Health After Implant

I've had my PM for 2 months now and have not noticed any improvement in my health. I had been having mild dizzy spells and shortness of breath and that has not changed. Just wondering how many others have experienced the same thing. I've been to the doctor and he says I definitely needed the pacemaker due to complete heart block.


7 Comments

magic wands

by Tracey_E - 2022-04-19 10:21:06

The pacer can only fix symptoms that were caused by a low heart rate. If you are in complete block, then you definitely need it to keep your heart in sync. It may be that the pacer needs fine tuned. Just because the pacer is working well doesn't mean it's working well for your needs. It may be that something else is causing the dizziness. Are you on any heart meds? Many of them cause dizziness. 

How many others?

by Gotrhythm - 2022-04-19 12:04:26

It really isn't uncommon for some people to continue to have symptoms after receiving a pacemaker. But that doesn't mean your pacemaker isn't helping and you should just learn to live with feeling poorly.

As Tracey says, even if the pacemaker is "working fine," often it stiil requires fine-tuning to make it responsive to one's particular needs. But it's also possible that problems other than heart block are responisible for the dizziness and SOB. A little detective work may be called for.

Advocate for yourself. Your pacemaker team does not know how you are feeling unless you tell them. 

What They Said

by MinimeJer05 - 2022-04-19 14:28:57

Hello and welcome to the PM club!

Hate to sound like a broken record, so I will just reiterate what everyone else said -- talk to your cardiac team and primary doctor and explain to them what you are feeling and they will most-likely do what they can to adjust settings or explain what is going on.

I started having vision and motion issues shortly before/after getting my PM and those issues are still happening -- but the more time that has passed, the more I think it is something else entirely going on.

I am about to get my CPAP machine (finally, after 4 long months of waiting) and I think between that, the chiropractor and my vestibular therapy exercises, things MIGHT return to "normal" again.

If not, I will continue to engage with my doctors to unfold whatever is going on.

For me, I think the symptoms just happened to pop up around the time of the PM, but I guess there's no way to for sure rule the PM out until I run the course of everything else under the sun (vertigo, etc).

Take care

Jer

Thanks for the comments

by Global - 2022-04-22 12:01:13

Thanks for the information. I pretty much am doing what was suggested. I had a pulmonary function test to eliminate lung problems, and it was normal. I have an appointment with my PCP in a couple weeks.

I do have sleep apnea which can complicate things especially since CPAP isn't working very well for me. I take trazodone for sleep and it may be causing daytime dizziness, but my PCP doesn't think so. The only other meds I take are ezetemibe and Armour Thyroid.

My cardiologist isn't really interested in hearing about my problems any more, since he insists they are not heart-related. The pacemaker showed no problems during a bad dizzy spell that I reported to the cardiologist's office. I have a follow-up with the pacemaker tech in June but I don't know what exactly a technician can do. 

I was originally interested in how many people continue to have symptoms after a pacemaker implant, because the few people I know who have pacemakers all felt markedly better with the pacemaker

Same Boat

by MinimeJer05 - 2022-04-24 22:37:59

Global,

It sounds like we are in the same boat -- my cardiac team did all they could to rule out my PM and heart as the culprit, although that isn't really helping me identify WHAT it is. 
 

If I may ask, what's the problem with your CPAP? I started using mine on Wed and the first morning after it was like night-and-day difference -- I had so much energy and focus and just felt like a new person. The second night was just as good, but I started developing some nasty sores under my nostrils. I took a few days off to let heal and will now try some nasal lotion with my nasal pillows to see if that helps, otherwise I might need a different style of mask. 

Sadly, as good as I felt those 2 nights, my vision and motion stuff is still always present. I figured I might need a solid month of CPAP to see if it's helping, but I'm really convinced I have a neck/shoulder/vertigo issue. 
 

Hope you start feeling better soon. The truth might hurt but, it took me a solid 5 months before I started feeling A LITTLE better. I finally started having more good days than bad days. Even though I still have my bad days or my bad moments in otherwise good days. But hey, more good than bad is enough for me right now. 
 

Take care 

Jer

Dizzy?

by AgentX86 - 2022-04-25 00:47:11

Is your "dizziness" vertigo (spinning) or more of a light-headed feeling? It matters a lot.  Rotation usually indicates an inner ear or related problem.  Light-headed can be just about anything.

I had "light-headed" feelings, where I would feel like I was falling forward but for some period (usually 30 seconds or so).  It only happened one day a month, almost like clockwork, but a half-dozen even a dozen times during that day. Like you, my cardiologist and EP soon became uninterested because they couldn't find anything and the month separation was inexplicable.

One day, I'd been complaining to my wife that I was having these episodes.  At lunch, I turned to my wife and said that it was happening... and down I went  - a full grand-mal siezure. If it had happened five minutes later I'd been driving with my wife, DIL, and granddaughter in the car.

I started going to a neurologist and an MRI found two small "white spaces" in my cerebellum  consistent with micro-infarcts (strokes) probably caused by Afib. I'd also been complaining about balance problems which are completely explained by these micro-infarcts.

Bottom line: just because you've had heart problems, don't limit your search to cardiologists. If you have vertigo, go to an ENT specialist.  In either case, a neurologist might be the place to look.

AgentX86

by MinimeJer05 - 2022-04-25 11:16:59

To answer your question -- I feel both. The vertigo only comes on once every few weeks and is usually random in the sense that I don't "feel" it coming on, but I have noticed it happens more when I look down and to the right -- for example, the last time it happened was about 2 weeks ago, I was eating lunch with a friend, I leaned in to grab my fork and then the vertigo (whole world is spinning) hit me for about 5-10 seconds. I immediately leaned forward, grabbed the table and closed my eyes until it passed. Afterwards, I feel completely fine.

The light-headed/off/sick to my stomach/balance feelings are on-and-off all day. Sometimes, they last 10 minutes, othertimes, 5 hours. The only cure for me is to close my eyes and sometimes sit. But other times, the sitting is what I think brings them on (I get pain in my neck and upper shoulder and then the symptoms follow -- light-headed, feeling sick to my stomach, motion bothers me, light bothers me, sometimes balance bothers me). 

I have a follow up with my neurologist on Thursday -- I've had 2 MRI's (and one MRA of the neck) and they said that they found nothing of interest (I forget the scientific words, but that's what they said over the phone).

I saw the vestibular therapist for about a month and somedays, the exercises really helped, but other days they didn't seem to matter. My last day with her she ran me through the gauntlet of tests and said I "passed". She understood that I've been having good days and bad days and when a good day lands on a day that I am seeing her, it can be difficult for her to help me -- but I still practice the exercises on days that I feel crappier than usual.

I'm going to really push on my neurologist to rule more things out -- is there like a neck or back specialist I can see? Other scans or tests? I would also like to see a NueroVisual specialist to rule out BVD -- I have no history of eye problems, no glasses, no nothing. I've seen 2 different general eye doctors and they both said eyes are healthy and I could use a low prescription (essentially "cheaters" but unlikely that solves any of my issues).

These issues seem to have calmed down a little bit over the months (more good days than bad and when I get hit with bad, it's usually a bad spell and not an entire bad day), but I am starting to see this effect my personal life.

Going out to dinner with my wife -- used to be a fun thing from time to time. Now I hate it. If the table is too low, my neck starts to hurt and the vision stuff kicks in -- trying to eat my food, talk to her and then deal with the motion behind her (TVs, waiters, etc) can really make me feel sick to my stomach.

Talking with multiple people at once -- this is really hard, the movement of moving your head back and forth to look at the person talking can make me feel sick to my stomach as well.

Heck, going to the movie theater -- first hour or so is fine, but then neck starts to bother me, I feel really warm and uncomfortable and I either need to close my eyes for 30 minutes or leave the theater to get some air. The motion on the big screen (no matter where I sit) just suddenly starts to bother me.

I must stress that the vertigo senstation (the spinning) only happens maybe once or twice a month and for 5-10 seconds at best, but when it does, I have 0 control of anything (I can't really see or understand balance) and luckily it's happened while sitting or standing where I can lean or grab something.

But the rest of the motion stuff happens daily -- sometimes infrequently, sometimes more frequent. I am able to identify patterns and find things that sometimes make it better.

I work in-office 2 days and I have since switched to a standing desk -- standing allows me to keep my neck and back straight and move my feet and legs around while working -- this doesn't fix the issue, but I find myself leaving work much less stiff or sensitive to everything I have described up above.

At home, I get up from my chair and walk around every hour. I also focus on an object 20-50 feet away outside the window for 30 seconds. I also stretch my neck/back frequently.

These things sometimes make the discomfort easier to manage, but sometimes they don;t help at all.

It's all very frustrating, but I am grateful to be alive and am grateful to not be experiencing anything heart-related (that I can tell). 

Jer

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