Social Connections and Epilepsy: Discovering the impact of sharing one’s story

Social Connections and Epilepsy

After features in Indian newspapers, my first blog was published on Living Well with Epilepsy. That story focused on my background as an endurance cyclist and a marathoner and I shared that blog with my neurologist Dr. Manjari Tripathi who is also a professor in All India Institute of Medical Sciences – Delhi and she asked me to be a patient speaker on a webinar of Indian Epilepsy Association on National Epilepsy Day.

Public Speaking

Going live and speaking about how I overcome the fear of uncertainty of having seizure and accepted my chronic illness was a different kind of exposure for me. Two weeks later I was invited on another interactive webinar where people asked me precautions I take while cycling or running.

Safety on the road

Participants also asked how I manage myself if I get seizure during exercise activities. I let listeners know that I always wear an ID band which has my SOS contacts and wear a smartwatch which gives a location to my caregivers. And most important, whenever I feel an aura of having seizure I prefer to stop just to be safe.

On Becoming an Advocate

I then joined the Samman NGO group which is the Mumbai chapter of Indian Epilepsy Association and started attending their webinar as a member. One day they set up a meeting to discuss the 50 Million Steps campaign of International Bureau of Epilepsy. I suggested the group could do a Virtual Walkathon on a day before of the International Epilepsy Day. The group was enthusiastic and they managed the virtual event very well and raised almost 28million steps in 5weeks.

Due to pandemic most of the races I enjoyed participating in were cancelled or went virtual. I did do some half marathons virtually to keep myself motivated. And I got the idea of Virtual Walkathon from these virtual events only.

Social Connections and Epilepsy

Though people with epilepsy may be totally different from each other in nature, behaviour, experience and when start becoming part ofa community you learn new things, unlearn old things and relearn them in a better manner. This is what I discovered by sharing my story and the social connections within the epilepsy community.

Epilepsy Blog Relay: Former Christian Fundamentalist on Epilepsy and the Bible

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

Epilepsy and the Bible

For most of its long history, epilepsy was, and sometimes still is, viewed by Western religious institutions as caused by demon possession. The Biblical connection between epilepsy and demon possession is based on a passage from the New Testament, Mark 6:13. There are other passages in Matthew 17 and Mark 9 that are also cited as proof that epilepsy is a demonic possession.

I find it surprising that this interpretation of scripture is still in use, but by doing a Google search on the words “bible verses about epilepsy” I found a number of websites that provide detailed information about how to interpret Bible verses to prove that epilepsy is caused by demon possession. There are also a number of online training courses available that offer classes on how to stop seizures using scriptural authority and prayer to cast out demons. The websites I found are current and in use as of now, 2019.


Read more stories by Elaine

Suicide and the stigma of epilepsy

Using poetry to cope with TLE


When outdated ideas threaten health

The language in the Bible verses that are said to be useful for stopping seizures is disturbing to me because it describes people with epilepsy as having a “foul spirit,” a “dumb spirit,” a “deaf spirit” (Mark 9), “unclean spirit,” (Luke 9).
It is not clear to me that any of these New Testament verses are an accurate description of epilepsy or ever were. The writers of the Gospels wrote in good faith with the knowledge that was available at the time, but new knowledge is available now. I do not have a foul, dumb, deaf, or unclean spirit. I have a medical condition that can be addressed by knowledge gained from current medical research. To deliberately persist in using ineffective, outdated ideas about casting out demons as a substitute for effective medical care is irresponsible and unethical.

Steven Waterhouse is a Christian minister with experience in helping families understand how to apply Bible verses in a compassionate way that combines both Bible truth and medical treatment without casting out demons. In his book, Strength for God’s People, Waterhouse writes, “Through ignorance of medicine, clergy and church members run the risk of misapplying the Bible and harming innocent people in the process. Theologians, ministers and church members must understand a human problem accurately before applying the Bible to it. Failures to understand medical problems can lead to blunders in ministry.”

Truth that matters

When I was a Christian fundamentalist, I took the Bible literally word for word believing that all that mattered was the “truth” of God’s Word. I believed that as long as I was in God’s “truth,” I was OK. As a result of the life disruptions that I experienced because of a lack of accurate medical diagnosis for epilepsy, I began to learn that sometimes the only “truth” that matters is my “truth.” Using my own eyes and ears and not the lens of distorted Bible verses taken literally, I learned to not be afraid of being punished by God for seeking help from “secular” doctors and medicine. When I learned that I had a medical condition my mind was healed from the fear that I was sinful and being punished by God for leaving God’s “truth.” Then my body could heal, too.

A Proposal for Healing

An exaggeration of fear finds harmony in
An exaggeration of beauty.

Unsettled restlessness can learn to
Rest by the green springs of wine and hope.

Deathly terror can learn to
Drink flowing waters and live.

Broken trust can understand that
The wise and healing mother bakes bread.

The voiceless void of regression can produce one sound-
“I am not forsaken, I am not alone.”

My leaden body, filled with doubt and dread,
Will dance beyond gravity transcending the clouds.

An exaggeration of fear finds harmony in
An exaggeration of beauty.

by Elaine M. Reeves

 


NEXT UP: Be sure to check out the next post by Stephen at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

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Traveling with Epilepsy: Does air travel altitude lower seizure threshold?

Over 20 years ago, I told my neurologist that before menstruation, my number of seizures increased. I had never been told (or read) my monthly cycle could be a trigger, but my gut feeling said it was. My doctor assured me that menstruation was not a trigger and the increase in my seizures was mostly likely stress related. She stuck to the facts, as doctors do. 20 years later, The Epilepsy Foundation released that 50% of female patients of childbearing age, are likely to have an increase in seizures related to the hormonal changes that occur with menstruation; a physiological change. My story is not to discredit my doctor’s knowledge, but to show doctors are limited to what is scientifically proven at that given time. Our knowledge of epilepsy is constantly evolving.

Is there a link?

In December, at the American Epilepsy Society conference sponsored by Sunovion and The Epilepsy Foundation, I met people that said after air travel they had an increase in seizures and believed the altitude was the cause. When speaking to their doctors, they had also been told it was most likely stress related. Even with that explanation, most felt there could be something else to trigger the increase. While there is no evidence that the likelihood of seizures increases at higher altitude, I believe it isn’t far-fetched to deduct a change in altitude could lower seizure threshold. Here’s what I learned while researching.

The WHO reports aircraft cabins are pressurized at lower air pressure than sea level. The typical cruising altitude ranges 36,000 – 40,000 feet; air pressure in the cabin is equivalent to the outside air pressure at 1,800 – 2,400 feet. This low air pressure decreases the oxygen level in your blood, a physiological change. Decreased oxygen in blood can lead to hypoxia, the lack of oxygen in your tissue, organs, and brain. Severe hypoxia is a known flight risk and has also been linked to triggering seizures. Low oxygen levels won’t harm the average flyer, but what about those predisposed to seizures? I wonder if it’s possible that the physiological changes that occur with lower air pressure can increase seizure risk. It’s only in the past 10 years that we learned people with cardiovascular problems have increased risks with air travel. Imagine what more will discover 10 years from now!

Sharing experiences

Hearing stories of epilepsy patients consistently having seizures after air travel has helped me appreciate how lucky I am. I’m so thankful that overall I am a healthy person and that epilepsy doesn’t hinder my travels. Unfortunately, for many epilepsy patients this does not ring true. This also reminds me how far away we are from truly understanding epilepsy. As mentioned before, our knowledge of epilepsy is constantly evolving. The more we question, the more likely researchers will want to provide an answer.

Your Turn

Has flying impacted your seizures? Please tell us your stories and your seizure triggers.

Emily’s Perspective: Help your child through an EEG

With my EEG
With my EEG

Recently I have had a lot of questions on my Facebook page about how parents can help their young children with epilepsy and how to keep them calm during an EEG. Parents are often unfamiliar with the test and don’t know how to plan or prepare their child.

What is an EEG?

An EEG detects abnormalities in the brain waves or electrical activity of the brain. The brain produces electricity, which can be measured by wires glued onto the scalp. The EEG records and charts these electrical voltages. The normal up-and-down movements of the voltages create the wave-like patterns. Spikes on the EEG are markers of hyper-excitable parts of the brain, which mark potential locations where seizures may arise. The presence of spikes help when a doctor is in the process of diagnosing epilepsy.

Why Should My Child Have an EEG?

EEGs can give you valuable information about your child’s brain. It is possible that your child is having seizures or abnormal brain waves that are disrupting their development, but you can’t even see them. Not all seizures are visible. EEGs can also help provide information about sleep disorders or brain inflammation, but generally they are used as a diagnostic tool to determine what types of seizures your child may be having so they can be better treated.

How Do We Prepare for an EEG?

When I first went for my EEG I was so anxious, I was only 10/11 and I didn’t understand anything about Epilepsy, all I knew was that something seemed wrong, both me and my Family were on edge, not knowing what was going to happen. Usually there isn’t much that you have to do before an EEG. Generally you’ll be told to eat the same diet, take the same medications and sleep the same hours before your test, but sometimes your doctor may give you some special instructions, for me I got told to take my medication at a certain time, and to eat an hour before the scan.

Sometimes doctors want to see how your child’s brain reacts when they are tired or sleeping so they may ask that your child be “sleep deprived” for the test. Some parents worry about this, they wonder how to keep their child awake or what not to do.  This test is similar to a regular EEG, except that you will be asked to stay awake for 24 hours prior to your exam time. Children under the age of 12 who take this test are asked to remain awake from midnight until exam time.  They tell you to not eat or drink anything containing caffeine between midnight and the time of your test. A sleep-deprived EEG takes about one-and-a-half to two hours. They may want your child to fall asleep during the test so they can record sleeping brain waves.

Another bit of advice is to wash your hair the night before and not use any conditioners or products in their hair so the glue sticks better; so no hairspray or gel.

Does an EEG hurt?

No, You’ll feel little or no discomfort during an EEG. The electrodes don’t transmit any sensations. They just record your brain waves.

Who is suited for an EEG?

Anyone; An EEG is one of the main diagnostic tests for epilepsy. An EEG may also play a role in diagnosing other brain disorders, no matter the age or gender.

More information

For more information visit our page on epilepsy diagnostics.

In gratitude for my epilepsy

I don’t usually write blog posts for the Epilepsy Blog Relay because I feel it is an opportunity for the community to share their stories but so much has happened in my little world (not all great) and I wanted to share a little about my perspective on gratitude.

Gratitude for my epilepsy

My daughter was recently in the hospital following a very serious accident. She needed several surgeries and has fractures in her ankle and spine. During her stay at the trauma center, one of her roommates was a young woman who had a car accident as a result of a grand mal seizure. I had an opportunity to talk to her at the tail end of visiting hours one day and let her know she is not alone. This reminded me how grateful I am to have seizure control as I could very easily have switched places with her had the fates allowed.

Gratitude for my family

This is a big one for me right now. My sisters and I have become closer as a result of managing my parents health. If you are not aware, dad has congestive heart failure and mom has Alzheimer’s Disease. My sisters and I could not have taken this on without the leadership of my sister Alyson and the dedication of my sister Rachel. I am grateful for their support, for their leadership and knowing I can always count on them.

I am also grateful to my cousins who have more than shown up. They have been there when I knew I needed them and more importantly, when I didn’t know I needed them. They are a support network I can always count on and I hope they know they can call on when they need me.

Gratitude for my husband

Above all, my husband has essentially supplied the air I breathe. He brings positivity into my life and relieves worry whenever he can. He is the best thing that ever happened to me. I am lucky to have him and I am grateful to have him in my life. That’s not to say we have not been without our struggles. We have had our share. But I am pleased to report will celebrate twenty years of marriage this year despite a pandemic and a multitude of family health crises.

Gratitude for me

I have worked hard to focus on the positive despite my circumstances. I believe we have an opportunity to be grateful for this life. It’s not always easy – life and the being grateful. But if you give it a second and you start appreciating the little things, eventually you can begin to appreciate you and the space you take up in this world.

COVID and our Epilepsy Superheroes

This post is part of the Epilepsy Blog Relay™ which will run from June 1 to June 30, 2021. Follow along!

Well, much like everything else in this past year, I had every intent of being ahead of the game for the Epilepsy Blog Relay. I had a draft outline in February. And then, like so much, life happened. I was hit by a major migraine earlier in the month (yay epilepsy comorbidities), heightened stress at work (huzzah for endless Zoom calls), and then my two littles were excluded from school due to a potential exposure to a COVID positive person. And just like that it is the end of the month, and well, here we are in June.

But this spring is a perfect parallel for our year with COVID, and for many of us, our daily lives with epilepsy. In a post a number of years ago, I referred to having epilepsy as being akin to having a special superpower. In that blog, I finished by reflecting on what those of us with invisible disabilities, or our caretakers, can teach our over-harried, type A, success-obsessed culture. This past year has brought those reflections into even more prominence.

What to keep

As our world dealt with the reality of being confined to home, many of us felt the pressure in unique ways. But perhaps we also found some freedom. I, for one, found that I was finally able to get the right amount of sleep (even with a baby). Having the flexibility of a schedule at home has meant that I am perhaps more rested than I have been in a long time. And this is something I’ve want to keep going when I do return to a physical office.

Slowing down has also brought perspective on how much I say “yes” to, even when I shouldn’t. This has always been my most challenging part of having epilepsy. I am a social person. I love being with others. I overcommit my schedule. And even though many things in day-to-day life bring me great joy, it also wears me out. Physically, I can feel my brain being overstimulated when I don’t take time for quiet. In years past, busy work schedules combined with other social obligations often led to me being more stressed and more prone to seizures and auras. This past year gave me the ability to press pause on all of that. Granted, in some ways trying to work from home with two littles provided a different type of stimulation, it also eased the tempo and brought new opportunities to my life.

When things start to return to normal, there’s no doubt that I will be overjoyed at seeing family and friends, and embracing those who mean so much to me. But I hope that my family unit can keep hold of the slower pace and recognize the health it brings.

Broadening perspectives

On a more advocacy-related note, this past year has brought up many important (and overdue) conversations around health, wellness, work life integration, and even what does it mean to be in different levels of wellness. If you don’t already, I highly recommend following Alice Wong  and Matthew Cortland on social media. Both individuals are incredible writers and have some great reflections on being disabled and what it means with COVID-care, receiving vaccines, and more.

What to leave behind

In short this year has amplified the arguments and realities that many of us have had for years and brought issues into a more public, and dare I say, acceptable milieu? Business gurus, and Fortune 500 thinkers, and organizations from McKinsey, to Gartner, to Inc, the Washington Post and more are now talking about the importance of wellness. And not just you-get-gym-membership-as-a-work-perk wellness (though that is not bad), but having the deeper questions. Why do we work the hours we work? Why are we success-oriented? What if we could work differently? What if we do work from home since we’ve proven we can? I believe that as advocates for those with epilepsy, we take part in these national conversations. It is really a unique time to help make arguments for changes that enable us all to have a more healthy lifestyle.

And in the meantime, for all of us, I think we should take some time and reflect (in whatever way is most meaningful) on just what we have done over the past year. If you have somehow managed to keep your head above water, balancing a condition like epilepsy, with everything else, then I take my hat off to you. We really are superheroes.

Share your COVID/Epilepsy experience in the comments below

Emily’s Perspective: Newly diagnosed with epilepsy or epileptic seizures?

Emily's Perspective: Epileptic SeizuresThis post is part of the Epilepsy Blog Relay™ which will run from June 1 to June 30, 2021. Follow along!

Are you new to Epilepsy? Have you had a recent diagnosis of epileptic seizures in your family? Maybe I can help ease the anxiety with this column.

Epileptic seizures

Before diagnosis, when everything is still very raw, very scary, very “new,” it’s hard to get your head around things. It is important to understand that seizures take many forms. Before your doctor can prescribe the right treatment, he or she must figure out which type (or types) you have. Yes, you can have more than one type!

The tests can be scary, but to help you will find the purpose of all the tests discussed in the Diagnosis section. These tests will help your doctor determine not just to tell whether you have epilepsy, but also to tell what kind.

Seizure Types

Over the years, after tests, scans, appointments, both Mum & Myself seem to have become experts in epilepsy! Well not quite, but it’s amazing what you learn from something so scary. One thing we have learned is the commonly used names for seizure types. Seizures are generally put into two major groups of seizures, primary generalized seizures and partial seizures, which maybe you knew already.

Generalized Seizures

The difference between these types is how and where they begin. For example, primary generalized seizures begin with a widespread electrical discharge that involves both sides of the brain at once.

When I was first diagnosed, my EEG results showed epileptic discharges affecting my entire brain. I was originally diagnosed with having Petit-Mal seizures. Other types of generalized seizures include: myoclonic seizures and generalized tonic-clonic seizures.

Partial Seizures

Secondly there are partial seizures. These begin with an electrical discharge in just one limited area of the brain. Many different things can cause partial seizures, for example head injury, brain infection, stroke, tumor, or changes in the way an area of the brain was formed before birth. Many times, no known cause is found, but genetic factors may be important in some partial seizures.

Simple vs. Complex

Partial seizures can be broken down further, depending on whether a person’s awareness or consciousness (the ability to respond and remember) is affected. It may seem confusing, but it’s really good to know all the facts about different epileptic seizures, and it is also really interesting!

A partial seizure can be categorized as two types: We firstly have the simple partial seizure. If you experience a simple partial seizure, you will not lose consciousness, and it will last for a minute or less. You will remember what happened after the seizure has passed.

Then there is the complex partial seizure. If the seizure is complex, you may lose consciousness and you will not remember what happened. A complex seizure can last for a minute or two and may be preceded by a warning sign (an aura), such as a feeling of uneasiness or nausea. You may feel sleepy and confused afterwards, too.

New “Normal”

Having epilepsy does not make you weird, strange, odd, and it is not contagious. A lot of my old school friends thought they could catch it off me, they also thought I was very strange because I looked a bit “silly” when I was staring. My friends use to think that just because I didn’t jerk or convulse, that I couldn’t have epilepsy. But there are over 40 different types of seizures!

When you first start a new school, job or if you are meeting new people, it is difficult to know whether you should tell them about your condition (or your child’s condition if they are in school). I feel it is VERY important to let people know, because if something were to happen it is useful to have an “eyewitness account.” If you had to go to the hospital the witness could explain what happened and whether or not you hurt yourself. But not everyone agrees. You will have to make that decision for yourself (or your child). I wear an epilepsy band that has my details on in case I have a seizure in public.

It can happen to anyone

Anyone can have a seizure or a diagnosis of epilepsy, no matter their class, their lifestyle, how much money they have, anybody! If anyone wants to learn more, or if you have any questions, please leave a comment below and we will get back to you.

Are you newly diagnosed? Share your experience in the comments below.

Epilepsy experience creates a whole new family of supporters

This post is part of the Epilepsy Blog Relay™ which will run from June 1 to June 30, 2021. Follow along!

Stephanie’s Story

I always use to say I don’t have friends, I just have acquaintances and family, because once you became my friend you were my family. After being diagnosed with epilepsy, I believe that dynamic shifted in my life slightly.

My road to being diagnosed with epilepsy was a difficult one that lead to major changes in my life outside of my health. A few years prior, I had already had some health issues that caused me to go legally blind in both eyes. I remember I had my first grand mal seizure on a Friday morning, the first Friday my now ex-husband had been off in over a year.

All I remember is that I woke in the middle of the night and started listening to music, which lead to me falling asleep with headphones in my ears, as I often did. I later woke up to him hovering over me in tears frantically telling me I just had a seizure! I honestly couldn’t really comprehend what he was saying. Even when I was able acknowledge what he was actually saying, I did not have a full understanding of what seizures were.

I was pregnant at the time so my instant thought was my baby. I went to the hospital to get checked out, they didn’t say or do much but sent me home saying that I was fine. The next few days were hell, because I was in extreme physical pain, but I was also living in fear. “Why did I have a seizure?” “Should I sleep?” “Maybe I can’t listen to music at night anymore?” Crazy, I know, but add in pregnancy hormones, and it’s not like the hospital offered any guidance for me.

Finally, I started sleeping a little but I was still asking myself, “Am I going to have anymore?” And it felt like I must have spoken it in to existence, because I had another one. This time I fell out of my bed and cut my head on a glass table. However, this time I couldn’t seek medical care because I had no one to watch my then 1-year-old son, not to mention I wasn’t exactly excited about the wonderful care I received last time.

In a way it was ignored, until I started having what seemed like temporary black-outs, and I found I was waking up on the floor home alone, with my child. My ex flew my mother up to help. While she was there I woke up in an ambulance, because I had another severe seizure.

What is epilepsy?

When I finally saw doctor in the ER he just came in and said, “The definition of epilepsy is to have more than one seizure and you have had more than one, so you have epilepsy. I’m putting you on a medication to help control your seizures.”

Long story short is that the medication wasn’t working, and the level of care I was getting in D.C. wasn’t helping me. To complicate the situation, the stress of it all was just making me worse to point where when I wasn’t numb I felt insane. So I went to stay with my mom for a few weeks to see some doctors.

Epilepsy and Pregnancy

One of the doctors I saw was a high-risk OBGYN who admitted me to the hospital the same day where I spent the next three months. Basically the seizures sent me into false labor every time. When I was 20 weeks pregnant, I was already 3 centimeters dilated. So I was placed on STRICT hospital bed-rest, like I wasn’t even allowed to use the bathroom in my own hospital room. I was told that my daughter would likely be still-born or have multiple birth defects. Thank God I went full term, and she was born perfectly healthy with no complications during childbirth.

Those three months felt like an eternity at the time. A lot of people don’t recognize all the things that having epilepsy comes with outside is seizures such as nausea, anxiety, depression, family issues, and the list can go on. I personally didn’t recognize it and I was living it! My ex basically abandoned me, and our marriage fell apart. I suffered from postpartum depression, and I was extremely angry and resentful.

Family of supporters

However, during that time I gained so much awareness not just about seizures, my medications, and what they do to my body but about myself and who my real family is. I am a strong believer that everything happens for a reason and that your pain helps birth your purpose and that’s exactly how Afro Mom became what it is today.

Many of the people that I once called family disappeared, and I felt like I couldn’t always find the support I needed. So I tried to create a supportive space for me and others like me. Don’t get me wrong, the family that did step up went above and beyond, and I would not have survived if it wasn’t for them.

My seizures are still not 100% controlled, but I left that hospital a different person, with some acquaintances and a new family.

Have you had an epilepsy experience you would like to share? Comment below.

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