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.
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.
That sounds SO scary and I’m not surprised you’re totally wiped from it 😦 As you’ve been having severe uterine pain for years have you had all that investigated? My periods were really painful from the age of 13 and it turned out I had adenomyosis (never heard of that til I was diagnosed with it!) and severe recto-vaginal endometriosis. This was causing chocolate cysts to develop on my ovaries, which would randomly burst and the pain was *excrutiating* and would cause me to pass out.
When my mast cell stuff started in earnest in my 40s, my gynae pain got much worse. As you know, there are loads of mast cell receptors on the uterus and changing hormones in your 40s seems to cause major havoc. I started fainting on the 1st day of my period which turned out to be due to low ferritin stores (tho I wasn’t actually anaemic). My GP didn’t want to treat me as I wasn’t anaemic so I started iron supplements on my own and they made me feel loads better. Just something to bare in mind.
I was also constipated my whole life. While part of this was due to hEDS and a lax Ilio-cecal valve, much was down to mast cell issues. As soon as I started my low histamine diet and started on antihistamines my poop is now normal. HUGE due to overly stretchy bowel, but normal LOL! I go to the loo every day for the first time in my whole life. If I start getting constipated I know that my mast cells are playing up! It might be time to more thoroughly investigate mast cell stuff with a knowledgeable doctor if that’s possible?
My mast cells can cause very painful bowel and stomach cramps. But on a totally different issue, I used to retch a lot during episodes. No-one knew what this was about as I never used to vomit, just retch for hours (sometimes days). Turned out to be oesophageal spasms caused by mast cell prostaglandins, so I’m wondering if something like that is causing your bowel spasms? If you also have endo stuck to your bowel as I do, that could be pretty nasty 😦
If you are permanently unable to poop I’m guessing this will definitely cause gas build-up which as others have suggested elsewhere could cause pressure on important nerves too.
Just some random things anyway to think about. Looks like you need some imaging on your bowel and uterus (choose a place knowledgeable in endometriosis for the latter – they could tell from an MRI on me that I had severe endo and adeno, plus some large pedunculated fibroids which didn’t help the situation!). Hope you get to the bottom of it (no pun intended 😉) xoxo