Vasovagal Syncope

[Christy_D]

At my son's neurologist appointment this morning, they did the poor man's TTT like they always do. This time the results were not what they usually are; his heart rate usually goes up 30 or more beats and his bp rises somewhat as well. Today, his results were:

Lying down: 130/79 hr 97

Standing up 1 minute: 135/89 hrt 110

the next minute or two not much change

Then minute 5 he looked distressed, almost vomited and passed out and his vitals were:

75/42 heart rate 50

His vitals have never plummeted like that, especially so drastically. The nurse had him lay down immediately. The doctor diagnosed vasovagal syncope. It's always something new.

Anyone else have their heart rate plummet instead of increase?

[Guest Alex]

So sorry your son is having to deal with this.

I had a similar experience during my 1st tilt test. Never before, and never since that. It happened right before I passed out, that's why for a while my dr had a vasovagal syncope diagnosis for me on top of POTS.

It was an isolated incident in my case and I can think of several things that might have contributed to it: stress, dehydration, not eating that day - my TTT was scheduled around 3:30PM and i wasn't allowed to eat anything since the night before (almost 24 hrs), as well as having a lot of blood drawn that day and the days before.

Did your dr have any idea as to what might have precipitated this event? Did he suggest more tests?

I wish I could offer some valuable input here, but unfortunately I have no idea how to help you.

hopefully others will chime in.

you and your son are in my thoughts and prayers.

hugs,

Alex

[Christy_D]

This was his first and only time to(so far). Since my son is so homebound and deconditioned, the doctor said the symptoms of his autonomic dysfunction are worsening. He is putting him on a beta blocker, and gave us paperwork to read through on Dr Levine's exercise program. We are going to get a recumbent bike so he can try to start exercising again.

The doctor is also ordering bloodwork to check for sjorgens(sp?) and will move on from there. The doc wants to rule out an underlying autoimmune disease.

[issie]

Christy,

The beta blocker will give his MCAS fits. What will you do about that?

I think we have to have some physcial conditioning. When I was in that wheelchair for so long ---everything got worse. It's so important for us to try to keep moving.

I have felt like this has happened to me - but, wasn't where I could test it at the time.

Issie

[Guest Alex]

Unfortunately, I can tell from my own experience that being deconditioned only worsens the symptoms, yet I have many days when staying in bed is my best bet.

I am currently taking propranolol, but I am unsure of the benefits vs side effects at this point (after 1 year of taking it!). Hopefully your son will benefit from a beta blocker.

You might want to ask your dr for a customized exercise regimen, then maybe gradually move on to dr Levine's protocol. I tried the protocol and couldn't keep up with it, and my POTS symptoms are not as bad as some others' that are posting here.

Good luck and keep us posted.

Alex

[Christy_D]

For now, he is supposed to start out really slowly in the exercise department. He is supposed to just do a couple of minutes, 3 to 5, on the recumbent bike every other day. Slowly increase how much he can do, not pushing it to quickly. He is to wear a heart rate monitor.

He was prescribed propranonal also. Issie, I will definitely look into what is does to MCAS. This doctor doesn't believe in MCAS. I'm not going to start it right away because he just started ketotifen for the MCAS on Tuesday and I want to watch that first and wean up.

He was on a beta blocker when he was in the 7th grade, as a migraine preventative. At the time, his symptoms were not so bad and he did really good on it as a preventative. The only problem he had then was it made him a zombie. He slept all the time.

[Kellysavedbygrace]

This fits with the erratic hemodynamics of MCAS. and somewhat similar to my experience on tilt. (I've had 3 official and lots of stand tests). Each time my diagnosis w slightly different (although in the first case wrong- local doc w little Dysautonomia experience.)

1. 45 bpm HR increase in first 5 mins, then asystole (momentary flatline) accompanied w a large drop in BP (60/40) and blackout

--Dx: NCS, told to increase salt take Fludrocortisone and I'd be back to normal next week. (isn't that funny.)

2. 34 bpm HR increase in 9 mins, NE increase to 650, grey out w symptoms and BP drop to 82/55

--Dx: POTS and Vasopressor Syncope

3. 46 bpm HR increase in 8 mins, grey out symptoms and BP drop to 88/55

--Dx: POTS and OH

I remember early on Dr. Thompson said to me it doesn't matter whether it is POtS or NMS, it is all Dysautonomia. Now when I hear about your son I realize that our bodies are just not in a state of homeostasis so no wonder our hemodynamics are all over the place.

[Mydoggielovesme2]

Christy, I just had a similar experience Tuesday. I am going to physical therapy tues and thurs. when I left the house to go tue my BP was 72/48. I knew it was not a good day, but am trying to be faithful to the therapy. I did the recumbent bike 5 min, at this point my bp was 92/72 pulse was87, then laid on a table to do leg exercises 5 min. Bp and pulse pretty much the sme. As I was sitting up though, I got extremely dizzy, and passed out. My therapist said I was out for more than 3 min. During this time she said my BP was 60/42, and she could hardly find my pulse, but thought it was in the 50s. I passed out two more times before leaving, and was in bed rest of day. Not sure the cause, and today's therapy went much better. Much to the relief of my therapist! I guess I scared her pretty good.