Struggling with recovery

Hello everyone,

I’m kinda struggling with my recovery after having a pacemaker fitted January 31st.

Some background info for you. I have had blackouts on and off since I was 7, I’m 31 now, doctors had always chalked it up as just something I do. Following a bad blackout which put me in A&E with concussion doctors decided to run some tests and they discovered I had vasovagal syncope. They couldn’t work out a treatment plan for me but I was still having faints and so in October 2018 I had an insertable loop recorder fitted. On January 26th I had a blackout which I didn’t come round from as I normally would. I got checked out at hospital, who cleared me and I went home. The next morning the hospital that had put my IRL rang me to say I had to go back to my local hospital immediately. It turns out during that blackout my heart stopped for 29 seconds! I was admitted and eventually transferred to the heart hospital and my pacemaker was successfully fitted.

Since then I’ve been struggling with my recovery. Everyone told me how much better I would feel after my pacemaker was fitted and how I would bounce back! But I’m not. I’m still in some pain both where my pacemaker was fitted and also where they took my ILR out. My pacemaker is pacing in my chest which feels horrible and is freaking me out. I was told it can be normal and that it is settling in but is still doing it now. It’s painful when it does and is waking me up in the night. I also can’t get over the fact my heart stopped for that long! It’s been an emotional time and I just can’t seem to get my head around it all!

Please reassure me that these feelings are normal. Did anyone else have these pacing episodes and how long for? How long before you began to feel “normal” again? 

 

 


8 Comments

Recovery

by Tem - 2019-02-11 00:35:57

Swangirl is right. You have experienced significant trauma which takes time to recover from. I am only just coming to grips with it all after 6 weeks. I still have my moments + know it will still take longer for me to fully recover. My first 10 days were terrible with frequent nocturnal panic attacks, but that all slowly settled. Try to get into a regular routine of exercise. Just walking as far as you can is very beneficial. If to cold outside walk laps in a heated pool if available. The pain will subside. At times it is aggravated because we move around in our sleep, or twist a certain way during the day pulling on injured tissue. If sleeping becomes a real issue try a muscle relaxant like Valium for short term. There are other drugs of an anti-depressant variety which may also be beneficial over the short term whilst you are healing. Reassuring yourself that everything will be ok, + that this is only temporary, + that it is common for recipients of pacemakers to experience what you describe, will help with your recovery. Hang in there + best wishes.

Thanks

by Siren137 - 2019-02-11 11:52:06

Thanks everyone for your lovely comments. I guess I am being a little hard on myself. Being a normally fit and healthy 31 year old I just assumed this wouldn't be too hard to get over but I think I just need more time. 

I'm going back to the hospital that fitted my pacemaker on Friday for them to follow up on the the weird pacing sensation that I've been experiencing so hopefully I will get some answers there. I'm also going to go see my GP and see if I can be signed off for another week as I don't feel right going back to work and so I'm going to listen to myself and ask for more time to recover.  

I'm lucky that I have a very supportive partner and family, who have all been looking after me and have been telling me to go easy on myself. I think sometimes it hard for me to do so as I've always been that way. This is a major event in my life and I need to allow myself to feel the way I feel without giving myself a hard time.

Thanks again for the advice, I love that I have found this club to share my feelings with! x

you are not alone

by dwelch - 2019-02-12 01:29:59

You are not alone.

There are generally two types of folks at this site,  the folks that are about to have a pacer and are worried in some sense of the word.  And folks that have them.  The folks with them have all been through not just the physical but the mental.  The mental unfortunately lasts longer than the physical.  You are still barely into the physical recovery, for some folks it takes many weeks and this is your first device (I am on my fifth) so this is your first recovery and might take longer than the next ones.

I quite simply would not be here without these devices.  Period, end of story.  Would not have been able to raise a child (she just went off to college last fall), might not have really gotten to see the internet much less sites like this, much less the community that we have here.  I started this journey solo, really was between one and two decades before I found this site and was able to interface with other pacer patients and share stories.

The cardiologists are primarily focused on the physical, what got me through the mental is not what will get you or others most likely we all have our own journey, which in some ways is unique to each of us and in others common.  We all have the surgery we all have the recovery we all read the stupid warning signs on toothbrushes and coffee makers that didnt used to apply to us but now do.  (even though those are lawyers protecting themselves from frivilous lawsuits, for products that dont put us at risk)  Even on pacer number five there is the occasional, hmm that was strange is that my pacer is it working right moments, then you LITERALLY forget you have it again.  Well its like a belly button or a toe, its a part of your body that you know you have, but you dont think about it until you stub it on a table leg, and then you think about it a lot.  But that passes and you forget again. 

This will happen for you as well.  No worries.

As far as I am concerned you won the lottery here.  It wasnt a bad thing that you stopped for so many seconds it was the best thing that could happen that you were stopped for so many seconds...while being monitored.  If they had not caught that on the monitor, THEN you would have something to worry about.  Now you dont.

I hope you got that extra week off work

Thanks dwelch

by Siren137 - 2019-02-12 07:59:43

Thanks dwelch, those are some lovely thing you have said. 

I'm getting there, slowly. Yesterday evening was the first time I felt like me again, so thats a start. I still am finding the events of the last couple of weeks kinda crazy, and am still getting my head around it, but I can feel it processing more and more as time goes on. I'm still in some physical pain as well but I do see it improving too so hopefully the road to recovery is a little more travelled than when I first messaged on here.

I will keep you all updated on how things go as I find it very theraputic to talk on this forum and your words have helped me very much!    

Vasovagal Syncope is Different

by Gotrhythm - 2019-02-12 15:20:54

Here's something you might not have been told. Vasovagal syncope sometimes called neurocardiogenic syncope doesn't have the same cause as most other heart rhythm problems that need a pacemaker.

Most people with pacemakers have a heart that doesn't beat when it should because something is wrong with the electrical system of the heart. A pacemaker substitutes for the faulty wiring and makes the heart beat when it should and the way it should. They feel a greart deal better when they get a pacemaker. 

On the other hand, many people with vasovagal syncope have perfectly normal hearts with a perfectly normal electrical system. They don't have a "heart problem" at all. The problem is that their sympathetic nervous system has a faulty response to fainting, and sometimes fainting stops the heart. They might not feel any different at all once they get a pacemaker.

People with rhythm or eletrical issues have to have a pacemaker to function. Their pacemakers are actively working most or all of the time. But for people with VVS the pacemaker is more like a parachute. It doesn't do anything, it's just something you wear--just in case you need it. 

Most of the time, your pacemaker is not "doing" anything. It's just watching. It has been set to "kick in" only when your heart rate drops below a certain number, which in your case probably doesn't happen except at the onset of a faint.

There's a good news/bad news part to this story. The good news: a pacemaker will keep your heart from stopping during a fainting spell. The bad news: a pacemaker will not keep all fainting spells from happening. A pacemaker does not fix the vasovagal syncope.

You've been through a lot recently. I'm glad to see from your recent replies that you are feeling better. Once you're healed, having a pacemaker in all likelihood will make very little difference in terms of how you feel. Knowing that your heart won't stop, on the other hand, that should be very reassuring.

Adjusting

by DriverMama - 2019-02-13 00:53:06

Hi, Siren 137,

Hang in there. Healing, improvement, takes time. You will settle in & find a new normal.

The first time I fainted I was 14. Back then it was considered part of being a “teenage girl”. I found that keeping my stomach full also kept the fainting away. So I gained weight over the years. I could also lose weight, but I’d get light-headed & weak. Again I was accused of “being female”. So I accepted the added weight, no longer fainted, & the nay sayers were quiet.

Nov 8, 2018. My right cheek went numb & my smile was crooked. Hospital testing found several issues with my heart, and a loop recorder was placed Nov 10, 2018.

Two 5 second pauses were recorded, so my pacemaker was placed on Jan 30, 2019 and the loop recorder was removed.

I’ve had a challenging time recovering also. I was very active, walking at least 10K steps daily. Keeping a decent house. Enjoying life with my husband & caring for our adult USMC son who is 100% disabled after being deployed in Iraq.

The biggest adjustment for me after pacemaker surgery has been my attitude. I was expecting the recovery to be like the loop recorder. (That just set me up for a more difficult attitude recovery.) Now, I can see that I was in denial by comparing the recovery from a capsule under my skin (Loop recorder) to a device with wires placed into my heart. 

My heart rhythm is all over the place. Sometimes very slow. Sometimes very fast. 

Perhaps it is my specific condition (or my age), but my cardiologist has told me that for the first 6 months, my heart needs to fully heal from the surgery before my pacemaker is fully activated. In the meantime, it will activate but only for a life-saving event. And should that happen, I will definitely feel the “adjustment”. 

I’m praying that your body has calmed down a bit & is adjusting better.

29 with Vasovagal Syncope

by beeplus - 2019-02-15 23:48:04

I just turned 29 on the 5th, and I'm scheduled for my pacemaker insertion on Feb 22. I too have had vasovagal syncope pretty much my whole life. Any time I have gone to the hospital for it, my heart is completely normal. 

 

I started working for a heart monitoring company in April of last year, and have had two spells in that time. I put on one of our heart monitors for a total of 55 days and caught a heart block brought on by brushing my teeth (vagally mediated). The worst of it was a 5.8 second pause. 

 

Being a week out, I'm starting to get a little nervous about recovery time. I am trying really hard to remain realistic, but I have seen a lot of people do really well after pacemakers. I feel like, being 40 years younger than them ought to give me an edge, right?

 

 

 

 

Here for you

by angkbee58 - 2019-03-23 22:46:26


I am sorry to hear you are struggling with your recovery. You have been through a very traumatic experience with your situation.

Don't be too hard on yourself. After all, you are an otherwise healthy adult who now has a pacemaker. It is mentally a huge adjustment for anyone who has to get a pacemaker or difibrillator. This is a huge change for anyone.

For me, I wasn't healthy prior to getting told I needed one. I was obese, had high blood pressure, high cholesterol and lived a sedentary life. Mentally, I was so scared and nervous, after hearing I needed one, that I thought I was going to have a serious panic attack several times.

The saying time heals really does apply to the situation. I know it sounds corny, but it sure has been true for me after getting a pacemaker. The first 2 weeks were the worst because I was in a lot of pain. Everyone has their own experience though. Some people have no pain or no discomfort. I wasn't like that.

I am in my 7th week after my pacemaker and I still worry a little about things going wrong with it. However, I do feel more energetic and have joined a gym.

Prior to my pacemaker, I lost 50 pounds and began living a healthier lifestyle. I continue to live a healthy lifestyle and exercise every day. I also try to think positive.

Nobody wants a pacemaker, but here we are making the best of it. You should feel better soon. It will get better. Things just feel weird at first during those first weeks.

You will have strange sensations and dull aches too. We all have had them. They don't tell you much information about your procedure. It's the after surgery that really throws you for a loop. Every week I learn something new about pacemakers.

This site has been so helpful for my recovery. I am so thankful we have a place to go to talk to others just like us.

I wish you the best in your recovery. Don't hesitate to talk to us.

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