Trying to get through these rough times

Hello, I wanted to share some thoughts,because recently I have felt so sad with my pacemaker and although grateful for science, I seem to be crying everyday you see I regret not to have asked for a second opinion. I had no health problems except passing out. Eight years ago I passed out on a Summer afternoon after having a Dejavu moment.  and they said it was dehydration. Then it happened 6 yrs later same thing and I saw a neurologist he said it was syncope vasel vagal nerve. Then the Dejavu happened closer 4yrs then 3 yrs and 2 and 1 and 6 months and 2 months currently in September. I would loose conscious for maybe 3 min. And after I felt so tired and sleepy and week. Felt like my tongue was pulled back. I am 48 and neuro referred me to Cardio. In April 2020 had episode then neuro referred me to wear A heart holter for 48 hours. It came back with abnormal supraventrical bpm 69/ 100. No one called me from Kaiser so continued working virtual work until I got another one Oct. 16 2020 the cardio told me to place a Lupe recorder in Hope's of catching problem. Just 2 weeks  had passed when I got another episode after dinner..all with Dejavu feeling and out. I went To ER because I felt really odd from my body. They released me. DOC. said your so healthy and your heart is 73 so need to follow up with neuro. Got home got another one lying down watching news. I pressed my heart monitor during episode at ER no one saw and episode lying down and episode after dinner..all just hours apart.  The Cardio leaves me a message. On my phone last week and says Hi I am Dr. T and your heart stopped twice for 17 sec. And 15  get to ER quickly. .  I heard and panicked. Cried and my family was scared with Covid # s high and scared with no other info. I now have had a biotronik PC implanted and am feeling very depressed, if anyone has any advice on how to get through this difficult time I'd greatly appreciate it. 


11 Comments

It will get better

by Gemita - 2020-12-24 07:35:54

Hello Chatterbox, your history sounds all too familiar.  I too suffer from syncope, pausing of my heart and heart rhythm problems, at least I did before my pacemaker implant.

Try not to feel downhearted.  You now have the protection you needed for a long time to keep you safe.  Clearly those long pauses were triggering many of your episodes of syncope and this will be helped now by your pacemaker.

There are many different types of syncope.  For example one of my causes of syncope is Swallowing, yes swallowing.  They call it Swallow Syncope.  When I swallow sometimes my throat muscles do not always work properly and this can cause syncope during mealtimes.  I also get other forms of syncope and I am currently seeing a neurologist. 

There is a lot we can do to help ourselves and you have taken the first, most important step - a pacemaker.  Medication and other treatments may be necessary too but have confidence that your pacemaker may just be enough to help you gain confidence and live a normal life.

My neurologist told me about the importance of drinking plenty of water (dehydration can quickly cause syncope for me), as well as doing muscle-tensing exercises (like squeezing a rubber ball, tensing leg, arm muscles) if I come over faint.  These exercises can help circulation by reducing blood vessel dilation.  Your neurologist/cardiologist should be able to work out a safe programme for you to follow.  It is often the pooling of blood in the legs that can trigger a syncope event and muscle tensing exercises can help.

Because vasovagal syncope is usually accompanied by a sudden drop in heart rate, by keeping your pacemaker minimum heart rate set at a steady fixed level, your pacemaker will undoubtedly help you to avoid sudden falls in heart rate causing syncope. Extra fluids (water) will help to keep your blood pressure stable and up, since blood pressure falls can trigger syncope too.  While the pacemaker can prevent heart rate falls, it cannot control blood pressure falls, but hopefully your doctors can work out a plan to prevent this from happening. 

I hope you will soon have the confidence to live a normal life again.  My quality of life has improved with a pacemaker and hopefully yours will too.  It will take a little while for you and your heart to settle with your new device.  I would allow at least 3 months to heal and to manage any symptoms.  Christmas is a time of heightened emotions and no doubt you and your family are feeling this acutely right now, but it will get better, I am confident of that.  I send my very best wishes to you for a speedy recovery 

You have to choose to focus on things ahead

by crustyg - 2020-12-24 07:37:57

Folk who really know me would laugh at me being Mr Positive (always used to be glass-half-empty).  But thanks to a *lot* of support over the last 50years, I can honestly say that I'm an Expert-by-Experience.

You have to choose to fill your waking thoughts with positive plans, goals, exercise, trips, family and friends.  It's a conscious process, it's not easy and it takes practice to become good at it.  When the days are short, the weather foul, you have to say - the days are getting longer again (they are now!), that the sun will shine again (it's the first sun I've seen for about a week), and that you will be able to go outside (just had two weeks of quarantine).

Talk/WhatsApp/Zoom with friends, family, with the postal folk, neighbours.  I do, and probably merit a handle like yours.  Recall positive times, stop watching the news (it's now banned in our household, and my rubber brick for throwing at the TV has been confiscated), and make plans for positive things.  We had a lot of fun last Spring looking for ever better bluebell walks (best spring weather for 50years here), so that's something to look forward to.

Even your PM should be seen as a blessing: you now have a gadget with you at all times that might well save your life.  And although we can agree with Mae West's brilliant insight - "Growing old is not for sissies," it's a *lot* better than the alternative.  We choose our outlook each morning when we rise from bed.  I'm still working on the practice bit....

Best wishes, and Season's Greetings.

second opinion

by Tracey_E - 2020-12-24 12:03:27

17 second pause?!?! Do you have any idea  how lucky you were that you woke up from that? You could get 100 opinions and they will all tell you the same thing. Please don't waste energy doubting that you needed it or that it was too hasty. 

What the doctors don't tell us is emotional  healing can be harder than the physical healing. It's ok to mourn and take some time to wrap your head around it, to throw that pity party, but at some point we have to make a decision to focus on the bright side. I've always been grateful to live in a time where there is a cure for my heart problems. Had I been born the same year as my mom, I would not have seen my 30th birthday. Do I like knowing my heart runs on a battery? Not particularly, no one chooses this. But I truly believe that every day is a gift and I am blessed to have a condition with a relatively easy fix. 

One thing that helped me a lot was learning all about how my pacer worked and my condition. I can accept what I can understand. Don't be shy about asking questions. Right now I'm sure it seems so huge and overwhelming, but most of us reach a point where we barely give it a thought. As we heal and get back to normal, as we feel good again, it gets easier and easier to trust the pacer to do its job and to put it out of our minds. I hope you find that point sooner than later. Vent all you like, you'll find a lot of people here who have been in the same boat and are happy to help you through it. 

"I had no health problems except passing out"

by AgentX86 - 2020-12-24 12:19:51

That says it all right there.  The "except" part is the difference between life and death. You've listed abiut ten too many of these syncope events.  One can kill, even if the cause didn't.  If you were at the top of a set of stairs... Driving...  Any number of places could have been deadly and not only for you!

Seventeen seconds is huge.  When you have a pause or systole, your heart stops (as you know) and it relies on chaos to restart.  At 17 seconds it could have easily been twice that, or twice that (the same as forever). I got that same call at 3:00AM and mine was half yours.  Yes, it scared the s... out of me.  Fortunately, I already had an appointment with my EP at 9:00 that morning so decided to camp out in his office instead of going to the ER..

From here, you look back for three seconds to see just how lucky you are.  Then, turn your head around and look forward to what you now have in front of you.  Family and a normal life.  You'll all but forget the pacemaker sooner than you think.

BTW, hospitals in the US are some of the safest places in the world right now.  They know how to handle covid and keep infected people far from others, with separate air handling.  In the last ten months they've learned an incredible amount about it.  They also know about asystoles and SCA.

Bottom line:  You're one lucky person.  Don't forget that.  So what if you have a lump of metal in your chest.  It doesn't change who you are, if you don't let it.

 

2nd Opinion

by Grateful Heart - 2020-12-24 12:49:47

I was 50 when I was told I needed an CRT-D (cardiac resynchronization therapy with a defibrillator).  I thought they were wrong.  I was over weight and out of breath working short a distance but I never passed  out.  I went for a 2nd opinion and that doctor confirmed it.  Between the tests you've had and your heart pausing for that long, you can consider that your 2nd opinion really so rest easy.

I also thought I was doomed.  I was scared my defib would go off at any time.  That was 12 years ago and so far my defib has never fired. 

I didn't know about this site until 2 years after my first device was implanted.  I also didn't know anyone who had a device.  I have had much improvement from having this device along  with losing some weight, exercise and a healthy diet.  I'm on my 2nd one now and I do believe I wouldn't still be here without it.

The key was learning about my condition and device.  Knowledge is power!!  It will help ease your mind.  So take a deep breath, try and change your mindset and enjoy your family.  We are lucky to still be here, not everyone has a fix for their medical condtions.  Enjoy your family, joy and laughter is truly the best medicine.

Grateful Heart 

Just a comment.

by Pharnowa - 2020-12-24 15:33:14

Maybe the only thing we have in common is I have a Biotronik also. The other posters share much more relevant cardiac background.

I do know I've had crushing heartbreak and I've learned that living in gratitude and helping others is a balm for the soul.

There are others all around who live with so many kinds of pain and loss. I'm sincerely not minimizing your pain and sense of loss. It's real!  But, for example, imagine if you couldn:t have had the healthcare you had.  Imagine if you didn't have food to help your body recover. Imagine if you hadn't recovered from your episodes, being either dead or severely impaired. 

I see you as extremely fortunate to have survived until they diagnosed and treated you. For me, that good fortune imparts a responsibility to use that extraordinary gift of a second chance. 

Best to you!

 

You're so fortunate!

by amanda_shanti - 2020-12-25 03:06:18

I'm still a newbie to this forum and the cardio matters, but based on what you mentioned, I would say you're very fortunate! Heart stop beating for 15-17 sec, not once but twice, it's indeed a serious matter and you won't know how long it stops next time. It could be worse by time! So, a pacemaker implantation seems essential to ensure your heart won't stop beating again. Think like this way, a pacemaker is a wonderful gift to you.

I remeber my cardiologist told me in one of my consultation session, passing out is very danger, you don't know when and where it will happen. What happen if you're passing out when you're driving? or walking down the stairs? It may brings you serious injury or even worse...

My doctor also said if the situation is getting worse, all it needs is 3 mins. When the heart stop beating for 3 mins, the lack of blood flow to the entire brain can lead to progessively worsening brain injury.

Fortunately, you now have your pacemaker to protect you from all the unexpected episode.

I also had a Biotronik pacemaker implanted. It happened only one and a half month ago and it's completely out of blue. I'm 43 and consider myself a quite healthy person. Never faint or passing out. Only feeling mild light-headed sometimes since a year ago and it's not that frequently either. Doing gym exersices and yoga 4-5 times a week. Not smoking, only have a couple of drinks occasionally and with healthy eating habits. So, imagine how shocked I was when I found out I have 3rd degrees (complete) heart block and need a pacemaker. When my doctor told me that a natural "back-up" system in the ventricles is now taking over but my heart beat rate will continue to drop evantually when I get older and older... I broke down in front of the doctor. 

Everything happened so quick, I felt so overwhelming, sad and depressing like you do. I cried often when I was in the hospital (especially when I saw my heart beat rate keep dropping and down to 36!), even now I shed a tear sometimes in the late night when I recall what had happened. But, I'm getting better and better, because now I know I'm lucky to discover my heart condition before it's too late. I'm fortunate that I never faint and injury myself.

It sounds very cliché, but so true... be positive! Think all the good things after implantation and be friend with your pacemaker. 

Hope you getting better soon and Merry Christmas ;)  

    

Control what you can

by Keithwhelpley - 2020-12-26 22:35:17

We all understand the emotional part of dealing with a pm -/ especially in the beginning.  I couldn't sit still so began researching everything about my condition and the PM/iCD. There is very little I don't know about MY situation. 
 

The second empowering thing is totally rebuilding my daily diet to be mostly Whole Foods with supplements. Magnesium is key for cardiac health. I advise everyone to take magnesium. 

In same boat

by Gideon - 2020-12-29 10:31:52

Hi Chatterbox, I know exactly how you feel. My story and age are pretty much the same - I even have the same type of PM. Although your thoughts and doubts are perfectly normal, I am convinced that the PM was necessary to save your life. I got my PM mid October and I am struggling through the same thoughts. I think we just need some time to get used to the idea of actually needing a PM (hard to believe - I know). All of the best, Gideon 

its OK that you're not OK

by cyborg_manifested - 2020-12-29 13:03:42

Hey Chatterbox, I feel you. I have a very different story but am just a week and a half into life with a device. Showering and getting dressed - when I can see and feel the device most clearly - is the most emotional part of my day each day. I see all this encouragement from this community and I appreciate it deeply, it's helpful to be connected to others who have had similar journeys. And it's also important to acknowledge and accept the very real grief that is a part of this journey. It's normal to feel grief. And grief and gratitude can live together. 

A friend recently recommended the book "its OK that you're not OK" - a book on grief that has been helpful to me in this time. (its mostly about losing a loved one, but it also discusses physical traumatic events/changes/accidents/etc). And of course - there is always therapy...honestly, I really think therapy need to be a part of the full care plan for anyone going through this - to help navigate the anxiety of the build up, to the processing of one's health, and adjusting to life with the device. Just know that it's so so normal. 

I hope that you are able to find support in friends, family, community in whatever form that takes for you.

 

I’m struggling too...

by Hiking Again - 2021-01-03 23:51:59

I just got my pacemaker on Dec. 7. I was not prepared for how hard this would be emotionally. We discovered I have second degree heart block when we bought a treadmill. When my heart rate hits 120 bpm when I exercise, it suddenly drops to the low 70s in a matter of seconds. I mentioned it to my husband's cardiologist. When I did the treadmill test in his office, it scared the nurse! It all happened so fast. I am trying to be thankful for this life saving device but a big part of me feels like "how did this happen?!?" I've always had a low heart rate, low blood pressure, dizzy, tired. But my symptoms worsened in the last few months. Even going upstairs would leave me winded. I was startled to learn I needed a pacemaker, but it sounded like such an easy, practical fix. The reality of AV Block is hitting me hard. I look at the outline of the pacer, I think about the fact that a pm is keeping me alive, and I get so sad. I am slowly getting back on the hiking trails. I'm trying to focus on the blessing that the pacemaker is. I thank God for His protection. But it's hard. Really hard. I am so thankful for this forum!!

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