Cardiology 101: when you KNOW something just ain’t right

Plus a disturbingly accurate guide to handling chronic vomiting

So about three weeks ago this whole SIBO antibiotic epic started to go down hill. It started with the whole body aches and flu like symptoms, once again rare side effects of the antibiotic. Then the projectile vomiting every night began with chest pains. Significantly more severe than my normal.Something just ain’t right here.

Okay so as a side note, and skip this if your squeamish, we have a little “guide” aka the “survival guide for never ending puking when nothing stops it, prevents it, and no one has a better idea to save your throat, teeth, and nose”. Basically here’s the past 2+ years run down. I puke between 4-7am almost every day. I don’t sleep at night, I sleep noon to 8 if I am lucky. If we get a 48hr break it’s a miracle. No amount of zofran, phenergan etc will prevent it and only IV phenergan would stop it once it starts BUT it is an autonomic suppressant so I can actually choke if my stomach is still trying to evacuate everything. So we have to go through a very odd, step by step procedure, to try and halt everything. NO ONE has offered us a better solution yet so here we are coming up with our own.

Step 1: MILK, 4oz at least, knocked back in sips that immediately come right back up BUT it coats my teeth and throat to avoid the acid from burning holes in there or breaking them apart (that’s how I managed to have zero ulcers despite all this during my endoscopy). At this point, more fluid than I have consumed all day orally has started coming up and I’m thinking “where did you come from??”

Step 2: PUDDING, colder is better. Actually shoveling is involved at this point in my brief non puking moments. It thickens things up and attempts to slow the progress of the puking or at bare minimum, encapsulate whats already coming up and keep it from scratching my throat or choking on it. (to clarify here, I’m throwing back up dinner/my one meal or whatever I needed to get my meds down from HOURS prior in the exact same form it went down in. Basically nothing digested properly, it’s still solid). It’s also important to note that here is where things sometimes go south but I have to make a choice. I avoid crumbly, gluten free stuff because I aspirate it into my lungs or my nose. However, sometimes things get stuck together or clump up and I start to choke as it tries to get out. If I hit one of these moments, I have to flood my stomach. It’s both horrific and disgusting but basically I have to chug water down only for it to come right back out and hopefully wash whatever is stuck either up or down. It’s by far the most disgusting or horrific to witness.

If we haven’t slowed the problem here is where normally we would decide either to go for the phenergan Step 3 or go for the ice cream Step 4. Since phenergan is off the table, it’s straight to Step 4: ice cream. It’s cold and it acts kinda like a shock to my burning hot stomach and system, forcing my throat and stomach to contract and slow down kinda like phenergan would. But we can’t jump to it right away or else it doesn’t seem to work. Usually by this point I’m fainting every minute or so and my body is giving out so the puking will slow or stop. It’ll sometimes spurt back out chunky ice cream (gross I know, thanks extra stomach acid that keeps showing up despite my massive number of acid reducing medications) but we head for Step 5: TOAST. At this point we need a cork to stop it and something to give the stomach acid left to work on. The pain is still there just like when it started however long ago (30 minutes to over an hour) but the accompanying headache is usually slightly less bad.

Unfortunately, we have had to add Step 6 recently. Honey or cookies, fast sugars or potato chips. Sounds horrible after all that right? It is but it’s a must because I have depleted everything in my system.

THE YUCKY SQUEAMISH IS OVER

Okay so back to, violent puking = somethings wrong. I noticed while I wasn’t vomiting I started to have Brachy episodes, or low heart rates ranging from the 70s (normal for most, not for me) down into the 50s where I would feel like I’m dying. Tunnel vision, sepia filter vision, fainting, all of it on steroids. I’m sternum rubbing myself to try and help. I’m suddenly even paler than before, white lipped even, for a bit. Well these episodes started happening during and after the vomiting. We were already having to go straight for 12.5mg of Phenergan (half a standard dose which is high for me) and while I always felt bad administering that to myself, this was worse. My chest started hurting and I felt like I was gasping to breath.

Throw in horrific diarrhea for days on end and something is WRONG. Luckily I had a cardiology appt coming up, refused to start my GI’s anti-fungal- so he asked for an EKG, and went physically to that appt and asked for an EKG. Low and behold, I have Long QT syndrome (LQTS) early stages. That’s a very fancy way to say my heart rhythm isn’t acting normal anymore, it’s taking longer to “re-charge” between beats, completely unlike it was in January during my last EKG. No meds have changed. Actually I’m on a lower dose of the IV benadryl (not a good combo with LQTS but not the cause) than I was back then. Only the excessive vomiting and antibiotic are new.

To quickly deviate and explain LQTS comes in two different forms- congenital: aka you will live with it forever because you were born with it or your hearts had something happen OR -induced by something: my case. See in my case it can come from a lot of things, specific medications (Lexapro was one and I was on it for a decade with NO APPEARANCE OF LONG QT), eating disorders like anorexia and bulemia [typically after a long time battling them], or excessive vomiting/diarrhea lowering your potassium, magnesium or calcium levels. The symptoms vary but usually it manifests as chaotic heart rates, both high and low, erratic blood pressure, breathing issues, low O2 saturation, fainting etc. during an attack. Those attacks in severe cases are life threatening especially when ALL the symptoms hit at once and suddenly.

Someone in my support group who also has this (congenital) but a more severe form explained to me their life threatening episode was all of that, add impending doom feeling, and them turning blue with heart rates jumping between 70 and 300. Their explanation of how it was different than a normal “feeling bad” for us was extremely helpful because I was afraid I wouldn’t know when to seek help because it’s dangerous vs just feeling really bad.

Certain medications can directly worsen this condition, anti-fungals being a big one among many many other drugs (my cardiologist does not want me on that sucker without cweekly EKGs and contant monitoring. Plus the alternative medications for other issues like infections etc for these LQTS people are all true allergies for me sooooo Houston, we have a problem. My benadryl and phenergan are not ideal but they are not the cause, they just make me feel much worse and we have to be cautious. Because my QT number is high 300s and not 400-500 it’s not nearly as dangerous but DAMN does it hurt. So we have had to eliminate both phenergan and the ever useless zofran along with the potential of dramamine.

Since this was new, I was hoping it was just the puking and low potassium/other minerals possibly due to me getting virtually no nutrition from antibiotics pulling everything from my digestive system and nothing being absorbed. Maybe it’s two years of this crap catching up to me. Who knows! I called my amazing pharmacist to review all my meds and see if anything I was already taking could be causing it. She confirmed it wasn’t any of them BUT to call the antibiotic manufacture and find out if they had any reports. Well I read the FDA full 50 pg report before calling and OF COURSE they didn’t study if it impacted QT length at all…So when I called it was useless. There pharmacist they had never heard of it developing, no data was available…ugh.

So we have to circle back to why it’s happening and why I’m still vomiting and having these episodes, which are milder now that we dropped to the antibiotic 2x a day [3^rd dose was being lost in the puking anyway] and eliminated even the offer of phenergan during puking. It’s not a fix but maybe it will slow everything down just enough to keep it calm. We speak to my GI soon in the hopes he has an idea at this point. Right now it’s a watch and wait game but unfortunately for me and my lovely anxiety, the constant fear of something going wrong and the danger risks, however minimal, are a system overload for me.

While I have managed to handle MOST of my fears over risks of everything etc, this one is a toughie. Yes, I’m not in immediate life threatening danger. Yes, I’m not keeling over tomorrow and my numbers are okay enough. Yes, I am not in a huge danger zone. But still, I’m barely 27 and scared to death over this. It feels like no matter what we try something keeps going wrong. And while my heart is young and healthy, this is one of those things that, just like new medications or foods at first, I’m struggling with. Because it’s also unlike new meds or foods that I can just talk myself through and even everyone’s reassurances don’t always quell the deep fear seeded in my mind that something could go horribly wrong. It’s just another layer of problems I’m emotionally and physically not equipped to handle yet.

But I guess I’ll just have to get there right?

Stay strong my friends.