Decision Time!

Thank you!

by emmie - 2018-05-21 12:31:09

I was actually thinking about sleep apnea as well, especially since my HR gets so low at night. My brother and mom both have it, but they’re also overweight and that’s likely the cause of it. I’ll request a sleep study, I’ve also asked for a referral to another EP that was recommended. Hopefully both of those will give me peace of mind with whichever decision I make. I look forward to learning more from this group!

Second opinion

by The real Patch - 2018-05-21 14:59:58

whether you have sleep apnea or not, you need a pacemaker if your heart rate is dropping into the 20 bpm range. Your organs are not getting the blood flow they need to sustain life and will slowly deteriorate if not corrected. Still you need to get a second opinion, and the questions you need to ask are what you asked us...will this help

Good luck

Major hospital center

by marylandpm - 2018-05-21 17:09:41

  You don’t give a location. If you are in the US I would go to the best hospital you can get to and check into the ER. If you rate is going into the 20s at night you need to get that fixed. 

Yikes!

by AgentX86 - 2018-05-21 21:51:30

First, IMO, you need a pacemaker.  You're really young but it's not a big deal.  You'll be able to live a full life with a pacemaker.  It won't make you feel worse.

You have a second degree heart block, perhaps moving on to a third degree (complete).  The 27bpm rate you mention sounds  a lot like a ventricular escape beat, rather than normal sinus rhythm.

Speaking as an amateur cardiologist (that's a joke, BTW) it sounds like you're a perfect candidate for a three lead CRT-P pacemaker (AAI mode).  In addition to this group, a web search is in order (you can use the above terms, in addition to other terms used here.  Educate yourself and then find an EP who you can communicate with.  I certainly wouldn't be happy with the answers you've had so far.

Thanks everyone!

by emmie - 2018-05-21 22:16:57

I called my cardiologist today for a referral, I was hoping he would call back today but he didn’t.  With the info you all gave, I’m annoyed that my EP didn’t mention anything. I also wasn’t happy that he only uses one brand of pacer for every patient, it’s always St Jude. I thought that was strange? 

My, My, the member of your happy little group...

by donr - 2018-05-21 22:54:18

...that knows the least gets to make the decision!  Talk about STRESS!  The only thing they say that is common to all is "You need a pacemaker!"  Which kinda makes sense, considering the symptoms you have.  Patch is 1000% correct in that w/ your HR going to 27 at night your body is, indeed, starving for oxygen.  What you need is a CPAP in addition to a PM.  So one EP exclusively uses a St Judes PM - unless you have something really wierd, SJPM's arre perfectly competent to correct the same arrhymias as any of the other well known PM's.  To reiterate - none of the people involved has mentioned a problem that any high quality PM cannot correct, so the decision is NOT out of your field of expertise!  Pick the EP you have the most confidence in - who explains the most, who will sit w/you and trteat your head in addition to your heart.  If he's initially wrong, easwily corrected - go to the next one who then happens to be correct.  BTW:  Matters not what the correct diagnosis is, they all install the same way to correct anything.

Wish you the best in your coming great adventure.

Donr

no decision

by Tracey_E - 2018-05-22 13:19:01

As the others have said, if your rate is in the 20's at night it shouldn't even be up for discussion. Some doctors don't like to do it when we're young but that's just plain stupid, imo. We have a problem and there is a fix, why would they let us be in danger simply because we don't fit the stereotype?? A normal heart rate is 60, so you are 1/3 to 1/2 that when you sleep. That's not borderline by any definition. 

I got my first one at 27, should have had it in my late teens, early 20's at the latest but I had a doctor who wanted to wait because I was young. At the time I was afraid of it and happy to procrastinate, only later did I get resentful of that attitude once I realized that 1) I felt a whole lot better with it and 2) it was doing damage to my body. I'm on my 5th now (all St Judes, btw) and doing great. 

I would not go back to that ep. If a doctor isn't taking serious symptoms seriously, you'll have nothing but problems down the road if something else goes wrong later. 

It's not really a problem if they mainly work with one manufacturer, that'[s common. A pacer is only as good as the programming, so it makes sense to get the one your doctor knows best. There are some differences in them, but there no bad brands out there. 

Thanks again!

by emmie - 2018-05-22 16:11:27

again, thank you all for your responses! I’m hoping they weren’t concerned about my night HR because maybe it doesn’t stay that low for that long? I don’t know for sure, but I do know my cardiologist said it wasn’t an emergency to get me to the EP, everything would be fine to get in when he was available, and my EP wasn’t concerned, so I’m hoping it’s very brief. That helps me sleep at night, anyway haha! I’ve been having some anxiety and difficulty falling asleep out of fear I won’t wake up.  I called my cardiologist again about the referral, hopefully the new EP can help me out. Thanks again, everyone! I’ll keep you updated :)

Hello Emmie

by NiceNiecey - 2018-05-23 05:14:32

Welcome to the Club you didn’t want to join!  But you’ll be glad you did!

I just want to thank and commend you for writing such an excellent description of how you feel physically at times.  You put into words what I couldn’t and it was like reading my own experience!  The feeling that maybe it’s low blood sugar?  That was me too!  I kept eating a bunch of protein hoping it would stop that feeling but, of course, that didn’t work!  It was like I drank a glass of wine really fast.

And when you feel like you’re on the verge of passing out?  They call that “near syncope” and you actually ARE on the verge of fainting.  Don’t ignore that one or drive when you feel like that!

I don’t know what you do for work but not having enough oxygen getting to your brain will really affect it!  Thank goodness my husband and I own our own company but it was very difficult for me to accomplish anything during the time just prior to getting my PM.  In addition, by not knowing I had a problem, my musical theater hobby was basically halted.  I was always one of the lead roles in virtually every play I auditioned for but earned the reputation of having “a line problem” (i.e., Niecey can’t remember her lines; we can’t put her in those roles anymore).  I’ve never been back on stage because I lost my confidence over that.

But I digress . . .  Someone mentioned it above but Mobitz Type 2 can very quickly become Complete heart block.  It happened to me.  Mobitz 2 was my diagnosis when I got my PM.  My cardiologist warned me that it’s not unusual for type 2 to become type 3 and sure enough, somewhere during the first year after PM installation (sounds like I got new flooring!) it did.  Suddenly, I was pacing 100% in both chambers.  I’m glad my PM was already onboard when that happened.

Have you ever awakened suddenly during the night with a big gasp or a crazy rhythm?  If you have, you should RUN to the nearest hospital and get that PM put in.  Do not delay.  You’ve been given a great gift: knowing what you have, and how to fix it.  Waiting can only result in the worst outcome.  

Although I had a difficult transition during the first year, I wish I’d gotten my PM years sooner.  My life would have been much better.

Keep us posted on what happens!

10 Years

by emmie - 2018-05-23 07:51:50

Thank you, Niecey!! I appreciate hearing your experience is so similar to mine and it’s better now! Get back in that theatre!! 

I am really mad at my EP now. I’m mad that I’m afraid to go to sleep at night because he told me I’m fine to wait, and now I have to wait for this referral to a new EP which will take God knows how long. At my last appointment, I asked my EP if there was a possibility I could go into a third degree block and he said I probably had 10 years before I HAD to have a pace maker and I would be fine until then. And to just watch my symptoms. Is this guy really that oblivious? How many comments are here saying that’s not the case? I don’t understand why he is so flippant about it?? Also, with the way he’s explaining things, my husband acts like I just want the pacemaker and I don’t really need it. (Not exactly, but that’s how he makes me feel because he’s just going off what the EP said, which is that it’s my choice if I want one). I’m so frustrated. And scared. I have a trip for work coming up on the 3rd and now I’m scared to go. If the soonest the new EP can get me in is during that trip, I really want to cancel it and go to the EP. 

safety

by Tracey_E - 2018-05-23 12:02:48

I lived with complete (3rd degree) heart block my entire life, so yes, your doctors are correct that it *can* go a long time without having obvious problems. My doctor was the same way, wait until I HAD to have it. You aren't there yet, but that doesn't mean you wouldn't do better with it.  It makes me sad that you are afraid now, I don't think that was anyone's intent. It's to be taken it seriously, yes, and you need the pacer sooner than later, but you should be fine until you get your referral. Don't push it and do anything strenuous. If you feel like you are doing to pass out or it gets worse, go to the ER. That will get things rolling faster. It's important, but it's not urgent. People don't go to sleep with 3rd degree block and not wake up. They get tired, they get dizzy, their organs get stressed, eventually they may pass out but to be really blunt, we don't die from it. 

It might help you sleep better to call them back and ask how long your episodes are in the 20's and what your average is when sleeping. 

Your husband's opinion is not at all surprising. It's instinct to believe the doctor. It's human to not want to think there is something seriously wrong with your spouse, perhaps put his head in the sand when he learns otherwise and cling to the doctor that's saying what he wants to hear, that you are ok. My husband knew from the time he met me that one day I'd need the pacer. He kept ignoring the symptoms as they got worse and had himself convinced I was ok.  When the day came I got it, I think it was harder on him than me. I just wanted to feel better so for me it was a relief, he had to face what he'd been ignoring for so long. 

Tracey

by emmie - 2018-05-23 12:16:24

Thank you! That really does make me feel better. 

My husband told me today that he wants me to do what I think I need, he supports me. I might be projecting on him what I think he’s saying, and that’s not what he’s meant all along. He says he doesn’t see my symptoms and I seem fine, but we have 2 toddlers, I have to seem fine! I don’t get to sit on the couch or sleep all day, I have to get up and “mom”. But he doesn’t hear all the internal thoughts when he says, “let’s go to the park!” 

Im feeling more confident after talking with all of you that a pacemaker will improve my life, I feel like I’ll be making the right decision and I won’t regret it. I have no issue with the appearance, I’m not upset that I’m young, I only fear that it won’t help me or that it will bring on new symptoms that bother me more than my current. I think it’s a matter of having accepted the way I feel as “my normal” and fearing anything else. But I want to feel better, I want “me” back. I want my life for my kids. 

Which reminds me, is this something they will potentially have too? Is there anything I need to do for them? Checkups or whatever, beyond the usual?

kids

by Tracey_E - 2018-05-23 14:55:48

Heart block is not considered to be genetic, more of a random short circuit. The only genetic link they've found is moms with Lupus are more likely to have children with congenital heart block. That means if your mom has Lupus, there's your answer where yours came from but it has no impact on your kids. My cardiologist did a work up on my kids at one point, but more because he was curious than because he expected to find anything. Neither of them has any sign of any heart problems.Talk to the pediatrician, they need to know the change in your health history, but it shouldn't have any impact on your kids. 

Mom face can be pretty convincing. 

Appearance doesn't have to be an issue. Depending on your build, they can put it a little lower and a little deeper, or possibly under the pectoral (that's where mine is) so that the scar is covered by by most tops. Ask to see one when you go to the new EP. You'll be surprised how small they are. Discuss placement in advance. Some doctors think about it automatically but others are more functional and just want to get it in there. 

Rather than be upset because I was paced young, I've always been grateful to have a problem with a fix. Many aren't so lucky. You will either come out of it feeling the same or better, don't stress over other possibilities. My money is on better because a low rate sucks our energy. For me, it happened so gradually that I had no idea how bad I truly felt before, how much I wrote things off to stress or whatever, how much I compensated and told myself I was fine. Then they turned on the pacer and I had a normal heart rate and it was like turning on the flood lights after being in the dark.  And a positive attitude goes a long way towards bouncing back quickly, you've got that along with a supportive husband and kids to keep up with. You will be fine. 

When you read the posts here and other places online, keep in mind that complications look way out of proportion when you scan the posts here. Complications happen in a very small minority of patients. That small number goes looking for answers. The other thousands are out there getting on with their lives without issues.

Re: Inherited Heart Rhythm Disorders

by Gotrhythm - 2018-05-23 15:37:52

There are some rhythm problems like long QT syndrome which are clearly inherited, but although there are many possible causes of heart rhythm disorders, most of the time a specific cause, genetic or otherwise, can't be found. 

There really isn't anything that will prevent your children developing rhythm disorders, but there's no reason to think they are at more risk than others, nor is there any reason to take special care. A heart rhythm disorder--what you have--is not the same thing a heart disease. 

Just do all you can to teach them to eat a healthy diet, high in fruits and vegetables, low in animal fats, and follow a healthy lifestyle. The diseases that are the scourges of our time, obesity, type II diabetes, heart disease, are preventable.