my PM for six months and was riddled with anxiety for the first 5 months. Everyday...all day long! It was like it was running through my veins. No matter what I did I couldn't escape it. It was a horrible way of living...or not living! I've been out of the woods for a month. Although I have scary moments here and there...it isn't anything like it was before.

I tried meditation, but I couldn't actually focus on anything other than my heart beat. I tried yoga, but I couldn't focus on myself and my mind kept wandering. I tried anti-anxiety meds-they took the edge off but didn't erase the fears completely.

My recipe for "getting better" consisted of a few things. First-I would ask questions...over and over again until I felt like I understood what was happening. The doctors got sick of seeing me....but I didn't care. I just kept telling myself "if I could only understand...I would feel so much better." And I did. Second, the meds combined with counseling and prayer were a HUGE help. I learned from the counselor what to do when I felt the anxiety coming on. She taught me strategies on how to handle those moments med free.

Thirdly, I got my thyroid checked. Turns out that my underactive thyroid went into overactive mode and my medicine doses were too high which in turn was causing tachycardia and anxiety. Once those meds were adjusted, I did a complete turn-a-round.

Lastly, I turn to people here for help and advice. The people here are wonderful who will jump on-line day or night to lend an ear or thoughtful words. I think about how there is no one else I know with a PM....but the people here. And I thank the heavens for this site everyday. So post your thoughts here, your questions....there will always be someone who answers!

Sending you well wishes and glad you are OK.
Wenditt

Wendy

by Freshfemale - 2010-03-08 08:03:16

I totally agree with you. This site is amazing and so are all of the users. No-one i know has a pacemaker so this site really is fantastic. Whoever created this site is pure genius and very thoughtful. I think all heart patients need reassurance from time to time and where better to get it than from people with pacemakers! i am so grateful for you all being here and your advice yesterday. thank you again xx

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