Episodes at inconvenient times

Posted , 4 users are following.


I haven't posted in this forum before, but I've had SVT for most of my life, I think (early 40s), though only diagnosed recently.

In the past I had episodes only once every couple of years that I could usually end with a variation on valsalva within a few minutes.

The past couple of years it's increased to one every few months, or so, and valsalva is not always successful, though it still usually ends within 10-15 minutes. So that's fortunate.

The problem with increased frequency is that it comes with increased likelihood that it will occur at a really awkward time. And when that happens, probably because my stress level is higher, I find that the episode lasts longer and valsalva often doesn't work. For example yesterday I had an episode while walking to an appointment about half an hour from my apartment, i.e. just on a random city street not that close to home or anywhere else I could take refuge. I honestly didn't know what to do other than lay down on the sidewalk and try valsalva right there. It didn't work, and I didn't feel like I could walk home on my own. I thought about asking a passerby for help but also wasn't sure what to ask for exactly. I ended up calling 911 because I'd been lying on the sidewalk for 20 minutes and wasn't sure what else to do. (So this was also my first experience going to the hospital and having adenosine).

My episodes have always been totally unpredictable and I haven't identified any triggers, though I've really tried.

Just wondering what people's strategies are for this kind of thing? What do you do if you're in a restaurant, at a party, out running errands, driving, etc? How about, even worse, on a plane or in the middle of the woods on a hike? Have you found a succinct way to explain to curious strangers what you need? Do you try to get away somewhere to wait it out or just act like nothing is happening?

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2 Replies

  • Posted

    Hi, I'm in a similar position to you. In my late 30s, my epsiodes used to be every couple of years and less than 15minutes. They now last around an hour and need paramedics/trips to the hospital. Ive also been wondering what people do on hikes, planes etc. I have a young family and so desperately want adventures with them without fear. Will follow along to see answers.

  • Posted

    Me too. These days (I'm 78) my body can't cope, my blood pressure drops and I will pass out if I stay standing. I don't know what to do – this year I have called an ambulance twice for A&E and adenosine but as you say, supposing I'm out walking? My confidence is shattered.

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