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.

*****

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.

Going to California

After two years of being housebound, only leaving my house for doctors’ appointments, never going to a friend’s house, coffee shop, grocery store or cinema, never taking a drive to look at the ocean or waterfalls or mountains, my longest excursion being a 45-minute journey to a doctor out of town, I’m going to California to see Dr. Chia.

I made the appointment months ago after rereading No Poster Girl’s advice for the newly diagnosed. I’ve seen 40 healthcare providers in Washington and really, truly feel that the only substantial help they have been is ruling out brain tumours and cancer. Countless visits, horrendous amounts of money and unimaginable energy expenditure… all wasted, unfortunately. Although, my physical therapist has helped my pain but, alas, I must stop seeing him after Monday because my private health insurance coverage ends.

I based my decision to see Dr. Chia mostly on geographical proximity, assuming that we would have to drive wherever we went. His practice is in L.A. I also considered Dr. Peterson (Reno), Dr. Kogelnik (San Francisco) and Dr. Bateman (Salt Lake City). The latter would probably be my first choice, but it seems she really isn’t taking new patients. I battled between Dr. Kogelnik and Dr. Chia, but decided on Dr. Chia mainly because I knew more about him. I have followed my friend Patrick’s experience with Dr. Chia closely, have read Christine McLaughlan’s articles on Health Rising, and have watched all of the ME/CFS Alert video interviews with him.

In a nutshell, Dr. Chia is an infectious disease specialist who believes enteroviruses are at the heart (or gut) of ME/CFS. I will never forget reading Patrick’s account of his ME onset. He said he had surfed at a dirty beach, became ill a few days later, recovered and then got the Tdap immunization and, 5 days later, crashed with ME and never recovered. I swam in a lake in Virginia, came down with a GI illness a day or two later, recovered and then got the flu vaccination and, 11 days later, had acute-onset ME. We had such similar etiologies, although, I believe Patrick was otherwise healthy and, in my case, these came on top of a plethora of other issues such as working too much, never resting, lots of dental work, lots of traveling, bronchitis, vasovagal syncope, angioedema, anaphylaxis, unknown detox issues, IBS-C blah blah blah. But I knew the diarrheal hell was the penultimate cause and the flu vaccination was the shot that broke my immune system’s back. So to speak.

I was in such bad shape last December, I didn’t think there was any chance of my being able to keep this appointment. Five months flew by and my husband and I hadn’t discussed the logistics of the trip or renting an RV or whatever (I don’t even think he knew I had made an appointment), but, before I called to cancel (because, seriously, who goes to California to see a doctor for an hour?), I asked the good people of Phoenix Rising whether they thought I should do it. They were incredibly supportive and answered with an overwhelming YES! Uh oh. Really? But, at this stage, I’d have to fly. I assumed I’d never fly again. I don’t know what a flight would do to my symptoms, let alone the whole trip. So, I asked my family what they thought and they¬†answered with an overwhelming yes and, not only that, but they all offered to help in so many ways: come with me on the trip, stay in my home to watch the dogs, research rentals, help with money, accompany me to the appointment, donate miles for a plane ticket etc. I was flooded with love and encouragement and, suddenly, for no other reason than I wanted to ride the wave of excitement, I decided to go. If not for Dr. Chia, for me. To know that I could leave this house. To create new memories — even hard-won ones — that aren’t these four walls, this bed, this garden. The truth is, I’m terrified and I know enough about Dr. Chia’s treatments to know that it may be a one-off visit and it will probably be a dead-end. But, I’m still going to do it. And I’m going to close my eyes everyday until my departure date and envision safe travels with stable blood pressure, steady legs, no vertigo, no headaches, comfortable body temperature, no chemical or food reactions, no collapsing or swelling or bowel issues, and good sleep. I’ll write more details in my next post.

Warning: I’m Talking About Poop

I’m not going to lie, I’m scared. Again. Still. I don’t know my body anymore and I don’t know what’s around any corner. The thing I try not to talk about is: every single time I have collapsed on the first day of my period, it was triggered by a morning bowel movement. Also, I have come close to passing out and had the paramedics called twice from bowel pressure/ cramping without having my period. See why I don’t like writing about this and now you don’t like reading about it?

So, for months I have had these little bouts of tight chest and heart palpitations. They come on very quickly, very strongly ~ making me gasp for breath ~ and then leave just as quickly. I finally figured out they were triggered somehow by my bowels. Within minutes after a breathing/heart episode, I will have “movement” of some sort down below ~ maybe even just a gurgle ~ that wasn’t even perceptible when my lungs tightened and my heart pitter-patted. I assumed it was some sort of vasovagal reaction and have been ignoring it.

Well, this past week, I have had an uptick in IBS issues. I don’t know why; I’ve changed nothing with my diet or supplements. With the increased gut distress, has come much more prolonged chest symptoms. This morning, I spent hours with my heart skipping and racing and, once again, such a tight chest that I was spooked. I ate salt, drank water, lay on the ground with my feet up, did breathing exercises, canceled my sleep doctor appointment and kept the phone close. I knew my chest would release once my bowel calmed down, but it didn’t help my fear of the future. IBS is not one of the related ME/CFS conditions that I worry about. I worry about the fibromyalgia and chemical sensitivity (especially since the codeine reaction). But, if things don’t calm down, it’ll now be my prime focus. I don’t want to be on beta blockers or any other drugs to “manage” arrhythmias or blood pressure drops.

Lastly, for a week or two, I’ve been dizzy. This is a new symptom, too. The rooms spins when I move my head and when I just move my eyes all the way to the right or left. Again, if it gets any worse, it will be the number one most debilitating symptom. All of these (drug reactions, food reactions, IBS, dizziness) could make life much more difficult than it already is. I feel like I’m standing on a precipice on one foot… with my arms tied behind my back… in gale-force winds… eyes blindfolded, so I can’t see what new evil is coming at me or from where…

Not sure what I’m grateful for today. When I find it, I’ll let you know.

February 1st Addendum:

I think things are better today. I ate like a baby yesterday (apple sauce, cooked carrots, squash etc.), avoided supplements and I hope things will resolve themselves. Maybe it was just magnesium. I’ve been taking 500mg of mag oxide wondering why it wasn’t giving me any gastrointestinal issues… Maybe it just caught up with me after a few months. My doctor’s only two suggestions were anti-spasmodics for the bowel (uh, no) and a tilt-table test to address POTS. Let me repeat: I will do EVERYTHING POSSIBLE to avoid taking a test that induces scary symptoms that I try to avoid every day of my life just so a doctor can confirm that I get dizzy and sometimes my blood pressure and pulse bottom out. I already know that; I don’t need a test. Unless I have to do it for disability. But I haven’t got the nerve/energy up to tackle that yet.