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.
Life On Fire 