A fair warning of cursing ahead

September and I have a very bad history. It marks 3 years since my life imploded thanks to a jellyfish. It also marks another anniversary of something I have rarely covered, my mental health. If you’ve been reading my latest posts you might have noticed a more cynical, depressive tone taking over. That’s pretty common as the hell that is September comes.

But this year we throw onto the flames more trouble brewing, my latest cardiologist appointment didn’t bring fabulous news of a reversal of this prolonged QT. It’s in infant stages, meaning it’s not a severe, life threatening right now, oh lordy we are in danger, level, but it’s of concern if it sticks around. Throw onto that my repeat EKG showed abnormal T waves (aka hearts doing something mildly odd but we aren’t sure what or why). Even my “adjusted” number (meaning they account for your heart rate on top of your rhythm) was IDENTICAL to my previous. My doc had never seen that one before…shit. And this whole qrs-t abnormality that popped up is also another bad note. Again, infant stages, cardiologist isn’t panic stricken or concerned now, but if it hangs around or gets worse, it’s not good news. (to explain the short version- your heart is super complicated with how it pumps and the electrical currents running through it to make it pump. A long Qt means its taking longer to recharge between beats than the average person. QRS is is ventricular depolarization, and each letter is a part of the heart depolarizing. The T is the repolarizing portion. Here’s an entire paper devoted to understanding it if you need some confusing reading: https://www.ncbi.nlm.nih.gov/books/NBK2214/ )

However, an abnormal QRS-t long term or a large one/number is an indicator in patients for sudden cardiac death or complications. So a small one suddenly appearing doesn’t exactly make me feel great. I’ve got a nifty over priced cardiac monitor glued to my chest for a month with stickies that itch (thanks mcas for the adhesive allergy) and wires that tangle. The positive? Someone is literally live stream watching for my rhythm to jump out and calls my doc if something looks bad or weird and they’ll call me if it’s serious. So that’s one reassurance. However we are on a first name basis with the techs at this point since every single time I press the passed out button (my ever glorious fainting filled puke episodes) they have to call, get my symptoms and try to send me to the ER. It’s a nightly adventure.

But what isn’t reassuring is the fact that this kind of shit is dangerous and while I’m praying to the universe it’s malnutrition causing this, there’s a dozen other things that could be, and it wasn’t the antibiotic I had to be on. Oh and it also means I am STILL limited to things I’m actually allergic to that are safe to take for infections or whatever else and no anti-nausea meds. I have to avoid anything that could get me sick, even a common cold is serious business. I do get to try this lovely anti-anxiety multi med that my doc researched in the hopes it will stabilize my heart rate and help with the vomiting induced by my chaotic heart rate irregularities.

AND we are trying a new way to get benadryl continually infused into me from my Mast cell doc, which is sort of working. But back to that nifty multi med, it’s new (ish, I’ve had a version before for high heart rate pots attacks) to attempt to add but SURPRISE it messes with your digestion and slows gut motility. And my GI? STILL FOCUSED ON THE DAMN BENADRYL AS THE PROBLEM. This medicine holds a higher risk for causing issues…

Okay so back to why September sucks more than anything.

Mental Health. Period. I haven’t told this part of my story before and very few know it. Part of that was because I was bullied in high school over it, and in college, and in the “adult world”. I’ve been judged over it and it’s deeply personal. So why in the holy hell would I put it out there on a public platform? Because if just one person like me sees this, just one person doesn’t feel alone, then I have done something. Because these kinds of resources weren’t there for me as a teenager or kid. And Because it’s time to remove the stigma around mental health conditions overlapping with physical ones and the stigma in general. Whether you take medications or not. Whether you’ve got successful help or not. I’m very much over the divide. Slap some wood and ropes together and cross the damn bridge and meet in the middle. For everything. Mental health conditions and physical ones can overlap, cause each other, and also occur simultaneously but have nothing to do with each other. And I am tired of being told something is “jsut anxiety” when I’ve lived with anxiety for over a decade and know the difference.

So What’s my story?

Hold your hats, Here we go.

Way back in 2008 before I graduated middle school, I spent my 14^th birthday having my appendix removed and blood from a ruptured ovarian cyst removed. I got handed a PCOS stamp and told to start birth control ASAP. So we did. But the year PRIOR to this, again my 13^th birthday, I got handed the CRPS diagnosis and thrown on a tricyclic anti-depressant to treat it instead of a hospitalization and spinal block (my nemesis amitriptyline). Throw in that withing this next year leading up to 14, I lost 2 grandparents close together, developed panic attacks, AND we learned I had ADHD and dyslexia, and I was a right mess. I was seeing a therapist to try and work through some of this and bless her for being there when everything imploded.

So the birth control went terribly. I spent my summer sick as a dog puking every morning. Then I became almost catatonic with depression, or so we thought. A psychiatrist didn’t listen to a family history and threw…you guessed it, amitriptyline back at me! 3 weeks into starting high school and I’m already out for a week with a virus. I finally get back. And it all goes to shit. Most of that day in September I don’t have exact memories of, mostly a dream like state. But to sum it up, I lost my shit. Full psychotic break with reality, absolute manic breakdown, coconut was involved somehow. Off we went to a psych hospital for adolescents with my psychologist in tow (because I kept crying for her) where we waited for SIX hours to be seen. By then I was so exhausted I was half asleep and delirious. They recommended out patient therapy and sent me home. The next day I had a nightmare filled night about someone taking over my body, saw my psychologist, and off we went to a different psych hospital in the hopes they would help address what in the ever loving fuck was happening to me. 8 hours later and I’m checked in for the worst week of my life.

To my parent’s credit, they knew they weren’t equipped to handle this. Something else was going very very wrong in me. My first night was awful. The staff was rude and yelled at me. I’d been on that horrible amitriptyline drug for months and it makes you sleep and suddenly I don’t have it and can’t sleep, I’m having panic attacks, and yelling DOES NOT SOLVE THIS. Plus you have to sleep outside on the floor so they can stare at you (apparently this hospital was more of a suicide risk hospital than other mental health issues…). The next day you’re dragged up, weighed, blood drawn, and shoved off to terrible food (and told you can’t sit with certain people or too many at a table…very helpful for depressed teenagers- although I will say the “druggie” girls [weed only..seriously??] basically adopted me and yelled at the babysitters that letting me sit alone was more detrimental to my health than sitting with one extra person and to shut up), and then dragged into a circle meeting where you’re supposed to tell everyone why you’re there…except I have no fucking clue why or what’s wrong with me. They never gave me a diagnosis. So I sound like a nut job trying to stammer out why I’m there. Then groups, and a 15 minute visit with a doctor. Oh and your parents can only come twice a week for an hour and you get one phone call to speak to them.

So great, I’m a terrified kid who is constantly being snapped at by grumpy people and surrounded by anger management and depression cases. I have no idea why in the ever loving fuck I am in there because they won’t tell me, and then they start shoving meds back onto me. As a general note, taking someone off a medicine then throwing them on a 2x higher dose then removing it and swapping to another in 48 hours is a VERY BAD IDEA. My mom had to fight to get a proper diagnosis. They decided I was depressed and psychotic…except I have a family history of bipolar. And to literally anyone whose taken a psych intro course- I was a classic rapid cycling case of type 2. And my mother was calling every few hours to check on me which they offered little to no updates. Being told to walk in circles around a bare gym for 45 minutes is not so good on the whole mental health thing. Nor is being told you have to sit on a couch gender segregated and shut up for an hour, or color randomly, or lectured in group about not giving someone a note to remind them that other people do care about them and suicide isn’t the answer (apparently showing kindness to someone privately is very bad..??).

The only highlight and work around we found for this ridiculous place of misery were a few select people. My minister was allowed to see me daily for “religious purposes” and she showed up. Every single time. Just to check on me and make sure I was okay and relay messages to my mom. I had one early morning/over night nurse who was probably the only guy on staff who wasn’t a jerk. He was polite and woke everyone up kindly and told us where we had to go for morning crap and never yelled. The teacher who let us do school work away from everyone else- that guy was the best. I could hide away from all the chaos and just do school work in a quiet space with a calm and nice person whose only goal was to get us educated. My only other highlight? A med student in rotation who asked to take my case as her case study. She actually spent time with me away from all the other bull shit and asked questions and GAVE ME MY DIAGNOSIS I WAS DENIED FOR FOUR DAYS. Which was extremely helpful and meant a lot. So Doc Celeste where ever you ended up, thank you.

But anyway, back to the crazy camp as I called it. I decided then and there I was going into medicine for sure and going to change how crappy adolescent mental health was handled. I faked my way out of in patient care. I am very good at it as it turns out. And only my mother caught on during my “review” about what an upbeat and helpful person I was…that my ass wanted out and I was not confronting any problems. But I got out and did out patient work for two more weeks before I was stuck with the psychiatrist and at least a new therapist.

Here’s where the story takes a bit of a turn. My mom fought for the right diagnosis, then took me off a medicine that was absolutely wrong for me and causing bad side effect (anti-psychotics) thanks to a family friend whose daughter had been on the same medicine and started the same side effects- risperidol, You are a shit drug. Period.

But I had to keep going back to this shit psychiatrist for three years until we found my current one. Now here’s the real kicker. These medications at the doses I was on basically make you a zombie. A zombie that gains weight doing nothing. And that asshole psychiatrist made me get on a scale every single time I saw him, not look at it, and commented on it. I had always been thin and fit and athletic, but hormones change your body and to have someone commenting on it? Well, turns out that can cause an eating disorder without you ever knowing it until you dig really deep into your past and find out…surprise surprise, years later I found the source of mine.

Anyway, I spent the next 3 months with teachers coming to my home twice a week to bring homework and other school work so I could keep up and re join school in November, right before homecoming where I was on the decorating committee. And yes, I did go decorate but I didn’t go. I wasn’t prepared for it yet. I was struggling in classes, we had to pull me from health class and move my schedule around to put me in Latin over stress filled Spanish, and get a 504b plan in place to help.

My mental health didn’t really improve but it stabilized. I’m missing chunks of my time in high school, teachers names, events, actual positive things…By senior year I all but refused to go back to school. The bullying got worse, I was isolated and not improving. So we loop holed me into college courses and externships so I spent only 2-4 hours a day at school max. I was still being pummeled by drug side effects and my new psychiatrist (who I’ve now been with for 10 years) reduced the medications, considered narcolepsy, and even sent me to a functional med doc to attempt to help balance things out.

I wasn’t healthy. I was in a dangerously bad relationship, I was hiding from the world by overworking myself with a job and externships and literally anything else to get away from it all. I was lonely and depressed and unwilling to see anything positive despite the good things around me. I wasn’t doing well in the college classes and told I was a failure at writing and would never succeed.

But I got into college. All of them. With scholarships. Because of an essay I wrote in 20 minutes about an experience confronting death in an ER and the fact I was determined as hell to prove something and be someone.

When I think back to all that shit year, loosing my Grandmother the day before Christmas, deciding at her funeral I was headed to Transy for college because that university was founded in her Church, working two jobs just to stay away from everything; I feel sad. I have regrets of what I wish I had done. In the moments I could have been a better friend to someone or I could have stood up for myself, I instead get memories of regrets of not being there sooner for the people who stuck around me when they could have used my help. I still hold trivial resentment for never getting to do a senior theater showcase or be in a school production because I was never good enough (although I did get a small theater scholarship for college), never being good enough on the sports teams, never being a good enough academic. Even college holds dark memories and hurt from being left out, isolated, not popular, the weird dietary kid, the always sick kid. It spiraled me for years so deep I didn’t even see it. I never saw the positive where I could have. I saw and remembered the negatives and the pain of never feeling like I was enough.

But then I get moments of memories of things people did FOR me without even knowing the level of impact they had. My high school Guidance counselor who made sure she announced at senior awards (and printed a damn certificate) not only did I get a scholarship to a “top liberal arts private school” but I also had a theater scholarship. She knew I was struggling, yet she came through for me. And for that single moment, I felt special and like I wasn’t a problem. My Latin teacher who was the ONLY teacher who came to every 504b plan meeting for the year and helped me create a club devoted to the love of Latin mythology. The executive council teacher who was always there for me when I was running around decorating for homecoming and feeling under appreciated (I was never in the group photos) and made sure she told me how successful my idea or decorations were. The friends who stayed by me and never hurt me with my secrets.

And by far one of the most impactful ones: my first college professor for august term. I wasn’t ready for college probably. I was already going in thinking I would never succeed at writing. My first paper we had to do for our august term/introduction month? A+. I asked her why, I’m a terrible writer. She explained I was never a bad writer, just not organized yet and how could she punish someone who got their point across even if it got there a round about way? This led to this first teacher pushing me towards the right first writing/english teacher who took the time (as a published poet) to explain a better way to write. I passed with A’s. I still encountered bad teachers, ones who hated my ideas I wanted to write about (jokes on them because my theme for my senior thesis? Written about by a leader in that field two years later almost identical to my topic just way more professional- eat shit jerk teacher, you had to read that entire article and I’m sure attend a lecture held by him), one’s who disliked my struggles, the whole enchilada.

By the time college was in full swing I was still cycling between extreme lows and highs. My eating disorder showed up and started becoming an issue. Anxiety and panic attacks became debilitating. Yet amid all that, the light started shining. I left that terrible relationship pretty quickly into freshman year (only to jump into a few more bad ones along the way), I fell in love with neuroscience, I discovered a passion for Chinese. I got to travel. I got to grow. I got to experience CHINA (amid THREE medical incidents in a single month while there…yet I still consider it one of the best experiences). I found a few friends who may stick around or may not. I learned to stand up for myself and others. I stood my ground against bullies for once (although it was on someone else’s behalf…I think it counts). I managed to pull myself back together after a medical emergency where my university forced me to withdraw for emergency surgery back home (turns out that nasty pcos we kinda just left alone? IT CAME BACK. With disastrous results, bad doctors, long ER waits, and a mysteriously moving surgical staple- a tale for another time).

My parents fought on my behalf to get me accepted back into school, we should have just thrown a law suit in there thinking back. And my senior year, when they finally relented and I was back in school and ready to take on my struggles? I learned and began to understand that all these social issues had nothing to do with me. My mental health? A chemical problem not a me problem (thank you abnormal psychology for that help). My eating issues? Fueled by a long ago fear ingrained in me by a doctor and social pressures. I did my best ever in classes. I wrote better papers, had stronger arguments, was in a theater production, and said F the world. I graduated after missing an entire semester of school in 4 years.

I came home and got my health back in order. I started to heal. I found a balance. I reconnected with the right people who believed in me. I realized the friends I should have been paying more attention to, the true blue friends? They were still there. They never left me. I got a job, I moved up quickly, I scored incredibly well on GREs, I planned to go to medical school after extra courses. I still struggled with loneliness and a lack of friends, Isolation and not being included even in casual friendships. But I moved forwards regardless, determined and fueled by a level of strength I developed and crap ton of spite.

And then came fucking September and a god damned jellyfish 3 years ago.

Part of me hates September. It brings back anguish and heartbreak. Bad memories and days of tears. But part of me is learning to accept it. Part of me has to keep saying- this is pushing you in the right direction. Part of me HAS to believe everything happens for a reason and as much hell as I have been through, there are plenty of others who have faced that and more. The only reason I’m too stubborn to let this never ending cascade of conditions take me down is because I learned 13 years ago that my mental health will always be a struggle, but I, and I mean I, have to be the one in control of it. I have to be stronger, more determined, and a fighter. And yes I am totally letting spite fuel me here, I think I am allowed that one. I won’t be facing down cancer with a bell at the end. Instead I’ll be listing off the number of shots and IV’s I’ve given myself on my CV I send to medical school. Yes I’ll be years behind peers but I have to be stronger and more determined than ever to get where I want to be. To be the change I wish I had all along, years ago, last week, yesterday in the medical world. Somehow, someway, My ass is getting there, no matter how tired and worn down I get.

And I’ll be damned if a stupid month stops me.

So Stay strong my friends

We had a phone visit with my GI a few days ago regarding all the recent chaos with the SIBO antibiotic, my new Long QT EKG adventures, and the general disaster I am in. Unfortunately there isn’t much he can do which is disappointing. And while he is probably one of the most intelligent and on the ore front GI doctors I have ever met, I often think doctors get pigeon holed and stuck in a one track mind.

See, when a doctor notices a trend over and over again, that’s what they are going to look for first. Like diabetes way back when type 2 was just being linked to poor diets or high rates of consumption of carbs and sugar. A lot of doctors who kept seeing this immediately jumped onto the “it must be diabetes” train. And yes I know this because, due to my PCOS, I am at an increased risk of developing pre-diabetes and having trouble loosing weight. I saw an endocrinologist just to check and immediately she was all over my diet not being correct and needing to loose weight. As a general note, at the time, I was a gluten free vegan…on organic only foods and cooking for myself, never eating out (still never had a pizza delivered). Not sure how that is exactly a “bad diet”. And to neither my or my fathers surprise, my labs and markers were all perfectly normal and healthy. Heck my cholesterol was perfect and the good cholesterol was in excellent range.

This exact same scenario happens in many Dermatologists who see 100 skin cancer patients a week. They can get a bit “scrape happy” as I call it, removing anything even remotely suspicious, but they are stuck in that rut, not able to think outside that box. Even my infectious disease doctor is on a Shingles kick. Everything is shingles. My dads allergic reaction- shingles. My two tiny finger dots- herpes or shingles (it’s neither…I asked my OBGYN who has seen it all). My new EDS scar that popped out like a hernia and hurt?-Shingles…

So when it comes to GI doctors, there is a rut. One size only for gastroparesis. Only problems with solids are a thing. You get the picture. Well my GI is stuck on the “SIBO causes most of the problems and if cured, your gastroparesis will improve. And If we add a laxative at the highest strength, then it will move your gut along and empty your stomach faster as well…” not exactly the case but okay. Their facility has seen hundreds of patients who are probably much healthier than I am and suffering from SIBO and when they get help, instant relief.

There’s also the IV benadryl debate among all my doctors (anti-nausea meds and pain meds too) because it is an anti-enemic aka it slows gut motility and being off of it will resolve things or improve them…except this problem existed well before any of my antihistamines or even IV benadryl was in the picture. Things got worse coming off my SSRI anti-depressant that I’d been on for a decade (this class of medicines actually treat gastroparesis to a certain degree). So you throw this into the mix and it’s a massive cluster. There is not anti-nausea medicine thats’ safe that won’t slow my gut, no pain medication to reduce the suffering because it…slows the gut, and the benadryl, of which the dose has been reduced, is apparently part of the problem even though it’s used in Gastroparesis to avoid stomach spasms after eating and prevent immediate vomiting/rapid emptying [something that happens in some cases where either nothing moves or when it does it just runs through without digestion].

So we are back to square one again. All tube options are out. At least we learned why: NJ (nose tube) can be thrown up easily; G or Peg tube only works if your stomach works but swallowing is an issue because it goes into the stomach…not helpful in my case; J tubes attach the the jejunum which is free floating intestines and tethering it to the skin for a tube results in lots of pain, adhesion, and even more problems, so they won’t even consider that one, the most ideal for me. Okay so we are back to the “is TPN or PPN, Iv based nutrition, an option?”. Nope. The monitoring is insane and with Long QT the IV inclusion of magnesium, potassium etc can be dangerous. Heck I have to watch out for milk of magnesia [part of my rescue meds for constipation] and monitor myself to avoid palpitations or dangerous problems…Let’s also toss in the dangers of a history of SIBO/SIFO in my gut and completely bypassing the gut for TPN would increase the risk of the bacteria getting out of my gut and giving me a line infection (Actually something no one has bothered to tell us before- this is helpful) and PPN- where you still orally consume some food- is so complicated and risky it’s rarely if ever done in a home setting.

So we are back to what the heck do we do nutritionally? Three words. Elemental Diet supplement. Also known as the worst tasting crap ever. It’s like licking dirt. But My doc wants us to mix that with my current boost style supplement, of which I might get 4oz a day down on a good day, to try and help. But again we circle back to my issue, liquids don’t move out of my gut. Pudding does apparently, but solids are sluggish and liquids slosh until I’m so nauseated I’m puking a days worth of fluid back out. And with zero anti-nausea measures, it’s a battle. It’s become so much of a battle my mother has some kind of internal sensor when she KNOWS the actual night time wont go well and can’t sleep until literally minutes before I start puking at 5-7am.

In case you need a laugh, our families level of exhaustion and dealing with this involves the following: Me going “oh shit I’m going to be sick”, grabbing a bucket next to my bed and hollering into a baby monitor. My mom half falling down the stairs in a medication induced trance trying to find me in the dark, the milk, and make sure I’m not choking all at once. And my dad stumbling down half dressed and confused where he needs to be and needing to pee. There’s bucket swapping, back banging to clear my throat, the great search for cold pudding if there is any, an eventual rush for digging out ice cream in a pull out freezer with a broken door, and a mad scramble for headbands, saline for my nose, tissues, towels, and the ever present “catch the fainting jessie before she falls off the bed”. We don’t need a script writer for the comedy level we have. My poor dad ran into his door the other night and caused a huge crash trying to get down the stairs to me…which caused my mom to startle up and run to him, me to get startled and faint then puke more, and a bruise for dad.

But back to the GI. He’s pretty sure this is autonomic neuropathy that is progressing through my system yet there is no way to measure it exactly and it’s barely understood. No one is specializing in it because no one knows how or why it happens or how to measure. There isn’t a GI in the country even looking into it, and yes he has searched for one. Neurology-GI doctors kinda aren’t a thing. They only overlap with vagus nerve damage where the damaged nerve is impacting the gut. But it stops there. No one wants to do two long residencies of two things that apparently rarely overlap. Although this is about to change.

To make the hits worse- there is currently NO ongoing research, medical professional, expert, or even a test in development that is looking into progressive autonomic neuropathy and how it impacts the gut and other organs as well as there is zero treatments even in the pipe line. The only thing they know, it can progress through the system and impact the gut and eventually the heart and other organs. Why? We aren’t even sure. IVIG is currently the only neuropathy treatment but it’s exceptionally controversial because it’s hard to see if it actually works (lack of ability to test that), no way to monitor the intensity of results, and no way to know if it’s a life time thing or not. But in terms of change…COVID has caused a sudden massive uptick in dysautonomia cases, POTS patients, and even MCAS cases. It’s FORCING doctors to start looking further and deeper because now this “exceptionally rare, just live with it because you’re a complicated patient” is becoming “not as rare and here are a bunch of no health problem folks suddenly with it”.

Okay so there is hope…kind of. When something shows up in health folks in droves…THEN suddenly everyone’s interested.

Just to toss in extra goodies since I started writing this, remember those fun Brachy episodes I mentioned? Where my heart rate would bang up and down 90s to 60s, I can’t stay conscious, but no doctor seemed worried since its “normal range”? Yeah, those got worse. They now last an hour and we can’t seem to associate it with anything except sitting up for a while or that it’s usually at night. Except I’ve had them during the real day time. At This point my mom has pushed for a cardiac monitor for them to see in real time what happening and hopefully catch these episodes. Part of me thinks it might be hormone linked or maybe blood sugar. We have to lay me down and throw my legs up or wrap them in compression and force honey and cookies down my throat to try and pull my heart rate out of the 60s and keep me conscious (literally the only positive of gastroparesis at this point is it doesn’t allow sugar crashes because it can’t digest those fast sugars actually fast). The vision goes, there are swirly lights, my body goes numb, words slur, my chest aches like I’m being stabbed, and it’s apparently “nothing to be worried about”. Nothing my ass. You live through it. I’ve lived with my heart rate in the 100s for over two years, then the 90s, then 80s where we stabilized with minor bouncing. But my body isn’t healthy or functional enough to somehow work at 60 beats a minute. And throwing a medicine to possibly stop the fainting at me but is also an anti-anxiety medicine that LOWERS THE HEART RATE AND IS EXTENDED RELEASE sounds like a terrible idea. Standing me up doesn’t work very well either. Eventually, an hour in, my heart rate will stabilize in the upper 70s low 80s and stay and then it’s like it never happened, I just ache all over. So even more chaotic clues into the never ending mess that is me.

At the end of the day the long and the short of it is this: I’m still a disaster, we just don’t have a plan anymore and are limping our way until February at Vanderbilt’s Autonomic Function Center in the hope they’ll be able to figure out something or maybe come up with a better plan. We’ve moved my beta blockers and benadryl around some. I’m still not sleeping well and exhausted, and honestly can’t wait for my period to come just so I might get a break from all this and only have to handle horrifying pain. Because let’s get real, no one will treat the chronic or acute pain, no one can get the nausea under control, and until those two suckers are managed and my heart is managed, I can’t do Jack shit. I’d love to be up and walking, even if I’m fainting every 15 seconds, or maybe rolling around in the wheelchair trying to do something, but even that triggers disasters.

So until next time, where hopefully there is better news, stay strong my friends.

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.

How an overpriced medicine and attempting to treat one problem can lead to another and a simple guide to how to handle chronic vomiting from a “professional patient”

Since seeing my newest GI at the motility clinic, the focus shifted to SIBO and SIFO or small intestinal bacterial and fungal overgrowth. Essentially when you have slow gut motility (like what happened to me) sometime food sits in the intestine without moving or the stomach and the bad bacteria, often from probiotics etc, creep up and out of where they are supposed to be, and start growing. My two colonies appear to be one of your “run of the mill overgrowth” and a lactose based one, likely due to my sole source of protein being dairy for over a year. The fungus, yeast, is probably what came first form who knows what, but these two suckers are just a given among Gastroparesis patients and often trifecta folks with GI issues. Typically you see bloating, belching, chronic diarrhea, malabsorption leading to malnutrition (bad bacteria taking all the nutrition) and some pain. In theory, fixing it improves quality of life but it doesn’t fix the cause.

The problem is treatment. Typically the first step is a low FODMAP diet, except thats unrealistic for both MCAS folks AND anyone with GP because you’re limited to a lot of specific fruit and veg or meat and those are HARD to digest. It also eliminates sugars, starch/gluten, most dairy, and even peas (which pea protein is often an alternative feed base than dairy or corn for GP people). And since SIBO in health people can come from eating too much garlic and onions or probiotic/fermented foods, realistically, they can change the diet and it work. Where it gets dicey is with wild cases like mine. When I overlap low histamine with the low FODMAP diet there’s literally nothing GP safe on there except potatoes, which are actually debated about…So we focus on getting whatever we can into me.

Part 2 of treatment is usually antibiotics with Xifaxin being the top option although it’s usually for IBS-D. By some miracle the manufacture approved my patient assistance appeal and let me get them for free instead of 2.5k for a since 2 week round. And we usually need 3-7 rounds of it. This medicine is a HORSE PILL and I can barely swallow. So, as per the manufacturer, we crush and mix in chocolate syrup and pudding. Its horrific. It’s stained everything oompah loompah orange yellow, it’s sticky, and it’s like licking dirt. But I’m getting it down. Somewhere in here I’ll add the videos and photos of me trying to crush it since it can only be done by hand.

But we hit a problem. This drug is supposed to be Non-systemic, meaning it doesn’t causes system wide absorption and should have less side effects. But as always with me, I have ALL the rare ones. Body aches, inability to sleep, exhaustion, nausea, vomiting, migraine, flu like symptoms. Everything listed as rare. And then we add diarrhea, which was okay except it was dehydrating me even more. Then the vomiting began. At night as usual but way more violent, no stopping it for 45 minutes, and we are shoving my IV phenergan into me as fast as we safely can to try and stop it. Then the crashes started. Heart rates dropping into the 70s and even 50s with a high Blood pressure in that 160/110 range. Turning pale and not being able to stay conscious or breath well. Unable to speak. The scary stuff. And the chest pain. It’s like my heart was banging around non stop and there are just no electrolytes left to keep me functioning.

We started shoving honey and oreos at me trying to force low blood sugar up. It works, but only short term. Gatorade comes back up, potato puffs don’t seem to leave my stomach, and no nutrition is getting anywhere. That make sense though. An antibiotic wipes out both good and and gut bacteria so very little get absorbed into my system from the very little I can eat and fro that what actually digests and stays down. All of this is pretty scary and I’m already on round 2 but we dropped to 2x a day instead of 3x a day because that 3^rd dose was just being thrown up.

But There is more. There’s also an anti-fungal I was supposed to start, but something felt wrong. I checked drug on drug interactions and low and behold the medicine (and its 2 sister drugs) interact with my birth control, PPI, Phenergan (anti nausea meds), and a bunch of other stuff with a “rare” risk of something called Prolonged QT syndrome. The only alternative is a “maybe” for working is Nystatin which Iv;e tolerated before, but it may not be able to get where it needs to due to stomach acid. Despite being on a medicine for a decade that could have caused it, I never developed it. But now things are different. So I held off on that drug and we went to my cardiologist physically. I’ll finish that story later because it does come with some…news.

But back to this insane horse pill antibiotic. Its absolute chaos trying to shovel it in myself (if I could video how funny I look I would) and it’s a mess. I have to keep taking it but once again I seem to always fall into the “if its a rare or incident unknown reported side effect, I’ll get it”. Plus it’s more systemic because of my beta blockers which are a secondary drug that act as a sort of “gate opener” to allow this antibiotic into the blood stream. My beta blockers aren’t the worst offenders but they can cause it “mildly” and of course that means it shows up in me. Which makes the side effects worse. So now we’ve got me, exhausted from becoming totally nocturnal and not absorbing a lot of nutrition, my mom, who hasn’t slept in weeks properly from running down the stairs at 5 or 6 am to get the milk for my puking, and my dad, tired from being dragged up as well because mom needs sleep medicine every once in a while to get any sleep.

So what is my secret guide to sometimes stopping the vomiting before it gets out of hand and also avoiding ulcers? PUDDING and MILK. Okay so look. Calcium is good for the bones but it also coats everything. Any dairy like product actually will do the trick. I start with milk or almond milk to coat my throat and handle the acid that comes up. Yes it comes right back up but it keeps me from choking on food I chewed to death that re-clumped together or tries to come up and aspirate on me. Then its cold vanilla pudding (as a general note, I NEVER want to see pudding again once this all ends. It will be banned, If I have kids, there will be NO snack pack puddings in this house…or toast. Grandma or Grandpa can give them that). The cold and thickness of pudding helps coat more and catch any bits and keep them from going into the wrong pipe. Finally, we start the vanilla ice cream. Ice cream is so cold it imitates what the Phenergan does to my autonomic system in my throat by forcing it to tighten some and cool the burning heat in my stomach. Most of that doesn’t stay down but if we see the hellish spews slowing, we are going the right way. NO WATER. I avoid it because it just triggers everything to start up again, Thin liquids are a problem here and cause more issues than help. I only use a bunch of water if I have to flood my stomach because something is caught and it’s triggering me to constantly keep dry heaving or choke. The last test is toast. I try to get some down like a cork in a bottle. If it stays, it has started to end. If we hit the 30 min mark first, pushing 40-45 minutes, the phenergan comes out to try and force it to stop before the toast trial.

During all this disgusting adventure there is a LOT of buckets and bags involved, banging on the back, and fainting all over the place. My blood pressure is usually very high as is my heart rate but recently that heart rate has crashed lower when I faint and we have to shove things down me to help. Honey is a miracle drug period.

So There’s my guide. After 2.5 years of this I think I might be qualified to offer advice on it. Coat your throat and teeth to save them from the acid. Find a thicker liquid to help, water is useless. And don’t eat gluten free items if you think you might get sick…it just crumbles and goes towards the lungs…

THE PHOTO SAGA

or How to accidentally terrify a nurse, discover epi doesn’t stop you from bleeding, and set off a CRPS flare all in less than 3 hours.

bout a month ago we hauled me off to my twice delayed nerve conduction test and Small Fiber Neuropathy Biopsy at my newest neurologist, (Also probably the most pleasant of ALL the neurologists I’ve had to encounter and the least jerk like). We pre-medicated me as usual because the biopsy involved lidocaine injections and that’s an actual issue for me. I don;t usually tolerate it very well and honestly it barely works. My dentist actually discovered that he had to use Provocaine or Prilocaine (old school versions) and numb my nerve root then wait for 40 minutes and then squeeze all dental work in as fast as possible because it fades fast in me.

Anyway, we show up in the tiny office and explain that, trust us, they want my mom back there with me. No nurse wants to babysit a fainting nightmare like me, who had exactly ZERO sleep prior to this early AM appt, and it wasn’t beta blocker time yet so we knew my blood pressure and heart were going to be chaotic

It should be no surprise to anyone that we barely made it into the room before my sitting in a wheelchair ass promptly POTS fainted onto my mom. Except we didn’t get to explain to the nurse what to expect. So OUT OF THE ROOM SHE RUNS SCREAMING for help. Now, my POTS faints are like these fade outs to gray. I can usually hold some muscle control and I can still hear or see if my eyes get stuck open). Anyway, in come 3 nurses and probably an NP to take my BP and heart rate, it’s sky high and my mom has to do the abridged, “this is every day for us, don’t worry, let’s lay her down and I know when shes going”. Fun fact, my blood pressure did NOT go down for a while…Or my heart rate.

So eventually the Nerve conduction lady comes. She factual and a bit short but does her job well. In case you never get one of these tests (and I hope you don’t), here’s the short version of how it works. They stick electrode stickies at your nerve ends then take a shocker and shock your nerves and measure if it shows up at the electrodes and how fast. It’s also able to measure if there is damage coming from the spinal cord to your peripheral limbs but NOT any central nerves or nerves into the internal organs (where we suspect I have some damage). Then move them around some and repeat. She only did my left leg. And here’s the thing I wasn’t expecting, IT HURTS. It’s deep, strong, and like getting punched hard and burned as they increase the shock. Some of it was like getting laser hair removal on your face but others were way worse. Low and behold, for the next week I was having CRPS flares and it felts like electricity and pain running through my leg over and over again. But those results came back as normal. Which is both good and bad. Good because it means there isn’t spinal cord based damage and nothing in the big nerves. The bad news is the biopsy had to happen.

Luckily I had my actual Neurologist come do it for me. Dude is an artist with that they have to do. He wanted me to be seen at Vanderbilt because my case is outside of his specialty and my cardiologist should review my results from his tests since he asked for them originally. But he also agreed to a brain MRI (no contrast so it’s basically useless unless I have some kind of physical problem up there- we need it with contrast but that means steroids and Iv Valium on standby for my reaction) for my inverted colors, weird vision, and other very odd symptoms, especially the pseudo-bublar affect style symptoms [hysterical laughter or crying you can’t control at incorrect times- it’s usually a brain injury problem but it can also appear with a few weird cases of other things and my Psychiatrist is confident it’s not some magical manifestation of a brand new psych disorder soooooo] and an AAG blood test [autoimmune autonomic ganglionopathy- a rare sub type of dysautonomia that would explain a heck of a lot].

Okay so on to the biopsy, which I though would be my biggest issue. The inject lidocaine (with epi thankfully) into your thigh and your lower leg about 6 inches above the ankle on the side. It burns like heck. Then they literally apple-core your nerve. Like a tiny circle cutter the digs in deep. Of course it takes forever because apparently I have tough skin… By the time we got to my thigh I could feel some of it but didn’t want to risk more lidocaine. The worst part is mom actually had to watch some of it and this is NOT her forte. Then they tweezer out the samples and ship them off. The epi did NOT prevent or stop me bleeding like it was supposed to. Surprise Surprise right?

And then we are done. 2 hours total later and I’m being wheeled back to the car and off to home. I had to spend the next week recovering that left leg being a bitch to me. It;s healing fabulously for such a deep cut but apparently that’s the silver lining of my conditions.

We got the test results yesterday finally during my cardiology appointment (and yes there’s a frustrating update there too). It’s Small Fiber Neuropathy, which is basically like permanent CRPS of sorts but with loss of sensation and appropriate control. The positive? There are some theories on treatment for improvement like IVIG. The negative? It’s not something you can put back in a box like I did with CRPS twice [by some miracle]. And it’s pretty bad. My lower leg scores (how responsive they are) were very low and even my thigh was just barely in the low normal range. Now this is the sting side so that does factor in, but both legs have issues and my arms are starting to as well. Despite there not being much medically that could help, we are going to do every single alternative method of massage, movement and whatever we can possibly do to help me. It also means we can hope that when my Medicare insurance starts they’ll cover me doing the VERY overpriced IVIG.

In other news along with that, my cardiologist NP is amazing. She faxed everything to Vanderbilt’s Autonomic Function center to try and help me get in. And they DID accept me. But bumped me from October to next February due to them wanting not just an EKG, but a Tilt Table test (my nightmare), and now we hope a meeting with a neurologist my cardiologist knows and has recommended I see as well. The biggest concern I now have to figure out is how we safely prep me for that tilt test because it’s very stressful and nausea doesn’t mix with it well. We also have to stop beta blockers for who knows how long. Our current plan is to find out the time frame, appeal for neurologist appointment as well, and get me up there before we have to decrease or change any meds so we’ve got their hospital there and can just try and get me admitted for my safety.

But all in all, we’ve got more information slowly coming in. it;s not changing anything yet, but at least we know.

Stay strong my friends.

So as some of you may be aware, I spent the week after my birthday in May stuck in a hospital room because my body decided food was no longer going to go down. My POTS attacks had doubled, I couldn’t stand without nearly collapsing, and at most a piece of toast and a bite of pudding was all I could get down, if it stayed. The nausea and lack of hunger hit a breaking point on Sunday when all I managed was a bite of toast all day. We headed for the hospital Monday mid-morning.

My GI was out of the office for leave for two months and even my Augusta fill in team wanted to throw me on medications and get me in to a hospital for failure to thrive (although apparently that has different meanings across doctors..). Going there didn’t ensure I would get hospitalized and the 3 hours journey was too risky. So we took my cardiologist’s NP’s advice and went to a hospital in their system with the hopes that they would consult my other doctors. Not exactly what happened.

Part 1: getting in

Hospitals are always chaotic but even as a top priority my mom had to hold me upright in my wheelchair for nearly 40 minutes while they found me a room. The fainting wouldn’t stop, the lights were too bright, everything was swimming, and my BP and HR were in chaos. Once we got in the ordered labs but since my port decided not to play nice with blood return, an Iv line was needed in my sideways crooked veins. That shit hurts, even with my amazingly kind nurse. Some labs and urine tests plus 4 more hours later and theres nothing they can detect but they agree to make me an inpatient. I’ve seen the doctor for all of 15 minutes. My nurse decides to log every single medication we pre packed (go mom) into the system before the only person who can leaves. She gets me fluids through my port, more IV zofran than I would like (it rarely works but Iv is the best option when you’ve got benadryl to take in that IV in 20 minutes). Apparently my mom speaking for me since I was so dizzy and weak was noted as “odd” in my hospital notes. It’s not odd. I am in PAIN AND SICK and she’s my advocate whose there to help interpret my gibberish when it starts and prevent a panic. Also that’s a pretty obvious sign of “failure to thrive”.

I see another guy for 10 minutes who says they will admit me but want to throw me on reglan. I say not without a GI consult first. As a general note- Reglan is a “standard” for Gastroparesis. It supposed to empty the stomach faster and help with nausea and vomiting. It works in chemo patients but there are SERIOUS black box warnings about this drug. All the other protokinetic drugs like it have been pulled form the market and this one, with my history, means I am high risk for tardive Dyskinesis and NMS (neural malignant syndrome). Add in my general anxiety over new meds in general, and I want to have someone watching me the entire time if I’m taking this. That lovely nurse did get my Iv temp line out and even had pure tegaderm as the dressing but it still left a rash…

Two X-rays (very efficient techs let em tell you) and one CT without contrast (I know I’m allergic but ya’ll it won’t show much without it…) and we’ve hit the 9 hour mark in the ER. We finally get wheeled up to a room…without a bed.

Part 2- The first night, the medication drama, and a revolving door of nurses in a new wing

They found me a bed. And a broken “recliner” for my mom. Turns out I was placed in a new wing they just opened. Good for my allergies and sensitivities, not so good because we are missing half the important stuff. We have to go through the same song and dance with every single new nurse: “I have a ton of allergies but it will be specific on what’s a topical vs internal problem on my chart you already have. We have all my meds in a box logged and tagged for ya’ll and yes they should stay in here because I have a specific schedule and I don’t know when you’ll get to me (this is a recurring theme FYI). I also can’t walk so what am I going to overdose on or take? Zyrtec? My mom or dad are staying round the clock because you can’t get here fast enough for me to use a bed side commode every time I have to pee and faint. Trust me, I’m a fall risk but we got this worked out to a science. Also I’m a fun disaster”. Every single nurse didn’t want me to not call them to pee but let me tell you, sneezing is a HAZARD with me and I can’t hold it.

They also all eventually conceded and let me do my own benadryl push and take my meds on my schedule after they scanned them since no one has 45 minutes to do a slow IV push of benadryl with me. And I finally got my dextrose Iv bag (complete with reassurances from my ER nurse its corn derived but not chemically related- bless her for taking the time to check)

But 1am hits, my witching hour, and the nausea strikes. The pain is worse and by the time a nurse gets there all they can offer for pain is a giant pill I have to swallow…cut up…while dry heaving…It didn’t stay down and up comes vomit, pill and all with no milk or pudding to help. Cue a hearty Phenergan dose (I hate that on top of my Benadryl) and eventually things calm down.

7Am- rinse and repeat with a new nurse. My meds are late and the lovely ladies of the kitchen have brought me…a fruit platter. Apparently I am listed as diabetic and the giant fruit tray has everything I can’t eat, digest or even be around. Mom practically ran it out of the room so I didn’t see. She had to explain it’s literally plan toast, butter, maybe some chicken soup, or french fries no seasoning. I can’t get anything else down. Fun fact- this song and dance of spectacular meals arriving that I can eat exactly 0 of and more explanations went on the ENTIRE WEEK. The poor kitchen team even knew I couldn’t eat it but doctors kept changing things…without asking.

We finally get my pills down me. I won’t take the new medicine until I see the GI and get a cardiac monitor (As suggested by my amazing psychiatrist who ANSWERED ME ON HER VACATION) and the attending pops in saying she heard I ate a pancake! I didn’t eat a pancake. I took a bite of a single one…Also my meds are listed wrong and we have to get a label reprinted and faxed to the hospital so they will give me the right dose, they don’t have “clearance” to give me my full zyrtec dose, and trying to get my oral suspension valium for my POTS attacks is a hot mess of them trying to find it in their locked fridge (because apparently its a narcotic…).

Dad shows up as we wait on the GI doc who decides to come at 6pm…Mom has not slept in 36 hours by now. We discuss whats going on, review my reglan concerns and agree to a single test dose first to ensure I do okay before we go up to 5mg 3x a day with a swap to oral if I do. The GI is solid, smart, knows of Augusta (he went there for med school) and of my doctors mentor, as well as SIBO. (At the end of all this the dude GAVE me a full round of my antibiotics for the future use because he doesn’t treat it often enough and had samples). I temporarily stop my trulance laxative (BAD CHOICE: by this point i’ve had only one tiny bowel movement in a week and enough zofran and phenergan to stop my gut from moving for a month.

Mom finally goes home for 2 hours of sleep before having to come back. We go in a circle with nurses again until my nurse from the night before shows up and sticks with me.

Part 3: good and not so good nurses

Day 3- its reglan day. I get my cardiac monitor (which they had to wait on because they don’t have enough), we try a single reglan dose amid my shaking pots attack and my dad holding my hand. I don;t remember much of this day or the next but mainly we ran into some issues. Nurses who were sticklers for the clear cut rules, despite us having clearance for everything we had to do and needed. I get to enjoy 4 “it’s all of a reason” and “stay positive” lectures, and my meds schedule is a mess. And my mom keeps being told to go home a rest…but she can’t leave obviously, nor can my dad during the day shift.

This day and part of day 4 involved a bit more frustration. I start my 3 IV doses of reglan. My appetite isn’t back and two bites of potato or soup do not a meal make. The Day 4 adventure was probably the worst. My nurse kept snapping they have a “2 hour window” to admin meds. This meant I got a dose of reglan and then 2 hours later a SECOND dose, hours before I’m supposed to eat. There are air bubbles going into my line. Normal people these aren’t an issue with how small they are. With me? My body will attack them and send me into a flare.

My meds are late again, my POTS attacks are a mess, and I can’t wake up. The reglan sedated me almost completely. My dad and the attending struggled to wake me and the attending took FIVE HOURS to fix a simple medication misprint so I missed out on a dose of meds. My foods been changed AGAIN to fruit platters and the poor food runner is chasing down toast for me…The GI doc decides to lower my reglan dose.

As a general note- nurses are overworked in general. Especially with this new wing and a dozen patients. But beta blockers are a strict schedule you don’t mess with…ever.

But onto the GOOD nurses before I finish day 4’s tale. We had some pretty amazing people care for me. Some who went above and beyond. One was actually there the night I came in and was the charge nurse for my 3^rd night. It’s port needle change day for me even though I have a closed circuit with continual fluids, we don’t mess around. She agrees to step up and do the change for me. Somehow she got it perfectly (we brought our supplies) and was amazing. She saw my POTS attack start, complete with a startled tech asking why my blood pressure is so so high after beta blockers. She even called the pharmacist on call to get them to clear me for an extra valium dose to stop the attack.

We had traveling nurses, techs who came to recheck my Bp when I asked, and some really good people who I explained to “I just need someone to look at me while I ave anew medicine or one of these attacks and say ‘medically you are okay, I got you and I am watching over you’.” This was also where I learned the under the tongue valium trick because apparently “like rubbing cocaine into your gums, it absorbs faster!”.

Part 4: The last night, the chaos next door, the really good nurse, and The discharge

Night shift nurse on day 4 was solid but chaos was striking next door. Meds are super late and the nurse is trying to get to me and stay with me while I take my first oral reglan pill. The food order my mom set up earlier has been changed again and I have to have my nurse send in the order to change it…not happening. I’m nauseated and just want the toast but can’t have it because I’ve had none of my Ppi and other meds. Apparently, the ER sent up a critical patient who won;t stop leaving bed next door to me. The charge nurse is trying to wrangle the situation. Alarms are everywhere. She sends a tech to find me actual toast. The lovely kitchen team finds me soup. But the news comes, I go home the next day. My overnight nurse is actually an ICU nurse who is apparently one of the few equipped to handle the hypertensive crisis next door. She’s relieved I am a patient with all my meds laid out and have dad sitting right there to handle anything. However, my cardiac monitor is send off an alarm all night. It isn;t working properly or sticking well or it’s broken despite 4 battery changes. 2Am we get to discover just how stretchy my skin is as they try to pull off monitor tabs. I have red blotches all over and the dang thing is in fact broken…

The next morning, despite all the continued alarms next door (it’s a bed alarm apparently and the guy kept getting out of bed with his BP dangerously high…all day and night) and VERY late meds, I get the best nurse. She’s been trying to get to me and I can just tell this woman had stress radiating off her. I let her vent as we scan my meds. In the span of an hour shes had to chase down two techs, yell at one to stay with Mr. bed alarm, argue with another nurse about medication orders, and chase down a doctor through 3 wings. All while reviewing the note that says “DO NOT LET JESSIE”S MEDS GET MESSED UP”. My dad has to drive a single tagamet over because they don’t stock them and it has to be received by a tech or nurse on my behalf from the front desk. But this woman was fabulous. Curious about my case and I wish I had her every day. Reassuring and calm.

The discharge is started. Cue a mad scramble to get the Reglan oral suspension (which the hospital didn’t have for me to try so now I get to go through the anxiety of trying it at home solo) from any pharmacy, packing up all my crap, and then the POTS ATTACK strikes. They can’t give me any zofran for my car ride home. I never saw the attending who discharged me (although I was charged for more doctors and time then I ever saw them…). At this point I want home. My dad has to come pick us up. My tech helps haul all my crap and load me up.

Part 5: Home

I go home. I have never been so happy to feel car sick and crawl into my bed. That night I have to attempt to choke down the “worlds worst orange juice tang like crap” AKA oral reglan with orange and vanilla flavors…Crying is involved and so is hand holding.

Yet amid all this insanity, people came through. Friends brought my mom coffee every day, the dogs were taken care of one night by one of my best friends, and my dad got to enjoy the hospital food (he claims it was actually good).

Hospitals are my worst fear. If you’ve made it this far then you can tell it was an adventure. It’s a combination of being terrified of being dismissed or labeled wrong, combined with a desperate need for help and a prayer they will do something. My case isn’t clear cut. My Labs drawn daily, by very talented and listening phlebotomists who don’t even question when I point to the exact vein and how to get it, didn’t show much other than my calcium level dropping (pudding and milk based stuff was my main protein source) and my BUN level in the trash. I almost wish something was more clear to help.

I hate the fact that a hospital has the ability for people to communicate between doctors but they don’t (they never called my cardiologist or even my Mast cell specialist) and while they handle crisis or routine, the weird and the wild is uncharted waters. I know I am chaos and not obviously bleeding out, but still… I also hate that nurses are run ragged. Give them two techs and a CNA so they can get stuff done! But most of all, I hate the fact I am already labeled before I walk in the door.

A good friend whose an amazing nurse asked me the other day how to talk to patients with chronic pain as she felt like she didn’t know what was the right thing to say to comfort someone or even say the right thing. Why aren’t there more medical people like her? I offered only the best advice I could, listen. That’s all we want. Nurses are there because they have a care for the human aspect beyond just the medicine. They view a bigger picture yet ca communicate to the medical world in a better way and with more respect given (at least it should be). They are the voices and the comfort we need.

So to end my epic journey on a totally different note: after a few days on reglan we cut it down to 1x a day since it wasn’t helping the nausea or vomiting and I cannot take phenergan with it. Eventually after a really bad day of intense muscle spams and charlie horse level locking, we stopped. The risk was too high and we had gotten me back to some type of eating. Mostly noodle chicken soup and specific cheeses to help me digest food (sorta). But a reset button was hit. Rescue laxatives had to be used multiple times, and my GI finally was back in the office ta few weeks later to review our game plan. Now I get to enjoy a disgusting antibiotic mess (I’ll have to cover that another time because the jury is still out on it).

All in all, I survived a hospital trip. A hugely dreaded adventure and we got some form of reset button hit but long term we still lack a plan.

Stay strong my friends

Pain and a note-rant about the opioid epidemic

Before I begin, I will cover the hospital saga at some point soon, but this felt like it just had to be written. I started months ago but now is the right time.

Pain

lets talk about pain for a minute. There’s a lot of different types of pain. Emotional, physical, chronic, acute, you get the gist of it.

But chronic pain is another world compared to the rest of the world. Let me explain.

This is no way is to downplay anyone else’s pain. Trust me, I know you’ve experienced it, hell most people have in some way shape or form. But pain that never goes away, never relents, causes you to feel insane, is a different creature.

Chronic pain means the world I live in involves a LOT of breathing, Now I am no expert but I’m pretty sure I could lead a Lamaze class at this point. Imagine going to a birthing class everyday, every week for like a decade (more like 13 years). You get the picture. But this doesn’t just mean I tend to know how to breath, it also means that if I’m screaming my head off in pain or laughing hysterically (one of the many odd ways that my body copes with extreme pain), it’s some next level shit.

Chronic pain means that no one wants to treat me. I’m considered high risk for addictions because the amount of pain medication required to make a dent in to me is much more than average. And of course, some idiot out there’s solution to chronic pain was “no serious pain meds, because it never goes away, lets give them nerve blocks or surgery or other terrible medicines with horrifying side effects”. And it doesn’t matter if I broke my foot, they’ll take one look at my chart and go “ah, a chronic pain person, you’re fine, here take Tylenol, you’re used to it,’

Of course I am used to it. I live with it every day, but that no excuse to not treat me. I’m not a drug seeker. I just want a five minute rest from the new additional pain.

My pain is a beast. It roars and overwhelms me. Sometimes I can ignore it and leave it growling in the background but sometimes it breaks through. The walls crumble and suddenly I’m screaming. Or laughing. Or crying. Who knows? I’ve got so many coping techniques that you’ve never even heard of that I must seem insane.

But dear doctor, treat me the same as the person in the next room screaming their head off over a bruised toe. Just because I’m not screaming and crying doesn’t mean I’m not in pain, I’m just better at managing it. My 10 is your 20. My 5 is your 10. Me being calm and collected and able to talk does not mean I’m in less pain, less severely ill, or have a less serious injury, I’ve just done exactly what you’ve begged every patient you’ve ever seen screaming their head off to do, “take nice slow deep breaths and stay calm”. So why am I not seen as being in more distress than someone else? Is it because I’m not hysterical? Should I be? Does that get me better results?

Every day I read in my support groups about patients just like me being abandoned in their hospital rooms for hours without X-ray or pain meds because “you’re so calm? How could you possibly have a serious injury?” only to learn HOURS later that someone is septic, or have 3 broken bones, or a serious injury. But we already deal with pain so we’re fine right?

I wouldn’t wish this shit on my worst enemy. It’s something inside you can’t control. You can control touching a hot plate, or a cold foot, or a bruise. You can’t control your entire body lighting up like a Christmas tree on fire inside of you. No one can. And if I could and was magically manifesting random conditions with my mind, I would have healed the world with that super power by now.

I don’t want half assed apologies or “oh I understand”, I want someone to take it and digest what I just said and accept it as my truth. Yes you can relate, or understand. Every woman who has given birth, especially SURPRISE BABY IS COMING NOW moms know, every broken bone sufferer, root canal, fallen off a ladder, person gets it to some degree. But there is a unique difference. You know it is going to end. You know one day you are going to wake up and it’s over. Normal is back. Your body has healed and you feel okay. Your knees will ache every time a storm comes or your muscle and bone will twinge with the wrong movement, but for that moment, then it fades. It will come again yes, but now you know when and why.

So doctor, please listen to me, my advocate,and look beyond just what you think you know.

Now, onto my rant. Get ready, it’s a doozy.

With the latest news about pain medication manufacturers being charged in court (still, this isn’t new, it’s been going on in cities and states for years now) for causing the opioid epidemic, I have serious thoughts and words that many may not agree with. Did the manufacturers and Pharmaceutical companies fail to inform the doctors who prescribe them fully about risks and side effects or addiction? Probably, but tell me this, has anything changed in 30 years with how drugs are repped? Nope. Try asking your doctor for a list of side effects for a medication they prescribe regularly (beyond the common ones which include “headache, nausea, drowsness, etc”) and how to come off the medication safely. I bet they can’t answer that one. We still do not have an adequate standard for coming off any psychological medication, especially SSRI’s which are notoriously hard to come off safely and often result in withdrawal. The current standard “coming off” statement? Cut the dose in half for a week then take it every other day for another week, then stop. Literally the worst advice I’ve ever heard FYI. Only steroids have a step down titration method. Why isn’t this the standard for opioid pain medication?

Add on to that, the standard drug rep (no hate to them, they do their job but they aren’t a medical professional who studied the pharmacology behind how a drug works or read the entire FDA report in most cases) has about 5 minutes to see a doctor IF they get in, and usually they dump pamphlets and samples or host a lunch and hope someone actually comes to ask questions. So really I can’t fault them. Their companies should have a standard that they require to be said and taught to doctors and doctors should follow through. But back to the main issue. The pharmaceutical companies are responsible for doing research and publishing it for public record and the FDA. However, they currently do NOT have to report what occurred AFTER the trials ended and what patients experienced coming off the drug or even how to get them off it. This to me is a system wide failure. Why would you do something if you don’t know how to stop? Would you drive a car if you didn’t know how brakes worked? Or even where they were located? No way, that’s a terrible idea right?

But by holding the pharmaceutical companies responsible for the ENTIRE epidemic and then trying to fix the “opioid crisis” by heavily restricting it so only pain doctors can prescribe them and even then they won’t, is ridiculous. True chronic pain patients do NOT want to live off pain meds, it makes you feel sick and dizzy, constipation and a dozen other problems usually come with it but some days it’s a must. So why is there no approval method for a patient who only needs them for emergencies and can make a 30 days supply last 90 days? No, the real failure here is placing the blame solely on a complex mix of patients desperate for help with real medical conditions and being denied and thus turning to non legal means to acquire help, often dangerous drugs unfortunately, the patients who where given high doses of pain meds but no plan after on how and when to come off, and an even more unfortunate group of individuals who are actual addicts and drug seekers who deserve support and help but often don’t want it.

I could rant on for DAYS about how frustrating this entire mess is. Everyone wants to blame the manufacturing companies who developed these drugs yet there was an actual need for them. When was the last time you had major surgery and woke up with ZERO pain relief after being sliced open? The problem became when these drugs weren’t listed as addictive as they are, some doctors made bad choices for profit (go watch The Pharmacist on Netflix if you want to REALLY dig into this crisis), and the research regarding how to come off never happened. And why would it? It works, that’s the point, it did the job it was meant to do so why waste more money on such concerning topics?

And since many other drugs were deemed illegal, there was a lack of research on why those “street” drugs were so effective and the potential some held, thus researchers in a chemical lab had to synthesize drugs to make it work. I’m still reeling over marijuana being listed as a SCHEDULE ONE narcotic aka no medical usage what so ever and should never be utilized. Yes, it’s listed higher than Oxy, codeine, and even fentanyl. But muscle relaxers and nerve pain meds (my personal vendetta) aren’t listed as addictive….yes they are, news flash.

Regardless of this outcome and the insanity surrounding it, I pose one simple question, why isn’t there some kind of requirement about education for ALL medications for all doctors as well as the money the courts demanded from these pharmaceutical companies instead going into research about how to come off them safer and ways to avoid the body addiction that occurs naturally without your own mental consent. Your body becomes addicted before you know it and you, a chronic pain sufferer, don’t want that, never did. Now you get to battle coming off and if the medication given to you is enough to safely titrate off.

Before I go, I leave you with one last note. Pain is real in so many ways. It can be physical, emotional, mental, and beyond and thus manifests in many ways. I’m not saying hand a pain pill to every Tom, Sue, and Joe that walk through the door, but I am saying, look deeper. Someone calm but in pain is going to be your real in need cases. I can’t count the number of times I’ve laid in bed sobbing over the pain I feel and knowing not a single doctor among my laundry list nor a hospital would do a thing about it, most because they are blocked from rpescribing but others because they fear the “addiction statistic” and my history of chronic pain. I don’t want to spend my life carefully balancing pain relief with my chronic gut problems and Gastroparesis, but somehow they have yet to find a way to alleviate that pain and not force me to be my own doctor of balance. So I call to you the Pharmaceutical companies of the world, the doctors, PAs, NPs and Nurses, educate yourselves and ask the questions. Take the notes and fight for your patients. Fight for people like me who break their parents heart every time I end up in a fit of tears screaming while they know there is nothing they can do and a hospital won’t help (trying to choke down a massive oral pain medicine while puking does NOT go well and I’ve said I would rather just live in pain). Fight for the chronic patients who deserve better and less stigma. Fight for better answers and more research. Fight for us because we are tired, worn down from insults and pain, exhausted from sleepless nights debating what could even be done.

Fight for me.

Stay strong my friends

I realized after my latest hospital adventure I’ve never fully discussed the POTS aspect of what goes on with me. Part of that is it appeared to be manageable on it’s own until last November and the other part was it was consistent, until recently.

Back in November of 2020 a few things changed. We upped my daily IV fluids to 2L instead of 1-1.5 a day. Partially to accommodate my new IV Benadryl but also because I had just been to Augusta’s motility clinic and started on prescription laxatives for my chronic constipation on top of vomiting up all my fluids. So liquids just weren’t leaving my stomach and going anywhere (gastroparesis is great…it makes absolutely zero sense) which meant that maybe my blood pressure was in the tank all the time due to dehydration. We added more fluids and POP, up it suddenly goes. Well past where it should be. Joy, Hypertension at 26…

The Cardiologist we saw in January of 2020 is a POTS specialist and fortunately didn’t make me try and stand to get a blood pressure reading, my number were bad enough just laying to sitting up and my fainting confirmed it. So onto beta blockers I was thrown on top of some rescue meds for when the POTS got really bad.

Here’s the thing about beta blockers, calcium channel ones too, depending on WHY you need them, they can impact you differently. if you take them for anxiety, it’s usually a higher dose to keep the chronic high heart rate down. if you take to avoid or prevent a heart attack, it’s to reduce the load on the heart. In my case it was supposed to both bring down my blood pressure into a manageable range (130/90 is fine with a heart rate in the 80s 150/100 heart rate in 120s is NOT). I’m on a baby dose by comparison and so far it’s worked great on my heart rate, usually. Almost too well. my blood pressure can be fantastic after I’ve slept, but feed me and keep me awake for a while and BAM danger land again.

With POTS, there are a few sub-types and we always thought I fell into the neuropathic (nerve signals aren’t getting back to the brain properly)or secondary (underlying issue is triggering this) versions. But now I’m not so sure. The POTS attacks started to strike in march.

Now it’s starting to look like HyperPOTS aka hyperandregnic. Which means possibly more tests or I could just have a mixed type… Short version? My adrenaline is now causing more problems and kicks in whenever it feels like it. Need to poo? It’ll strike. Sneeze too hard? Here it comes again. I can’t breath or swallow properly. My heart bangs around up and down in heart rate levels, and i can physically feel my blood pressure spike. I can go numb, pale, shaking, sweating, i get pain in my shoulders and neck to the point I can barely move. Then the nausea hits, waves of it combined with dizzy spells and cramps. I faint non-stop when it gets really bad. And then the heart rate is everywhere: dropping into the 70s as I faint before spiking into the 110s and above. That’s pure pain. I can’t describe it other than maybe a mild heart attack, stroke, and seizure all rolled into one.

Except you’re not. Your EKG looks fine, your blood pressure is up and so is your heart rate but that could just be anxiety right? That’s the problem. To the naked eye it looks like an anxiety attack or drug withdrawal. It’s neither. The physical symptoms start before anything psychological and you spend the entire hellish adventure talking yourself down and reminding yourself you ARE NOT dying, having an allergic reaction, choking. You can breath and talk and move so it’s not a stroke. And while my words can turn into pure gibberish, it’s not a stroke.

How do you live with it? How do you explain to someone whose never had this or someone who is only looking at you from a medical perspective and can’t see anything wrong? That you just need time, someone to sit with you and monitor everything, and sometimes an anti-anxiety medicine. Why anti-anxiety? Well they actually are chemically similar to beta blockers and other medications to calm things down in the sympathetic nervous system. Because at the root, that is what a POTS attack is. A massive surge in your sympathetic nervous system behavior followed by a supression in the parasympathetic. This activates the vagus nerve making you nauseated (why sprinters running long distance suddenly can vomit) to try and elicit a response from the body. Your blood pressure rises to circulate more oxygen faster and your heart pumps harder and faster just to keep up.

Now sure we can sit here and compare notes about how an anxiety into a panic attack can do the same thing physiologically. Absolutely that’s true. However, the distinctive difference between an anxiety into a panic attack, is it starts as an anxiety attack and it slowly escalates (and slow can be a few minutes to seconds depending on the person). There is usually a root trigger and if you’ve been through at least a billion hours of therapy you can often utilize those tactics to calm and even stop the attack.. But this? A whole other level. You don’t see it coming. The physiological symptoms start first before you even know it and then suddenly, I DON’T FEEL RIGHT slams into you. Now the mental panic can start. Now the game of “can I calm this down on my own or do I need help” begins.

I jokingly call all this my “sanity monitors”. Why? Well the Pulse OX shows me my heart rate [even the bouncing painful ones] and that i am in fact getting oxygen to my numb extremities. It also gives us a bit of a warning if I’m having a “puke and POTS” adventure if I am about to faint. That heart rate drops and BAM I am out. It jumps back up, I’m back. The blood pressure cuff? Well when you feel like you just got kicked in the chest by an elephant who then sat on you, it’s nice to know your blood pressure did actually spike and be able to retake every 10 min until it comes down. It’s not fun to see the numbers keep climbing while you’re laying down and trying to breath for 20 minutes but at least it alerts me if I am going to need the oral Valium to shut it down. That last thing? My latest gadget, a cardiac monitor. Despite being allergic to the sticky pads [talk about itchy blisters] it can take a record a cardiac rhythm for me and save it. The reassurance I’ve not suddenly developed an arrhythmia [amid it feeling like my heart is skipping beats] and that YES IT IS REAL.

This might seem like overkill or pure paranoia but actually, it’s helpful for me. When you feel this bad constantly, so bad that going to the bathroom is an actual nightmare of problems, the consistency available and records can really help bring down that natural level of anxiety that already exists. I’m irrationally terrified of hospitals. They flat out scare me because I can present fine or actually in the middle of a disaster and no one will do anything. It’s like I’ve got the plague and no one wants to touch that mess. Sometimes what I need on top of testing etc, is a nurse to just sit with you. Tell me I am okay and my stats look good. Unfortunately, moms been assigned that job and, as you’ll later hear regarding the hospital saga, had to basically be the medical decision maker, nurse, tech, assistant, advocate, get-zero-sleep-in-this-god-awful-chair person, and babysitter.

When the POTS attack, it can be as sudden as someone dropping an actually pot or as long winded and terrifying as staring into a literal pot waiting for water to boil. It’s sudden and terrifying. More terrifying than when I go loopy because at least I am unaware. Nope, these I am all too aware off on top of not being able to fully communicate what I want or need, sprinkled with extra sudden waves of absolute terror. Vomiting constantly? i can handle. Nausea every waking minute? sure no problem. constant never ending pain? Big deal, whatever. But this is next level. It’s every warning sign we’ve been told is dangerous only to find out in my case it may or may not be. Hospital or no hospital? Will they even understand?

As Dr. Sanjay Gupta of the UK cardiologist and heart specialist consult so brilliantly has said: “

Medical care for patients who have a diagnosis of POTS remains hugely unsatisfactory.

POTS or rather dysautonomia is a very heterogenous condition. No two people are exactly the same. There is no one single aetiology that can even sometimes be identified. Often the patient who is really suffering looks alright from the outside. Many doctors, largely out of ignorance or perhaps arrogance, don’t even believe in the condition. Many don’t know enough about it to start treatment.” https://drsanjayguptacardiologist.com/blog/mestinon-a-glimmer-of-hope-for-pots-patients/

His entire website is fantastic and informative from a MEDICAL perspective. I love my Cardiologist here in Atlanta, but despite being known and sought after for his extensive POTS understanding and research, it’s like every other doctor didn’t bother to read his memo about POTS.

And maybe that’s where this breakdown is occurring. POTS attacks are a hybrid of both a medical emergency and a psychological one. It requires an aspect of both nursing, the support and care and staying with a patient, and doctors, evaluating what medicine or intervention may be needed. Yet somehow both are missing in POTS care or even understanding. Just like with MCAS and Valium is actually a mast cell stabilizer that can help a reaction, POTS is far too often misunderstood and viewed as more psychological than physical.

Regardless, POTS attacks suck worse than almost everything and it’s downright frustrating, annoying, and terrifying. As more and more post-COVID patients begin to develop these symptoms maybe for once someone will actually listen, but I’m not getting my hopes too far up.

Stay strong my friends.

It really has but a LOT has happened so I guess I’ll just make one MASSIVE update. Unfortunately, I’m not well, I’m actually worse and struggling to type, but it’s time to just find a way to write it out.

Since November I have managed to collect even more diagnoses, because obviously I need the whole alphabets worth of acronym conditions right?

Brief Lexparo update:

I managed to completely come off and we just hit the 6 month mark so hopefully we won’t see a resurgence in withdrawal symptoms. My Psychiatrist is pleased I’ve managed to not have a mental breakdown amid all this. And while my anxiety is WAY WAY up, it’s actually “reasonable” anxiety. It’s grounded in a real experience or occurrence that could actually happen again. So my typical “No Jessie a meteor isn’t going to fall out of the sky and hit you if you get up” logic plan doesn’t work but I can use my ever expanding medical knowledge to work through what I can. My psychiatrist is an amazing human. She’s taken on other doctors who tried to pull the “it’s psych” card [AHEM LAST TERRIBLE GI DOC I AM LOOKING AT YOU- apparently me puking in his office for 30 minutes wasn’t enough to prove I needed help because the none contrast MRI of my gut “didn’t show clear signs of gastroporesis” nor did my colon/endo scopies a year ago before it got bad. Fun fact, it’s rarely clear cut on a simple scan or scope] and will do it again because I have such a long history with her. For once it’s a good thing to hear, yes it’s real and not your fault, from a doctor.

HORMONES:

I felt really bad in January for a few days and the vomiting came back with a vengence (we had it down to only coming from getting startled or a true trigger thanks to the IV benadryl). My main doc was convinced it’s the benadryl. Apparently he hates IV benadryl and doesn’t believe I’m not eating much (or maybe my mothers hysterical or I’m crazy who knows) nor do I have edema. Apparently muscle magically can convert to fat…fun fact, it doesn’t. Tissue types don’t change. And while you can be in starvation and malnutrition/malabsorption mode and not have bad blood labs or rapidly drop weight, it’s because your body eats itself. It breaks down fat and muscle and strips the bones of calcium. Literally the fact I was fit before all this is whats kept my going along with what little shit food we could get down me. You can’t just live off IV fluids or water with all my conditions.

ANYWAY, rant about that over, I am still not over it but I’m tired of being told I’m not sick because I’m not an emaciated skeleton… So I insisted on thyroid labs being drawn because something out of the blue too similar to a specific time frame in my cycle is just too odd. T3 and T4 are way up, but TSH and TPO are normal [so we don’t know why they are up or if it’s an early stage of a thyroid conditions because there are 2-3 who all start the same way]. My OBGYN (I also love her) jumped in and asked for a retest in 3 months to see if anything has changed or just a fluke. Nothing changed 3 months later, T3/T4 are worse but still no TSH or TPO changes. Perfectly normal. Other extra labs like Sed. rate and ANA are also normal and my white blood cell count was only mildly up (although my eosinophil count keeps slowly creeping up). So no answers yet but there’s just more funny business going on.

{Info for anyone who doesn’t know about those tests- TSH is thyroid stimulating hormone, its how active it is and a high number means too active, very low, under-active. either can initially trigger high T3 T4 which are 2 types of your thyroid hormones in your body. TPO is for thyroid peroxidase antibody- aka it means there is an autoimmune thyroid condition causing your numbers to be up or down. graves and hashimotos are the most common hyper and hypo thyroid conditions, respectively. ANA is anti-nucleotide antibodies- it’s typically for auto immune like lupus etc but can indicate other things. a negative result is a good thing. Sed rate is for inflammatory markers in the body. It’s just another one that goes along with other tests to rule things out. I was fortunate enough to have a wonderful nurse friend suggest these to just rule out the chaos}

MAST CELL UPDATE:

I finally managed to get in to a Mast Cell allergist specialist who is fabulous. This was only because of my EDS/HSD (hypermobility Elhers-Danlos) diagnosis from the geneticist. While we’ve never met in person because her office is almost an hour away, she’s immediately jumped in. We upped my Zyrtec to 4 a day, added IV benadryl 3x a day, and started trying to figure out what else is playing a role in all my problems. At first the Benadryl played a huge role in slowing the never ending vomiting episodes and actually getting me sleep at night rather than all day or no sleep. Since then though, it’s gone back to a disaster, but I’ll cover that later. She’s an absolute beast when it comes to her massive overflow of patients and despite having POTS herself, she fights hard for her patients. She even apologized on behalf of the entire medical community for how badly I and my family have been treated and ignored. It’s the same story every patient with this she has has told her. But this Doctor is determined to protect us and for once, I feel safe with her on my side, even though she doesn’t have hospital privileges (this is now a problem but again..later)

CARDIOLOGIST:

Yup, I finally got in to one who is THE POTS guru. He didn’t even need to tilt table test me to prove it. Although he did say it would be helpful in the future to see what exactly is going on second to second but didn’t want to put me through the trauma of it for something he already knew. Just me laying and sitting up rapidly showed my blood pressure and heart rate skyrocket [finally my body unveiled what my brain overrides at every doctors office because I have to try to advocate for myself]. What’s interesting is I have been battle low low blood pressure for the better part of two years (80/60 heart rate in the 90s with both skyrocketing when I get vomit-sick). Suddenly it’s high, 140/90 and above. His theory? Since we upped my fluids to 2FULL IV bags every day I am finally hydrated enough and my blood pressure is showing its true colors. He familiar with MCAS and EDS and even confirmed it was for sure EDS because my skin was basically translucent and you could see the blood vessel webbing (also comes with POTS but its usually during an episode). I explained my distorted vision, the curving on the edges, inverse colors, feeling like I’m on a boat 24/7, the floors moving, and the fading out episodes, which he actually saw 2 of and even took my pulse immediately. He also agreed I’m fluid filled. There’s clear edema and redness in my legs after sitting upright and despite it not being “pitting edema” (the type apparently all docs think is the ONLY type) its “third spacing”. AKA fluids in the wrong place and we can’t get it out the traditional way.

His conclusion? It’s 100% POTS, hypertension from POTS, Physiological Autonomic dysfunction [Dysautonomia] and I needed to start beta blockers ASAP, increase salt and fluids (luckily we already had the port and fluids going), along with an echocardiogram. [The echo is because many people with EDS, even those without the vascular sub-type, have an increased risk of their blood vessels getting “stretched” due to excess collagen and the heart working too hard. The echo makes sure my heart is working properly without any indication of deterioration from working so hard for so long]. Echo was normal and I managed to tolerate the beta blockers as we slowly titrated up. He also threw in Levsin, an anti spasmotic/anti-anxiety/basically does a ton of stuff, drug, that he has found not only helps with the fainting episodes, but can help during POTS attacks and the nausea from the Vaso-vagul involvement. [Let me explain this part- the vagus nerve is a major communication pathway between the brain and the gut. Signals get sent out via the autonomic system which runs everything you don’t control, breathing, digestion, heart rate etc. If the brain does not get a response back, it sends more signals and eventually just hits the panic button. This leads to more fainting, higher or crashing BP’s, nausea, vomiting (because we are now in fight or flight mode aka sympathetic distress, and everything not essential like digestion is shut down. Just like someone running a marathon with zero prep but absolute terror, they will vomit to evacuate the non essentials.) and just overall physiological anxiety symptoms. A link just in case you want to read more: https://myheart.net/pots-syndrome/%5D

My GI team has actually said the same thing about the vagus nerve being involved [more on them later].

We followed up a few months later with his Nurse Practitioner via a video appt and we had to up the night time beta dose since my BP was rising at night and I’d developed a weird cough. Last Friday we had our third appt, again with the NP, but this time something wasn’t right. My POTS is out of control. I’m fainting, migraines, nausea 24/7, tachycardia (rapid heart rate), chest pains, can’t breath, the whole nine yards. And she witnessed it. She wanted me in an ER but we had to explain it’s not really an option for me. They send me home and say its psychological or to follow up with someone else. So we added another dose of oral valium, took the Levsin (now with regularity), and tossed a weighted blanket on me while I laid on my side to bring it down. Apparently the simple stress of no sleep, needing to have a bowel movement, not being able to eat [we’ll get to that I promise], and trying to function sent my body into overload. I developed what is dubbed “coat hanger” pain [across shoulders and up the neck] which is a key indicator it’s a POTS thing and not an allergic reaction (they both have some similar symptoms with me so it’s confusion and terrifying).

Both her and the Doc have said we need to get my GI issues under control or else they can’t do much more for me.

NEUROLOGY again:

Cardiologist wanted me to see a neurologist for small fiber neuropathy biopsy and autonomic function testing. The woman he wanted me to see just so happens to be in the same practice as the first neurologist we saw when all this start almost 3 years ago (the one who said my memory loss is PTSD and lyrica doesn’t cause memory loss…it’s the number one side effect). Unfortunately, despite apparently having a “patient advocate” who handles patient transfers, they denied allowing me to swap doctors. Even after I said I refused to see that guy again, the other doctor was physically closer to me, and my CARDIOLOGIST WAS INSISTING ON THIS SPECIFIC DOCTOR (she runs in the same circle as both him and my mast cell doc). Apparently their version of advocate means just telling patients no…

Regardless, I ended up with a different guy who knows nothing about any of my conditions but at least he agreed to do the nerve conduction testing and biopsy [this is to see if the small nerve branches that are in my legs are not sending signals properly and causing some of my issues}. But he said to go to Vanderbilt for their autonomic function center because that’s not his specialty…I just want someone to rule out the really scary autonomic problems.

He did agree to a brain MRI after my psychiatrist suggested we just get another one to check everything. [especially after I explained my new hysterical laughing/crying episodes- it’s called psuedo-bublar affect but it’s almost always occurred with a traumatic brain injury or certain illness/other big bad scary things]. However, we had to delay the testing because I’ve imploded…

THE GI NIGHTMARE:

I’ve been through multiple GI’s near me. They suck. Period. We finally found a University hospital with a Motility clinic 3 hours away who would take my case [after every other “we take complicated cases” place denied me AHEM Mayo, cleveland clinic, john hopkins, we are looking at you]. I got a really solid doctor late November via my mom’s research. He’s familiar with EDS and POTS and how they play a role in GI issues. He’s also familiar with the vagus nerve involvement too. He’s aware of MCAS but not actively treating it. He immediately put me on a stronger PPI [trying to stop the last one resulted in 3 days of straight acid vomit from the nose] and suggested a SIBO- small intestine bacterial overgrowth, test. Additionally, because of my gastroporesis issues he added a prescription laxative called Linzess as the typical medicine for gastroP is actually terrible and does more harm than good for many, especially with my case. Unfortunately, the lowest dose of Linzess didn’t work and the middle dose put me in screaming pain/lethargy for 4 days until we just had to stop. He swapped me to a sister drug, Trulance, which I’ve just started in April. It’s already a mess. We had to cut it in half to stop the severe side effects but it works…although it comes with triggering sympathetic distress/my POTS.

I was supposed to have the breath test and endoscopy with culture in January. COVID hit them hard again and they shut down the entire unit without notifying us. All the nurses were sent to help in the ICU and it was converted into an extra ICU space. We got a surprise delay until the end of March.

We did finally get to go, but the trip was horrific. The prep for the SIBO starts a month before. No Pepto or milk of magnesia. Stop the PPI 3 days prior and no laxatives the week prior. At this point I was reliant on the laxatives to even go so we already knew this was going to be gnarly. The 24 hours prior? The only thing I can have for 12 hours is dry white bread and plain white potato with salt. And water. Which is what makes me sick already…Then nothing on top of all my normal oral meds, extra oral premedications, and dry mouth.

THE ACTUAL JOURNEY

I was premedicated with my normal benadryl plus a scopalomine patch and my half dose IV phergan before we even left. I was hoping to sleep the trip there again like last time. I didn’t. 5 minutes down the road and I’m vomiting acid. We pull over and I have to do another low dose phenergan push [this is NOT a recommended thing but we have no real choice anymore]. Disaster hits. The puking won’t stop, my heart rates out of control up and down, I’ve gone white as a sheet and shaking. At this point I’m thinking it’s a cross reaction to the medications and I still have to choke down a beta blocker and get back on the road because we have to get to a scheduled CoVID tests before I can have my other tests done. I don’t think I’ve ever been that terrified in my life. Watching my heart rate sky rocket then plummet over and over and feeling chest pains it scary enough. Knowing that even an ER might not be able to help is even worse.

We got back on the road. My mom climbed into the back seat and just held me until the beta blocker started to work. I got to discover just how useful adult diapers are (I call them DANGER PANTS- because every fart and sneeze can be risky business) and yes I will state that to the world, because there should be ZERO shame in needing a medical supply for help and NO ONE should ever be bullied or hurt by other over it. Period. [end of that soap box rant].

We made it. Covid tests burn. Dry toast sucks. Premedicating sucks. I got to the testing place and we had to beg for them to let my mom come back with me. Bless my testing Nurse Mika’s heart, that woman held my hand until mom could come back. The breath test involved drinking 8oz of glucose water. Basically the most mouth puckeringly sweet thing ever. It’s a 2 hours test of blowing into bags and writing down symptoms. It took over an hour just to get the dang drink down. Then I started burping grass…literally it was like a mouth full of leaves or grass. But I did it. And then I got wheeled over to the endoscopy team.

Let me just say- I’ve had a few of these suckers but never with all my new allergy issues. The GI teams pharmacist spent the morning going over every vial of medicine to check for my allergens. My GI doc took my mast cell docs call about what he needed to know regarding me. And they even used my port (and let my mom use my heparin because I react to certain dilutions). I had an anesthesiologist I would kill to take with me. That man listened, checked everything, and LOADED me up on meds. Much to the entire endo teams surprise, the diludad did nothing (usually it makes people calm and loopy but not me!). So he adds a bunch of extra anti-histamines and anti-nausea meds fentanyl for the constant pain, and doubles the dose because “that baby dose won’t even touch her case”. One giant syringe of sedative later and I’m getting woken up and puking into a bag. Despite all the meds and nothing in there to puke, I’m puking…They had to throw in another round of phenergan. I felt just fine until all the meds wore off 12 hours later and I’m puking again. Off we go home. A less traumatic trip because there no patch and I puked before we even left the rental house.

They found a decent amount of fluid in my stomach and a small hiatal hernia but no burns or ulcers in my throat (thank you pudding and milk). It’s a 2 month wait for the next appt and the results.

THE BAD NEWS

Except things got worse. We started the Trulance and I was already not well. The vomiting was back with a vengeance. I have no appetite. Eating is excruciating now and I’m almost always throwing up whatever I ate undigested 6-9 hours later. Even eating next to nothing, I’m puking up straight acid. The POTS got worse. We reached out to my GI and he’s out for a few more weeks so a fellow stepped in. It’s SIBO and SIFo (bacteria and fungus, and the bacteria feeds off lactose). They want me on Rifaximin and then Fluconazole to hopefully clear it up. Except Rifaximin is $2400 for a single round and I can’t even keep water down much less an antibiotic that HAS to go through the stomach. My GI team is applying for manufacturer assistance in the cost but we don’t know how to get it down me and KEEP it there. My last antibiotic single round had me vomiting for days.

Then I crashed further. Apparently not being able to eat anything, struggling even over a cracker or toast, means my blood sugar is probably a mess and triggering adrenaline and thus my POTS. I’m exhausted and not able to sleep at all anymore. 3-4 hours total is not enough. Toss in the nausea ramping up to the point of pain and my sheer hunger can no longer override the pain. Every bite is a fight. The pain doesn’t end, it’s beyond just CRPS, it’s my entire gut and stomach screaming. The migraines, photosensitivity and hyper sensitivity to sound, physical shaking, skin on fire sensations, burning yet freezing is misery. I’m choking on tiny pills if they even stay down. I’ve stopped drinking anything unless I have to because my vomiting episodes include 2x the amount of fluid I’ve consumed all day. I feel terrified constantly and the fainting is even worse. Standing has become hard. My period plus zero iron intake is even worse. POTS attacks come every morning and night far more severe than what I’ve handled for the past 2 years. My dads had to just sit next to me for a hour every morning to try and get my heart rate out of the 130s. My blood pressure is 170/110 to 140/90 now.

We’ve called every doctor to beg for a JG tube (stomach and small intestine tube used to put feed and medicines through but also you can drain excess acid if its really bad. An NJ risks me vomiting it up and dumping a lot of liquid into my already fluid hating stomach) or to just hospitalize me. No one will. Last months blood labs looked okay enough that I’m “fine”. Fun fact. I am not. No one is sleeping in this house because the minute someone does, my body throws a tantrum and I’m puking into a bucket. Every doctor has said only GI can make the call but there’s zero promise they will do anything interventionally until I fully crash. An ER is an actual nightmare and danger unless it’s life threatening.

So here we are. That was a massive never ending update. If you made it this far, congrats, gold star to you! We FINALLY got some good doctors who listen but none of them can fully step out of their lane to do something. I appreciate every single one of them for taking my case but it’s a struggle to have a comprehensive approach when they are all spread out and not together. Despite the claims of many facilities that they have a “team” and “comprehensive” approaches they don’t. Instead, it’s a team of smart doctors who are experts in their field spread out but who see a need.

At this point I just pray we can get through, get answers, and get help. My story isn’t unique. Too many people just like me have been through this, are going through this, or, unfortunately, will. No doctor wants to intervene unless they have some kind of test proving something, and even then it’s a battle. A nurse often can point out exactly what needs to be done, but they are rarely listened to despite their exceptional skills, intensive patient care, and experience. It’s almost easier to handle a cancer case because at least there is a set game plan of what to do when something goes wrong or even appears wrong and something WILL be done. It DOESN’T make cancer any less horrific, depressing, frustrating, terrifying, heart-wrenching, life altering, miserable, or dangerous. It doesn’t belittle or diminish the struggles of cancer patients and survivors in the slightest. Far too many people had to suffer without help or interventional care to get to this point where there IS a plan in place and things CAN and WILL be done for cancer patients, just as they always should have. That model needs to be expanded to chronic illnesses across the board where “getting better and fully recovering” isn’t the end goal, because better is relative. The goal is better management, less people hitting crisis points before something is done because it now has to and the relative recovery journey is twice if not even longer, and more understanding and compassion across the board for everyone, with any illness, so the next generation and even my generation can get the support they too deserve and need.

We don’t expect miracles, we just want help before we crash.

Stay Strong.