On 4-21-17, I took my son to get X-rays. I was 37 years old. I’d had a bad headache the night before. I’ve had bad headaches most of my adult life. I’d had MRIs and neuro exams and nothing was ever found. I had no reason to suspect this was any different
I started to feel funny during the x-rays, and felt a headache coming on suddenly. The headache started off as mild and quickly escalated. I wanted to get home to take some Aleve and lie down before work. I somehow managed to drive home as the headache and nausea increased. I got my son and I both inside. I went upstairs, took some Aleve, and fell down. The headache suddenly had become this demon of a thing that was easily the worst headache of my life. I threw up, and knew I was in some sort of crisis. I screamed for the babysitter who was able to call 911. She told them what I told her--that I thought I was having a stroke. I told her I was dying, to tell my family I loved them, and asked her to hold my hand. She told me I wasn't going to die, and cried along with me. I truly believed my number was up. She saved my life by being there and by calling 911. I am also grateful I wasn’t alone in what I thought were my final moments on this earth. It was lights out for me after that and the next 5-7 days have been pieced together by family and friends.
I learned a few things after I woke up and got my bearings. 1) the headache I experienced is called a "thunderclap headache." After having it, the description seems perfect in a horrible way. 2) I had a subarachnoid hemorrhage (SAH) that was caused. Y an enormous aneurysm on my basilar artery. It was 1.5 cm. 3) For some reason, the hemorrhage stopped bleeding on its own before I made it into surgery. This is the only reason I'm alive and no one can explain why it happened. 4) 40% of people who suffer from SAH die before they reach the hospital. 5) 60% of those who survive have major deficits such as difficulty walking, talking, or performing their activities of daily living. 6) Other than being female, I have no risk factors for having an SAH. 7) An MRI I had done 7 years earlier showed no sign of the monster aneurysm. 8) This type of thing is potentially genetic. So now I get to worry about my immediate family having one, too.
The ambulance arrived and apparently assumed this suburban mother of 4 was a heroin addict and gave me Narcan X 2 doses. This is the world we live in now. When I didn't respond, they loaded me up and took me to the nearby hospital (where I just was, getting X-rays for my son). A CT scan showed the enormous bleeding aneurysm. Some of my family made it to the hospital to see me very quickly before I was life flighted to the downtown main campus of the Cleveland Clinic. They told me I was awake and responding to them. I have no memory of any of this. I had emergency surgery to put platinum coils in the aneurysm to stop it from bleeding further.
The next thing I remember, I woke up in the ICU a few days later with a tube in my throat and a severe headache. I had tubes everywhere. I had a Swan-Ganz catheter, and later, a PICC line. I had a drain coming out of my head called an EVD that drained my CSF and the blood from the aneurysm. I panicked with the tube down my throat. The worst part of the ICU easily was being awake and aware of being intubated and enduring deep endotrachial suctioning while alert. I begged to be sedated, for more pain meds. I chicken scratched on paper asking for drugs by name, asking for my fentanyl drip to be turned up. Every time, I was told I needed to be awake so my hourly neuro exam could be completed. It was hell.
My first neuro exam that I remember, they shined a flashlight in my eyes and I felt my eyes going every which way. I was unable to focus. Everything was blurry and double. I saw concern in the doc's face and knew this meant nothing good. I had this symptom for months. I had to wear an eye patch and alternate eyes every two hours so I could see.
I learned I had been extubated a few days earlier but had to be re-intubated immediately due to flash pulmonary edema. I also developed stress cardiomyopathy and my ejection fraction went into the 40's. I was started on intrathecal milrinone. I was told I'd still need to have 1-2 stents placed in the aneurysm.
Everything was terrifying.
The ventricles in my brain weren't reabsorbing the blood and the CSF. If that continued, I'd need a shunt.
I had vasospasms which increased all my symptoms: confusion, headache, blurred vision, nausea. The neurosurgeon went back into the aneurysm and injected it with verapamil to try to stop the vasospasms. Eventually, they stopped. On 5-18 I received my shunt after CT scan showed my ventricles were still enlarged and I was too dependent on the EVD. I have a small scar on the back of my head and one in my abdomen from the shunt, which is permanent.
I started physical therapy the next day. I had been in bed, not moving, for almost a month. They came every day, got me to slowly move my legs and neck around. Eventually they got me out of bed and to a chair. The fact that I could talk and walk meant that most of my neurological faculties were intact. Given the size of the aneurysm, this was incredible.
Eventually I was moved from the ICU to a stepdown unit. Then, I was moved to a rehab facility where I spent the last three weeks. I had PT, OT, and speech therapy daily, most often, twice daily, where I worked hard to rid myself of the walker, and work on balance and endurance. In speech therapy, I worked on memory, word recall, problem solving, and even math.
During this time, my husband took off work to take care of our brood of children. He had help, as we always do, and they all did a magnificent job, as we always strive to do.
I eventually went home and continued my care as an outpatient. I got my stent placed about 2.5 months after my aneurysm rupture. The headaches were constant and relentless at first. I always had a dull throb in my forehead and temples. This sometimes escalates to a full on pounding without warning. Sometimes it feels like Michael Myers is stabbing me on top of my head over and over again.
What no one talks about, at least that I’ve seen, is the profound effect strokes have on one’s mental health. I have anxiety, depression, and PTSD. I have this misunderstood thing called neurofatigue. There was a psychologist at my rehab facility, but she didn’t do much for me other than recommend I see someone when I was discharged. This area is one where the hospital systems need to improve. We need more mental health support for our stroke survivors.