I didn’t get away with it and what’s happening is scaring me. I have been incredibly sick for the past 8 hours. I got home from the autonomic testing yesterday afternoon and I felt at my normal baseline all night. Went to sleep at my normal time and, two hours later, I woke up with violent chills. I couldn’t adjust my position without shaking all over. This is a reaction I have that I’ve never been able to work out — mast cell? autonomic? It feels very viral. It’s so systemic, I can’t sleep. For 4 hours, I was clothed, with my electric blanket on high, unable to stick my head or even a finger outside of the duvet, holding as still as possible to not cause the shakes. Then I started to burn up, my body like a furnace, had to lie naked outside of the covers, waiting for the bed to burst into flames. My temperature through the whole night stayed at 97.5. It seems inconceivable given what I was feeling internally.
But here’s what’s scaring me: My heart rate lying completely flat, before I even got out of bed, was in the high 80s. I am typically in the high 50s to mid-60s while at rest. I don’t think my supine heart rate has ever been that high, even at my sickest. I looked at the graph from my smart watch and — well, here:
I KNOW many of my friends have heart rates much higher than this (and I can only imagine how awful it is), it’s just scary when it was totally normal until I’d been asleep for a few hours and then — bam. Skyrockets. Also, that it’s staying there today when I’m lying here, holding still.
What happened during the testing yesterday? Is this just payback? How can I feel so okay during the appointment and afterwards and then have all hell break loose in the middle of the night? I know this is what has always happened with me — the nighttime reactions — but it would be from Christmas excitement or socialising and I’d be feeling the toll throughout the day. I just wonder — what happened to my heart in the aftermath of the tests yesterday?
Mostly, I’ve just had the wind knocked out of my sails. I was on such a high, feeling like I was strong enough to come through the testing, off my meds, with no issues. Loving my body’s resiliency…
Serendipitously, I had an appointment this morning with a cardiac electrophysiologist to ask his opinion about my vasovagal collapses. I had another one a few weeks ago and it was one of the worst yet (these are different from the nighttime chills/shakes — much more serious and have been happening since 2005, long before I was sick). This last episode was from a pelvic floor spasm and happened very quickly. My husband called the paramedics because I looked like I was dying and couldn’t talk, bradycardia making it hard to breath, hypotension. I was shaking all over, drenched in cold sweat, pooped the bed. It scared both of us.
I was able to chat with the EP this morning over video from my bed, thank you, covid. The bad news is, though, that he can’t help me. He said there’s no point in doing a heart monitor because my episodes are so sporadic and there’s no point in implanting a loop recorded (as a consideration for a pacemaker) if my heart rate isn’t going into the 30s or 20s. I can’t even imagine that. The dragging feeling of my heart in the 40s during one of these collapses is utterly horrific. He suggested a tilt table test and I said, “why, I just happened to have one yesterday.” He wasn’t really convinced that I have hyperadrenergic POTS. He wasn’t really interested in what happened to me in the night. Ultimately, he said I have no good choices — to avoid the collapses, I would have to avoid triggers, which means not having periods, not having bowel movements and not having sex. I’m wondering how to be okay with the stripping down of layers of life. The mourning of each loss is so immense. For all of us.
Thank you for having the resourcefulness and resilience to write and give us some awareness of what you are going through. I’m impressed that you have so much clarity and strength to give in this moment.
Sending you empathy and healing thoughts–
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Wow, what a generous comment, thank you. I’m feeling weak and scared and ineffectual, but you wrote “resourcefulness,” “resilience,” “clarity,” “strength.” I think I’ll carry those words with me to try to block out my own. Thank you for the empathy and healing juju. X
I don’t comment frequently (maybe even never) but this post hit me right in the feels. For those of us struggling with unnamed bullshit, it’s the loss of hope that is the worst. It’s doctors shrugging and saying “Good luck with that.” I am currently stable and have had nowhere near the traumatic journey that you have, but I wanted to say that I am rooting for you. I am rooting for hope. I am hoping that someday sooner rather than later, you get an answer that gives you back that hope. In the meantime, please take care and know that there are random people on the interwebs cheering you on.
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I can’t tell you how much this comment meant to me. “know that there are random people on the interwebs cheering you on” is everything! There are people who are so much worse off than I am and I have a hard time cataloging my journey knowing that fact. But this — what you said — almost like I asked for help and you gave it — it means the world. Thank you. X
1000% echoing the above comments. I’m cheering you on all the way from my bed in the back of the truck in Cape Town, South Africa. I was a bit surprised you’d had no fall out from the extreme exertion of your previous post but so sorry it caught up and hit you so hard all at once – what’s most shocking about all of this is that your doctor continues to show zero interest when you’re going through some next level shit here. Tsssssst. Don’t give up hope. If there’s one thing we know about this chronic unnamed bullshit, is that it goes in cycles. After an interminable period of clawing your way through, you may suddenly snap back onto a higher plane of coping. Hang on in there, spring is coming your side. Much love, Sam xxx
I am so sorry to hear this. I think the hardest part of illness is having the pieces of ourselves slowly stripped away.
Autonomic dysfunction can cause temperature disregulation, but I don’t think to that extreme. It sounds like a severe autonomic episode, especially with the rise in supine HR. Your body went through a lot with the autonomic testing. My supine HR is often in the low 50s, but I wake up most nights with tachycardia in the middle of the night. I know how uncomfortable it can be and I’m very sorry you experienced that.
I can’t tell you how much I hope that they are able to figure something out for you. You are so strong and you have been through so much. You deserve to have a team that will listen and support you and fight to get answers with the same tenacity with which you fight. I’m glad you’re blogging again (as able, of course) so you can be reminded of how much love, support, and acceptance is always waiting for you here, without judgement or the need for explanation.
Sending giant hugs.