'When I was 27, I had a stroke alone in my car.'

I am currently 29 years old, and I am a stroke survivor. I never thought I’d be saying that or that I even could be saying that at such a young age, but here I am. My stroke happened on June 27, 2016; I was just 27 years old at the time.

For about 12 weeks before, I was experiencing excruciating head and neck pain. I saw four doctors during that time. They told me I was fine and I didn’t need further treatment. I had no other symptoms.

Hear more from the National Stroke Foundation. Post continues after video. 

As time went on, the pain started interfering with my job. I am a pharmacist at a hospital. I would either leave work early or call in sick to work, which was very unlike me.

Then on Monday, June 27, I woke up with extreme vertigo. Vertigo is often described as dizziness, feeling off balance, and a sensation of spinning. It is frequently accompanied by nausea. Within an hour or two, the vertigo improved, and I was able to shower and go about my day.

Early that afternoon, I went to a homewares store at a local outdoor shopping centre. As I approached the mall, my right foot fell asleep. I thought the timing was odd because I had never experienced my right foot falling asleep while actually driving. At that time, the educated pharmacist in me briefly thought, “Headaches, vertigo, foot numbness; am I having a stroke?” I thought, “No, it’s not possible; I’m only 27.”

When I was done at the store, I went to checkout. The woman at the counter stated, “Are you done? I can help you over here.” The words sounded so jumbled. Difficulty comprehending speech is often another symptom of stroke, so by this point, I was even more sure I might be having a stroke. However, I truly felt as if the woman had misspoken and I had heard the words correctly; I had never heard anyone describe this symptom exactly like this. Given this and my age, I convinced myself not to tell the woman I may need help.

I left the store and as I stepped down from the sidewalk to the parking lot, I almost lost my balance and fell. I was more sure that something was wrong. I planned on going back to my car and calling the ambulance. I got in my car, turned it on, and put my seatbelt on, out of habit. I turned the air conditioning on because it was 35 degrees outside. By this time, my whole right side felt numb, I could tell I had a facial droop, and my vision was very blurry. I was 100 per cent positive my suspicions were correct; I was indeed having a stroke. I immediately looked at the clock to see what time it was.

Identifying what time your symptoms start is crucial when having a stroke because of a drug called tPA, which is a clot buster. This drug can be given in ischemic strokes, which is the most common type of stroke. However, tPA must be given within a certain time frame from when one’s symptoms begin. The time frame is typically three hours, but may be extended to four-and-a-half hours if the patient meets certain criteria.

After noting the time, I lost my speech completely. My arms were in a clenched position in front of my chest. As a pharmacist, I had responded to numerous stroke codes while working at a hospital, and I had not recalled seeing anyone as bad as I was at the moment, which scared me even more. I attempted to dial emergency services, but I struggled to do so because of my blurry vision. I dialled the wrong number. This process continued for what felt like close to 30 minutes.

After finally reaching an emergency operator, I was relieved, but terrified at the same time because I didn’t know how I would communicate. She asked me what my emergency was, and I was able to respond with only a moan. She continued asking questions such as where I was, if I was by myself, had I been drinking or using drugs, and so on. Sometimes I was not even capable of producing any sound when trying to respond. Finally, she traced my call and confirmed my general location. The emergency operator sent mall security to come find me. I saw mall security driving around shortly after and luckily, the man was able to spot me almost instantly. He quickly realised I truly needed help when I was unable to open my car door upon his instruction. He directed the emergency operator to send paramedics.

Two ambulances arrived, and several paramedics surrounded my car. A few paramedics focused on evaluating and communicating with me while the others searched through my wallet and front seat trying to gather whatever information they could. The paramedics realised I was unable to move on my own, so they proceeded to take my seatbelt off and lift me out of my car onto a stretcher. I was then put in the back of the ambulance, and we left for the hospital.

Shortly after, we arrived at the hospital, which was coincidentally the hospital I also worked at. I was rushed into an exam room in the ER. I just remember lots of people swarming around me trying to take vitals, evaluate me, change me into a gown and so on. They were not sure what was wrong with me. The whole time I kept thinking, “I am having a stroke; call a stroke code.” I couldn’t communicate this message so I continued sitting in silence. I somewhat presented as if I was having a seizure, so they initially started treating me for that. Even though I had every typical stroke symptom, they were not considering stroke as a diagnosis because of my age.

My mum arrived minutes later. She realised that I was aware of what was happening and communicated with me by asking yes or no questions. My mum had a transient ischemic attack or TIA, also known as a mini stroke, about 15 years prior. She had experienced similar symptoms, so was able to relate to how I felt. I remember her asking, “Are your eyes painful? Are your eyes blurry?” I shook my head no, then yes. She continued to ask, “Is your right arm numb? Here? Here? Here?” while pointing to three different locations on my arm. Again, I shook my head yes to all three locations. My mum was persistent and insisted I was having a stroke. The staff finally called a stroke code, which alerts several members of the healthcare team to respond.

I was taken for a CT scan of my head and neck. They determined I was having an ischemic stroke in the brain stem and basilar artery, which has a high mortality rate. The CT scan also showed I had four arterial dissections. A dissection is a tear in the artery, which can lead to a blockage in the blood vessel and cause a stroke. My dissections were in the four main arteries that supply blood to the brain. In general, dissections are rare, but having four dissections is highly unusual.

Next, I was evaluated by a neurologist at Northwestern Memorial Hospital via telestroke, which allows a neurologist from a remote location to assess a patient. The neurologist asked me to follow certain commands like moving my arm and leg various ways. He also asked me to identify certain images on cards he showed me. I remember just staring straight ahead, and I was almost in tears from the frustration, fear, and panic.

The critical care pharmacist, who is also one of my good friends, had responded to the stroke code. I remember being so glad to see her because I knew she would take very good care of me. She in addition to the rest of the medical staff and my parents were hard at work trying to figure out if I was a candidate for tPA. Since I had been alone, they had no idea what time my symptoms began. They used my receipt from the homewares store and my phone to identify what time I called the ambulance to ultimately determine I was just within the window to receive tPA. Thus, I did receive tPA. Later on while still in the ER, I was worsening because I was needing to be intubated in the ER. Afterwards, I underwent a complicated procedure to remove the clot and have two stents placed to keep the appropriate arteries open. The doctor successfully performed the procedure, and that’s why I’m here today.

I remember waking up in the intensive care unit (ICU) later and still thinking I was in the ER, though I knew I was at the hospital, which was a very good sign. The next day, I was able to speak again, but it was hard and my speech was definitely slurred. It was also extremely hard to swallow. I could not move my entire right side, still had a lot of numbness and tingling, and was experiencing severe pain.

Emotionally, it was very difficult to process the severity of what I was going through and all the unknowns. How long would I be hospitalised? Could I ever walk or drive again? When could I go back to work? I could not even begin to process that I might actually have long term consequences and disabilities and that my life would be changed forever.

Anne Tonner tells Mia Freedman about the moment she knew her daughter was very, very sick… Post continues after audio. 

On that first Thursday, three nights after my stroke, a CT scan showed I might be worsening. The next day, the doctors decided I needed to be transferred to another hospital. I had an extremely hard time with that news and lots of tears were shed because it brought up so many more unknowns. I was transferred by ambulance later that day. The next 48 hours were the absolute toughest and a complete blur. I don’t remember much; I was in so much pain. I was in the first two hospitals for a total of three-and-a-half weeks, almost all of which was in the ICU. Afterwards, I went to a rehabilitation centre, and I was an inpatient there for another three-and-a-half weeks.

At rehabilitation, I underwent rigorous physical, occupational and speech therapy. I had therapy about four hours per day, six or seven days a week. I was in a wheelchair and trying to relearn how to stand, climb stairs, walk and talk. I could not get dressed, shower or go to the bathroom on my own. I was supervised all the time. I cannot begin to explain how that feels when just weeks before you were doing everything on your own. My whole life had now become dedicated to moving one finger on my right hand, then opening and closing my entire hand, rotating my wrist, moving my right leg, balancing, and strengthening my right side.

My right side was my dominant side prior to the stroke, so I was forced to become left-handed. As a result of doing everything with one, non-dominant hand, I developed severe carpal tunnel issues from overuse, on top of every other obstacle. The pain I still experienced due to the dissections, mainly in the form of unrelenting and excruciating headaches (unlike that of a migraine), kept me abstaining from watching television, reading or listening to music for months.

When I was discharged home, the struggles continued. I had someone staying with me for a couple months in case I were to fall. For several months after, I had extreme difficulty coming up with the right word I was trying to say. I experienced bladder and bowel incontinence for some time because of muscle weakness and decreased feeling. My day to day life was consumed by doctor appointments, trips to the pharmacy, phone calls with insurance, and outpatient day rehab, which consisted of six hours of therapy per day, about three days a week. After a lot of testing, I’ve been told I have some underlying genetic connective tissue disorder, which predisposed me to the dissections.

How have I survived this and gotten to where I am? I try to maintain a positive attitude despite everything. I’ve also had the most wonderful support system, which is incredibly important. It definitely starts with my family and friends, coworkers, therapists and doctors. The stroke team at the initial hospital was amazing and provided excellent care; I cannot even begin to thank the stroke coordinator, nurses, pharmacists, and doctors, as well as the doctor who performed my procedure and his nurse practitioner. They saved my life and I’ll forever be grateful.

The main piece of advice I’d give to others is do not wait if you are suspecting a stroke or just think something is generally off. Millions of brain cells die every minute when you’re having a stroke. I’m talking from experience. My biggest regret is not seeking help sooner. Strokes can and do happen to anyone at any age. Please don’t think you are the exception!

This post was originally posted on The Mighty and has been republished with full permission. You can read more from Erin on The Mighty here, and find her on Facebook, Instagram and her blog.