During School, College, Job and many times in my life- I have been asked, “Ohh what did you say, You are Epileptic, I am so sorry to hear that, but I don’t know what it means.” This blog is an attempt to answer that query from the perspective of someone who lives with it. The motivation is to help bring awareness about this disease that affects around 65 million people worldwide including me. But sadly is not TALKED about.
I had my first seizure, when I was just 3 months old. The only symptom – I didn’t Blink for a full two minutes. My mother noticed that something was amiss. She rushed to a neighbour’s place wondering what had happened to me. However, by the time she took me in her arms, and reached their place in a panic mode, I had recovered. Thus, the very first episode was ultimately dismissed lightly.
But, then the seizures became very frequent; sometimes occurring twice a day. My parents were scared, they feared whether I would be able to survive and thrive in this world. They did all that a parent could do – studied about the disease, joined clubs and forums, discussed with relatives and well wishers and reached out to all doctors they could contact. They also tried various alternative treatments- homeopathy, ayurveda, home remedies even took me to an ashram in Rishikesh. I was being fed all kinds of medicines, home remedies, parents took a variety of opinions- from mystics, to doctors and relatives. But it took some time and 20+ such seizures, before I was properly diagnosed with Epilepsy. Yet, even after the diagnosis, CT Scans and MRI’s and various medicine prescriptions – still, nothing worked.
Keeping a Diary
My mom started keeping a record of all the symptoms, date and times of all the seizures. Most of them were febrile in nature, that implies that they were preceded by fever. Needless to say, my parents would freak out every time I caught cold or fever. Food items, kids of my age enjoyed- Icrecreams, soft drinks, junk food were BANNED in our house. Over the years, different doctors eventually found medicines that would manage my seizures and side effects.
Living the NORMAL+ life
Because of my parents and family, I was able to lead a normal life (as normal as it could get). I was able to excel both academically and in my co-curriculars because of the strong encouragement of my near and dear ones. Yet, the journey wasn’t easy, and trust me epilepsy teaches you empathy and that everyone has their own demons to fight. After following with the routine and braving the storm, I now live a normal life. I enjoy taking all the rides in Adventure park, tried my hand at swimming, I am now even learning to Drive. I lived a corporate life, staying in Bangalore alone, away from my parents for the first time in life. I now look forward to carrying forward my research and helping others brave the storms in their life. If I could face it, you can too! Do let me know if I could be of any assistance to you 🙂
5 Ways epilepsy is life changing
1. Your parents are bound to worry.
Miss a call at 2 AM and they are likely to loose their sleep. Keep them updated about your whereabouts. Share your parents phone numbers with your peers and friends! They are bound to get a lot of calls (Trust me, I have seen this happening).
2. Some food items and activities might become rare.
I had to take permissions before having an icecream! Fret not, you will always find alternatives. Once you are stable for a long duration, with the permission of your doctor you can even swim and drive!
3. Changes in Sleep Cycles
Epileptic medications are bound to alter your sleep cycles. You might want to sleep a whie longer than everyone around. This is quite normal!
4. More Efficient with Your Time
You will start respecting time : As a result of longer sleep cycles and less time at hand, you will tend to become more time efficient, and also a bit more motivated.
5. You learn the difference between sympathy and empathy
You recognize the fact that each individual has their own demons to fight! Empathy comes like second nature to you.
5 Tips to Make Living with Epilepsy Easier
1. Routine is Important
Take your medications on time. Time your body clock, manage and time your food and sleep well.
2. Do not be afraid, break the taboo
Keep everyone well informed about your health condition. They should be aware of how they can support you during and after a seizure.
3. Have some faith
Never loose faith, trust that with time and a bit of patience everything would get better. Also have faith in your doctor.
4. Yoga and breathing helps
Focus on your health, try some yoga and practice pranayams, this really helped me. If yoga is not your cup of tea, join an indian classical dance class- they have the same therapeutic effects 🙂 (Watch my Dance Guru Smt Kanaka Sudhakar, talk about these in detail, here 🙂 )
5. Focus on developing a strong support system
Join communities, dance, find a hobby, read books and meditate(Alone it is tough, I recently joined this great community (In an attempt to better my sleep cycles and getting up early) here )to aid your healing process.
I have always felt the need to start a community for people facing epilepsy especially the caregivers since they need some mental and emotional strength to brave the storm. I have just started an initiative in this direction. Help spread positivity and awareness 🙂 Its a unique fun filled event on Purple Day going live virtually on 26th of March – https://www.instagram.com/indiagoespurple/
Andrea is living with absence seizures but that doesn’t stop her from performing beautiful music with her band Motion Device. In fact, the group has recently released a beautiful piano cover of Boston’s “More Than A Feeling.”
Andrea has learned to cope with epilepsy and not let it get in the way of her aspirations to be a full-time musician. When people see Andrea in a Youtube video or live on stage with her rock band Motion Device, for the most part they see one thing – a musician.
Motion Device is an independent hard rock band from Canada led by vocalist Sara Menoudakis, along with Josh Marrocco on guitar, Andrea Menoudakis on bass/keys and David Menoudakis on drums. They just released their fourth studio album titled ‘Motion Device IV’. The album was recorded, produced, mixed and mastered by the band in their own fan-funded recording studio. With over 100,000 social media fans and more than 20 million views on their channel, they’re quickly becoming one of the brightest up and coming bands in North America.
Diagnosed with epilepsy
At the age of seven, Andrea’s parents noticed she started having short staring spells. She would stop whatever she was doing for a second or two and then continue where she left off as if nothing happened. The staring spells began to occur more frequently and last longer than a few seconds as she grew older so the time came to seek out a medical opinion. After seeing her doctor, a few specialists and getting some tests done, she was diagnosed with epilepsy. The doctors told the family Andrea had been having absence seizures.
Although the seizures seemed to disrupt Andrea’s life more often as the years passed by, she still managed to lead a normal life. Her family decided to try and avoid prescribed medication for some time and tried to treat her holistically but nothing really helped. However after a couple grand mal seizures her parents decided to again seek out medical treatment. Andrea was prescribed an antiepileptic drug by an epilepsy specialist and she’s been taking it ever since. It’s the only medication she takes and it seem to have helped keep the grand mal seizures under control and minimize her petit mal seizures as well – but she still has ‘daydreams’ as she calls them a few times a day. In fact, she composed a song on piano about epilepsy called ‘Daydream’ when she was sixteen.
It’s safe to say Andrea feels most comfortable with an instrument at her finger tips but there’s a lot more to her than meets the eye. After she finished high school with honours she immediately began working full-time as an instructor in an after-school tutoring program. Besides teaching, keeping busy with her music and playing in a rock band and of course Andrea has epilepsy.
Emotions are at the heart of what makes us human. They are a part of everyday life for everyone. We all have challenges to deal with, but for people with epilepsy there are certain factors in our lives we share. First, there are seizures and side effects from the medications and other treatments. Then, there is the social element. Epilepsy is still a misunderstood disorder despite our activism. It is getting better, but myths still persist. Finally, there is the role of support in the home.
Whether you are struggling with uncontrolled seizures or your seizures are fully controlled, you likely have to deal with complex emotions in addition to medications and the side effects they cause. Many of the anticonvulsant drugs can cause sleepiness and blurred vision, as well as many more severe side effects including anxiety and depression. They can even lead to suicidal thoughts.
Your Medical Team
It is important to have a good medical team backing you up, listening to your every need. The relationship between doctor and patient is not one-sided, in which the doctor tells the patient what to do, which medicine or treatment to take. It is a partnership. You, the patient, are an active part of your medical care. If you are unsatisfied with how your doctor is treating you, despite all your efforts, it is time for a second opinion.
In the 1990s, when the VNS came out, my neurologist was excited about it and offered it to me as a treatment. At that time, putting a machine in my body was not the most palatable thing I had in my mind, so I declined. However, at every appointment after that, my doctor kept pushing me to have it. The more he pushed, the more I rebelled. It was time to find a new doctor who would listen to me, and I found one.
Your Epilepsy Support Group
This is where a good epilepsy support group comes into play. The resources they provide, such as a list of excellent epilepsy specialists, is invaluable for us struggling with epilepsy. Their meetings are the perfect place to talk about your problems. Everyone will relate and may be able to give you advice. Before COVID-19, transportation was a problem for some to get to the meetings. Now that they are online, it is a lot easier. Unfortunately, if you don’t have a computer with internet access, you won’t be able to enjoy these benefits.
One thing to remember about support groups is that there isn’t a one size fits all. You may have to shop around to find one that you are comfortable with and suits your personality. The good thing is that you are not limited to a group in your vicinity. You can even join a group long distance. For example, if you live in Alabama, you can join a support group in California. Not only that, there are groups on social media. It is liberating to have all these choices. I am lucky to have access to two support groups in Orange County, California, where I live:
They are different but good in their unique ways. I love the fact that I don’t have to worry about transportation!
Your Caregiver Network
However, we need more than an epilepsy support group. Family and friends are the bedrock of your well-being. They are always there for you when you need them. They may not understand everything you are going through, but they are committed to your health and happiness. For adults with epilepsy, these relationships can be difficult to manage, especially because of our lack of, and desire for independence due to seizures and side effects.
Although caregivers most likely are overprotective, it is only because they care. It is hard not to be annoyed, but we have to remember they have the best intentions in mind. Open, honest communication is the key to a strong relationship. Even I have to remind myself about this. At times, I get frustrated with my lack of seizure control. However, I have a very good support system. My family cheers me on in everything I do. I take classes at the local community college and play the piano on my own.
Relationships and Two-Way Communication
Our emotions as people with epilepsy are dependent on many factors including our individual medical situations, access to good epilepsy social networks, and a support system of family and friends. The relationships we form with our doctors and medical team is also crucial to seizure freedom. And, without a support group, it can be more difficult to live with your epilepsy. There is a wealth of resources for people with epilepsy. It is a matter of finding the right one.
Finally, the ones who love you must be by your side all the way. All of these relationships have one thing in common: they require two-way communication. If this does not exist, it is going to be extremely difficult to achieve what you want: seizure freedom and an excellent quality of life. However, with all of these elements intact, it is possible to have a good, emotionally satisfying, and hopefully seizure-free life. Let’s hope it comes true for every one of us.
Twenty years ago I underwent a surgery for a tumor and I have been living with epilepsy for the past 12 years. I have tried a bunch of different medications and finding the right treatment has been a process. It has been two steps forward and one step back. Lately, it feels like one step forward and one step back. Basically, I’m treading water.
VNS and Intense Exercise
I’ve had to give up triathlons. Slowly, I’m starting to get back into the sport but the VNS is not yet catching all of my episodes. In fact, the more I push to compete in races, the more likely it is that I will have a seizure.
I would typically have an aura but now, I am not getting this aura with my training. I need to discuss with my doctor if he needs to up the intensity of the VNS to see if it will capture the times in which my heart rate hits a level that may indicate that I am having a seizure. It is a false-positive my heart-rate is elevated by choice.
Is anybody else in this kind of situation? Did an increase in intensity of VNS therapy help tame the problem? I don’t want to give up something, like triathlons, that I enjoy. I don’t have to push myself as hard so that I can keep my heart rate in check, but its hard not to want to compete. I am not the kind of person who will sit on the couch and accept a sedentary lifestyle. I think that this is when the VNS may be working because my heart rate is low.
What to expect
The only side effect I have experienced from the VNS is a change in my voice. It also takes a few days after my settings are adjusted for my body to be accustomed to the new levels.
Has anybody had the RNS put in? What do you feel about the RNS? What was the recovery like? I had surgery not related to the epilepsy. Ironically, my doctor suggested that one of the potential ways to get rid of the epilepsy is to go back in for surgery. However, that really isn’t an option in my mind (no pun intended).
Here is my biggest question. Is there anybody here who lives an active lifestyle which raises the heart rate and has been experiencing more seizures.
Has anybody have a VNS and then opted to get an RNS? Does your epileptologist allow both devices to run at the same time? If so, have you seen any positive changes with seizure control while taking anti-epileptic medications. The way that I see this: there are 3 forms of defense mechanisms at work in this situation to try to control those darn seizures. I want to be able to compete without having fear that I may have an episode while exercising.
This is disheartening now that COVID-19 is starting to become understood better. Less social distancing may be on the horizon. If that is the case, that means that events that were cancelled for the past year may now start to reopen. I cant wait to sign up for the 5k, 10-miler, and half marathon. I want to get back on my bike and ride the country roads.
Reaching Out for Help
My main goal is to try to network with someone who is physically active and took AEDs but didnt have 100% control of their seizure. The next phase was to have the VNS along with AEDs but still didnt get seizure relief (i know that these paired together is a cure). I’m at the point in which someone fit the criteria that I explained while adding the RNS into the equation. I’m trying to gather information about treatment options so that I can speak with some knowledge to my epileptologist to see if he would consider the RNS procedure
Any extra help from somebody in the same boat as I am would be greatly appreciated.
We are all in this together. Its a special club that we belong (honestly-a club that i would sooner not want to partake) but there isn’t a whole lot that we can do other than support one another. We all have to stick together. I wish everybody the best of luck in your journey to a full, exciting life that you want and not to loose out on some of experiences that others may have. We can do it. With proper precautions we can do what our non epilepsy counterparts can have. We just may need to approach it from a different angle.