2 yrs post implant

It’s been 2years and I have been miserable.  I’ve visited three cardiologist and since test don’t show anything, I’m being told nothing’s wrong.

I know something is not right, I’m tired I get nauseous, I have constant chest pressure.  Sometimes it feels like I’m wearing a collar that is too tight and there’s pulsing in my neck with a mild headache to go with it.

I don’t have a high blood pressure and try very hard to be active, it’s awful to be so tired.

Anybody else have this problem?


15 Comments

Feel nauseous

by Loonylil - 2017-12-16 04:56:35

Hi there

i recognise the feelings you describe, I thought they were side effects of beta blockers

are you on any new meds?

or a new combination of drugs..

take care and best wishes❤️

2 yrs

by Gilbert1* - 2017-12-16 12:21:42

No med change;  Drs. Say I have SSS, but I didn’t have it before the pacer....

im thinking my heart and the pacer are not working together even though I’ve had several adjustments made.

Inspite of my user name, I’m a woman, age 54.  I have a horse, full time job in aircraft maintenance and an active lifestyle.  As I look through records I continually see the words anxiety and depression.  I disagree completely.... there’s more to this.

Sympathise

by Jane S - 2017-12-16 12:44:23

I understand only too well how you feel,I feel good for about 2-3 months then start to go off again.I also have your symptoms of tightness and choking, which I was told it was due to the heart pushing against closed valves ??? true.

Have you had an exercise stress test at the same time as some one monitoring your device? that is a very usful combination as they can see what the heart is doing at the same time as checking the PM.

I just had another treadmill test and going back on wednesday for them to see what they can alterer on the PM settings, changed meds and not sure if this can affect things.

I do think we can feel down at times ...only natural but we also know when things aren't right.

When you get told everything is working ok it's so anoying as it does not mean you are ok.I have been proven right each time I've gone back with symptoms which limit how I function. Either a setting needed altering or getting an arrythmia detected.

Like your self I'm active and try to keep going but it can be hard. Get another appointment (maybe take some one with you) and push for more tests , don't forget things like thyroid / hormones just in case. Is you consultant a specialist in the electrics of the heart, if not ask for a referal. I hate being pushy but getting better, as I said to one of the girls at my last visit - by the time I'm sorted I'll be to old to do anything lol!!!

Good luck

Jane 

2 years

by Gilbert1* - 2017-12-16 12:55:20

Thank-you!

I agree, some days are just hard....

I’m getting my records together to see a specialist at University of Alabama, Birmingham.  I’m convinced I’ll get answers there.  It will be worth the drive!!

To Gilbert1

by monkeyman - 2017-12-16 14:38:05

Sounds as if you have a severe underlying problem probably dealing with the electronics of the heart that the "run of the mill "cardiologist probably could not detect. I was recommended to cardio specialist that delt specifically with the electrical aspects of the heart and you might want to follow up with one. My pm has been in 2 years and have never experienced anything like you're describing. 

2 yrs

by Gilbert1* - 2017-12-16 17:44:17

Thanks for the input!  I’m not ready to give up so I’ll talk to everyone and anyone!! 

higher level specialist is in order

by zawodniak2 - 2017-12-16 22:14:13

I agree with monkeyman; a specialist should be your next step,,An electrophysiologist who is a cardiolodist specializing in the electrical system of the heart would be better qualified to get to the root of your symptoms.

                           Rodger

UAB

by Artist - 2017-12-17 01:50:10

Are you retired USAF?  I am retired USAF and live in the Dothan, Alabama area.  I have an excellent EP.  He implanted my PM and did an outstanding job.  He referred me to a Dr. Maddox at UAB, for a heart ablation, and every aspect of the care there was excellent including the presurgical work up,  the ablation which took 4 1/2 hours and the compassionate and expert care from the post procedure nursing staff.  I was treated by a highly trained, well coordinated, team of medical specialists.  Your plan to go to UAB might be well worth the trip. 

Had an ultrasound?

by LondonAndy - 2017-12-17 05:03:58

Jane mentioned that she thought it could be the "heart pushing against closed valves".  I didn't have those symptoms when I had a severely blocked aortic valve about 3 years ago, but thought I would mention that the only test that definitively showed the state of the valve was an Ultrasound.  So if you haven't had one of those might be worth pushing for one.  My main symptom was shortness of breath, but that was probably because the blockage had reached the "severe" stage.

Ask for pm rep

by Vilpiz - 2017-12-17 11:16:04

i had similar problems and was told all seemed fine with PM. Even had the stress test with the pm nurse watching what the pacemaker was doing and they said it all looked good. But thankfully I have a Dr. who wasn’t satisfied with that and he ordered another stress test but this time with Boston Scientific rep present. The funny thing is he saw the problem the second they  connected to the PM. Made an adjustment before I got on the treadmill and I was able to run the test no problem. It was a setting that has to do with the amount of time the pacemaker listens for a signal to fire. I felt tired, dizzy, out of breath, tightening and heavy feeling in my chest and I couldn’t handle a flight of stairs or an uphill walk without stopping.

Artist

by Gilbert1* - 2017-12-17 12:12:34

I spent 12 yrs in, husband is retired.  We’re both contractor’s  now.  

I begged for my referral to UAB after researching the cardiology department.  I requested Dr. Bittner when I saw one of her specialties was women’s cardiology.

So excited and can’t wait to get  some answers!!

Thank you!

by Gilbert1* - 2017-12-17 12:31:49

This is the first time I’ve really posted on this site and want to thank you all for the input.  I actually feel like I’m not the only one now and since I don’t know anyone with a pacer it’s hard to have a discussion about it. 

Been there, done that

by Gotrhythm - 2017-12-17 13:38:54

You have more than enough answers but the mention of labels of anxiety and depression touched a chord with me. Who wouldn't have some anxiety if they knew something was wrong but could get no help, and who wouldn't find it depressing to feel bad all the time--at 54?

Here's what I learned when I found myself in your shoes. Whatever is the matter, diagnosing it is beyond the skill of the doctors you have been going to. That means it's probably not some run of the mill, see three cases a week, kind of problem. And that means you need to go to a major teaching hospital, somewhere that they see the rare, unusual presentations. And where they are not under the pressure to figure you out in under seven minutes. UAB is excellant.

I kept thinking if my doctors here couldn't help me they would refer me on. Wrong! They just labeled me. I had to refer myself. And with Duke's help, I found out just how good a properly tuned pacemaker could help me feel.

Overlooked...

by ROBO Pop - 2017-12-18 12:49:17

And even more often overlooked and denied is in fact depression and anxiety. Not saying that's your problem but don't just dismiss it as possibilities, depression is common in 45% of heart patients, and ignored by most cardiolovists and Electrophysiologists.

Seek professional evaluation it can't hurt and could save you a lot of anguish

Depression

by Gilbert1* - 2017-12-18 15:35:49

I’m familiar with depression, I’ve had it for years.....that being said, I refuse to believe that is my problem.  There are too many physical issues, I’m on Ranexa, Xanax and Vicodin to treat “symptoms”.  I don’t want to just drug myself into a mediocre life.

I've had the ultrasounds, CT scans, and stress test.  My arteries aren’t blocked and in all other aspects nothing can be found.

I know that the pressure in my chest, the fluttering and and thumps in my heart, the pulsing and choking feeling in my neck, and the ridiculous amount of fatigue and exhaustion are real.  None of that was there before the pacer.  I blacked out one morning a week later I had a pacer......

I need answers and I think UAB has them.

You know you're wired when...

You can proudly say you’re energy efficient.

Member Quotes

My cardiologist is brilliant and after lots of trial and error got me running. I finished this years London Marathon in 3hrs 38 minutes.