ILRs, Vasovagal Syncope, and jerk EP's....

It's been awhile since I posted but I am continuing the journey of trying to get help for my syncope. I had a horrible follow up appointment with an EP today. I won't go into a long rant, but he was so condescending and arrogant, I ended up sobbing right there in the exam room. Even then he didn't change his robotic demeanor. I having been looking forward to this appointment so I could discuss the possibility of having an implantable loop recorder, in order to try and catch a syncopal episode since they are so sporadic and unpredictable. He shut me down right away, and snidely said, (I'm summarizing):

"You have classic vasovagal syncope. I won't consider a loop recorder, it won't do any good. And I won't consider a pacemaker either - did you READ the VPS II study I told you to read last time? Pacemakers don't help vasovagal syncope. (btw I didn't even utter the word pacemaker, I only brought up the ILR). All you can do is try to lessen the episodes by increasing your sodium and doing the counterpressure maneuver I showed you to do. That's my answer - if you don't like it, you're welcome to go see someone else. I can give you the names of some other EP's who would put a loop recorder in because they just LOVE to do procedures. But that's not the way I do things."

I tried to stay calm and told him I was concerned because my episodes were severe, often had no trigger, my mom has SSS, and I had a scary week of tachycardia last fall with no explanation, other than a possible corrolation to a muscle relaxer I took. All he repeated was, "You have classic vasovagal syncope. If that happened to you when you took that medicine, you should just stay away from that medicine."

When I calmly pushed, "but what if, during these episodes, my heart is going asystole for like 7 seconds? How would we ever know what is going on?" He seemed to get really pissed at that, and said, "Even then, I would STILL not insert a pacemaker."

Wow, just wow. Moving on to find a different EP who is willing to at least have a normal discussion with me about the possibility of an ILR. I'm not begging for a pacemaker, I just want someone to help me get to the root cause of my syncope. I had a good cry and now I'm ready to move on, but wanted to see if anyone has had similar experiences!!!

6 Comments

vasovagal syncope

by stannita - 2014-06-27 11:06:25

I have this condition. The periodic episodes were bad and over the years MDs just said I had virus,etc. My husband never caught this " virus". A nurse practitioner suggested that I get a heart consult. All heart tests were normal except for the tilt table, I flatlined and had CPR. This resulted in a pacemaker installation and I have been "good" for a year now. I think the vasovagal is still trying to affect me as I get periodic nausea/weakness but my heartrate does not crash. This periodic status passes within 5 minutes. I would look for another MD, have the tilt table test. I did not consider meds as my liver enzymes are checked 2x/year and I don't need more meds going thru my body.
Good luck with another MD., There is light at the end of this tunnel.
Nita

I have a pacemaker for this

by JJHPA - 2014-06-28 02:06:41

I was in the hospital 8 years ago for observation to be
approved for brain surgery for epilepsy. While there I was observed and hooked up to tons of equipment and my heart stopped for 40 seconds and 7 seconds. They put in a pacemaker before I woke up. I was sent home without epilepsy medicine and was told I was good to go. I had a seizure within a week, face down in a stairwell, my wife thought I had a heart attack, because I "didn't" have epilepsy.
I still have seizures with the pacemaker and I am considering not having the battery replaced. I haven't told the doctor yet, but I am going to tell him next month.
So there is no guarantee the pacemaker will stop it and I decided not to have the brain surgery - removal of right temporal lobe (which was recommended) My family DR cut all the medication, I was taking 1200 mg of Lamictal ,1000 mg of Tegritol and 1200 mg of Keppra daily. Gained 45 lbs and was not well.
Now only taking 500 mg Tegritol and 3 mg of Ativan daily and maybe have one partial seizure a month if I cut myself, burn myself or get hurt.

Much better than surgery

My advice, go see a doctor you can talk to and trust.

JJHpa

Cleveland Clinic

by brushmore - 2014-06-28 03:06:54

I don't know if it is an option for you but if it's possible, I would HIGHLY recommend the Cleveland Clinic. They are wonderful there. I spent 18 years going to different doctors before one of my doctors finally sent me there. So glad I did.

Pacemakers don't help vasovagal syncope? That doctor is full of it. Plus I can't understand why he can make that call without the loop recorded.

Tilt Table

by jillybird - 2014-06-28 04:06:10

Re: the tilt table, I was told by another cardio at this same clinic that the tilt table is not used anymore - it's outdated and not effective. And yet I hear everyone here talking about having their TT test. I have an appointment in August to see an EP at the University of Washington who specializes in syncope so I have high hopes for that appointment.
I have had a CT scan of the brain and EEG to rule out epilepsy. I only have these "seizures" and urinary incontinence about half the times I pass out. I think it's just because they are so severe my brain kinda freaks out for a few seconds. Anyway, I am going to keep pushing for answers and am working on the anxiety that comes with not knowing if and when you are going to faint. Thanks for all your understanding and insights!!

Yes, Tilt Table

by brushmore - 2014-06-28 06:06:00

I have dealt with vasovagel for 18 years before I got my PM. Two years ago it got worse and I went through the same thing with people thinking I had seizures. This can happen when your brain has no oxygen so you are on the right track. I had a tilt table last October at the Cleveland Clinic and I passed out right away. During this my heart stopped for over 40 seconds so that's why I got a PM! So for me the tilt table was the one test after 18 years that proved I was having sever vasovagel episodes.

I think that's a great idea to go to a place that specializes in syncope because as you have found, there is not much know about this and lots of ignorance.

Please get another doctor

by lahbigbro6 - 2014-06-28 11:06:20

You deserve the best treatment possible. A patient should not be crying because of a non-compassionate doctor. The first important test for vasovagal is Tilt Table Test. Actually it was a primary care doctor that determined I had vasovagal syncope. He put me on a RX called midodrine. Next in my story, I passed out again and again, taken to the hospital and my heart stop. Pacemaker implant - now its Neurocardio syncope.
I also have seizures. I do not drop to the floor anymore.

You know you're wired when...

You fondly named your implanted buddy.

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