First 911 call since being sick.

We had to call an ambulance this morning for — are you ready for this unbelievable fact? — THE FIRST TIME SINCE I’VE BEEN SICK (absolutely sick and disabled by M.E.; I was fully functional with MCAS for a decade beforehand). And I need the help of all you big brains to figure out the mechanism behind what happened. This is a long post because I want to track exactly what happened. I appreciate your reading this and your thoughts.

My main question is: What can cause sudden bradycardia and loss of consciousness, but not significant hypotension (nor hypertension)? Here’s the back story:

I have a history of anaphylaxis and it almost always happened during my period, usually on the first day, usually after drinking alcohol. I also have a history of collapsing at the start of menstruation, this happened many more times than the full-blown anaphylaxis and often seemed to be triggered by a bowel movement in the morning. The collapsing we’ve called vasovagal syncope, the theory being: vagus nerve triggered by bowel pressure + very reactive day = collapse. I sometimes lost consciousness, but I always was immobile, grey pallor, yellow lips, glazed-over, unfocused eyes, covered in sweat, heavy breathing, hypotensive, bradycardic. What was NOT typical of vasovagal syncope, according to doctors, was that my body didn’t bounce back: my HR did not rise to compensate for the low BP and my BP didn’t come up once I was supine. It usually resulted in ambulance trips to the ER for fluids and at least once I got IV morphine for severe dysmenorhhea (I can’t have any morphine-derived meds anymore).

These were my main health issues before M.E., I felt normal otherwise and pretty much blew them off. Incredibly, they haven’t happened since becoming sick in 2011. My dysmenorhhea actually got much better. Since being sick, I’ve often had bad mast cell reactions and worsening of ME symptoms on the first day of my period, but no collapsing with my husband terrified, calling 911. I thought it was because I’m more conscientious about hydrating and salt-loading.

I was spotting yesterday. My period came on in earnest in the middle of the night, but what disturbed my sleep repeatedly was a viral feeling of sick chills every time I changed positions. Chills and shakes enough to wake me. Then the period cramps started, much, much worse than normal, incredibly painful on the left side. The only thing I could think was maybe it was a ruptured ovarian cyst. I was moaning and crying out with the cyclical cramps, trying to find a position that eased it, my dog Riley clawing at me and burrowing under my body to help. My husband got me a hot water bottle, 2 acetaminophen and a benadryl. Then I took a turn for the worse: I was shaking badly, became nauseous, very weak, drenched in sweat (all the symptoms listed above). We took my vitals: BP was 86/49 (low, but normal for me), temperature was 97 (low, but normal for me), oxygen 96, but my HR was 48 — very abnormal for me. I’m usually 68ish at rest.

My husband got me apple juice in case I was hypoglycemic (it was too much of an emergency situation to check my blood sugar), salt water for my blood pressure, and started to call 911, but I said no. What could they do? Besides charge us thousands of dollars that we don’t have. I’d taken the 2 medications I could take, I could give myself fluids at home with my safe saline, and I didn’t want the two of us sitting around in a building full of flu and measles for hours on end, waiting for blood work and a vaginal ultrasound that would show nothing. But I kept getting worse and knew I was about to lose consciousness (even though I was still in bed and hadn’t even tried to stand up). I was starting to be unresponsive, so my husband called the paramedics.

By the time they got there (3 emergency response vehicles, 6 EMTs!), I’d come back from the edge a bit and was able to talk. They were concerned with my low BP, but I assured them it was normal for me. They did a cursory check of my heart and were concerned about the bradycardia, but said they didn’t see any rhythm issues. They tried to persuade me to go to the hospital, but I said no and signed a waiver. They didn’t want to speculate beyond dehydration (they pointed out that people aren’t realising how dehydrated they are in the current very dry Seattle Snowpocalypse) and possibly needing tests of my reproductive organs. She said, “It’s alarming to lose consciousness while lying down, it’s alarming how low your blood pressure is and it’s alarming that your heart rate isn’t responding to your low blood pressure.” <– That’s what I want to brainstorm.

It was definitely caused by the first day of my period, as usual, but what is the physiological mechanism? What might typically cause sudden bradycardia? What can cause a low HR + low BP (if you take the paramedic’s position)? Or what can cause a low HR + normal BP (if you consider my BP is normally low)? How does a reaction to my period explain this? Could it be 100% pain-induced? If it’s a mast cell reaction, I would expect a high HR and an abnormal BP. Why would I pass out when I’d been lying down the last 9 hours? Why would I pass out with my BP around my normal? Can a low HR cause loss of consciousness without BP dropping significantly? Is this cardiac syncope? Could I have cardiac syncope without knowing I have heart issues? Or autoimmune autonomic dysfunction? Or, once again, adrenal insufficiency? Does losing consciousness usually make breathing labored?

By the time the paramedics left, I was very shaky, but I knew I wouldn’t pass out and my husband helped me get up and hook up my own fluids. I went to bed freezing, with 2 hot water bottles, all my clothes on, under covers in a warm room and it took hours to stop being chilled to the bone (why was I freezing?). When I woke up, finally warm, my HR was 76 — almost 30 bpm higher! I’m still shaky, have a very bad headache, and my heart is jumpy with some palpitations, but completely different from the half-dead, exsanguinated feeling of the bradycardia.

Any ideas are appreciated. I have a routine follow-up appointment with my GP on Tuesday and I’d like to ask her for any tests that might be important. Cardiac work up?

Lastly, I want to mention that it’s REALLY hard not to believe in retaliatory chronic illness gods — yesterday I started writing my first blog update in almost 5 months, it is incredibly positive (“my baseline is higher! I’m able to do more!” etc.) and I stopped myself from writing my usual “gods, cover your ears” and “knock on wood, toba toba” because I’m stable, I’m not as fearful of being knocked down, it’s superstitious nonsense… and then this happens… the first time in 8 years… It just seems a little coincidental. And makes me sad.

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5 thoughts on “First 911 call since being sick.

  1. Jak says:

    OMG, how frightening 😦 My Dad has bradycardia while asleep (but not while awake) and has chronically low BP and this results in dizziness & vertigo for him, with episodes of being faint/semi-conscious. He actually wakes from sleep having a vertigo attack then suddenly projectile vomits and sometimes passes out. He’s had all the heart tests, neuro tests etc. and they can find no reason for it.

    I did a quick Google trawl and found this paper which details rare cases of vasovagal syncope while supine: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1768202/ and https://academic.oup.com/europace/article/9/9/835/516315 so it’s rare but can happen.

    I empathise with the passing out on first day of your period – happens to me fairly regularly, esp now I’m in peri-menopause. It honestly makes you feel like you’re dying – like every ounce of blood has been sucked out of your body.

    Sending hugs
    Jak x

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  2. Oh no, Liz! Sounds scary!

    I have an idea- I believe that my intestines get ‘twisted’ right next to my left ovary. I can get quite large hard lumps, with external manipulation it usually resolves. It seems like I’m pushing stool along my bowel, and it will suddenly release. Its exactly where my ovary is- right next to where I used to have ovarian cysts ‘pop’. It’s been happening for two years, but of course that “isn’t possible”… You know what I think of that one! 😂. Here’s the bit that I find interesting in your situation. Any constipation issue I have usually solve themselves when I get my next period. Since forever..Now, though, if I get my period and I have the bowel ‘twist’, I’m in HELL. My skin and mucosa swell if they are touched lightly. I can only assume that it applies to my insides as well. Merely being consitpated makes me more reactive, let alone having a twist of some sort and my period at the same time. The increased pressure in my intestinal lining makes it swell, which then increases the difficulties in passing stool, etc etc etc… If I need an enema, I have found that some sodium chromoglycate in a simple saline enema makes it MUCH better. My pain is reduced and my ‘success’ rate improves. It makes it less likely that I will immediately get stopped up again as well.

    I have also figured out that if I get too constipated and have a lot of difficulties, then when it finally ‘clears’ I get vaginal bleeding. It’s not my period, it’s straight blood. No other period symptoms,etc etc.. I have yet to convince a doctor of that, but I am certain of it. I finally managed to convince them to do a colonoscopy (it’s only been 7 years….) I hope it can explain what’s up. Whether it’s blood coming from my abdominal cavity and out (sometimes it’s very, very dark), or perhaps tugs on an adhesion from a c-section, or scar tissue from endometriosis and ovarian cyst. or???? I’m really not sure.

    As for BP issues- mine is clearly screwy as hell. I am convinced I have low blood volume, it’s the only thing that makes sense. What I have learned is that 1 to 1.5 lire’s ofsaline a dayandahandful of sea salt a couple times a week improves it dramatically. Whenever my body pitches off the cliff, I take epi. I’m sure I’ve mentioned to you before that works so well, normalizes my BP (whether it’s high or low), reduces my overall swelling, how likely I am to rebound, etc. I haveto Be VERY careful to not use an epi pen- itt’ll buy me15 minutes, to get some proper stuff. The cure is almost worse than the ana! If I use preservative free I’m recovered in 10-15 minutes. Every 5 minutes I wait adds several hours of recovery time. Itsvery good to be able to take it and not call an ambulance (counter to any doctors advice, but they are covering their asses)- avoiding ER’s is high on my priority list… 😂.

    In any case, I hope you’re feeling better! It’s awful when you can’t figure out what is going on- even worse when people who are supposed to know are scratching their heads or say ‘That’s no possible!’.

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  3. Lindsay says:

    Wow. That sounds super scary. I’m so sorry you went through that. I wish I had some huge insight, but I don’t. I get bradycardia often, especially when my volume seems especially low. I do believe hormones can have a serious affect on our illnesses. Progesterone increases blood volume, so if progesterone plummets (like right before your period), it could drop your blood volume enough (especially when already low) to cause syncope.

    I also recently had a discussion with my cardiologist about research currently being conducted that shows the blood pressure in our head is often different than that in our arms. So a low-normal blood pressure from a BP cuff reading doesn’t necessarily mean the same pressure in your head.

    Sorry I’m not more help. Big hugs to you (and Riley)!

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  4. […] When my husband called 911 on the first day of my last period (both my MD and ND said that my body had gone into shock), it was the first time I’d had such a bad collapse with vitals bottoming out since 2010 — since before I was sick! Then, 5 days later, I got a tingly tongue and lip during IVIG and then a hive on the base of my throat. I realise it was a tiny reaction compared to what so many mast cell patients go through (a week later, a friend of mine went into full-blown anaphylaxis during her IVIG infusion and then somehow got the guts to try again the next day with the same batch –that put my experience into perspective), but the thing is, except for one small hive when I tried Xanax in 2013, I hadn’t had any hives since being in full-blown anaphylaxis 17 years ago! And that place–a hive in the suprasternal notch– was always the position for a systemic red alert, for something I ingested, as opposed to benign contact dermatitis. […]

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  5. triciaruth says:

    Just a shot in the dark here – could it be a splenic issue? The spleen can mobilise blood in a crisis and perhaps yours reacts in some way to hormones and retains it? or perhaps it is a red blood cell issue – that might explain the passing out whilst lying down with ‘normal’ blood pressure – with less oxygenated blood getting to your organs?

    I quite often think that my body is ‘allergic’ to hormones – i’ve been on the pill for years because it alleviates my fatigue symptoms so that I can function for the majority of my cycle rather than only feeling like I wasn’t weighed down under a tonne of water for about 3-days a cycle. I also can’t tolerate stress (adrenaline) or strong emotions (endorphins) – good or bad – they leave me feeling completely wiped out. No other logical reason than this bastard disease makes your body’s reactions to ‘normal’ things so extreme…. I’m really happy… you’ve just run a marathon, rest!. I’m sad… you’ve just run an ultra marathon, Rest!!

    Good luck getting to the bottom of it xx

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