Is it a issue or normal ?
- by Amiejohnson
- 2018-10-14 14:30:03
- Complications
- 1555 views
- 14 comments
I am 40 years old and have been health my hole life no daily meds or any thing and working on average 60 hourrs a week . I went into the er felling faint thinking I was dehydrated . Turns out I have SSS sick sinus syndrome after every test in the book amd ended uo with a 2 lead pacemaker about 8 weeks ago . I felt good after surgery more energy than I have ever had in my life . After about 3 to 4 weeks I started to feel wore out all the time . I was getting small pains in my chest could relate the feeling to putting a 9v battery on my toung , my heart was racing mostly when I sleep . so mu dr pit me on metoprolol er 25mg 1 time a day. So after 10 days I have noticed I am verry tired all the time even worse than before the meds . I feel like I am having a hard time breathing like a ruberband around my lungs . but my o2 leverls are 97 to 99 % my bp is low but normal for me even before 97/61 wjth a heart rate of 69 . but I have a slow pounding in my chest at times will take my breath . I will feel hot but not have a temp . I have not been able to go back to work yet I can not walktfare with out my cest racing and my jeart pounding then I have to go to bed because I cam keep my eyes open. I have gained 15lbs since starting the beta blocker . I am very unhappy with the fact I feel like I can not function in life any more . I am only 40 I still have 2 out of 4 kids still in high school and I have a 2 year old grand son I cant play with like I should be able to . I cant help bit sit and think what am I doing wrong is it all in my head because my dr says the pacemaker is working good from what the readings on there end are saying I am only useing it 30% of the time . any advice as to what I am doing wrong or what I should be asking to be done . I cant wrap my head around working 60 a week to not being able to walk around a small block over night . Helo
14 Comments
SSS, Pacemaker, Metoprolol, and tired
by AgentX86 - 2018-10-14 16:30:59
Hi Amie, and welcome to the club you didn't want to join
If your only heart problem is SSS, it's unclear why you have a dual-chamber pacemaker. Usually, only a single atrial lead is necessary to "fix" SSS. I'd be asking my cardiologist or EP, what's up with that. You need to understand what's going on.
BobTHom is right on the money with his comments about metoprolol. I've been on it for about 12 years, in various doses (from 25mg/day to 200mg/day). I tolerate it better than many but it still makes me very tired (a cat nap in the middle of a business meeting is quite embarrassing). However, it's not clear which end of the cart the horse is on, here. It may also be that you need some adjustments to your pacemaker. With SSS, you should be feeling a whole lot better, since you got your pacemaker - not worse.
Dual v single chamber PM for SSS
by IAN MC - 2018-10-15 11:21:28
Hi Amie Agent is wrong to question why you have a dual chamber PM for Sick Sinus Syndrome. In fact the great majority of PM's now fitted for SSS ( even with no evidence of AV block ) are dual lead.
Published studies have shown that it is far more cost-effective to fit a dual-lead in the first place to avoid the possible need for another operation to fit a second lead eventually. Not to mention the trauma of having to fit a second lead.
Here in the UK , the government recommendation is to fit dual lead PMs for SSS
I have SSS and have a dual lead PM..... this is normal !
You need to spell out to your Dr that you were fine at first but SOMETHING CHANGED around 3 to 4 weeks after implant. Ask the Dr to find out exactly what that " something" was.
Best of luck
Ian
Single vs. dual lead
by AgentX86 - 2018-10-15 12:29:33
If it's a good idea to anticipate heart block and fit a second lead, why is it not a good idea to also fit the third? By your reasoning all PM implants should be CRT. Then, if you're fitting pacemakers because something might change, why are the all not ICDs, even if the function isn't being used?
Agent
by IAN MC - 2018-10-15 12:48:22
Think about it ! You will be asking why everyone is not fitted with colostomy bags next.
I was not stating my reasoning, I was describing current clinical practice which is based on the LIKELIHOOD of an SSS patient needing a 2nd lead in the future.
Ian
IAN
by AgentX86 - 2018-10-15 14:00:36
No, that's precisely what you're advocating. You're saying that anyone who needs a single lead pacemaker should get a dual, just in case.I was _trying_ to point out the absurdity of that position.
Actually, there is more reason to add a third lead for someone with heart block than the second lead in the case of SSS.
agentx
by Tracey_E - 2018-10-15 17:22:09
The reason for not automatically fitting someone with a 3rd lead who either isn't afib/av node ablation or reduced EF is because there is absolutely ZERO evidence it makes a difference. Don showed you the study. It's appropriate for you. Two leads is standard for 99% of us. Almost no one does a single lead anymore because the second lead may eventually be used, and it provides information. Almost no one starts off with a 3rd lead unless there are other factors involved. Please stop telling people their doctors gave them the wrong device. You are not a doctor, stop second guessing other people's doctors when you only know a sliver of the facts.
Amie
by Tracey_E - 2018-10-15 17:25:21
Some people do great on metoprolol, some of us are utterly miserable. It takes 4-6 weeks on it to stop feeling the side effects. I made it 3 1/2 weeks, was so dizzy I tripped over nothing in my kitchen and broke my foot, threw the bottle away and refused to take it again. I took atenolol next, still felt tired a lot but it was a million times better than metoprolol for me.
Metoprolol will lower bp. Does your doctor know how low your bp is?? If not, go get on the phone and tell them. Like, now.
It's possible for the pacer to be working correctly but not working correctly for YOU. Working correctly means the leads are in place and it's pacing. Settings may need to be fine tuned. Meds may need to be changed. Something else may be going on. If your doctor isn't listening,it's time to find another doctor. What you are describing is not normal. Good luck.
Metoprolol
by LondonAndy - 2018-10-15 19:50:51
I agree: I think basically all beta blockers make you tired. I started on Metoprolol, but am currently on Nebivolol which affects me less. It's worth seeing if you can ask your doc to prescribe some different ones for a while and see which suits you best.
Tracy_E
by AgentX86 - 2018-10-15 22:39:41
Stop lying. I did not tell anyone that their doctor gave them the wrong device. I questioned the choice and suggested that perhaps more information would be good. And you're wrong. Single-lead PMs are not dead.
I could go on, but that's enough for now.
Agentx
by Tracey_E - 2018-10-16 07:37:48
1. I didn't say single leads were gone, I said they were rare. Which they are.
2. How many people have you told should have had 3 lead instead of 2?? How many times have you called someone doctor a quack or said they should lose their license? That's telling someone their doctor gave them the wrong advice.
3. Attacks against another member are violation of the terms of service. I'm not going to put my moderator hat on and delete you since it's aimed at me but if you talk to any other member like this, know that it's going to be deleted. You don't have to like me. You don't have to agree with me. But you have to be kind. Please dial it back.
Hi Amie
by Janenotarzan - 2018-10-17 09:48:51
I'm very sorry to hear of your struggles. I also have SSS and had a dual lead Medtronic PM implanted Feb of 2015. I rarely even think about having it anymore, and it has always functioned perfectly (knock on wood.) I'm grateful to never worry about a 2nd cardiac arrest from Bradycardia. Like you, though, I also suffer from Tachycardia, which the pacemaker can't help. So, I take Metoprolol 25 mg twice daily for rate control and Flecainide 75 mg for rhythm control. I hate the fatigue from these meds, but I prefer taking them to going into AFIB or Aflutter or any tachycardia. The symptoms you describe sound very much like those I get from Tachycardias. I will feel shortness of breath, but o2 fine, a feeling like my heart is heavy and something constricts so I can't ever take a deep enough breath, fatigue in my leg and arm muscles, exhausted sleepiness, pounding heart with any exertion and off and on all night, and the flushing (hot) and occasionally chills with dizziness, and nausea. All this happens because tachycardias cause the heart function to diminish. I had an ablation in 1994 for a super-fast arrythmia, then 2 touch-ups in 1996 and 97. I thought I was cured for life. Around 5 yrs ago, I thought I was having low BP or low blood sugar issues. Turns out I had been in AFIB for "a long time" without knowing it, and was in CHF with a 4x enlarged left ventricle. After a cardioversion and meds, the CHF went away and the heart shrunk back down, but it took over a year. Then another 6 months for the ejection fraction (measurement of heart function) to return to normal range. Then came the SSS, Bradycardia, and a cardiac arrest, and a 6 mo recovery with cardiac rehab. Then, after my PM implant, I whined and complained about feeling like my meds or the PM were holding me back and causing me to not "go" like I wanted to. I begged my EP to go off the meds or have him "bump up" my PM somehow. My EP explained that it was my heart still weakened from the SSS and tachy/brady that kept it from functioning full force so I could "go" full speed again, not the meds or PM. He explained that the meds were protection to allow my heart to recover. I hadn't understood that I had enlargement and lowered function again and needed to be patient and let healing happen. It did. I have had AFIB break through my meds. Sometimes I convert on my own, sometimes with higher doses of meds, and sometimes with Cardioversion. If it goes on long enough before conversion I will have all those nasty symptoms. But the rest of the time I am symptom free except for the hopping and skipping from premature beats, which is my new permanent norm. I work 50-60 hrs weekly in a physically demanding job at 55 yrs old and have a happy life. I have faith you will get where you want to be again also.
I'm thinking that even though your PM may be working like a champ, you could have some cardiomyopathy or reduced heart function or enlargement because of the SSS and arrythmias. Or you could have plumbing issues in your heart in addition to the electrical issues. It would be wise, in my opinion, to ask your Dr, through the nurse even, about your overall heart condition and possible causes of your symptoms. You said there were many tests run, so hopefully they'll have ready answers for you. Since you had no idea you had a heart issue, your recent weeks have likely been quite overwhelming for you, with a lot to learn and accept. My condolences to you. I wish you speedy answers, a positive outlook and steady healing.
~Jane
Similar symptoms
by Samianhill - 2018-10-25 23:22:14
Hi Amie
Im having many similar symptoms of yours. I had no idea of any heart issues and then on 9/30 went into ventricular tachycardia. I now have an ICD but they still haven’t determined why the tachycardia happened. All tests have been inconclusive.
They put me on metropolol (25 mg twice a day) and I’m very tired all the time. I’ve been having off and on “shocks” in my chest. It is not my unit going off. Someone suggested perhaps nerve endings but at this point I have no idea. I also feel feverish with no fever. Chest also felt heavy when I would lie down but ok when sitting up. Sometimes feels tight when I try to take a deep inhale. I wish I could get some answers as it’s causing me a lot of anxiety. I’m trying to tell myself that it’s just part of the healing process and adjustment to medication. Hope we both feel better and get answers soon
Taled with Dr.
by Amiejohnson - 2018-10-26 12:52:50
I talked with my cardiologist he cut the beta blocker in half . It has helped with the tightness in my lungs . I am not as slugesh during the day bit still feels like I am draging concrete when moving . The nerve endings healing I now believe is the source of the shocks in my chest. The swealing in my body was down a lot with in 48 hours of citting back the beta blocker. My heart is still racing around 145 to 160 when I am sleeping and is happing more with less meds . So a lot of improvements since the change. Now with all that said the pains in my chest and back have started again . I had a Ultrasound of my heart and it showed the plumbing is good hardly any build up at all . ( Dr was impressed because I had been a smoker for close to 30 years and eat red meats daily ). I am not sure were we go from here but it has been sujested that there could be something else going on that we have not found yet some were else in the body so I have asked for a full body MRI . now waiting for that. I am waiting for them to look at me and say it is all in my head because that is what the U.S is good for when they cant find a out right reason easly . I know the shorness in breath is not in my head .I am the kind of person who can deal great with most pain and keep going . It takes a lot for me to even say I dont feel good . I understand that it is a puzzle and can take time to find the missing pieces but I am persistent and will not give up on my self . I plan on beimg around for a long time to come !
You know you're wired when...
You have a high-tech ticker.
Member Quotes
I've seen many posts about people being concerned about exercise after having a device so thought I would let you know that yesterday I raced my first marathon since having my pacemaker fitted in fall 2004.
Beta blockers make you tired.....
by BOBTHOM - 2018-10-14 14:39:49
There are several different beta blockers and everyone reacts differently to them. I have tried coreg which makes me tired but also gives me the runs. I'm on metropolol now but still makes me very tired. Even the extended release makes me take a nap within 2 hours of taking it. So I take 1/2 around 11am and then take an afternoon nap after lunch, then the other 1/2 before bed. For the weight gain, ask your doctor if a diuretic might help. Otherwise, being thrown into a different life is hard on everyone no matter the age. We all had different expectations for the "golden years". Learn as much as you can about your illness. Learn about the treatment options. Depeninding on your condition and type of device they implanted there may be some settings that could be tweaked so that you feel better. The doctors always tell me things are in my head, I've fired alot of doctors, but the real doctors will listen to you and provide some options. Keep pushing forward as best you can and remember you are your own advocate! Learn, read, research, and speak up!
Good luck!