sensations, squeezing, talking
I have had a pacemaker now for 3 weeks. It almost seemed the chest sensations were getting better but yesterday they got worse. I can't lay down in bed because of the sensation in my chest that feels like little jolts or hard heart beats. When I talk now, I feel short of breath and get a squeezing sensation in my chest. I also feel like coughing when this happens. The only two people I know who have pacemakers are long time uses of PMs and have never had sensations of any kind.
It is so hard to sort this all out. At this point I am of the mindset that it is not normal to have so many sensations in my chest, and some of them are frightening if not depressing.
I feel helpless because I have been told the PM is working fine. It leaves me no alternative. It might be working fine but it is not cooperating with my body.
I was told that Sotalol is controlling the AFibs. If so, then I wonder why they didn't just give me Sotalol instead of a pacemaker. This is a big puzzlement to me and I appreciate any input that my fellow pacers are willing to share with me.
I am not even sure that Sotalol does anything for Afibs.
Looking forward for hearing from you. Thank you, Karen W.
4 Comments
Again call your Dr
by janetinak - 2010-11-03 04:11:45
sqeaking wheel gets the grease. At the very least call your regular doctor to discuss this. It may be anxiety but need to rule out a medical issue 1st.
Good luck,
Janet
Thank you everyone. Smitty, Cruz, Janet
by Karen W - 2010-11-04 01:11:55
I don't know what I would do without this website. In the short time I have been following it, I have learned a lot. I did send a long message to Smitty last night and I can't find it. This is the second time a message I sent to someone else got lost.
I cannot take the time to recreate it now but am grateful to all three of you for you input. It gives me hope and strength. I go to see my Cardiac Electrophysiology MD today and will talk to him about several things in these replies. I think my docs are used to skimming the surface when talking to their patients. I need more than that, this is my heart.
Thanks again........Karen W.
Settings for the PM
by cruz - 2010-11-04 10:11:32
I have an ICD (bi-vent, combo PM/defib) and ran into problems. When I originally went in for the 3-week check, the tech said the same thing.."it's working fine." I talked to the EF (doctor who did the implant) and the nurse and told them it was waking me up, causing these "hiccups" in my diaphram and about the hard/loud heartbeats. They had me go back to the tech, had him do adjustments. I had to go back 3 more times for adjustments before it finally got to a point of comfort for me, but I'm now free of all/most. I still occasionally have the hiccups, which are caused by a lead touching a nerve, which can't entirely be fixed since I'm 100% PM dependent, but it's far less likely to happen and only occurs when I'm laying in a specific position. Don't get sidetracked with the fact that the PM is working fine. If I can't adjust the volume down on my radio, it doesn't mean the radio is not working. This is the same thing. They need to "dial it down." Be vigilant and persistant. Trust me, you aren't the first one to complain about the hard heartbeats and it can be addressed and fixed.
You know you're wired when...
You can shop longer than the Energizer Bunny.
Member Quotes
I have had my pacer since 2005. At first it ruled my life. It took some time to calm down and make the mental adjustment. I had trouble sleeping and I worried a lot about pulling wires. Now I just live my life as I wish.
Demand To See The Doctor
by SMITTY - 2010-11-03 04:11:35
Hi Karen,
Out of consideration for the site, and the ladies that may read this, I'll not print the words that come to mind when I read a posting like yours. You are not the first to report something like this and unfortunately you will not be the last. But that doesn't help you any I know, so let's start with something that may help you.
First, what you are feeling is not normal and it can be corrected. Second, that person that told you your pacemaker was working fine was probably correct, just as you are correct in saying "but it is not cooperating with my body." Getting a problem like yours resolved is sometimes difficult.
For starters I suggest you talk to the doctor, no nurses, no assistants, but the doctor that implanted your pacemaker. Tell him/her just what you have told us. It may even be a good idea to print out what you have said here and use it as your guide when you talk to the doctor. I say that because I know how easy it is to get sidetracked when trying to talk to what we perceive as an expert in their field. But remember, that doctor may be the expert about implanting pacemakers, but you are the expert when it comes to knowing how you are feeling since getting a PM.
If that doesn't get you immediate access to help, or if you run into delaying tactics in talking to the doctor, print out a copy of your message and mail it to the doctor along with a copy of that message going to the administrator of the hospital where you got the PM and a copy to the pacemaker manufacturer. Now, I'm not saying make any threats. That should not be necessary but can always be done later if need be. Just remember when it is all said and done that doctor is in reality the salesman (albeit probably the best educated salesman any of us will ever see) for the hospital and the PM manufacturer. Without you, or us, as the customer nether of them succeeds, so complaining customers they do not like to see.
As for being frightened, I can understand that very well, but I really think in the short run (a few weeks) your biggest problem will be from lack of knowledge of what is going on and the discomfort you are experiencing.
As for the Sotalol controlling the A-Fib, that is a common treatment. Sotalol is a beta blocker and can alter the workings of heart's natural pacemaker and when so doing it stops or reduces the A-Fib to an acceptable level. But, the ringer in doing that is it slows the natural heart rate to an unacceptable level so we get a PM to bring the rate back up to something that is acceptable. That part I can understand, but it is the brush off you seem to be getting on your other problems that I don't understand.
But that is enough from me. I hope you can get the problems solved quickly as I think someone knowing how to adjust the settings on your pacemaker can do that in short order.
Wishing you the best,
Smitty