Tag Archives: paramedics

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Need medical detectives to help with my collapses!

I need help from all the smart people here. Any brainstorming and all ideas welcomed.

This morning I had to call the paramedics because I had another “collapsing episode.” Severe abdominal pain triggered low blood pressure and a very low heart rate. I was shaking violently and having trouble breathing, the latter seemed to be caused by the discomfort in my heart. I fought very hard not to lose consciousness. I was covered in cold sweat and my vision was blacking out. But the bradycardia and trouble breathing were the worst. It felt like my heart might just slow to a stop and I would be gone. It lasted for over half an hour — an eternity while panting with my HR in the low 40s when it should have been twice as fast.

The last time this happened, my doctor ordered a heart workup, which showed nothing, really (I’ve put the results below; I don’t really know how to interpret them). What I’m trying to figure out is if there is anything I should look into besides making sure my heart is okay. I’m on BP medication (to raise it), I don’t have POTS (as in, high heart rate)… I am so wiped out today and I can’t believe I just have to ignore these episodes, shrug and move on. What my heart did today was terrifying!

If anyone wants to help me play medical detective, here is the history of these episodes (no other health history included and there was a lot, obviously).

My episodes, as best as I can describe them, are vasovagal syncope. But they’re more complicated than that. It’s not a faint and then BP recovery once I’m supine. Abdominal pain/pressure/inflammation/cramping/spasm = BP and HR crash.

The first one I remember was in 2005 on the first day of my period. I used to have excruciating dysmenorrhea and one month it caused a collapse — on the bathroom floor, cold sweats, shakes, vision blacking out, very low BP. Went to the emergency room, got IV fluids.

This continued to happen once or twice a year until 2011 — and I can’t predict which months or why. It has happened when my period had nothing to do with it, but it was triggered by my bowels. I have had constipation my whole life, the last time I ever took a laxative was in 2008. The pressure/cramping caused the same low blood pressure, near-loss of consciousness result. My best friend held me up on the toilet while firemen filled my bathroom. As soon as my bowels moved and the pressure released, I recovered.

The only time I remember it not having anything to do with abdominal pain was one of the worst times. I spiked a fever and then collapsed on the front steps to my house and the medics couldn’t get a blood pressure reading at all. Went to the ER, got IV fluids.

I need to mention that all of this was pre-ME. An odd thing happened after ME destroyed my life in 2011– the dysmenorrhea stopped. I went 3 years without a collapsing episode, then had a random one in 2014 and not again until last year, once in February from random severe period cramps on the first day of menstruation (I think it might have been a burst ovarian cyst since it was so out of the norm) and once in July from a massive acute bowel spasm that was about a 9 on my pain scale.

(I should also mention that every time I went into full-blown anaphylaxis was at the start of my period. That started in 2001, four years before the collapses.)

The difference between these recent episodes (last year’s and today’s) and the pre-ME ones is it seems to be more about my heart and less about my BP. Both are low, but my BP isn’t scary-low (scary to EMTs, maybe, but not to me). I used to be able to not talk or move because I was so hypotensive, today I made it downstairs to open the door and had more awareness — was monitoring my HR and O2.

The past few days, I had a deep ache in the very bottom of my abdomen. I cannot have bowel movements and am completely enema-dependent with chronic pain and bloating, so I only noticed this pain because it was so low in my belly and deep-feeling. I kept looking for my period, thinking maybe it wasn’t my bowels, but was instead a heavy, achy uterus. When I went to sit up in bed, the pain skyrocketed, maybe my bowel spasmed like last year. I immediately started shaking and sweating, the vagal reaction happened right away. That’s my best guess — trapped gas in my very dysfunctional, SIBO-ridden bowel created pressure, pain and spasm that triggered a vasovagal response. The pain and bradycardia resolved at the same time and so did the shakes and panting, but I’ve been completely wiped out all day. I’m still in a lot of bowel pain now, 12 hours later, but it has moved up to its normal position in the upper abdominal quadrants.

So, any thoughts? With no period involvement, no actual bowel movement, and symptoms so severe that I called 911 (that is literally the SECOND since being sick — 9 years), I can’t believe I just have to ignore it and go on as usual, without answers. I mean, besides the obvious remove my bowel and remove my uterus, but I’m just not there yet.

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Echocardiogram:
There is mild aortic insufficiency. Mild aortic regurgitation is present. There is an eccentric jet of aortic insufficiency directed towards the septum. There is trace mitral regurgitation. Trace tricuspid regurgitation present.

30-day heart monitor:
The vast majority of episodes show normal sinus rhythm without ectopy. Some episodes of dizziness show sinus tachycardia. One PVC and one blocked PAC were observed.

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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.