Neurocardiogenic Syncope Community Group
For anyone suffering with an autonomic dysfunction like NCS, POTS, or other vasovagal syncope and would like to connect to others and discuss, share, and care about one another as we learn to cope with the many challenges of this disease. And remember that DailyStrength is designed to be completely anonymous. The only information that is required is for you to choose a...
Hello everyone,
My husband failed the second half of his tilt table test this morning. I've yet to speak directly to his doctor because I've been at work all day, but my husband told me that both of his heart's atria stopped working, causing him to lose consciousness.
It's been a long road to get this far - he first began having "episodes" in Feb 2015. Since then, we've been to the ER at least 3-5 times, and a neurologist was convinced he just had migraines. ER doctors mostly thought it was seizure activity. Then the cardiologist, finally, is like "oh, duh, vasovagal."
The cardiologist wants to put him on beta blockers. Since my husband has a history of depression and anxiety, he warned that the beta blockers might increase his depression. Doctor said that, in that case, my husband would have to get a pacemaker.
He's had at least 8 episodes of syncope, but he can't remember anything for about an hour before these things happen... our best assessment of his triggers is that it's stress/anxiety. But other things make sense, now that I"m reading up on this stuff - not eating enough/skipping meals, too much time in a hot bath, etc.
I'm just looking for any insight anyone may have regarding this situation - is this possibly fatal? Is he likely going to need the pacemaker? What can I do to help him? Are there things I need to be asking his doctor?
We're also debating filing for disability for him, and I don't know what to expect or if that's even reasonable..
Thanks,
Concerned Wife
My husband failed the second half of his tilt table test this morning. I've yet to speak directly to his doctor because I've been at work all day, but my husband told me that both of his heart's atria stopped working, causing him to lose consciousness.
It's been a long road to get this far - he first began having "episodes" in Feb 2015. Since then, we've been to the ER at least 3-5 times, and a neurologist was convinced he just had migraines. ER doctors mostly thought it was seizure activity. Then the cardiologist, finally, is like "oh, duh, vasovagal."
The cardiologist wants to put him on beta blockers. Since my husband has a history of depression and anxiety, he warned that the beta blockers might increase his depression. Doctor said that, in that case, my husband would have to get a pacemaker.
He's had at least 8 episodes of syncope, but he can't remember anything for about an hour before these things happen... our best assessment of his triggers is that it's stress/anxiety. But other things make sense, now that I"m reading up on this stuff - not eating enough/skipping meals, too much time in a hot bath, etc.
I'm just looking for any insight anyone may have regarding this situation - is this possibly fatal? Is he likely going to need the pacemaker? What can I do to help him? Are there things I need to be asking his doctor?
We're also debating filing for disability for him, and I don't know what to expect or if that's even reasonable..
Thanks,
Concerned Wife
I went through ER's,Docs, Ambulances etc without any diagnosis. What was weird was that I felt faint when sitting for an hour or more and I also regularly woke from my sleep, feeling like I would faint. By running up and down the stairs I would get my heart rate up and then be Ok. (This is not typical vasovagal) I was very bad on flights with the anxiety of the plane having to make an emergency landing to off load a collapsed passenger.
Luckily I had health insurance and my GP booked me into hospital for a week of tests. The Caridologist said he suspected it was vasovagal and ordered a tilt table test, within 3 minutes I was out cold.
I'm told it's not life threatening (other than having an accident when passing out) and is manageable, a pace maker I was told was the final resort, but I didn't need one. My Cardiologist said his wife suffered from it and he seemed quite knowledgeable about it. Initially I was on beat-blockers for a week or so only. I was then put in Midon and Akineton. I find the Akineton works for me and I only take it when required. I found taking the midon 3 times a day gave me side effects which where not to pleasant.
That said, I found found that I need to manage sleep, diet, exercise and anxiety. With regard to Anxiety, I didn't think I had it, but on reflection, i have had work stressors and I try to manage how I deal with these now (not always easy, but I realise now that we all focus to much on work and take it to much to heart)
I recently took 2, 9 hour flights and was OK, which is a real achievement for me.
I hope this helps in some way, even if only to reassure that it is manageable if you find the right medical expertise. Best wishes to you both.
Edmo
Hopefully, you will find answers that work for him.
Blessings!
I have a pacemaker as my heart stopped for 63 seconds on a tilt table test. The drs gave it to me to improve my life as when my blood pressure dropped & my heart stopped it took a while to recover. The most danger I was in was injuring myself if hit something when going down.
They never tried me on any tablets just gave me the pacemaker which I was pleased about. I don't get any side ffects like you do from tablets it just sits in side me looking after me. If my blood pressure suddenly drops to 45 it then kicks in for 2 mins, does its bit then goes back to sleep. Had to be adjusted when first got it as went off so much but they adjusted it to suit me. Just have to go for yearly check to make sure both pacemaker & me are ok & we have been great.
Best thing I've had done as no longer scared to go out.
Hope I've helped, won't be without my pacer now. Sue x