Updated on 22 June 2018: 3 years after Brain Surgery
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. When I say relieved, I mean the symptoms are not there on a daily basis but do come up when my body or brain is under a lot of stress. 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 the human body is a very complicated thing to mend.
I was told that it might take anywhere between 3-5 years 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. Apart from symptoms of the brain tumor, I experience problems from the injury caused by surgery and side effects of medication. At this point, it is very hard to point out the cause of each symptom. 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. I learnt to be mindful (the hard way) of any new symptoms when I begin a new medication.
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 a 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.)
Inability to process information
I’d go to this cafe beside my house every other day because they had delicious food for every day 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 in 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 at least 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. In persons with PPA-L, speech is fluent during the casual small talk but breaks into mispronunciations and word-finding pauses when a more difficult or precise word needs to be used. Understanding long and complex sentences can become challenging but the comprehension of single words is preserved.
I couldn’t make conversation without stammering for words especially when I had to talk to one of my colleagues or professors about work. It was as if I forgot all the jargon in my field overnight. I felt very incompetent and unqualified to participate in meetings.
Now, I experience dysphasia due to side effects of medication or when I’m very stressed out. The difference is that with aphasia, I didn’t know that there is a word for something or that I know that word. On the other hand, with dysphasia, I know that there is a word for it, and I know that I know it but I can’t remember it just now. I always keep a thesaurus open on my phone to get around dysphasia.
My ears would start ringing out of nowhere 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.
Increased heart rate
My heart rate would randomly go up and I’d hear my heart pounding while I am sitting or watching TV. It would take a while (5-15 min) to go back to normal without any help. I usually did not do anything physically intensive. Increased cholesterol levels may have contributed to fatigue and increased heart rate while taking stairs but nothing explained the increased heart rate while lying down.
Loss of temperature sense
You obviously know where I live and how cold it gets here. I had a minimum to no sensation of cold even during winter and I could not tell how cold it got. I could go out in the 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 foods tasted the same except Nutella (of 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 a slightly blurred vision only for a couple of hours in six months and I’m not thankful for the new workout I tried.
For more than 6 months, I could report at least 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.
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 ” 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. Now, I only have issues with reading or writing when I have severe migraine attacks.
Sleep paralysis is a feeling of being conscious but unable to move. It occurs when a person passes between stages of wakefulness and sleep. During these transitions, you may be unable to move or speak for a few seconds up to a few minutes. Sleep researchers conclude that, in most cases, sleep paralysis is simply a sign that your body is not moving smoothly through the stages of sleep (Source: http://www.webmd.com/sleep-disorders/guide/sleep-paralysis#1-3).
I used to have it quite often before surgery. Once or twice even while awake. I was taking a shower one day and realized I couldn’t move anymore. I stood in the bath for almost 30 min and there was nobody in the house I could shout for help. I was so scared that I thought I was going into a coma or something bad was going to happen. But after 30-35 min of being scared for my life, I was able to move. I went out of the bathroom and only saw my roommate’s puppy. So I said, “Bailey, please don’t let me die today.”
I called the emergency line and the nurse practitioner thought I could have had a stroke. So I went to the emergency room but they didn’t see any signs of stroke. The ER physician contacted my neurologist and neurosurgeon (not the one who removed the tumor). Both asked the ER physician to discharge me and increase the dosage of Diamox (to reduce intracranial pressure).
Depersonalization disorder is one of a group of conditions called dissociative disorders. Dissociative disorders are mental illnesses that involve disruptions or breakdowns of memory, consciousness, awareness, identity, and/or perception. Depersonalization disorder is marked by periods of feeling disconnected or detached from one’s body and thoughts (depersonalization). The disorder is sometimes described as feeling like you are observing yourself from outside your body or like being in a dream. However, people with this disorder do not lose contact with reality; they realize that things are not as they appear. (Source: http://www.webmd.com/mental-health/depersonalization-disorder-mental-health#1)
As I kept losing control of more and more of my body functions, my consciousness started isolating itself (even from cognition) and looking at my body as a container rather than a wholesome person. It could have also been a coping mechanism to deal with the chronic pain and fatigue. It is hard to describe as some of the psychiatric symptoms tend to be philosophical. I don’t know what that feels like anymore but I found this excerpt from my diary entry on 15 Jan 2015:
“I want you to picture this scenario – one of the headlights of your car broke and needs mending. What do you do? Do you stop going to work until you get it repaired? Or do you still keep doing everything as usual and get it repaired when you find the time? I’d assume the latter.
A lot of you have been asking me what it is like to have a tumor. Well, quite similar to the above scenario, only a little different. If you hurt your hand, your brain would know it. But if there is a problem with the brain, I’d know it! The body is very similar to a vehicle – it gives you a physical manifestation, the brain being the control center. The subtle difference is that there is a ‘me’ that the brain belongs to. So, in short, to have a tumor in your brain is like separating your consciousness from the rest of your body and then looking at what it has to offer.”
In addition, I also 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 superhuman 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.
From mid-September’14 and I suddenly started experiencing somnolence, sleeping irregularly 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 7.5 – 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 about 15 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 until tomorrow. Sleep regulates most of the cycles in your body. So if you don’t or can’t get enough sleep, get help immediately!
Issues with memory
It is interesting how you can differentiate the different functions of your brain when they are impaired. I could actually understand that I had difficulties with processing information, storing information, retaining information, and recalling information. Even when I could process information with some difficulty, I could not memorize it very well. Remembering and recalling placement of objects, paying bills, appointments, and other details (both minor and major) of my everyday life was very hard. I think being pre-occupied with the notion of getting well helped me get through everyday life but my neuro-psychologist saw it as an impediment to me feeling fine (well, I wasn’t fine and I was not going to let the inadequacy of modern medicine dictate how I feel).
One of the first symptoms I noticed is how impaired my working memory got. I could not remember simple things such as parts of sentences or a 4-6 digit code to copy. Two years post surgery, this is still an issue in my daily life that keeps popping every now and then. It presents worst when I try to multitask and push my cognitive abilities. I almost immediately get fatigued and my brain goes into this foggy sleepy mode triggering narcolepsy or a migraine (depending on how well I was doing the previous days).
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. It was as if I was exhausted by existing.
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 5/10 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. Regular and controlled exercise helps with increasing energy levels gradually but migraines regularly interrupt that and set back my progress.
Mental fatigue comes in thinking processes, learning and information processing, watching television extensively, doing computer activities, but also solving problems, interpreting the behavior of other people and thinking logically. (Source: http://www.braininjury-explanation.com/unseen-consequenses-of-brain-injury/neurofatigue).
Critical thinking can exhaust anyone but sometimes thinking about simple things such as what to wear or eat is exhausting. With brain injury, mental fatigue caused by decision making or critical thinking can be experienced as physical fatigue. I can feel my body physically shutting down after a few hours of writing or brainstorming. I have to call it a day and get a lot of sleep to recover. My body needs a lot more sleep than before and I don’t feel recharged until my brain had time to recover from sleep. I have to plan my week with a day of rest in between to make sure I don’t crash.
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 undiagnosed. I recognized it with a simple test – Do you feel the same way inside and out? In a 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 + PMS. You wouldn’t have met a more irrational person in your life! I’m indebted to the victims of my PBA + PMS 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 about 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 also experience brain fog in two ways – (1) when I feel numb and my brain can’t think (2) there is hyperactivity in my brain and my brain feels like pulp. Although both lead to challenges with critical thinking, the experience is very different.
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.
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.
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 to 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. Now, I only experience this when I have severe episodes of migraine.
I am able to hold a pen and write a page or two on good days. But my handwriting changed due to the loss of dexterity. I can’t write long strokes or cursive smoothly anymore. I still cannot hold a thin paintbrush and draw straight lines or paint on a small area. On other days (randomly sometimes), I cannot hold a pen and write a paragraph. My hand hurts severely (as if the nerves are pulling back and muscles are cramping) when I try to force it to write before giving up completely.
I didn’t know for more than two years that I also had psychomotor impairment in my left hand. Because I’m right dominant, I only noticed that I can’t do things with my right hand as well as I used to. It was only when I got a neuropsychological assessment that I found out that my left hand is more impaired than the right. The neuropsychologist was surprised how someone couldn’t notice this level of impairment.
Challenges with balance
Three months after surgery, I got tested for balance and found out that the left side is worse than right. I’ve been working on exercises for improving balance. I didn’t get an assessment but I think balance on my right side is back to normal.
“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 fingers weren’t quite listening to me. I also noticed it when playing games on my phone because they move sideways onstead of down. 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. Now, I only present this symptom when I have a migraine, try to push my cognitive abilities, multitask, or try to do things quickly rather than at a steady pace (ex., when I try to type quickly at my pre-injury, my fingers start misfiring and soon, my hands become limp).
I’ve episodes of severe, shooting or jabbing pain that feel like an electric shock in my ears. Each episode might last a few minutes and episodes occur close together. Then, I’d go without any episodes for a few months. At first, I thought it was just the nerves regnerating in my ears because I had the same experience with facial nerve regeneration a few months after surgery. But these happen only in my ears and haven’t stopped in two years. Right now, I’m not seeking any treatment for it because it is not so bad that I spent time and effort on pursuing it.
I couldn’t see any bright lights be it natural or artificial. Neon lights cause headaches, dizziness, and nausea 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 outdoor 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 the loudspeaker 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 earbuds in case I need to block out some noise and prevent over-stimulation.
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 worsening 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 and medication which occasionally leads to vomiting. But I am not on medication anymore.
Problems with Comprehension
It first started with the 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 at 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 a 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.
Any change in medications or living conditions causes my body to retain water and plump up like a balloon. It also goes down by itself as my body gets used to the new conditions but it is bothersome when traveling (when my clothes or finger rings don’t fit) or people around me say I gained more weight (shakes my self-confidence). I had to take medication only once so far on a month long trip.
This is one of the visual symptoms. Although invisible illnesses are hard to live with (some people do say things like, “You look fine to me”), visible symptoms are equally annoying because it is hard for others to empathize with your struggle underneath. I’m fortunate to have as much support as I do from friends, family, and workplace. It is still hard for them to empathize with something that is unfathomable.
Swelling of neck
Whenever I experience stress or strain, the intracranial pressure increases causing my neck to swell up. It causes increased headaches and a feeling of heaviness in my head as if a huge rock is sitting on top of my neck. I don’t have a diagnosis of IIH (Idiopathic intracranial hypertension) but mild symptoms related to it are common after craniotomy. It also triggers some of my cognitive symptoms such as comprehension problems.
Restless Leg Syndrome (RLS)
Restless legs syndrome (RLS), also called Willis-Ekbom Disease, causes unpleasant or uncomfortable sensations in the legs and an irresistible urge to move them. Moving the legs or walking typically relieves the discomfort but the sensations often recur once the movement stops. Symptoms commonly occur in the late afternoon or evening hours, and are often most severe at night when a person is resting, such as sitting or lying in bed. Since symptoms can increase in severity during the night, it could become difficult to fall asleep or return to sleep after waking up. RLS is classified as a sleep disorder since the symptoms are triggered by resting and attempting to sleep, and as a movement disorder since people are forced to move their legs in order to relieve symptoms. It is, however, best characterized as a neurological sensory disorder with symptoms that are produced from within the brain itself. (Source: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Restless-Legs-Syndrome-Fact-Sheet)
I had severe RLS in my insomnia days which in turn made it worse. Now, I experience it when I’m sleep deprived, exhausted (physically, mentally, or emotionally), or don’t get enough exercise. Migraines, limp limbs, and RLS play against each other and I dread having to deal with them at the same time. The only thing that helps (sometimes) is a heat pack on my legs.
Migraines are the most debilitating result of brain injury and they are triggered by any or combination of a number of triggers:
- Sudden temperature change
- Barometric pressure change
- Extreme weather (heat is worse than cold)
- Sleep deprivation & jet lag
- Physical exertion
- Overstimulation (any sensory)
- Low/ high humidity (than average)
- Loud noise
- Garbled chatter
- Neon lights
- TV/computer (bright or loud)
- Reflective surfaces
- Last call duration/ excessive phone usage
- Ice water / cold drink
- Brain freeze
- Visual clutter / running patterns
- Sleeping flat (I get away with just 15 degrees elevation on good days)
- Lifting weights (> 15 lb below shoulder level and >6 lb above shoulder level)
- Increase in blood pressure (medication)
- Increase in blood circulation to brain (from bending or activity)
- Caffeine (this has been getting better)
- Excessive mental activity
- Multitasking (driving)
- Emotional exhaustion
- Menstruation (the cramps and migraines compete!)
- Diesel smoke
- Tobacco smoke
- Some medications
- Spicy food (and I grew up in India!)
- Bright sun coupled with exhaustion/ sleep deprivation/ jet lag (got much better with daylight though)
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. In spite 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 started taking a daily prophylactic for migraine after trying to deal with it naturally for almost a year and a half. Although it is effective in reducing the intensity, the medication cannot help much without changes to lifestyle. So far, the things that helped me reduce the number and intensity of migraine attacks are:
- keeping a routine (my body craves for homeostasis) and balancing the amount of activity each day (I have learnt to say no to things that might create stress or require a lot of physical or mental activity. Although being in graduate school is like punching my brain with no routine and critical thinking day-in and day-out, I try to balance it out with days of easy and hard tasks)
- working out every day (I mostly do 20-30 min beginner workouts without putting much pressure on my neck or head avoiding a head rush at all time)
- hydrating through the day
- staying in a temperature, pressure, and noise controlled environment (reduce sensory overload as much as possible. This is the hardest and sometimes, impossible to do)
- eating fresh vegetables and fruits
- sleeping 7-9 hrs every night and taking a nap in the afternoon as needed (listening to my body when it needs more sleep helps me from getting a migraine attack before I recuperated from the previous one)
- reduce sugar and salt intake (I don’t buy lunch meats or ice cream anymore)
- avoiding caffeine after 4 PM and sweets after 6 PM (I stopped drinking coffee after surgery. I only have green tea or matcha before a workout and limit it to 1 cup a day.)
- reducing icy drinks or foods (I always ask for hot water at restaurants. Ice water gives me an instant headache on most days.)
- reducing stress as much as possible (This has been almost impossible as it is easy to get overwhelmed from overstimulation or being unable to function at a normal pace due to the impairments. I meditate every day to reduce stress but it still remains the worst trigger of all.)
Loss of Hearing
Due to the noise sensitivity, I didn’t know I was losing hearing in my right ear. 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. At that time, he only diagnosed decreased sensitivity in hearing in my right ear. I did follow his advice but the hearing in my right ear only worsened till surgery. The actual hearing loss was again, 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 regenerate. I got it checked two years post-surgery (May 2017) and I still have mild to moderate conductive hearing loss in my right ear which I’ve been told will not reverse.
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 mostly have emotional memory loss but some episodic memory loss too. 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 in the back of my head. It is not visible from the hair but it took a long time to heal. I keep my hair short so that the hair doesn’t pull the skin around my scar and make it sore. Although it healed and the scar formed, it doesn’t take much for the scalp around to get sore and sensitive to touch.
Note: This is a living breathing document. It will change!