I visit the headache clinic every three months. The neurologist walks in with four syringes full of Botox. He asks me how my headaches have been.
“They’ve been better than before,” I tell him.
He proceeds to inject at least 28 intramuscular injections into various parts of my face, head, and upper shoulders. I try to relax my muscles as much as possible, as I’ve learned the process is much less painful if the area is not tensed.
It’s over in a minute or less, and I’m on my way home.
The chronic and debilitating headaches I experience are a result of a ruptured brain aneurysm I had in 2017. I was 37 years old at the time. Like most people who experience a rupture, I didn’t know the aneurysm was there.
A little over a year earlier, I had given birth to triplet sons. I also had a two-year-old son. Four kids in diapers. My life was chaos on steroids. One of my triplets, James, was born with a myriad of medical issues that required around the clock care. He spent the first six months of his life in the neonatal intensive care unit. He required heart surgery at six weeks old when he was just three pounds. He had a heart defect called coarctation of the aorta. They managed to fix that issue, but his troubles didn’t end there. He was dependent on supplemental oxygen until he was about two years old. He also never learned to eat by mouth. This was either due to the prolonged intubation, or the fact that he just was too tired from all his health issues to properly take a bottle. Because of this, it was necessary to place a G-tube. He’s five now, and he is just now learning to eat by mouth.
On 4-20-17, I had a headache that put me to bed early. I woke up the following day and felt ok in the morning. I had to work in the afternoon. But first, James needed X-rays for an issue his physical therapist had noted. I drove us to the hospital and our babysitter, Rachelle, stayed with the two other triplets. Jay, my oldest son, was at my parents’ house. My husband was at work. While I was with the X-ray tech, trying to both console my son and hold him still for the images, a sudden and severe headache overcame me. A wave of heat and dizziness washed over me. Ironically, I felt the need to leave the hospital. We finished up the X-rays, and I drove us home. I think about that drive a lot. I think about timing, and how, if I had been just a few minutes earlier, this could have ended very differently, and I could have ended up hurting someone, or a few someones, if I’d crashed my car.
We got home, and my headache was raging. I put James in his infant carrier seat, on the floor, and ran upstairs to take some Aleve and lie down before my shift started. I swallowed the tablets, walked out of the bathroom, into my bedroom, and felt a bolt of lightning hit me in the head. I immediately fell to the floor and vomited. I couldn’t get up. Recognizing I was having some sort of crisis, I screamed for Rachelle, She came running. I told her I needed an ambulance and that I was having a stroke. I asked her to hold my hand, as I was sure I was dying. She did, and she cried and prayed. I begged her to tell my kids that I loved them, to tell all my family that I loved them, and that I was sorry. I’m not sure what exactly I was apologizing for, but in the moment, it felt like it needed to be said. I don’t remember the next few days. Things were pieced together for me by other people and my medical records.
Paramedics arrived, and immediately asked Rachelle “what is she on?” and they administered Narcan twice. When I didn’t wake up, they took me to the closest hospital; where I just was with my son, getting X-rays. Rachelle managed to call my parents, my brother, and my husband. Some of them met me at the ER and I’m told I was alert and talking to them. I told my husband I knew I was going to die. The bleed was discovered, and I was life-flighted to the hospital downtown. They told my family to say their goodbyes to me. My brother was parking as the helicopter lifted off, and he knew I was on it.
My family drove to the hospital an hour away. My husband said he thought about the conversation he’d have to have with our oldest son, and worried he’d have to make him understand that his mommy wasn’t coming home. They waited while I underwent brain surgery. Later, in a bit of levity, they would argue over whether the neurosurgeon had called my aneurysm “horrific” or “horrendous.” Either way, this thing on my basilar artery in my brain was huge. It required dozens of platinum coils to clot it off. An external drain came out of the top of my head, draining blood and cerebrospinal fluid. I went into a form of heart failure from the shock of it all. As if the cerebral issues weren’t enough.
My brother stayed that first night with me. He could tell I was in pain. He asked for my IV fentanyl to be increased. He said I gave a thumbs up sign when they gave the higher dose.
I woke up about four days later in the ICU. I startled awake and I tried to rip away from the wrist restraints. The nurse practitioner was in the room, trying to re-orient me. She told me I’d had a ruptured brain aneurysm and I was in the ICU. I could tell by the fatigue and annoyance in her voice that this wasn’t the first time she’d had this conversation with me. She told me I was intubated, asked me to nod that I understood, and told me she’d take off the wrist restraints if I promised not to touch the tube. I nodded.
My head was throbbing. They tried to explain things, they put me through a battery of tests to assess my neurological function, called neuro checks. “Pull me forward, push me away, lift your left leg, push with your foot, lift your right leg, push with that foot, grab my hands and clench, push my hands down, pull them up, now look at this light and follow it with your eyes.”
I aced them all except for that last one. I couldn’t focus my eyes, they rolled all over the place. What I could see was concern on the doctor’s face. This clearly meant nothing good. They told me not to worry and they’d check it again later.
Being a patient in the ICU was traumatic, disorienting, and terrifying. I was in severe pain, and the tube down my throat was causing me to panic. I begged for sedation, even writing out, “knock me out.” They explained that I needed to be alert for the neuro checks to assess for any vasospasms, further brain bleeds, or a thrombotic stroke. My anxiety was extremely high. I spent about 36 hours intubated and alert. The neuro checks were every hour, so I didn’t get much sleep.
When I was finally extubated, I had issues with shortness of breath, and had to be put on a bipap which forces oxygen concentrated air into your lungs. I was terrified they’d need to re-intubate me. Luckily this didn’t happenand after a day or so, my breathing was normal.
The doctors told me that many people with my type of brain injury go on to develop depression, and they recommend I start on an antidepressant right away. I agreed. This was the extent of the conversation about my mental health, and what to expect about it as I progressed in my recovery.
Every morning, they’d come in my room with a portable CT device to scan my head, and they’d use a machine on my eyes to check for vasospasms. It turned out, I was having vasospasms, and this put me at risk of having complications. I had a procedure done where they injected a medication into my aneurysm to get the vasospasms to stop. Eventually, they did.
My vision was still wonky. I couldn’t focus, couldn’t read, couldn’t respond to texts without using voice to text, and I was very fearful this would never get better. How would I drive? How would I work? How would I walk and not fall? An ICU nurse, whose name I wish I could remember, eventually suggested I start patching one eye for two hours, and then rotate it to the other eye for two hours. I did this for months until my vision, thankfully, corrected itself.
Physical therapy came in early on. At first, my goals were very small. One day, we spent an hour working on moving my head from side to side. The pain was excruciating. Eventually, we worked on moving my legs in the bed, then swinging them off the bed, and then, standing with a walker. After I could do this, we worked on taking steps. I was weak, I was wobbly, but I walked with the walker and the physical therapist.
The headaches were awful. A constant throbbing in my head as the blood and CSF built up, and then drained out the top of my head into that external drain. They told me my brain wasn’t recovering properly and I’d need a permanent shunt to help the brain’s ventricles drain all the things that need to be drained. I had the shunt placed about six weeks after the aneurysm ruptured. The external drain was removed. I had this massive knot in my hair from the drain, and I was sure I’d have to cut it all offas there this huge knot was never going to come out. I was told I still had to wait a week to wash my hair.
Once the shunt was placed and I had a day or two to recover, I was moved to a rehab facility for a few weeks for speech therapy, physical therapy, and occupational therapy. It was grueling. I was the youngest person in all of my group therapy sessions, by decades. People were naturally curious. “What happened to you? How old are you?” they would ask.
“I had a stroke, and I’m 37.”
When I was there, and I washed my hair, finally, the knot was stubborn as hell. I was frustrated, using detangler, conditioner, and anything I could think of to try and get it out. It wouldn’t budge. I had a nurse’s aide, whose name I, of course, can’t remember, offer to help me. This caring, kind and patient woman told me, “I have natural hair. I can get that out for you.” And she did. She worked meticulously for a solid hour, slowly and carefully getting this massive knot out of my hair. I felt so much better with it gone, and so grateful to her for helping me.
Eventually, I was asked by the CEO of the rehab facility to attend a luncheon with other residents to talk about our experience there, and what went well and what they could improve upon. I told my story about the nurse’s aide and asked him to give her a raise. I hope they did.
I found the speech therapy portion the most frustrating, as I’d have a hard time finding words sometimes. I felt that my speech therapist considered me young and high functioning, and she would get annoyed with me sometimes when I wouldn’t be able to answer her questions. One day, she was off, and I had a different speech therapist that was much more compassionate and patient. Otherwise, everything in the rehab facility was wonderful. I eventually went home, back to my life. I couldn’t lift anything over 10 pounds for awhile. The triplets were a year old, and were all heavier than that. I’d need a lot of help.
I was so fortunate to have a lot of help from family, friends, and paid caregivers. My husband took time off work to be there to help with the kids, and to drive me around to my outpatient appointments. When I followed up with the neurosurgeon, it was apparent I’d need yet one more surgery. The aneurysm had a wide neck and the coils couldn’t be placed in the neck. It was unstable and at risk of bleeding again as the neck of the aneurysm was full of blood. I’d need a stent to divert blood flow from the aneurysm and allow it to shrink. Thankfully, all my surgeries were non-invasive. I never had to have a craniotomy, meaning they never had to open my skull. Even the shunt was put in through my abdomen and threaded up into my head.
But, eventually, I would come to wish I had some big scar across my head. Some type of proof that I had this major event happen to me, and that I lived to tell about it. Something that explained why I sometimes forgot things, why I had these horrible headaches, why I get so tired all of the time, why I sometimes can’t handle loud noise or a lot of chaos, why I need to sleep so much, and why I have awful anxiety at times.
When I first got back home, I was so full of gratitude for having survived. I soaked in every little moment with my kids, my family, and my friends. But, then, the nightmares and flashbacks started. No one warned me about any of this. The nightmares started off being very similar; and always about the helicopter. They’ve since changed to other, terrifying things. But at first, I was being chased by a helicopter which flew with great speed that is only seen in weird dreams; I was on a helicopter trying desperately to get off; I was watching a helicopter in the sky, crouching down, trying not to let it see me. The flashbacks also involved the helicopter. I was in it, but I couldn’t see. I could hear myself moaning out in pain and fear. There was so much noise: slamming of cabinet doors, people screaming my name, and the whirring.
I live under the flight path of the life flight helicopter. One day, I was out on a walk with two of the triplets and the babysitter. The helicopter was seemingly taking off right in front of us. I fell to the ground, crying. I’m thankful my kids are too young to remember this, and I’m sure I gave Rachelle a fright. It was just a completely spontaneous response to seeing it. I knew I needed help when I couldn’t manage the panic attacks with breathing exercises. I eventually found myself a psychiatrist and then a therapist. It’s something I’ll probably always have to work on.
At the time of my rupture, I was working part time for a company I had been with for years. When I woke up, I was sad thinking that I’d mostly likely lost my job. I didn’t have any benefits such as disability or FMLA because of my part time status, so they didn’t have to keep me. But, when I contacted them to ask if there was a chance of a re-hire, they didn’t hesitate. I went back to work, part time at first, and then eventually full time. I’m very grateful they let me come back as I truly do enjoy what I do.
I had an angiogram two years after my rupture. There were no new aneurysms, and the horrific-horrendous monster on my basilar artery was completely clotted off. There was no risk of a re-bleed. I’ll have an MRI in the summer of 2022.
Here I am, with four more years of memories with my kids, my family, and my friends. My kids don’t yet understand what happened to me, but they know a little about it. They talk about it in generalized, if not completely unbecoming terms, and say, “Is that when your head exploded?”
While I am grateful for surviving and for the added time; it hasn’t been easy. Some days my head hurts so much I think I must be having another rupture. During COVID, I’d often ask myself, “If this wasn’t a pandemic, would you be going to the ER?” I know I’ll always be at risk for another aneurysm. Coping with the mental health challenges has been, well, challenging. If there is one thing I’d like the medical community to know, it’s that this is a traumatic event, and we need to be better at talking to patients about trauma and what to do if things like flashbacks or nightmares happen.
My son, James, the one who was with me getting X-rays when the headache started, is at the highest risk of all my kids for having a brain aneurysm. The birth defect that he was born with, the coarctation of the aorta, puts him at risk of having a brain aneurysm. Having a first degree relative who also had one also puts him at risk. He’ll start having MRIs of his brain when he’s 10. Add this to never ending list of worries a parent already has.
I, like the rest of the survivors of a rupture, am hoping for better days ahead. It truly is a gift to have survived. We are the lucky ones.