Pacemaker Problems??

My daughter is 14 and received her first pacemaker for complete heart block at 13 years old. (2 years ago). Her pacemaker is currently set at 50bpm and it shows that her Vpacing is 100%. she has been experiencing "episodes" where the left side of her body will go numb, then a severe headache, passing out, chest pain, tremors, etc. whenever she is really hot or exercising. Has anyone experienced this before? One dr said it is because her heart rate is staying so low even during exercise and refers us to her cardiologist who says "the pacemaker is working fine". Thoughts? Suggestions? It is very frustrating for her and Dad and I.

6 Comments

What Sparrow Said

by Gotrhythm - 2015-08-07 03:08:35

I want to reiterate Sparrow's comment. "Your pacemaker is working fine" only means the PM isn't broken. It doesn't mean the PM's settings are the right settings for you!

From what I have seen, adjusting the PM for optimum responsiveness is as much art as science. Lots of us have had to return to the cardio numerous times to get the PM settings tuned to our exercise needs.

Good Dog is right. If you are not getting help from the Dr you are seeing, ask for a referral. And I'd take Sparrow's suggestion of referral to a major medical center where specialists in pediatric cardiology would be available.

My two cents.

Single lead or dual lead

by Pacemum - 2015-08-07 06:08:41

Just to confirm does your daughter have a single or dual lead pacemaker?

If your daughter has a single lead pacemaker just to the ventricle turning on the rate response may help to some degree. My daughter had hers turned on at about 6 years old which enables the PM to recognise when exercise is taking place and let the heart rate go higher.

My daughter had a single ventricle lead till she was seven and a half years old but her cardiologist changed her to a dual lead pacemaker when the battery needing replacing. We found that the single lead did not give as good heart function as she often became tired when exercising as it would limit how high her heart rate could go.


A base rate of 50 bpm does seem low. My daughter who is now 15 and now has a dual lead is also 100% paced in the ventricle and about 4% paced in the atrium has always had a base rate of 60 bpm and at upper rate of 160 bpm.


New Doc

by Good Dog - 2015-08-07 12:08:38

Obviously, your daughter is having some pretty serious issues. If your doc can't help, he could have at the very least, referred you to someone that could. Since he did not, you need to find a new doctor. You should do so quickly. I just can't believe that with those kind of serious symptoms he did nothing???
Remember this............only one-half of the doctors out there finished in the top 50% of their class.................

Dave

perhaps a genetic link

by judyblue - 2015-08-08 11:08:20

Has your doctor mentioned Long QT syndrome? It is inherited, but mom and dad may be asymptomatic. The passing out part is what made me think of it. Perhaps visit SADS website. (suddent arrythmic death syndrome- horrible name!) They are super knowledgeable about this and other heart related problems that manifest in young people. good luck!
judyblue

Heart Rate and Rate Response

by jkriz1989 - 2015-08-16 12:08:18

For a patient with Vp 100%, heart rate of 50 bpm is just wrong. The pacemaker might be working fine but the minimum HR should be kept at 70 bpm.
Here a rate responsive pacemaker is highly recommended. Rate response of a pacemaker helps in adapting the heart rate according to the patient's needs. If the implanted pacemaker has rate response, just ask them to change the programmed pacing mode to the rate responsive pacing mode.

This SADS (also known as Brugada syndrome or Sudden Cardiac Death) mentioned by judyblue is an entirely different condition which has nothing to do with your daughters condition.

Thanks!

by MarkLeaG - 2015-09-22 06:09:42

Thanks! We are still dealing with the situation. We have been to a neurologist to rule out any seizures, etc. Neurologist thinks it's heart related, cardiologist says its all anxiety. I think we are going to look for a second opinion. The last two months, on top of the other symptoms, she's now had four separate abscesses. I took her to the dr. last Thursday and they lanced, drained, packed, and cultured the abscess under her arm (opposite side of the pm). Yesterday they called and said it came back positive for MRSA so we are heading back to the dr this afternoon. She is having terrible headaches and neck pain today. Has anyone had any experience with MRSA after the pm has been in for a while? (she's had her pm two years ago Sunday).

You know you're wired when...

You have an excuse for being a couch potato.

Member Quotes

I am just thankful that I am alive and that even though I have this pacemaker it is not the end of the world.