Before I go into detail about what has been going on with my health now, let me give you an idea of what happened in July of 2019. Skip Down to the red heart (♥) for the most recent updates.
July 2019: I woke up and felt pretty normal, about mid day I started getting some pain in my neck and jaw, and slowly a little bit in my chest. As evening came around I found it kind of hard to breathe so I took a breathing treatment hoping it would calm everything down. After my treatment the tightness died down but the pain came full force through out my arm, shoulder, chest, and neck. My Mom took me to the Emergency room where they checked my heart and making sure I didn’t have a pulmonary embolism. I was cleared later that night and told that maybe it was a condition from my Fibromyalgia side of things called, Costochondritis. – “When fibromyalgia causes inflammation of the cartilage that joins the upper ribs to the breastbone, it results in a condition called costochondritis. The resulting pain may be confused with heart-related pain.”
I went to a follow up appointment 3 days later with my PCP and had high blood pressure and of course my high heart rate (avg. 130bpm sitting).
A few days later, woke up feeling very weird and spacey and decided I wanted to try to get in the shower to help my muscles and all. I started to feel real lethargic and had to call for my mom to help me out. I had severe confusion, high blood pressure, and incredibly high heart rate (avg. 180 bpm sitting) I was very weak so they got me into my recliner. As I laid there my legs started going into spasms, bad cramping, and Myoclonic jerking. I was having such confusion I didn’t know what to do or couldn’t recall anything.
We decided to wait a couple minutes for the spasming and cramping to stop. Within minutes I started to feel a tickling numbness all down my left side from head to toe, I tried calling out only to find I wasn’t really talking or making noise. My mom and sister took me and put me in the car and rushed me to the hospital. They immediately rushed me back into triage, people started rushing around me and started examining me, starting IVs, and doing all types of test on me. The doctor called out that I was an 8/10 on the stroke scale and to rush me back to the scanning machines. After about a total of 8 hours of me being like this, they told my mom that they didn’t see any signs of an active stroke so they thought it was a TIA (Transient ischemic attack) because my symptoms resolved for the most part, unlike a full on stroke where there will be significant damage done for a long extended period of time.
They didn’t know what caused it so they took bloodwork to check for everything and anything and test after test.. head to toe, inside and out. They thought maybe it was my Migraines. However, My cardiologist wasn’t convinced since I’ve had heart problems in the past and at birth, and wanted to do a bubble test of my heart to check for any type of holes, tears, or injury. He came back in after my test, and told my mom and I he saw bubbles through my heart on the test. He was concerned on what to do next because putting in a plug or catheter would do more damage to my heart because of my connective tissues. I was hospitalized for about a week, He wanted to do a transesophageal echo (TEE) to get a closer look at my heart. He cleared me and said it surprisingly looked good and he saw no holes! There have been occasional problems since then but nothing too big or concerning.
♥March and April 2020: I started, was and still am having constant headaches sometimes migraines, my emotions and mood were fluxuating, and ive been having terrible memory loss and trouble recalling what things are right away and eye issues. I was having trouble recalling things I’ve done earlier in the day like talk on the phone with my doctors.
About a week ago I had another heart attack like episode that was like the one I had before but maybe worse. I decided to stay home and suffer it out, because the whole Covid-19 would have put me at more risk going to the hospital, and they wouldn’t have been able to do much for me. The severe cramping in my jaw, neck, arm, and chest continued strong for about 2 hours, i then took tylenol and it calmed down a bit. I woke up the next day and could still feel it but it wasnt as severe.
We too now believe i have bleeding ulcers, excruciating pain that doubles me over and makes me sick. Couple days later I had yet another episode that lasted only about 30 minutes. Everyday my symptoms of my ulcers continue making me sick all the time and cause me so much pain. I was supposed to get GI imaging done last month but they cancelled it due to the Covid-19 pandemic. They put me on a medication to help try and control it, which I hope it helps and works. I worry it may do some deep damage but am hoping for the best. With all of these mood changes, memory loss, pain episodes, ulcers, eyes etc. really does concern me. I was doing pretty with my health for a while and all this comes along so quick. It is quite scary but my doctors are in contact with us trying to figure stuff out. If I got through all the health problems ive already faced, I can get through this..
I ask that those of you with Chronic Illnesses please, please, PLEASE always take major concern to things that don’t feel right and feel wrong to your body and talk to your doctors and get them checked ASAP. No one knows your body better than you do, something feels out of sorts take the actions to get the help you need.
I apologize if somethings don’t sound right, I was trying my best to process this into words for you all
~Stay Beautiful! ♥
-Cassie
Ehlers - Danlos Syndrome 