Here’s my talk at the Neuroscience Club, School of Neuroscience at IUPUI.
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Updated on 15 Apr 2017: Two years after Brain Surgery (Happy Brainversary to Me!)
This is the current status of my symptoms in the order of relieved – mostly relieved – on-going but may be relieved – may not be relieved. Please note that brain injury causes trauma in the body that might take a while to recover. It is a continual process that requires the person with the brain injury to regulate and be mindful of physical and mental activity. I know logic says that I got fixed and so I should run at the optimal speed but try teaching that to the human body… I challenge you!
I was told that it might take anywhere between 12-18 months for my body to feel as if no intrusion took place. For now, it’s still recovering from the shock of my pineal gland going on a sabbatical for atleast five years now. I’m very attentive to what my body (my brain tells it obviously!) needs, for example, if it says you can’t walk anymore, I just stop and take a cab back home.
It’s very important to listen to your body and learn to differentiate the signals it is giving you. It is very easy to confuse chronic fatigue with laziness, lethargy with lack of motivation and comprehension problems with lack of focus. These were the initial symptoms I couldn’t understand and didn’t pay attention to. Also, let nobody come between you and your body. Let nobody tell you that you should or should not experience a certain symptom. Your body is unique and statistical significance has no place in your diagnosis (Try computing the probability of finding a person with a pineal teratoma in general population. In my case, it’s 1… Ha ha!)
Inability to Process Information
I’d go to this cafe beside my house every other day because they had delicious food for everyday I got bad news which was more often than every other day. They have a half page menu with 5-6 items and I’d ask them every time I visit what they recommend. It had to get old at some point! I couldn’t read a menu, stack the items on my mind and compare them mentally. I needed help with everything that needed processing information which was basically everything. It would take me forever to decide which tea I wanted to drink from my kitchen (I do have a few more than usual but that’s not the point). Pictures weren’t of much help either. Ayan, my punchbag ;), would say, “Don’t look at the menu. Just tell me what you want.” Often, I’d have requests like tangy fish soup with bamboo in it. If he didn’t find it on the menu, he’d find another restaurant to go to :).
I needed someone to help me cross the road when the pedestrian signal was on. I caught myself standing in the middle of a road with vehicles honking at me atleast twice before I realized by the time my mind processed that I could cross the road, the signal changed, haha! Numskull! On my physician’s recommendation (a gentle, calm and very caring man who doubled as my Psychologist for the first few months), I tried using simple techniques like following other people whenever I could or using the skyways and subways.
Primary Progressive Aphasia, PPA-L (Logopenic Subtype)
Primary progressive aphasia (PPA) is a form of cognitive impairment that involves a progressive loss of language function. PPA begins very gradually and initially is experienced as difficulty thinking of common words while speaking or writing. PPA progressively worsens to the point where verbal communication by any means is very difficult. The ability to understand what others are saying or what is being read also declines. In the early stages, memory, reasoning and visual perception are not affected by the disease and so individuals with PPA are able to function normally in many routine daily living activities despite the aphasia. However, as the illness progresses, other mental abilities also decline.
In persons with PPA-L, speech is fluent during causal small talk but breaks into mispronunciations and word-finding pauses when a more difficult or precise word needs to be used. Some are very good at going around the word they cannot find. They learn to use a less apt or simpler word as well as to insert fillers such as “the thing that you use for it,” “you know what I mean,” or “whatchamacallit”. The naming of objects becomes impaired. Understanding long and complex sentences can become challenging but the comprehension of single words is preserved.
Squeaking in ears
My ears would start ringing out of no where and it took me a long time to realize that the noise was not external. Sometimes, it would be loud to the point that it hurt and I couldn’t hear anything from outside.
I’d hear my heart pounding randomly even I’m doing nothing physically intensive like sitting or sleeping.
My hunger cycles were very confusing! For a few weeks, I wouldn’t be hungry at all. The thought of food would make me feel nauseated. A few weeks following that would be days of constant hunger pangs. I’d be hungry even while I’m eating and nothing would satiate my hunger, not even a litre of water. I’d be hungry through day and night and eat everything in my sight.
Loss of Temperature Sense
You obviously know where I live and how cold it gets here. I had minimum to no sensation of cold even during winter and I could not tell how cold it got. I could go out in snow with no footwear without feeling very cold. Some days, my hands and feet would freeze blue but I could not feel it.
Loss of Taste Sensitivity
Most food tasted the same except Nutella off course :D. Sweet was pretty much the only taste I could decipher. Everything else tasted like nothing.
By the time I got operated, my eyes were half closed with the drooping eyelids. I think it’s a sign of muscular fatigue but in my eyes, it was another thing I was losing control of.
I’m not sure if my medication caused it but I’d feel severe tingling in my feet and hands. It’s more of an annoyance than pain because there is nothing you can do with tingling hands and legs.
I saw shaky things through a misty cloud for a couple of months and it magically cleared up when I woke up from surgery. I had slight blurred vision only for a couple of hours in five months and I’m not thankful to the new workout I tried.
For more than 6 months, I could report atleast two types of headaches (numbing, pinching, aching, shooting, shocks, pulsating) in two different locations (forehead, temples, top, behind, left-behind, right-behind, top-left, top-right, closer to neck) at any point of time (yes! I could feel even in such deep sleep). I forgot what it is like to not have a headache. A month after the surgery is when my headaches started clearing up and the world suddenly looked so much brighter.
I do experience headaches now and then but they are not so complex and often associated with strain.
“I did type by a ‘p’ this time. Why does it show an ‘i’?”
“I’m very sure I moved it sideways. Why did it move downwards?”
My hands weren’t quite listening to me. They would go on their own adventures and play candy crush without my interference. Sometimes, I was just an audience to the game they played. It took me very long to type because it required conscious control of my hands and looking at every key and sometimes, using one hand to make the other hand type. I tried to make my hands and brain implement the asynchronous handshake protocol for communication. Well, I must say it isn’t a very effective protocol when used by your body.
Limp Hands & Legs
For more than three months before surgery, I woke up with limp hands and legs that didn’t work until I stayed in bed for a couple of hours (on good days!). If I got up straight away, my legs would buckle on standing or not walk. It was really funny when I said, “My legs aren’t walking yet”. It’s difficult to understand how that works and I did get asked, “How can your legs not walk?”. But they didn’t! It was similar with my hands as they couldn’t grip objects unless I paid attention to not let go. My legs would work at some point in the day but I mostly lost control of my hands. I couldn’t hold pens or brushes or open water bottles for a long time. Sometimes, I had to hold one hand with the other to make it sign (which was the only writing I’d do) but that wouldn’t work for more than 5-10 min. All the table manners I was taught all my life weren’t of much use when I couldn’t hold a knife and fork the right way. On most days, I’d wake up saying, “My hands and legs are not working again today”. Please tell me I’m not the only person who finds it funny.
Alexia without Agraphia
Pure alexia, also known as agnosic alexia or alexia without agraphia or pure word blindness, is one form of alexia which makes up “the peripheral dyslexia” group. Individuals who have pure alexia suffer from severe reading problems while other language-related skills such as naming, oral repetition, auditory comprehension or writing are typically intact. (Source: https://en.wikipedia.org/wiki/Pure_alexia)
I could write but not read. I could read out what letters and words there were in the text and even tell what each word meant. But I couldn’t make sense of the words put together. It would take me very long to understand what a paragraph meant and by the time I got to the next paragraph, I’d forget what the previous paragraph meant. A very handsome young neurology resident told me what this condition is called and that I’ve it. He did make it easy to learn by being so cute but living with it in graduate school wasn’t the least bit funny. It was embarrassing and killed my confidence almost instantly because if you aren’t reading, then you’re doing nothing in the life I chose.
There were a couple of days I woke up with limp limbs and reading problems but I could clearly attribute it to me pushing myself beyond what I can clearly take right now. So, all is good!
In addition, I also suffered from constipation and loss of libido which are usually caused by most tumors and excessive medication use.
Irregular Sleep Cycles
I had chronic insomnia for almost five years but all the doctors I saw gave me the usual advice – turn off your devices, go to bed at the same time, try yoga? I’d hardly catch three hours of sleep on a regular day and five hours was a luxury. I was the enemy of anybody who slept for eight hours in my presence. I thought I was super human because I don’t need so many hours of sleep and I could function perfectly well when everybody else complained about how they got only five hours of sleep the previous night. If I got five hours of sleep, the world would be greener and the people I met would look happier miraculously 😀 All the advice in the world didn’t do anything to my sleep routine.
Then started September, 2014 and I suddenly started sleeping and continued just sleeping for the next six months. I’d sleep for more than 15 hrs a day and wake up sleepy and fatigued. There were days when I slept for more than 20 hrs, woke up only to eat what’s on the kitchen counter and went back to sleep. Most days, I’d have no idea which day it was because I would have been sleeping. The only times, I kept myself awake was when I had to go meet doctors because I had to do something to entertain myself apart from sleeping. It was as if I was sleeping for all the five years and I got such deep sleep I never even had dreams. I used to feel extremely drowsy even during the few waking hours I had.
Now, my sleep is mostly regularized. I get 9 hrs of sleep every night and take a 20-30 min nap in the afternoon. Because I’m still recovering, I don’t mind getting some extra sleep if my body needs it. But when I have migraines, I still sleep through the day and I lose control of my sleep cycles. I still have days when I might sleep for 12-14 hrs during thunderstorms.
So please take it from someone who has been on the extreme ends of the spectrum – get enough sleep, there is nothing in the world that can’t wait till tomorrow. Sleep regulates most of the cycles in your body. So if you don’t or can’t get enough sleep, get help immediately!
If I just as much used my hands, they would start hurting. By using I mean, showering, picking up a purse or eating. My physical exercise consisted of getting up from my bed and walking to the car (I lived in an apartment downtown!). Sitting in the car on the way to the hospital about 5 min away while someone else drove it would drain me out for the rest of the day.
If my pre-surgery fatigue was at a 10/10, my fatigue levels right now are at about 2/10. I do get a lot of things done now compared to a few months ago but I still have to go from 3/10 fatigue to maybe 10/10 on the energy scale. It takes a lot of patience to not be frustrated and disappointed with myself on a day to day basis because my life acquired a new normalcy and it is very different from the one before my symptoms started. Understanding neurofatigue (http://www.braininjury-explanation.com/unseen-consequenses-of-brain-injury/neurofatigue) helps with learning to be patient with myself.
Moving traffic, doorways, patterns on floors or walls, strobes, too much text or information make me feel very dizzy and nauseous. Now, I can handle most of them better quantitatively with the exception of strobes.
Pseudobulbar Affect, PBA
Pseudobulbar affect (PBA), emotional lability, labile affect, or emotional incontinence refers to a neurologic disorder characterized by involuntary crying or uncontrollable episodes of crying and/or laughing, or other emotional displays. PBA occurs secondary to a neurologic disease or brain injury. Patients may find themselves crying uncontrollably at something that is only moderately sad, being unable to stop themselves for several minutes. Episodes may also be mood-incongruent: a patient might laugh uncontrollably when angry or frustrated, for example. (Source: https://en.wikipedia.org/wiki/Pseudobulbar_affect)
Often times, PBA is confused with depression/anxiety and it goes un-diagnosed. I recognized it with a simple test – Do you feel the same way inside and out? In case of depression, you will. With PBA, you often don’t. I’d lie in my bed for hours just staring at the roof without any motivation to get up and do anything, not even eat when I know I’ve been starving. I’d wonder what’s wrong with my motivation and watch TED talks to pick me up. This happened for a couple of months before the headaches or fogginess showed up. It made me question all my life’s decisions (not that I made many by that time :P) although I knew I had a perfect life. It created a constant indifference to everything – to people, to myself, to life in general and even to death. I felt a state of mind in which sometimes, I would experience neither positive nor negative emotions and the other times, I’d pour my heart out into my diary and cry for hours. A little after surgery, I’d laugh uncontrollably for no reason at all and be embarrassed for doing that.
God bless the people who dealt with my PBA + PMDD. You wouldn’t have met a more irrational person in your life! But, I was sick and people were obligated to be nice to me and deal with everything I threw at them. I’m indebted to the victims of my PBA + PMDD eternally and love them more than ever.
After surgery, the PBA episodes get triggered when I have migraines from pressure/ temperature changes , I exhaust myself physically or mentally, stress, lack of sleep, or a combination of these factors building up. I experience apathy and amotivation for days and random crying episodes intermittently. Though the reasoning in my head says, “Wake up – show up – eat – drink else you will get dehydrated and fall sick – get to work…”, I will have no motivation to do anything. It is a miserable experience to fight this conflict. I feel very embarrassed to go out from the fear of bursting into a crying episode. The crying episodes last between 15- 45 min and the apathy last from a few hours to days. A severe episode of PBA leaves me exhausted as if every last ounce of energy has been drained out of my body and lasts for a full week.
I kept complaining to my friends how I couldn’t think straight. It was like I couldn’t push my thinking beyond a point because my head was in the clouds. This is as accurate as it gets because it’s a very hazy feeling to explain. It was as if I never really woke up completely for more than 6 months. I couldn’t tell reality apart, for example, if you convinced me enough that a certain thing which actually happened in reality didn’t happen, I’d believe you because my perception of reality was so limited. My life in that very moment felt surreal and I could never be sure what yesterday looked like.
Now, I usually have brain fog in combination with migraines or PBA.
I don’t know if it was my body compensating for the lack of serotonin(one of the four happy hormones) but I used to physically crave for anything sweet. The pineal gland is responsible for secretion of melatonin, a serotonin derived hormone which is responsible for regulating sleep cycles. I’m not sure how but my pineal gland got confused and secreted a lot of melatonin putting me to sleep all the time. I think I was low on serotonin which in addition to not making me happy, gave me insatiable sweet cravings. God bless the chap who invented Nutella. I’ve no clue how many jars I finished.
I couldn’t see any bright lights be it natural or artificial. Neon lights cause a immediately and I couldn’t attend classes or meetings due to that. I used to sit in dark rooms for days because I couldn’t go out to see even daylight. I could not wear any glasses because the weight of the frames caused a lot of pressure to build up.
After surgery, I use indoor and migraine glasses to cut out artificial and natural light (https://www.theraspecs.com/). I don’t need to constantly wear them now but I always carry both the pairs. I can even watch 2-D movies on standard screens now (no 3-D or IMAX).
Any sounds used to cause extreme headaches and confusion, even conversations. I couldn’t use a phone to my ear. I could only take calls on loud speaker with least volume level. Any music or TV or sometimes even people talking loudly or quickly caused a lot of dizziness and annoyance. I couldn’t walk on a street or stay in any public spaces like restaurants for long. People talking inside a car was very difficult to tolerate. Going to a party or a movie was out of the question.
I got much better with the noise sensitivity – I can now sit through a movie and even a party without loud music for a couple of hours. But I always carry ear buds in case I need to block out some noise and prevent over stimulation.
Loss in Hearing
Due to the noise sensitivity, I didn’t know I was losing hearing in my right ear. This was an incidental finding during one of my neuro ENT visits. There is a drastic difference in hearing between my ears but I couldn’t tell the difference until the sensitivity got better several months after surgery. I don’t wear a hearing aid but I can tell the difference in hearing. My surgeon said it might get better as the nerves re-generate. I am due for an audiogram in a couple of months to see if this improved at all. I will keep you posted on the results.
This was one of the early symptoms as I found out (incidentally!) that there was a slight difference between my left and rights ears a year and a half before my diagnosis. But the physician just said this may be due to using phone or headphones for long periods of time. I did follow his advice but the hearing in my right ear only worsened till surgery.
Nausea and headaches worsened each other. I had constant nausea for almost six months. After my initial diagnosis, I was on constant medication to reduce nausea so it wouldn’t lead to vomiting, dehydration, or worsened headaches. I took medication for nausea after each meal. Any change in pressure, temperature, motion, altitude, or medication worsened nausea.
Now, I have nausea from migraines which occasionally leads to vomiting. But I am not on medication anymore.
Problems with Comprehension
It first started with inability to read (see pure alexia) and then progressed to me not being able to understand normal conversations. Irrespective of language, I couldn’t comprehend language, sounds, visual signals, or even touch effectively. Sometimes, there was a delay in comprehension, other times, just dizziness and brain fog. I couldn’t attend meetings or classes and make sense of what people said. I couldn’t be a part of conversations that had more than one person (other than me). I could only understand if the other person spoke in a lowered pace and voice. I had to record all my doctors’ appointments and listen to them later to make sense of them. I couldn’t understand or learn new information well.
I still have problems with comprehension when I’m stressed or exhausted. It usually presents as brain fog first.
Although everybody experiences head rush from getting up or bending down too quickly, I have to more careful to make sure the head rush doesn’t increase too much pressure in my brain and lead to headaches or brain fog.
The injury caused by the tumor and surgery resulted in extreme weight gain, vitamin deficiencies, and hormonal imbalances (testosterone, estrogen, serotonin). I gained 30 lbs in a year through diagnosis and few months after surgery. Due to the fatigue and amotivation, I could not focus on getting enough exercise for a long time.
I am now trying to improve my metabolism and reduce inflammation in my body through healthy food and exercise. I had to take very high dosage of supplements for vitamin D (60,000 IU) for a few months. But apart from that, I am just being patient with my body to return to its original state.
Migraines are the most debilitating result of brain injury and they are triggered by a any or combination of a number of factors such as changes in barometric pressure or temperature, change in altitude, stress, exhaustion, inadequate sleep, restless sleep, foods (I don’t have a list yet), dehydration, etc. Often, they cause brain fog, comprehension problems, limp limbs, irregular sleep cycles, PBA, nausea and vomiting, and drowsiness. My scalp also becomes very sensitive and tender and hurts when I touch my hair. Inspite of keeping it short, my head and hair feel very heavy during migraines.
With chronic conditions like migraines, life feels like just surviving every day rather than living without fear. My daily life is severely limited by migraines because so I couldn’t find any medication that worked so far. Thunderstorms are my worst fear as they incapacitate me for days.
I lost memories of the visuals of most of life before surgery. I know the story of my life broadly but it is as of there is a distance between me and my life before surgery. I do regain some of them when I re-visit some places or even randomly. I did forget a few people’s faces and a lot of places (my college :O). Because I lost most of the visuals, I don’t feel very emotional about incidents in my past. I lost a lot of happy memories but then, I am not hurting from any of the sad memories so it isn’t such a bad thing after all. One of my friends who also suffered from amnesia said, “You have a life now and plenty of time to make new memories. Don’t worry about what is gone. You can be the person you want to be rather than the one you were.” Although I felt nostalgic about it at first, I am happy about not feeling hurt from any of the past incidents.
I have a prominent surgical scar and a dent at the back of by head. It is not visible through the hair but it took a long time to heal. I cut my hair short so that the hair doesn’t pull the skin around my scar.
Note: This is a living breathing document. It will change!
Life without the partner
She was on a date with her life – dressing up, writing, cooking, reading… they did everything together. It almost looked like a perfect couple with little tiffs like deadlines and charred meat to spice it up. A tear or two always came to her rescue when she gossiped to the diary. Her art was living and breathing. She took pride in taming the most beastly thing she knew – her desire!
She never met him, never even glanced! His glimpses always escaped her attention. He started to take over on the sly. Fall began and so did his work on her. Before his entry, she was a sculptor and the sculpture. She was on a holiday with her friends when he started creeping into her.
“I’ll be done with that assignment in 20 min.”
“But this is difficult and I’ve been on it for 2 hrs.”
“I’m going to be off in half an hour. Don’t waste so much time on it”
But she didn’t finish it in more than two hours. “I must be preoccupied or sleep-deprived or just tired! Maybe the assignment is actually difficult.”
The holiday ended in what she thought was sleep deprivation and exertion. But it ended in two weeks of just sleeping. Then came the headaches. Slips and misses at work followed. It took a while but it finally dawned upon her – she couldn’t understand what she read anymore!
There were doctors. First, a couple of them and then more. Then, what she thought was the revelation. He presented himself – they called him a cyst. But this was just the beginning.
“But I’m the first born. I have so much immunity that I never fall sick.”
“Infection? Tumor? Hemorrhage? All of them sound bad!”
“Could you fix me right now because I’ve work tomorrow?”
The fear didn’t sink in yet. Her will was undeterred because it was hardly put to test. Her energy levels were sinking and fatigue started crippling her days. But her drive to get this sorted was so unrealistic that anything could hardly happen!
Months and weeks slipped through her fingers. There weren’t any diagnostic procedures left to run on her. Consultations followed procedures but nobody said anything useful. It was like white noise passed from the doctor to the patient to the support system. Now, they called it a tumor and that’s all 21st century medicine could do in three months. she cooked and ate sometimes. The rest of the days, she spent in bed. The tumor wouldn’t tolerate any attempt to read or walk. She would be severely punished for that with better headaches and body pains.
The tumor grew. Her symptoms worsened. But the men of science found no correlation between her suffering and the images. She thought they would take her problems and own them. But they don’t and they didn’t. There was frustration and anger. Most of all, there was self-doubt. When sanity is in question, the best of us lose ourselves to the answer.
“Could you please put an end to it one way or the other?”. She ‘d rather die fighting for a life she could live rather than barely survive
Then came her knight in shining armor and it all happened like a fairy tale. Everything happened so quick there was hardly any time to think. She lived!
Mycroft Holmes: “In the end, are you really so obvious? Because this was textbook: The promise of love, the pain of loss, the joy of redemption”… There is a reason it’s textbook. Because it always works! It’s always said in retrospect but every moment was worth it. She thought she knew happiness and now came bliss. Then she walked into the sunset with all the hands that held her for now and for life.