Paresthesia.

Another day, another attack. I started this past Wednesday thinking it would be an average, uneventful day, as most “hump days” are; Mid-way through my cell biology laboratory, I soon realized that this would not be the case. My episode initiated with me having an extremely difficult time concentrating: I tried my hardest to stay on task, but simply could not focus. I read the same line again and again, but couldn’t comprehend its meaning. My chin began to feel numb with a dull burning feeling (paresthesia) that quickly spread to my entire face and head. It’s relatable to the feeling I get when my foot “falls asleep.” 

I went to the bathroom to examine myself, thinking it could possibly be an allergic reaction (my face sometimes feels hot and numb-ish during a reaction), but my face looked normal with some minor flushing. I became confused and tried to fight the urge to cry as anxiety flooded over me. I returned to class, asking my teacher how much time remained on our experiments. He told me that they would take the whole alotted time because we were fitting two experiments into one lab session. I expressed to him that I wasn’t feeling good and needed to make a phone call; luckily my teacher has a little knowlede about my health problems and therefore is most understanding with my condition and needing to take breaks. 

I called my dad,  a nurse of over twenty years of experience, and explained to him what was going on. I began to cry stating that I didn’t feel right and explaining my reoccurring symptoms. I began to feel faint. My dad thought it could be a possible allergic reaction or an anxiety attack, but I didn’t feel panicked. My breathing and pulse seemed too slow (to me), feeling as if I wasn’t receiving enough blood to my head. I splashed water on my face, took deep breaths, and went back into the laboratory to grab a snack and water from my bag. At this point I had red splotches on my face and chest from being stressed (my mast cell activation disorder causes me to break out during stressful situations and hormonal changes). 

I apparently looked unwell as I was greeted with a face of concern. I felt like I was going to pass out and told my instructor. He instantly became  worried and left the lab with me, asking me to sit down while he called the principal of our campus. He asked me if I needed an ambulance and I told him no, although now I wish I had just gone to the emergency room, given the insight I have now. He didn’t know what to do and was told to call campus police so that they could make sure I was okay and help escort me. I had called my mom and asked her to come get me, although I was hesitant because I didn’t know if this was going to pass soon or not and I hate to miss out on classes and labs. The police were most kind; they got my information, talked to my mom on the phone, giving her directions, and they escorted me to the lower level of the building, carrying my bags. I continued to have a hard time concentrating and I was taking awhile to answer easy questions, as my thoughts slowly gathered. I began having an intense pain at the base of my skull, almost as if I had a headache or migraine in that location, and prayed that this episode would pass soon. 

My mom was finally able to pick me up and drop me off at her house (I live an hour and a half away) making sure I had lunch, a drink, and comfort before heading back to work. I continued to feel strange until I fell asleep; when I awoke an hour later I felt better, but  pretty drowsy and fatigued, exhausted from this ordeal. I fell back asleep for another couple of hours until my mom came home from work and drove me back up to the campus to retrieve my car and drive home. This attack was similar to my episode a couple of weeks ago, except my heart felt like it was beaming and operating too slowly, instead of rapidly. I am puzzled as to what the source of these episodes is.  

I wrote a message to my primary doctor the following morning describing my strange and frightening day. He returned my phone call a couple hours later, expressing the upmost concern. Firstly, after I explained everything, he has become increasingly convinced these attacks are related to some type of heart arrhythmia or malfunction. I have contacted cardiology and have an appointment to be fitted to wear a heart monitor for a couple of weeks in hopes of “catching” one of these episodes. The hope is that we can identify what’s triggering these symptoms I’m feeling and how we can manage them. He then proceeded to inform me that my stool sample results came back and indicated a high level of lymphocytes (white blood cells) in my stool with negative cultures, an indication of many different things that need to be addressed urgently. He advised me to schedule a gastrointerogy appointment as soon as possible to have some more testing.

 It’s been a hectic couple of weeks with the girls (Mavis & Eleven) and myself being sick. I’m praying that things improve and that I can get some answers to this challenging puzzle! I additionally met with my new allergy specialist on Thursday afernoon, who ordered an array of blood tests to see what my mast cell levels looked like and if I have a spice-related allergens. He scheduled me to return to have a skin test performed that indicates whether I have an allergy to certain foods. He wants to test for mastocytosis and create a more efficient treatment plan (clearly what I’m doing currently is NOT working). In addition to my appointment with cardiology next week, I also meet with my new pain management specialist with hopes of managing my increasing nerve pain. 

Trying to tackle everything one by one.

Much love,

Cass

Attack.

I had an extremely unpleasant Saturday night and early Sunday morning as I became awfully ill. It began around 10 pm. My fiancé and I just finished eating and were consuming ourselves in the disturbing, but enticing Black Mirror episodes when I began to have an allergic reaction. My reactions don’t really have a certain substance or food that causes me problems; instead it’s just when my mast cells decide to act up, often with foods I have eaten so many times before and have had no issues whatsoever. Mast Cell Activation Disorder causes my mast cells to react inappropriately including cardiovascular, dermatological, gastrointestinal, neurological, and respiratory problems when attacks occur. I unfortunately have had anaphylaxis to near-anaphylaxis attacks on several occasions and it’s terrifying.

This past Saturday I began feeling flushed and my heart rate began to increase. I went to the bathroom after feeling horrible stomach upset and began having what I call “allergy-related diarrhea.” I know this is probably too much information, but unfortunately that is one of the big symptoms of MCAD: severe diarrhea, intestinal cramping, vomiting, and nausea. I called my husband in to get me my Benadryl: my go-to drug when I begin having reactions. I was covered heavily in hives on my neck, chest, stomach, and back. I quickly took 50mg of antihistamine, but my pulse and heartrate were fast and I began to wheeze a little. I have had bad allergy attacks before and like to avoid using my Epipen unless necessary (as I must go to the emergency room), so I’d rather take 75mg of Benadryl than rush to the ER. I began to calm down and try to slow my breathing. I thought I was doing better. We finally headed upstairs around 12 am and something just didn’t feel right. My heart began to feel pained and heavy. I clutched my chest in pain and then I began to feel extremely sick. My whole body felt numb and felt like it was burning (kind of like how my lidocaine patches make my back feel – numb, but like a slight burning/tingling sensation); I became extremely nauseous and I got tunnel vision. I told my fiancé I need to go to the ER. My heart began feeling like it was going to explode and just sputter out. I became most confused kind of rambling and I told my husband I need an ambulance. I never felt like this before. I was on the verge of passing out and Caleb said my skin was very cold to the touch. I felt so sick and confused. We got up and made our way down stairs as I was mumbling that I had to have my glasses, I needed my glasses repeatedly. When we got down the stairs, Caleb couldn’t find his keys. I sat down on the bench and started taking deep breaths. When my fiancé finally got his keys, I decided I wanted to try to go to bed instead. My heart rate had slowed a little and it was nearly 1 am.

I had never felt like this. The only thing I could relate it to is my atrial fibrillation episode back in 2014- I stood up and became faint with my heart beating uncontrollably fast. I wondered if my heart again went in to a-fib. I emailed my doctor the next day explaining what had happened and he called me immediately that day. He was extremely concerned that my heart had gone into another atrial fibrillation episode. He has put in orders to see another allergist that can do more definitive testing and can hopefully test for reactions to spices. He also put in another order for a heart monitor (my fourth time wearing) to see if I have developed an arrhythmia or am in tachycardia often. Finally, he put in labs for bloodwork just to make sure everything looked okay.

I have known that there has been issues with my heart since sixteen when I went to the hospital for unexplained tachycardia. My meme (maternal grandmother) has a history of chronic tachycardia and she actually ended up having a heart attack recently. My mother also has some heart issues: a murmur and a possible infarction (mild heart attack). I am just praying that I end up making it okay. I want to have a future ahead of me and I would like to have children eventually, so I being healthy (and finding answers) is my number one priority.

Much Love,

Cass