I had a Brain Hemorrhage

First hand experience suffering a brain hemorrhage

Photo taken by S. N. Mulier (author of this article)

Among some memorable days in my life, April 13th, 2011 will be a day I am unlikely to forget. It was the day I had a brain hemorrhage and lived to tell the story.

Full disclosure, I am a physician. At the very least, I have knowledge of human physiology, pathology, disease processes and symptomatology. I am aware of the theory and practice of how diseases present clinically, in patients I treat. When it happens to you though, it is somewhat different.

Those of us trained clinically like to think that health conditions happen for a reason. Sometimes, the reason is obvious, other times it is apparent on investigation — lab work and imaging, etc. And there are times when the reason remains a mystery no matter how hard you try to find one.

My hemorrhage happened at a time I least expected it. It had no apparent reason, none was ever found. I was nowhere near the cohort (age group, gender, ethnicity) in which brain hemorrhages commonly happen. It is widely considered a condition of the older age group or when people have very well defined known conditions like aneurysms (ballooning of weakened arteries), arteriovenous (AV) malformations in the brain (abnormal connection between arteries and veins), or trauma (head trauma from an accident, fall, etc.). I had none of these.

I was apparently in decent health: young, no known chronic or acute conditions, not on prescribed medication, not a user of recreational drugs (aka street drugs), not huge on alcohol (1–2 glasses wine/week), non smoker, walked >2 miles/day, gym goer (loved the spin class), ate mostly home cooked food. So when it happened, it was the most curious, outlandish thing to happen to an unlikely candidate.

A day or two before the hemorrhage (on retrospect), I had felt unusual sensations in the whole body. I usually did spin class, then sauna and hot steam at the gym, showered and came home. I felt like I could not breathe to satisfaction, not deep enough to fulfil me and needed to breathe deeper and deeper, which ended in constant yawning that day. I had headaches, so much so I had to lay my head down on the desk while at lectures (I was completing my postdoc). Also looking back, I realized how my house was devoid of pain medication (or any other medication), I only had an old bottle of aspirin.

It happened while I was at home, post dinner, I was working at my desk. I had just showered and while in the shower, I felt an unusual tingling in my head — like several little light bulbs went on and my brain had lit up. It was almost painful and unpleasant at the time but thankfully it passed and I was relieved it did. I am grateful the bleed didn’t happen while showering, it would have been very unfortunate.

I was at my desk when I felt a sudden severe pain on the right side of my head. And then what followed was like a tiny pipe of hot water had burst inside my head. It was spurting hot fluid, yes I felt the blood spurt, and wherever the blood flowed, it was pure pain. It was like liquid pain flowing all over the brain. The pain was so severe that I had to go to my bed, lie in a fetal position holding the head in my hands, and scream. Screaming made it worse. So crying like a child was all I could manage.

I initially thought it was severe sudden migraine — I had experienced migraine pain once in the past and this was way more severe but that was my only frame of reference. I called my husband who lived across the country on a different coast. He sounded concerned and asked me lay down, take an aspirin. If the pain doesn’t stop — I had two alternatives; call 911 or call Andrea, my lab colleague, also a physician and a neighbor and ask her to drive me to the ER. I took an aspirin (on retrospect — wrong move, aspirin is a blood thinner).

The pain was unaffected, only growing. It wasn’t just pain, it was like fire. Like my brain was on fire. Textbooks describe it as a thunderclap headache, and the worst pain you will ever experience. And then it started to come together, thunderclap headache, worst pain ever, the spurting, the fire… this was a brain hemorrhage.

I was actively in the middle of a brain hemorrhage!!!

BUT WHY? It made zero sense. I knew I was at no known risk for a brain hemorrhage. Knowing from how much blood I was feeling up there, this was a big one. This should not be happening to me, this is surreal — was the predominant thought in my head.

A second after I realized what this was, I knew I had very little time before I will pass out, have a seizure, and then pretty much die due to brain herniation, if I didn’t get help asap!

And then it happened — projectile vomiting. Textbook sign of increased intracranial pressure. My half digested dinner came out in violent bursts. I threw up a lot and every time I did, the pain unbelievably went up.

Once I thought I was done vomiting, I called my colleague Andrea or Andi. I told her I needed to be taken to the ER right away. I was hoping she was in the vicinity, and that I didn’t have to call 911. She was, she said she was just closing her clinic not too far from me and asked me to pack a overnight bag and come downstairs on the street and she would pick me up. I knew at that point that how far I will manage to go from here is a matter of how quickly I bleed out, and pass out.

Amazingly enough, I cleaned the mess from the throwing up, took the trash out to the back street dumpster because I didn’t want my studio to reek when my husband arrives the next day as I was sure he would have to. And then, I don’t remember anything.

The next thing I remember was waking up in a very noisy neurosurgical ICU bed tethered to what looked like a hundred monitors, venous line, arterial line, central line, a drain coming out the right side of my head draining pure blood into a bag hanging low on a stand, feeling like I had been run over by a truck, in terrible pain, nauseated and disoriented. The first word out of my mouth was “”FUCK”. This is real!

In reality, I must’ve said the f word like a thousand times in my head. No matter how many times I wished this was a dream, it wasn’t. A nurse saw that I had woken up, she came in told me where I was and what had happened. She said my husband has been contacted, he was on his way here and that the doctor will be here soon to tell me more. And so started my painful recovery, which would go on for months.

In my ICU bed, I was very uncomfortable, propped up, trying my best to get some rest. But every time I moved even a little, some sensor moved and set off a monitor alarm, the beeping sound of which hammered through my painful head, till a nurse came running in to put it off. I was retching a lot, not able to keep any oral medication down. Being poked and injected meds every half hour. I was not allowed water, was thirsty and irritable as hell. What I didn’t know was what I looked like. Apparently half my head was shaved bare where the head drain came out and the shaved hair hung lose from the side — stayed there for 4 days, until a kind nurse brought in some scissors and leave-in shampoo to carefully, lovingly sort my hair out.

Quick note about the whole hair thing — hospitals try their best to conserve your long, beautiful hair especially when your head surgery is planned. But when it is a life threatening condition, they shave it off and it is not the most elegant job. They are saving your life, the hair will grow back out.

Part of the story I didn’t remember: After cleaning the mess, taking out the garbage, I had packed an overnight bag, locked my apartment, made it to the side walk near my building, I was picked up by Andi, who drove me to the Emergency Room (ER). Andi sat through my CT scan, neuro angiography, up until I was taken into the Operating Room (OR). Luckily Andi knew my husband and had in the meantime called him, appraised him of my development and he was on his next flight out. In the operating room, neurosurgeons drilled a hole in my skull and inserted what is known as an EVD — external ventricular drain, to drain the blood. The EVD drained the blood, relieved the intracranial pressure and that let the artery heal. In all their exploration, they did not find a structural reason for such a massive hemorrhage.

Months later when I met Andi again, she told me I had passed out in her car on the way to the ER and they had to wheel me in. They saw a massive bleed on CT scan, almost completely obliterating the brain. They took me into neuro angiography to see the source and extent of damage. Then to the OR to repair it. She was with me into the wee hours of the morning. I will be eternally grateful to her, she saved my life.

Recovery from a hemorrhage is just as tough as the hemorrhage itself. It is a matter of pain and patience. My recovery is a story for another time. But I have so much to be grateful for. I had the means and access to a world class tertiary hospital where they had the best of physicians and nursing to help bring me back from the brink of death. Upto 75% of brain hemorrhage patients don’t make it and mostly because of the lack of timely diagnosis. Brain hemorrhages are highly fatal, exceedingly critical health situations. Depending on how big the bleed is, it is sometimes not even possible to diagnose them at all and they are very quick to kill.

Here are some important symptoms to recognize a brain hemorrhage —

1. A very severe, worsening headache {called thunderclap headache}
2. Worst pain of your life, worsening pain that won’t go away
3. Slowly losing consciousness
4. Projectile vomiting {forceful vomiting that comes out as a strong spurt, landing away from the face} — this is a classic sign of increased intracranial pressure which is increased pressure inside the skull cavity.
5. Seizures
6. Rare symptom is when you feel the burning, painful spurting of blood inside the brain

The skull is a closed, hard, inflexible cavity. Any growing object (tumor) or process (bleeding) inside the skull starts increasing pressure and pushing the brain tissue out of the skull through the opening at the base where the spine comes out. If there is enough unreleased pressure, there might be irreversible changes that may lead of seizures and death.

If you observe any such symptoms in someone around you, it is prudent to call 911 immediately and get the patient to the ER. You just may be saving someone’s life. Understandably, brain hemorrhages are not easy to diagnose and hence the critical time window where things can still be reversed can pass quickly. Additionally not all brain hemorrhages show classic signs and some symptoms are common with migraine like conditions. Some hemorrhages are so big and so quick, the patients lose consciousness and pass away without knowing the reason until an autopsy shows it.

Given all the odds, I consider myself extremely lucky to have recognized it for what it was, called a friend who was available to take me to the ER, and that the hospital had the best of doctors and facilities to manage it. It took months, but I recovered completely. I was without cognitive deficits, still had the use of my hands and legs, with all my sphincters functioning normally (I could eat, digest and go on my own), and with no learning or speech deficits. I was extremely lucky that I had all this inspite of the massive bleed. And that was because of the early detection and treatment. The only things I suffered was immense pain and labile blood pressure. I continued to take heavy pain medication for years after and blood pressure medication for the rest of my life. I did many ER trips after for suspected head bleeds, which as it turns out were not head bleeds but symptoms mimicking them.

The same year (2011) as my hemorrhage, two people in my friends circle suffered intracranial hemorrhages and unfortunately both died. Brain hemorrhages are rare. Given the number of people afflicted every year, this was a high number of people within one cohort, to suffer the same condition in the same year .

A friend’s wife complained of headache one afternoon, went upstairs to rest for a while and died in her sleep — a huge intracranial aneurysm had burst and killed her almost instantly. They found the reason only on autopsy. She has two daughters. The daughters will never have their mother at their graduation, weddings or watch them have their own families.

Another was a little kindergartener boy, son of my former colleague. An undiagnosed AV malformation at the base of his skull ruptured and bled, he lost consciousness, was diagnosed correctly, operated several times, passed away 8 days later. A happy, funny little boy with his whole life ahead of him, will now only be seen in pictures.

Both cases left me wondering why God would let me live and take a mother of two and a little boy instead. Their lives were so valuable and precious — so much to live for. I reached out to the grieving families and told them both that I would happily give my life to their departed if it was upto me. It still mystifies me, why them and why not me.

Survivor’s guilt? It seemed random and unfair.

No story is without a conclusion. They never really found a reason why such a massive bleed happened to me. The doctors were okay with not finding a reason, sometimes you just have to accept things. I asked them if it will happen again, because I was shaken and horrified that egregious things can happen for no apparent reason, I was told the possibility of that is highly unlikely. I take them on their word. I met some amazing care givers in my journey. I also went through some very heartbreaking personal losses — I became pregnant (by accident but happily) soon after the hemorrhage and I could not keep it because I was too sick to sustain it.

Everything you now have, you will lose one day. Loss makes you appreciate what you have, go home and hold on tight to it.

Truth: Life is inevitable. Live it to the fullest. Drink deep from its cup. It will get tough at times, but don’t dwell on it. Re-align, re-calibrate, re-adjust, pick up from where it paused. Keep walking.

Healing too is inevitable. Happiness awaits.