Hello Everyone

I am new to this site. I am glad I found this site it is nice to have someone to talk to and see I am not the only young person going through this as well.I was born with a hole in my heart and it closed up on its on.Then I was diagnosed w/ Mitral Valve Prolapse. Then SVT, IST, & SVT.I am 33. In Nov 08 I had an IST ablation on my sinus node for fast heart rate. Then in Feb 09 had to have a pm put in for my heart pauing to much. I am still having wierd flutters all dayw/lightheaded,sweating,tired all the time and also I feel real weak.I also feel like I am shaking inside. I tell them but they keep saying oh your fine and I am no I am not. I can't do anything it makes it worse. Dont know what to do. Can't work or drive. I am going crazy. Thanks for listening.

10 Comments

Angelie

by Tracey_E - 2009-05-04 06:05:08

Hopefully she will say hi soon. I think you are her twin.

Have they checked your settings? Or done a Holter or stress test to see what's going on that the pm memory doesn't capture? Keep on them. You know when you dont' feel right, don't let them tell you you're fine when you aren't.

interesting

by nat - 2009-05-04 06:05:08

Hi Kimmie,
I was amazed reading your comment! I am 23 and received my pm two years ago. I too had open heart surgery as a new born due to a valve problem and a hole in my heart as well. I am experiencing some of the same problems and am unable to work too! Has your dr addressed the shaking? I have been having shaking spells where I wake up in the middle of the night and shake, they are weird and sometimes less intense than other times. I mentioned it to my doctor and she asked me if I was nervous!?!
How long have you had your pm?
Has your doctor explained any of the reasons for these symptoms? I am undergoing more tests, it is getting very old.
I feel at times I am going crazy too.
best to you,
please contact me if you want to chat.
Natalie

kimmie

by nat36 - 2009-05-04 06:05:38

I just got a pacemaker Friday and joined this forum today. I am typing with one hand so excuse my typing. I feel for youand we have similar situations. I had SVT, IST and then sick sinus syndrome. I had my sinus node ablated two weeks ago and since then my sinus node has only been working 20% of the time and my AV node has been taking over. I felt horrible!! I do feel better but still feel like the AV node is taking over some. I thought the pacemaker would fix that so I am confused by that and when it hapeens it makes me feel awful!
You should make your doctors do a 24 hour monitor on you! That's how they found all my trouble since the ablation. I would keep bothering them until they help you. I know exactly how you feel! Hope things improve.

Hello nat36

by Kimmie - 2009-05-04 06:05:41

Thanks for the advice. I hope you get better soon. I know how the one arm thing is & I think everyone else does as well. They have checked the device but they say it isnt picking up anything at all. It shows that my pm is working over 50% of the time. They have adjusted it many times. I am going to ask about getting a 24hr. monitor as well. I also have shortness of breath. They have me walk in the office and then check the pm and they said it my hr went to the mid 70's for just about a min or 2 of walking. So hopefully we can get this figured out soon. It so nice to have people that understand to talk to. Take Care and God Bless. TTUL

Same boat

by itsameg - 2009-05-04 06:05:50

I can really relate to you. I just had a pacer put in also and I'm still having the dizzy crappy feeling I did except now my chest hurts from being cut open, I get tired much quicker, and I have spasms in my shoulder from them moving muscles around. t's so frusterating to be told, "we don't know" or "that's not the same thing that was going on earlier" Best of luck in figuring it out, I'm still at it 2 months later.

Hi Natalie

by Kimmie - 2009-05-04 07:05:25

It was nice hearing from you.I still have mitral valve prolapse as well as afib. My hole in my heart they said healed on its own. I dont see how it did that but whatever. I told them about the shaking but they didnt reaally say anything about it. It is driving my crazy to be so young going through this when I should be out with all my friends enjoying life. I know you probally feel the same way to. I had my pacemaker put in Feb.21,09. They keep saying that my electrical system in my heart is really sensitive that is why I feel all this flutters and things. I dont belive that for a second but what can I do. I have no insurance since this is pre-exisiting. I am going to mention the monitor. The last one they did showed pausing that is why they did the pacer. I just hope they will listen to me soon. Thanks or listening and I hope you get well soon. Sorry for the babble but it is nice to finally talk to someone that understands. Take Care & God Bless

forgot something

by Kimmie - 2009-05-04 07:05:29

I am also still on meds for Afib. Sorry I forget things sometimes.

Update

by Kimmie - 2009-05-04 11:05:13

I talked to my dr and he is having me come in to the office tommorrow tuesday and I am going to get checked out to see what is going on hopefully for sure this time. I am supposed to get a 24 hr. monitor too. Now he will see I am not nuts there is something wrong. He said they might have to do another procedure. I will talk to yall tommorrow after I see what happens. Take Care & God Bless to everyone. Goodnight.

Hey there, it's Angelie

by Angelie - 2009-05-05 11:05:10

As Tracey mentioned, she was talking about me chiming in. I've been in Atlanta seeing my EP doc.

Kimmie,
I am 33 years young as well and I know first hand what you're going through mentally. It's hard feeling like an old lady when all of your peers are out having the time of their lives doing all of the things "young" people do. It really sucks.
I've sort of skimmed through the replies here. You have a fib and are on medication for it still. You most likely will remain on that medication because a-fib is particularly difficult to treat, and pacing generally does not cure a-fib either. Sometimes they can program your pacer to overdrive the a-fib, but it doesn't always work.
I have an extensive heart history, but things have been really bad for the last ten years. I just had my 5th, and hopefully last, ablation last month. I have had SVT, IST, a-fib, a-flutter, atrial tach, junctional rhythm, AV dissociation..ventricular runs.......tons of things. I got my pacemaker in 8/08 after the heart rhythm drug, Tikosyn failed to work. I have been on every heart medication except Amiodarone- which I refused because of the awful side effects.
TraceyE is right. Do not give up on your complaints to the medical professionals until you feel the best that you can possibly feel with the medical conditions that you have. Pacemakers are designed to make you feel better not worse. Sometimes, depending on your medical conditions, you have to settle for some things as the "best that they can do", but pacemakers are an entirely different realm. There are tons of configurations and pacer settings and sometimes it just takes a while to find the right setting for your lifestyle.
Does it really feel like your body is shaking inside. Try your best to describe to the doctors what you're feeling, without sounding "insane". I know that sounds crazy, but believe me I know from experience. At one point, it felt like my heart was spinning inside my chest, but later I realized that doctors understood "waves, pounding, and pausing" feelings better than my heart spinning inside my chest.
Also it is very normal for you to be cardiac aware with all that you have been through-it's hard not to be.....but soon after things settle down- hopefully you won't notice your heartrate as much.
Why can't you drive? Are you dizzy? Do you pass out?
Were you really born in 1870 as your bio states? LOL!
Hang in there. Please know that I'm here, and I am your age. Feel free to send me a message anytime, and I'll try my best to help you as much as I can.

Angelie

Still having problems

by Kimmie - 2009-05-28 04:05:13

I had a monitor put on and a few days the drs office called and said I was having lots of sinus tach episodes and put me on atenolol 50 mg 1 time a day. Week later they increased it to 75 mg 1 day. Still told them a week later having problems and they said that iam fine i am just having pc's to just keep my appts.1st he said that it was a sinus tach what is it then?I had an ablation for sinus tach could it be coming back? Maybe he didnt get it all? I am trying to tell them I am still having problems and seem to be getting worse but here we go again no one wants to listen to me. What can I do? Should I receive a 2nd opinon? I just want to get better and go back to work. Talk to you later.

You know you're wired when...

You have a new body part.

Member Quotes

I just want to share about the quality of life after my pacemaker, and hopefully increase awareness that lifestyles do not have to be drastically modified just because we are pacemaker recipients.