PM being suggested

more questions

by Tracey_E - 2016-08-10 12:42:26

More questions I would want answered before deciding to get a pacemaker:

When you had the monitor, was there any correlation between the symptoms and heart rate dipping?

Does your rate go up on exertion? Your average isn't terribly low but what's more important than the average is if your rate goes up when needed and how low it dips. If it stays around the high 40's all the time but goes up on exertion that's much better than mostly staying in the 40's but low dips and/or not going up as needed. The first probably won't feel much better paced, the second would. 

Have you had a tilt table test to see what your bp does on change of position? Dizziness when standing up could be a drop in bp and/or a drop in heart rate. If that's what it is, the pacer can only fix half the problem. 

It might help, it might not. All the pacer will do is raise your rate, so it will only fix problems connected with a low rate. My rate was low 40's but never went up so I felt tremendously better with it and have never once looked back and regretted it. 

PM being suggested

by confused - 2016-08-10 12:58:29

Hi,

It stays high 40's most of the time.  Even at work at my desk.  Sometimes it will go mid 50's but mostly stays in the high 40's.  Sometimes I will get a weird tired foggy feeling and check it and most of the time it then has hit 45 to 46.  I have seen it hit 42 to 43 at work also.  

When i did the stress test I got it to 142 after 10 minutes on the treadmill and was sweating.  They told be to go ahead and quit because they couldn't get it to go any higher.  I was going pretty fast.  Like a jog.

I check it sometimes while I have walked at home just at a normal pace after a mile and it ranges 75 to 79.

I have never heard of a tilt table test.   But I even get the dizziness while sitting down sometimes.

Thank you for commenting!   I am hoping talking to someone will put my mind at ease a little.

Sounds very familiar

by confused - 2016-08-10 13:35:00

Hi FlyGirl,

Good luck to you also!  

Sounds like your EP doctor is taking it more lightly than mine though.  20's or passing out is dangerous!   You may want to get a second opinion.  

Sounds very familiar

by confused - 2016-08-10 14:18:15

Wow,

Yes then it seems they have watched you pretty good then.  If you are like me I am sure it is all driving you crazy. 

I have thought the same thing.... if you could just test it out it would be awesome.

I wish you the best because I know this is a hard decision!

Complacated

by confused - 2016-08-10 18:13:02

Sounds like you have had a very rough time!

Thank you for sharing your story.  And what you said at the end is what my family is afraid of that I may be risking further damage if I don't get it. 

I want to go with my gut and have it done but I am just scared I won't see a difference.

Hope all goes well with you and thanks again.

Brady

by Jeffand - 2016-08-11 00:37:35

I'm 10 weeks post-implant. 37 years old, good shape, avid runner. I had occasional Brady episodes, down to 40 or below, occasionally lower and I'd pass out once or twice a year. Normally I rest at 55 and feel fine. Like you I went back and forth for about a year ("is it worth it for 2 minutes of use a year?"). 10 weeks ago I passed out on a flight and kept passing out, used a pulse ox meter and saw I was at 40 when not passing out. Thanks to an implantable loop recorder they got a pen EKG of the episodes and saw repeated 6+ second pauses. Got a pacemaker the next week. Felt like a no-brainer decision after that hellish flight.

After getting it I have zero regrets. Even though I usually don't feel any different, the peace of mind while driving or flying is totally worth it. I pace < 1% of the time, usually due to PVC's, so so far in 10 weeks all I've gotten from it is less anxiety but it's been worth it. I have a Boston scientific accolade el dr and at current rates won't need a replacement for 14 years. Other than that I largely forget I have it. 

Somewhat different from your situation, but hope it helps. 

Brady

by confused - 2016-08-11 09:38:48

Thank you Jeffand for the comment.  Glad to hear all has went well for you and yet we are somewhat in a different situation yes your comment does help.

Both doctors plus my family doctor have mentioned that passing out is a very high possibility and it does worry me while driving.  I get very tired even driving to work alot.

Hope that all continues to go well for you.

PM suggested

by janenoelle - 2016-08-11 23:02:53

My advice is for you to go to a large university hospital and get another opinion. My pacemaker has been life changing. Do not be afraid if you need one!

It may not solve everything but is likely to help a lot

by techiej - 2016-08-12 16:21:30

About 8 months ago (@57) I had my PM put in and it was a major change (for the better) starting almost right after waking up from the procedure.  My wife told me the color in my face had returned and I now don't feel like I'm barely making it through the day.

What happened to me was about 6 months prior to the PM I had surgery for a Hiatal hernia (stomach was pushed through diaphram).  After that surgery I was having periodic episodes - about once/week - where I would feel very weak, slightly dizzy, blurred vision, heavy-cold sweating and would nearly pass out. After going around with this with my surgeon they finally suggested that I talk to my primary care Dr in case it was a heart related problem.

While @ my PC they took my HR wnad it was 57 (my normal resting rate has always been throughout my adult life between 50 & 60).  While discussing they took it again and it had dropped to the mid 40's.  They then did an EKG and it would move between the upper 30's and lower 40's -- so I got a referral to a Cardio Dr.

Went through 48 hrs of holter test with no obvious conclusion and then a consult with an EP.  The EP had me wear an event monitor so that I could trigger the recording for 3 weeks.  Had numerous events and when I went back to see him again it was borderline.  What he told me was that if my HR dropped below 30 it was a non-decision - PM right away.  But since it only seemed to drop into the mid/high 30's when I was resting they had me do some more tests.

When the next test was run - and echo - my rate dropped to the low 30's during the test.  THey then checked my response/recovery rate which would bary from "normal" to non-existant (this test was basically walking the halls with a nurse checking my HR as we went).

My EP then told me that he didn't think that a PM woudl cure my originally reported symptoms, but strongly suggested one as it was likely that otherwise I woudl probably meet him in an ER when I passed out.  He did tell me that it would improve my quality of life and would make it easier to get through one of my episodes as my heart rate wouldn't drop below the setting even if my blood pressure started to drop.

He was right - I am still having my episodes but their severity has declined somewhat.  I can now walk the dogs (with someone else with me) and if I have an episode can make it home if it's under 1/2 mile, otherwise I wait for someone to pick me up.

As I stated in the beginning, I feel tremendously better since getting it and don't regret it at all.  The only real side effect that I have are that it is more difficult to sleep on my left side due to the feeling of the PM under my skin.  BTW, since my normal HR was 50 they set my lower range to 50.  I did have to have them tweak the recovery/response rate a coupld of times which has helped me with physical activities.

Regarding my episodes, having finally gotten a referral to another surgeon, they seem to think it is my vagus nerve that is being pressed upon that is then causing a drop in blood pressure.  After some more tests it coudl be due to a siginificant swelling of my lower esophagous (above the repair point) and am gaving the first (of what will be several) procedures to try and fix this starting the end of next week.

Bottom line - if you have confidence in your Dr and they are an EP -- this is important, at least to me -- then I would go with their recommendation. 

much needed

by confused - 2016-08-12 16:45:26

I want to say thank you again to all comments because they have really helped. 

Techiej - thank you so much for sharing your story and I wish you the best of health on your journey.   Good luck with your next doctors appointment!  Hope all goes well. 

AngrySparrow - your journey has touched me as well.

At this point I am going to call the EP to meet with him one more time.   He said to come see him in September after I have had time to make to think but call sooner if I need to.  Looks like I am going to go for it.  It has helped to hear from people who have gone thru this all.

Peace of mind

by pacer16 - 2016-08-14 14:45:05

I got my pacemaker in March of this year.  Out of the blue, totally blacked out, hit my face and head.  Had concussion and fractured bone in face.  Had to have surgery and two plates put in face.  PM was suggested because my injuries were so severe.  No prior problems/symptoms.  Feel no different after, but the peace of mind is SO worth it!  Only use bottom lead 1%, which seems so low, but if didn't have, that 1% could mean life or death!  It's like insurance, you have it and hope you don't need it.  But it is there if you do!!

One more thing...

by Gotrhythm - 2016-08-18 15:31:12

With 17 comments already you hardly need another one, but I do have one thought to add.

My need for a PM seemed to come on suddenly, over just a couple of months, but with the aid of hindsight, I can see I had lots of warnings that something was not quite right. But my symptoms were so intermittment, and unimpressive, that I rarely reported them to the doctor.

When I did report them they were dismissed as anxiety or even out and out panic attacks, which made me even less inclined to discuss them, because I felt like I was making a fuss over nothing.

I'm telling you this becuase, pre-PM I would have told you I had no signs of any heart condition. I thought everybody could feel their heart beating and it was only significant if the heart was pounding. Post-PM, I discovered that the PM had miraculously cured all my "anxiety." My heart didn't thud suddenly, I didn't feel light headed and foggy, I slept though the night as I hadn't for years, and for the first time since I could remember, I couldn't feel my heart beating at rest. In short, I had no idea what the PM would improve until I got it.

I"m not saying I think you should get a PM. Only you can decide that. But I am saying that there may be symptoms that you are discounting, thinking they are unrelated to heart issues.  You are concerned that you might experience no improvement at all if you get a PM. I'm saying that after my PM, I saw improvement that I didn't even know I needed.

One more thing

by confused - 2016-08-18 15:45:05

Thank you so much for your comment.  It has made me feel even better in my decision now!   I am actually at work right now and when I just read your comment I smiled.  

I really liked your comment about sleeping through the night because that would be nice!  Hoping to see that happen also.

I have contacted my EP doctor and will be seeing him to confirm my decision next month and to get everything scheduled.

Again thank you so much for your comment here!

UPDATE***

by confused - 2016-09-26 09:52:17

My surgery has been scheduled for October 12th and I want to thank everyone for their comments here again.  It has really helped.  I am looking forward to feeling better!