Can anyone offer me help and advice

Hi out there

I am 51 years old and had a dual chamber pacemaker fitted eight weeks ago. I am very nervous about posting as I don,t usually do this sort of thing. My pacemaker is fitted as an on demand basis so I usually most of the time use my own heart. However, I have been experiencing dizzy spells and feel as I am going into a faint/colapse. Afterwards I feel very unwell and light headed. Last Wednesday morning I had one of these turns and since then have felt very light headed. I phoned the pacemaker department who thought I might be experiencing some low blood pressure or my settings might need adjusting. On Friday night I ended up in A & E not feeling very well at all and on Sunday went to see an out of hours doc. I am finding it very difficult for anyone to believe I feel unwell. I again spoke to the pacing clinic today and when I suggested to the technician that I thought I might have Pacemaker Syndrome she said it was extremely unlikely and very rare in a dual pace maker. I am set at 60/130. I have also developed a cough, not in the sense of a cough and cold but a cough and generally feel unwell, light headed and anxious. Does anyone out there had/or have had any of these systems? I can't be imagining these symptons can I?

6 Comments

Thank you

by Young at Heart - 2010-07-05 03:07:31

Hi there to Sue, Brady Bunch and Ronaldo

Thank you so much for your comments, they are much appreciated. I am feeling a little better. I still feel light headed and I am going to see the tech. on Thursday of this week to have it checked out. Its just when I felt that awful feeling of going into a blackout again for a few seconds that made me really panicky. Could I ask Brady Bunch what they adjusted your settings to. I just feel in myself that I shouldn't be having that feeling of going into a faint. Do you guys still get that feeling of going into a faint. I was only having a blackout every two or so weeks but then I might have a few in a row; but it feels just like going into a faint, but it stops. Could I also ask what an "SUV Hood" stands for. I have not heard of this saying before. Once again many thanks. Trying to stay positive and think positive thoughts. So pleased to hear from you its made me feel so much better hearing from you and your experiences I don't feel so alone. I don't know of anyone who has had one fitted and wasn't sure if what I'm feeling is real or imaginery.

Took a while

by COBradyBunch - 2010-07-05 11:07:57

I was hyper sensitive to anything going on with my body after having my implant just over a year ago. My settings were originally the same as yours and found they needed some tweaking but a lot of my issue I believe was just the fact that I was so nervous (scared) and didn't like the whole pacemaker idea. I did have an infection issue but I also was dealing with stress, fear and a lot of other things. Talk to your doc, talk to your pacer tech, talk to people here. Also I am telling newbies to learn about the stages of grief because you are very likely going through them and the more you know about what you are going through the better you can deal with them.

It will get better. Just one word of advise, try not to become an SUV hood ornament like I just did. Really kind of makes it a little more difficult to reach post pacemaker goals.

Low BP and dehydration?

by cruz - 2010-07-06 01:07:17

I don't have the same dx as you but when I went in with the dizzy, chest pain, etc., they did tests to see what my blood pressure was after laying on the table for 10 minutes, after I sat up, and then after slowly standing. My blood pressure was way down and the many close calls I had been having with nearly fainting stopped after some adjustments to the meds and some tweaking with the settings. While I still occasionally get dizzy, I've had none of the "brown-outs" since the adjustments.

Symptoms could be something else??

by travlin50 - 2010-07-06 02:07:21

If your PM doctors blows you off and tells you everything is fine, make sue you tell him your symptoms are real and what else could make this happen if it is not your PM? I ended up with a viral infection in my inner ear and had the same sensations of fainting that I did before my PM install. You said you developed a cough? - maybe you have a bug - worth checking it out.

I think

by LS - 2010-07-06 07:07:08

What we feel at times sure is REAL to us. It's just trying to get the doctors & others to understand what we're experiencing.
Are you taking any meds that might need to be adjusted?
Liz

Sounds VERY similar to POTS!

by AnnieMae11 - 2010-07-07 01:07:43

I spent around seven years being bounced around from this specialist to that one. I was in the hospital and the er numerous times with many of the same symptomsuntil I went to the Cleveland Clinic where I had a tilt-table test along with other tests and was diagnosed with Postural Orthostatic Tachycardia. Look at the website www.DINET.org. It explains the symptoms, what to avoid, etc. There is no harm in reading it. The more knowledge you gain, the better informed you are. They put my first pacemaker in before I was even diagnosed. Luckily, there is a Dr. in Toledo, Ohio who specializes in this disease. He has found a German certain type of pacemaker that can detect when the volume of blood in the chamber in our heart lowers, which means that my heart is pumping my blood somewhere, and my pacemaker is set to kick in at that time to keep me from passing out. The other pacemaker did not know until after it was too late and I had already passed out or was in the process of passing out. I know this is hard to understand, without knowing the technical terms, but those are the basics! I hope this helps you or maybe someone else.

You know you're wired when...

Friends call you the bionic man.

Member Quotes

The pacer systems are really very reliable. The main problem is the incompetent programming of them. If yours is working well for you, get on with life and enjoy it. You probably are more at risk of problems with a valve job than the pacer.