Episodes every day!!! Need advice

I have had a Medtronic pacemaker since 2000, repaced in 2008. I was diagnosed with neurocardiogenic syncope. My episodes when I had severe heart rate and BP drops every 3-4 months...I had many drops that I did not fell approx. 250 every 3months. Each each year the episodes occurred to every month, I am in bed for 2 days - I am so exhausted, I now have developed another problem, my cardiologist reset the pacer so it would sense the drop at 70. I really don't understand what occurs when I have the drops but since the beginning of December I have felt every HR and BP drop.... I went this past Friday and had it set so that my rate would drop so long. I had such severe episodes I thought I was going to faint. Can anyone help me. I am calling the office tomorrow and sending a recording, Now the NCS is controlling my life....

7 Comments

Need to see M.D

by tsimbrow - 2012-01-16 09:01:06

Hi Kathy,
As a nurse this is a definate change and not good. You need to be seen and reassesed as soon as possible. This is dangerous. Please get checked!

granddaugter

by parla16715 - 2012-01-16 11:01:37

reading your note, i've noticed that you were diagnosed with neurocardiogenic syncope. my granddaughter was diagnosed with it when she was 16, over a year ago. she still hs the drop in bp and the dr. tellls us her heart and brain do not communicate. do we need to get a second opinion on this? a pacer was never mentioned.

So Afraid

by kathy22 - 2012-01-17 02:01:26

Bella, I am so afraid, I don't know what P.O.T.S. is ... I usually blog on the neurocardiogenic syncope site and some have POTS. I feel so lightheaded, I wieh the cardiologist would call me back.

A few thoughts...

by jenny97 - 2012-01-17 03:01:04

First, take a few deep breaths. As you know, anxiety can definitely exacerbate the symptoms of NCS, so it's important to stay as calm as you can. I know it's easier said than done, but it can really help. Sometimes I just walk around telling myself (out loud if no one else is around :) ) "It's ok, everything's ok. Calm it down" And then I try to distract myself. Maybe that will help you a little too.

Second, as everyone else said, you should talk to your doctor. In some cases, they can put the settings back to the way they were prior to the change in your health and that can help, particularly if the settings are the issue.

Third, I didn't understand your discussion of the setting being set to sense the drop at 70. Does this mean it is set to sense when your heart tries to go below 70 or is it the rate drop response that is set to kick in when your heart rate drops by 70 bpm in a specified period of time? A PM does not help with blood pressure issues directly, but is sometimes implanted with the rate drop response (RDR) to sense when the heart rate drops too quickly (which may be indicative of a blood pressure drop). When such an episode is sensed and RDR is set, the PM will increase your hr to the predetermined setting. For example, in my case, RDR is set to kick in when my heart rate drops more than 30 bpm in 30 seconds. If that happens, it paces me at 95 bpm for two minutes. The theory is that the higher hr helps get my blood pressure a little higher until my natural system can take over more normally. The max of such episodes that my PM will count is 267. I have >267 episodes within even a 3 week period, so I have no idea how many of these episodes I have over a whole 3 month period between interrogations. In my mind, volume doesn't matter, so long as the PM catches them and I remain conscious.

Although a lot of NCS patients do not fully resolve with the implantation of a PM, if you had been stable and have suddenly started having problems again, something has changed and your doctor should hopefully be able to help you sort it out.

POTS is typifed by a very high heart rate, which is sometimes, but often not, associated with low blood pressure. You didn't mention if you are experiencing high heart rates during these episodes.

Please note that neither NCS nor POTS are considered life threatening conditions. They can certainly inhibit your functionality and can feel life threatening but, in general, the episodes themselves are not life threatening. As I am constantly reminded by my own cardiologist and other qualified medical professionals.

One thing that I've noticed in dealing with my own NCS is that it is a bit cyclical. I start feeling bad, so I start resting more, which sometimes entails lying down more. the problem with that, is that your body then doesn't have to fight against the stress of gravity in keeping your bp up and becomes used to being supine. When that happens, and I eventually start getting up more, then I have more NCS episodes as my body tries to readjust to fighting gravity. Therefore, I have learned to try to spend at least some time upright every day, no matter how bad I feel, just to keep my autonomic system primed for "real" life. Although not always pleasant, this strategy has really helped me to increase orthostatic tolerance more quickly after prolonged illness.

All that said, you didn't mention what the other problem is that necessitated the PM settings change, so my huge caveat is that this is my experience and may or may not be fully applicable to your unique situation.

In any event, I hope you are able to find quick resolution to your issues and have a quick return to full health very soon.

All the best,

Jenny

rate drop response

by kathy22 - 2012-01-17 06:01:21

Jenny97..thanks so much for the information. My pacemaker is set at 70..it is a rate drop response that is set to kick in when my heart rate drops . The rate drop response was set at 25 bpm in 25 seconds..that didn't help so he set it for 20bpm in 20 seconds, (your info helped me to better understand what my cardiologist told me he was changing. He also put me on 50mg of Toprol..I called the office this morning and sent a recording.....I received a call back this afternoon and I was told to take 100mg of Toprol and this would help. I asked the nurse why the episode was so severe....(I was stressed out before the episode) she said my HR went up quickly and just dropped she also mentioned a tachycardia event. I hope taking the beta blocker will work. I took it years ago and it did nothing. I have anxiety disorder and am on meds for it. I was wondering if taking a sleep aid may be not be good if I have NCS

beta blockers

by jenny97 - 2012-01-19 03:01:59

I'm not really sure why they are giving you a beta blocker if the problem is that your bp is bottoming out. Unless you're getting really high heart rates too (on a regular basis). Were you on a holter monitor or something when this episode took place?

In general, beta blockers actually decrease bp. They are typically used in cases of tachycardia (like what you see with POTS), but they can do a real number on your bp. So if you're fainting due to low blood pressure, beta blockers could actually make it happen more frequently. That said, if they're needed for high heart rates, then you might not have much choice. Getting the anxiety under control as much as possible might help and then it might be possible to back off of the beta blockers.

In addition, you don't mention how long you've been on the beta blockers. If they're relatively new, you may be exhibiting the side effects, which can make you feel pretty uncomfortable.

One more thing to think about is that there are medications that can raise your blood pressure - midodrine and florinef are often used for this to treat NCS. So maybe one of these could be added if the beta blockers are necessary for high heart rate.

And finally, most doctors recommend a high sodium diet, high fluid intake, and strengthening of leg muscles (through recumbent bike or rowing) to treat NCS/VVS.

So it sounds like another conversation with your doctor is in order, to make sure you understand why you're getting the beta blocker and if these episodes are associated with low bp.

(Have you had a holter monitor, a tilt table test, or other similar testing to capture these episodes?)

horrible episodes/Motrin PM

by kathy22 - 2012-01-27 02:01:03

I started having the episodes during the night and was in bed all day yesterday. Every hour I had severe drop and BP drops. My pacemaker was adjusted and I am no better....I am so discouraged...I have to be like this the rest of my life. besides having the severe drops every 2-3weeks I am now having mild one every day. I am always tired and everything I do seems to be a chore. I have had all the tests mentioned on this site and tried all the meds. The beta blocker didn't work before, but my cardiologist is trying it again. I have a question...has anyone ever tired motrin PM or Excedrin PM? I am wondering if this could be making my NCS worse?

You know you're wired when...

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I am 100% pacemaker dependant and have been all my life. I try not to think about how a little metal box keeps me alive - it would drive me crazy. So I lead a very active life.