Day Off

We spent the day outside playing in the snow. It’s a lot of work, getting the kids dressed in snow pants, socks, boots, gloves, hats, and coats. Times four kids.

But, they had fun. They always do.

I hope someday they understand that I tried my best. Most days, I feel like my best is just okay. But, we all have a lot we are dealing with. Just like I’ll never understand what it’s like to have autism, or ADHD, or a G-tube; they’ll never understand what it’s like to survive a ruptured brain aneurysm (at least I hope they never have one).

I’m trying my best. I keep telling myself that. I wish I had more energy, more time, and more mental bandwidth. I wish I had a few clones. One of them could work, two of them could take care of the kids, one of them could do all the chores. 🤣

If only.

At least for today, they got outside, they played to their heart’s content, and they wore themselves out. I fed my brain some sunshine. That’s supposed to be good for me.

I’ll pay for it tomorrow. I’ll be tired and I’ll have a headache. That’s the trade off for having a good day. At least one bad one follows.

That’s what I’ve learned about living with a brain injury. You don’t get multiple good days in a row. You get one here and there, and then you pay for them with fatigue, pain, and brain fog. Hopefully, that only lasts one day, but I have to prepare for the possibility that it will last multiple days.

It’s a shit trade off.

Maybe someday, there will be better therapies for people like me. But, for now, I’m dealing with the situation as best as I know how. I try to meditate and go to bed early. I try to control the nightmares and flashbacks with medication. The headaches I can’t control at all. I’m a few days away from my next round of Botox. Things will inevitably flare and worsen after that. So, I have that to look forward to.

Once you leave the hospital in the US, they don’t follow up with how you are doing, overall. I get my MRIs and angiograms, and I see multiple other docs for the headaches and psych issues. But no one can fix the fatigue. No one can give me multiple good days in a row.

Ongoing depression

“Someday, if your life is long and your thinking machinery stays in gear, you’ll live to remember the last good thing that ever happened to you. That’s not pessimism talking, just logic.”

—Stephen King

What do you do if your thinking machinery doesn’t stay in gear? I’m not sure what the answer is. But, I’m 42, with a history of cerebrovascular disease. I’m at risk of vascular dementia as a result. If a second stroke doesn’t take me out, I guess I have this to look forward to.

Most people my age are taking vacations with their kids, or moving up at their jobs. I’m over here contemplating if I need long term care insurance because mostly likely, I’m going to end up needing it.

What was the last good thing to happen to me, then?

Yesterday, my son grabbed his twin brother, told him he loved him and hugged him. I grabbed them both and hugged them together with one of them yelling “group hug!” He has such a loving spirit. He is the sweetest and purest form of love I have ever known.

The last good “big thing” that happened might have been the Foo Fighters concert a few years ago. We were so close to the stage. We took a limo there and back. We had so many babysitters for the four kids. The whole night was so expensive but it was so worth it.

Meanwhile, the store bought serotonin isn’t really getting me out of this depression funk because it doesn’t change the reality of my situation.

What do I have to look forward to? It’s not a vacation with the kids. It’s an MRI this summer. To look for more aneurysms. What does that looming possibility give me? Just more anxiety and depression.

After I came home from rehab, I had about four months of feeling like I hit the lottery. I survived this awful thing. I got to see my kids and family again. I didn’t have any major deficits (that I knew of yet). I was grateful and happy; feeling the deep sweetness only those who’ve been near death can know.

Then my first flashback hit.

And it all changed.

I wish I could get back to that sweet feeling. I wish I could just be happy and grateful again.

Trauma

Once my aneurysm was discovered in the ER of the hospital closest to my home, I was airlifted to a hospital farther away. There, I underwent surgery to place platinum coils in my aneurysm, and to recover in the neuro-ICU.

I have no memory about my time on the life flight helicopter.

But, apparently my nervous system remembers. Once I was home, living under the flight path of the life flight helicopter, I would have anxiety, palpitations, and sometimes flashbacks when I would see or hear the helicopter. Eventually, the nightmares followed. In these dreams, I would be hiding, laying on the ground, and the helicopter would be hovering above me, searching for me. It would seemingly spot me, and then race to where I was hiding. Once it found me, I’d wake up and have a full-blown panic attack.

I had a hard time being in the backyard playing with the kids. Every time it would pass over us, I’d go inside and try to breathe through the panic.

I didn’t know what to do.  My psychiatrist prescribed me some medication to help with the panic episodes.  I dealt with it as best as I could. 

In January of 2020, exactly two years ago, NBA legend Kobe Bryant, his daughter, and seven others were killed in a helicopter crash.  https://en.wikipedia.org/wiki/2020_Calabasas_helicopter_crash

The news of this crash was everywhere.  Every news outlet, social media platform, and conversation with coworkers and friends centered around this crash for what seemed like weeks. It was impossible to escape.  It’s easy to tell someone to just unplug, stop checking social media, stop responding to texts and emails, and stop watching TV.  But doing it for weeks really is difficult. When everyone around you is talking about it, when people are sending you text messages about it, you can’t just unplug and ignore. 

So, there I was, face to face with the images of this horrific helicopter crash and thinking about the horrible moments these poor people faced in the last minutes of their lives.  Fight or flight mode engaged. Trauma responses initiated. 

I couldn’t escape the media attention this awful event received.  In a way, it was exposure therapy for me.  Exposure therapy is a psychological treatment that was developed to help people confront their fears. When people are fearful of something, they tend to avoid the feared objects, activities or situations https://www.apa.org/ptsd-guideline/patients-and-families/exposure-therapy#:~:text=Exposure%20therapy%20is%20a%20psychological,feared%20objects%2C%20activities%20or%20situations

It was suggested to me by a therapist to try exposure therapy.  She suggested I look at pictures of helicopters first, then videos, and then I should try to find the company and crew that took care of me the day of my stroke. What happened instead was accidental, in your face, exposure therapy because of this crash. 

I tried looking away, but for some reason, I couldn’t.  I read reports about who was on the helicopter, where they were headed, why it crashed, and even looked at arial images of the crash.  Despite what seemed like morbid curiosity, every time I was confronted with news of the crash, I was anxious, agitated, and on the verge of panic. 

During this time, I was in talk therapy. My therapist had an option for me to send her written entries between our sessions.  I decided to write out a long diatribe.  I wish I’d saved that entry, but I didn’t. 

After I wrote about how I was feeling, how this crash affected me, and how it was affecting my symptoms of PTSD, I hit send.  I fell to floor sobbing.  Full body sobs, ugly crying.  It lasted awhile, and then it stopped. 

For reasons I can’t explain, and don’t understand, seeing and hearing the helicopter rarely affected me after that.  I can go into the backyard and play with my kids.  I can drive around and see the chopper, and not have to pull over and breathe through it. It seems the exposure therapy really did work.

What happened to the people on that helicopter is tragic.  I have so much empathy for them and their families.  The crash somehow helped me.  I wish it could have been different, though.  I wish they’d never crashed, had made it to their destination, and continued their lives.  I wish I had found another way to diffuse this trigger.

I feel guilty that their loss benefitted me. 

Rest in peace, Kobe, Gianna, John Altobelli, Keri Altobelli, Alyssa Altobelli, Payton Chester, Sarah Chester, Christina Mauser and Ara Zobayan. I am so sorry for what happened to you.

Depression post stroke and adventures in talk therapy

“Depression is common after stroke, affecting approximately one third of stroke survivors at any one time after stroke (compared with 5%–13% of adults without stroke), with a cumulative incidence of 55%.”

https://www.ahajournals.org/doi/10.1161/STR.0000000000000113

When I was extubated after my aneurysm surgery, the doctors explained that depression is common after a stroke. They asked if I was comfortable with starting antidepressant therapy. I agreed.

Unfortunately, I’ve been through multiple medication trials since then. I see a psychiatrist every three months. His brother in law, whom he considered his best friend, died of a ruptured brain aneurysm. He seemed so empathetic with my situation. Are the meds working? Maybe a little, I’d say.

I still experience sadness, hopelessness, emptiness, and sometimes wish I hadn’t survived my rupture.

I try my best to cope with these feelings. Writing helps somewhat. I might just be screaming into the void, but at least it’s not echoing back to me.

I’ve tried therapy twice in the last year. It didn’t go well either time. Talk therapy just seems to make me anxious. What will we talk about this week? I feel like I need to come prepared with a checklist of issues I’ve faced in the previous week. Sometimes, I didn’t have any issues that week.

My first therapist was just OK. She just listened. ‘Is this all there is to it?’ I wondered. When she did offer me advice, it was sometimes OK and sometimes REALLY not OK at all.

After my rupture, I didn’t recognize that I had PTSD. I started to do things in response to my trauma. I began restricting my eating and over-exercising. I lost almost 50 pounds. For context, I was overweight at the time. I had just birthed triplets a year earlier. I told my therapist about the burgeoning eating disorder and instead of trying to get to the root issue, she would just ask me, “are you eating?” And I’d lie and say I was.

One day, she shamed me for what I was doing. She said, “you are going to end up in the hospital! Do you want to do that to your kids? Who will take care of them?”

I now realize just how fucked up this is. Instead of actually helping me understand why I was doing what I was doing, and helping me, she used shame to get me to stop doing it. Great idea for a trauma patient. She hit below the belt by making it about my kids. Plus, apparently, I should put everyone’s needs over my own. Who will take care of my kids, after all? No one ever seemed to ask, “are you taking care of yourself? How can I help?” I’m the one who is struggling, but let’s pile on guilt and shame. That’ll help for sure.

I stopped seeing her shortly after this exchange.

I’ve managed to gain about 15 pounds in the last several months. I no longer restrict and I don’t obsess over my step count.

I started seeing a new therapist in the summer of 2021. She was a licensed psychologist with her own practice. I said I wanted to do EMDR. https://www.emdr.com/what-is-emdr/ She agreed. We had about 10 sessions together. It was more of the same crap. “How has your week been?” I asked what we were doing, how we were getting to starting EMDR and never got a straight answer other than, “we are building up to it.” I asked how, and again, didn’t get a straight answer.

Before he was officially diagnosed, I told her about my suspicions of my son having ADHD. She told me to give him coffee to see if that helped him. Coffee. To a five year old. This woman told me to give my young son caffeine to treat his ADHD. I was dumbfounded.

She told me during every single session that it was such a shame I didn’t live in Pennsylvania. She kept lamenting about how the services there are so much better for special needs kids. Uprooting my life to move to a different state was not helpful advice at all. Repeating it multiple times was a complete waste of time. She even would say, “I know I tell you this every session, but you really should move to Pennsylvania.” It’s like she didn’t have any other ideas to help me.

She told me she was taking a trip to Yellowstone Park and we would miss the next session. I found myself relieved and questioned why I felt that way. I wondered if I was wasting my time with her.

About a week later, iI received a postcard. It wasn’t signed. It was addressed to my whole family. On the front was a picture of Yellowstone Park. I was confused at first, and didn’t know who it was from. The message was vague. It said she was having fun with her daughter and hoped everyone in my household was getting ready to go back to school.

Once I realized it was from her, I was furious. She took my PHI with her on vacation? What if it had been stolen? How could she cross this boundary with a patient? People would definitely react differently if a male psychologist had sent this instead of a female psychologist. But, that’s not really fair. There shouldn’t be a difference. What she did was out of line and a breach of my privacy. We are not friends. This is a professional relationship.

I canceled my next appointment with her. She eventually texted me to ask if I wanted to reschedule. I have a hard time with confrontation. It sends me into fight or flight. But, I felt the need to advocate for myself and for anyone else she might do this to. I mustered some courage and texted back, “No. I don’t want to reschedule. I did not appreciate the postcard or that you took my PHI with you on vacation. I feel like this crossed a boundary.”

She didn’t reply. I reckon this is because she knew what she did was wrong. She couldn’t admit to it without the possibility of me reporting her to whatever board certifies her. She also couldn’t gaslight me by saying, “no, I didn’t send you a postcard.” I assumed that would be a breach of her ethics. That assumes she even has any.

I’ve been taking a break from talk therapy. It’s hard to start over. It’s hard finding someone you like. Even with insurance, it’s fucking expensive.

I’d love to try EMDR. Everyone says it works wonders for trauma. But, I’m comfortable taking a break for now. I’m frustrated with the overall process and the lack of results.

Sometimes I’m not sure if my symptoms are a result of my depression, the meds I take for the depression, or if it’s the PTSD.

Depression sucks. It isn’t cured with medications or therapy or eating well and exercising. It’s always there, lurking, whispering half truths which I usually believe.

Stuck fucking Sucks

I’m in the middle of working 10 days in a row. It’s grueling even for the new folks I work with; the healthy folks who don’t have a busted brain.

For me, it’s extra hard. The neuro fatigue is here. I’m getting close to my next Botox appointment, so the headaches are here, too. There isn’t enough sleep, meditation, or medications to fix how worn down I feel.

I try to find gratitude in everything. But it feels forced. Yes, I survived. Yes, I can work. Yes, we have an income. Yes, we have a roof over our heads. Yes, we have medical insurance.

Did I mention this feels forced?

Work is difficult for me. I can hear the slur sometimes when I speak. When I hear it, I wonder how long it will be before someone else notices it too. Do they think I’m inebriated?

I’d love to look for a new job. Somewhere with a better schedule. Better insurance. Less holidays (none at all would be great). Somewhere that doesn’t require me to plan my vacation time a year in advance just for a CHANCE of getting the day off. Somewhere that values my contribution and doesn’t just keep demanding more.

A month ago, our company president received our department’s annual survey results. I assume these results are tied to his bonus. He scheduled multiple meetings with the staff to hash out issues. Some people spoke up.

I was one of them.

I talked about how burnt out I am with the current workload and the string of 10 days in a row once per month. I used the word “burnout” multiple times. He hurled excuse after excuse at me, and nothing changed.

They do not care about my wellbeing. They do not care about my mental health. They care about their bottom line only.

My coworkers are leaving in droves. A majority of the ones that are left, are job hunting and interviewing. We’ve lost good people. I’m hoping they’ve moved on to something better.

I’d love to look around. But, see, I have this slur sometimes. And I have trouble with word finding more than just sometimes. I’ll sit in front of my screen frantically trying to Google a combination of words so I can figure out the one I want. It’s embarrassing. It kills my confidence and sense of self-worth.

But what would kill those things with more ferocity would be if they happened in a job interview. It would crush me.

I could preemptively tell them about my stroke. But, no one is going to hire someone so high risk, or so expensive to their medical plan. No one is going to hire the brain damaged chick.

Because of the fear, I stay put. Stuck at a place that isn’t great, but could be worse.

My stroke is keeping me from my full potential. As someone who once was full of confidence and potential, it’s an uncomfortable place to be.

Stuck really fucking sucks.

Headaches

I woke up with a headache today. This one goes all across my forehead, and is a squeezing type of pain. Usually when I wake up to a headache, I blame it on my sleeping position. Did I sleep on my shunt, making it not drain as efficiently as it typically does? Maybe this is all in my head (lame pun intended), but a nurse at the rehab hospital told me not to sleep on it because it wouldn’t drain as well. Since then, I’ve tried to sleep on the opposite side of my shunt. The problem I’m running into now, is that I’m getting pressure sores on the ear that I always lay on.

I can’t seem to win, here.  Skin breakdown or a headache?  Those seem to be my choices.  We don’t have a recliner, and even if we did, I can’t imagine sleeping sitting up.  I know people do it, but I don’t think I’m one of those people. 

I bought a special pillow with cut outs for the ears. In theory, you put your ear in a hole and this offsets the pressure. The problem is you must never move out of this small hole. Unfortunately, I tend to move around just enough for my ear to move onto the pillow, thus putting pressure on it again.

I consulted with a wound care specialist that I work with. She suggested using liquid bandage on my ear, but I can’t stand the way it feels, and I end up picking it off. It’s basically like putting clear nail polish on your skin. My picking just made my skin more friable.

Last night, I slept on my shunted side to give my ear a break, and now I have a headache. It’s going to last all day. I know this because I’ve been dealing with headaches for most of my life, even pre-rupture. I can tell. This one has its grip in me, and it’s not going to let go until I can sleep it off.

Over the years, I’ve tried many things to help with headaches.  Cold therapy helps my headaches significantly.  I have a cap that I wear on my head.  I keep it in the freezer.  Inside the cap, there are frozen ice packs.  The cap can be pulled down over your eyes to help keep out the light.  

I take a magnesium supplement every day.  This was suggested to me by a neurologist I saw in my 20’s.  The magnesium, in theory, decreases muscle tension and may help with tension headaches.  I figure it can’t hurt, and sometimes feeling like I’m doing “something” just helps me feel better.  

I have an acupuncture mat.  This was a failure for me.  It just hurts.  It doesn’t help with anything because I can’t stand to lay on it long enough. 

I can’t take the most common prescribed medications that are used for migraines.  Known collectively as the triptans, these medications are contraindicated in patients that have had a stroke.  They include medications like sumatriptan, marketed under the brand name Imitrex.  I took them in my 20’s and they always made me feel like a zombie who had constant paresthesia. 

I am prescribed a newer medication for my headaches.  It’s outrageously expensive, even with insurance.  I hoard it and only take it when I’m at work.  It is effective and it has minimal side effects.  I long for the day when this drug goes generic and is on more formularies.  But, for now, I only receive a few of these to use per month.  It will be many years before it is more affordable.  Another frustrating issue for brain injury patients. 

I sometimes utilize topical essential oils. Typically, these include peppermint, spearmint, and lavender oil. I also have these same ingredients in a balm. It helps minimally. But, sometimes, I’ll take minimal help over nothing.

I take several medications prophylactically or to prevent the headaches from happening. I receive IM Botox injections every three months. These do help, but there is a downside. The first two weeks and the last two weeks of my Botox cycle are typically the worst. The injury to the muscle from the injection initially causes significant muscle stiffness and causes my headaches to flare. The last two weeks might be related to the Botox wearing off.

I’d love to hear from anyone else who has headaches. What works for you? What doesn’t work for you?

Neuro-fatigue

Source

“Neuro-fatigue is one of the most debilitating consequences of a brain injury, as it influences everything the injured person does, both physically and mentally. A person’s emotions can also become raw when they are tired.”

Despite being hospitalized for months, I never heard the phrase “neuro-fatigue.” I didn’t know what it was, or that it existed until I was at home. This highlights just how shitty the after care is for stroke patients. How could no one tell me about this? How could I have no clue about the existence of this awful phenomenon? How can the care of brain injury patients be so bad, that it never includes a discussion about this likely side effect.

I went back to work sooner than I should have. My first shift back, I fell asleep at my desk, in the middle of the workday. Thankfully, I work at home and wasn’t missed. But, it took me by complete surprise. What was happening to me and why?

Neuro-fatigue, like everything else associated with MY brain injury, is invisible. No one can see the level of fatigue I have.

Things that trigger my neuro-fatigue include:

◦ Too little sleep

◦ Too much noise

◦ Too much chaos

◦ A grueling headache

◦ Having a disagreement or a serious discussion

◦ Unexpected changes to my day. The most recent example occurred when my work computer locked me out and I had to work with IT for over an hour to get my access back

◦ Expending mental energy, such as by studying, reading, or focusing on a difficult task

◦ Something that triggers my nervous system causing anxiety or prolonged periods of hyper-vigilance

When my neuro-fatigue is at its worst, I feel physically drained, exhausted, and also agitated. It usually is accompanied by my second most debilitating symptom: a headache.

It’s different from just being tired. It’s a weariness I can feel in my bones. My head is fuzzy and I get easily confused. Eventually, there is a point where I can no longer function and I have to be a slug that just takes up space. I feel worthless and like I’m a burden.

I wish I had a magic cure for this ailment. It seems the only thing that helps is rest and sleep. Meditation and mindfulness help a little bit, but they are mostly a bandaid until I can get a full night of sleep.

It’s so easy for someone to say, “well, then just go to bed early.” Or “just sleep more.”

They don’t understand that I have four kids under 8, and 3 of them have significant challenges of their own. They don’t understand I’m paying for an unexpected and necessary renovation to my dining room, and I can’t afford a sitter. They don’t understand that life doesn’t stop for my neuro-fatigue.

Sometimes it can take me a week to recover from an attack of neuo-fatigue. That’s a whole week of feeling and being worthless. It wears me down. I’m only 42, but I feel 72. It worsens my depression, and my self-worth hits an all-time low. Thoughts of “why did I have to survive this awful thing?” creep into my head.

I’m worried my employer will notice my productivity decreasing. So far, they haven’t. This is most likely because all the new people are just slower than me and not that I’m excelling in my work.

My family depends on my income to survive. My medical benefits are necessary for all of us. The weight of this responsibility is enough to crush my spirit on a good day.

I wish I had been more informed about the possible consequences of my brain injury. I wish there was more money dedicated to the treatment and rehabilitation of people with brain injuries. But, the reality is, if you can walk, talk, move, and work, you aren’t disabled “enough” to qualify for any disability or help. I’m in this situation, 5 years out from my stroke.

But it’s a fucking racket. I’m am absolutely disabled.

So I waste away, fighting headaches, fatigue and other figurative demons, knowing my best days are behind me.

This sad reality is peppered with moments of gratitude. I’m happy to be here for my kids. I just wish I was well enough to enjoy spending more time with them. I wish I could stay up late and watch movies with them. I wish their incessant fighting didn’t make my neuro-fatigue worse. I wish an afternoon of getting everyone bundled up to play in the snow didn’t zap my energy for a week.

I’m here, but I feel like a ghost. A shell of the person I used to be.

I miss the old me.

The rupture

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.

Introduction

In 2017, I was 37 years old when I suffered from a ruptured brain aneurysm, also known as a hemorrhagic stroke. I spent a month in the Neuro-ICU and I’ve had four brain surgeries.

My triplets had just turned a year old when my rupture occurred. In addition to the triplets, I also have an older son.

I suspect the stress of the triplet pregnancy caused the aneurysm to form, but I’ll never know that for sure.

I suffer from chronic headaches, neuro fatigue, PTSD, depression and anxiety as a result of my brain injury.

I receive Botox injections every three months to help with the headaches. Here in the US, my abortive medication (medication taken to abort an active headache) is outrageously expensive. I hoard it and only use it when I’m working.

I work full time in healthcare.

I hope to bring awareness about brain aneurysms, brain injuries, PTSD, and the issues that face my children (prematurity, autism, ADHD, cerebral palsy, coarctation of the aorta, developmental delays).

Writing is therapy to me. I hope to help myself and others with this blog.