Epilepsy Blog Relay: Michael takes a positive approach to an epilepsy diagnosis

This post is part of the Epilepsy Blog Relay™, which will run from November 1 to November 30, 2018.  Follow along!

Michael’s Story

More than 25 years ago, I was living a life I loved. I was healthy, recently married, living in a newly purchased home, and had just become a partner at a successful construction company building high end custom homes. Building homes allowed me to be creative, engage my imagination, and help people achieve their dream home. I had no idea everything I loved in life would soon be shattered by epilepsy, losing everything I cherished.

One evening after getting home from work, I was taking a shower and, that’s all I remember. I woke up in an emergency room being told I had passed out in the shower resulting in a small impact fracture in my skull and multiple neck fractures. At this first, of soon to be many, ER visits, I wasn’t told this was the start of my epilepsy journey; I was told this was going to be a cardiac journey. I figured my doctors knew what they were talking about so I continued working and driving.

A little bit of luck

Driving home one night I passed out. I was told my work van went through an irrigation building and ended up in an irrigation canal full of water. Someone was looking out for me that night because an air trauma nurse was going to work and her headlights hit my van’s tail lights sticking out of the water. This is when my cardiac journey ended and my epilepsy journey officially started. I was told I have epilepsy. I didn’t know anything about epilepsy or seizures. The prior year and a half all I studied was syncope and reasons why someone may pass out from cardiac issues. I didn’t study epilepsy or learn how I would slowly lose my identity and feeling of self-worth. I felt helpless. I was becoming my epilepsy diagnosis.

I’ve lost track of the number of times I’ve woken up in an ambulance after someone called 911 because I had a seizure. At this stage in my life, I was experiencing very large seizures that resulted in broken bones and teeth, dislocated joints, torn muscles, lacerations, heart stopping, and constant mental chaos. I started accepting that doctors might not find a seizure treatment that worked for me. I found this treatment insight the motivating factor for me in changing my mindset. Instead of me waiting for seizure treatments to be found, I realized needed to be in charge of my own life and find ways to move forward.

Moving Forward

I was living my life in a constant and repeating cycle of what I call my four R’s:

  • Regenerative: post-seizure, re-growing muscle tissue, brain connections, my state of being.
  • Rehabilitative: through repeated actions to make myself physically and mentally fit again after a seizure.
  • Restorative: restoring my health, ability to speak, and have a restored sense of well-being.
  • Resilience: I was always amazed at how my body and mind was able to recover quickly from the trauma of seizures. Epilepsy tried to stretch me to the breaking point, through adversity and misfortune, but I was resilient, and, I recovered.

Small Smart Goals

I noticed during all the years of waiting for a seizure treatment to be found, I had put my life on hold. I decided to change, to become more focused on living in the present moment, to focus on getting through the day the best I could. Being present helped me know my body, my mental state, my environment, and my behaviors. I told epilepsy “I’m going that way, if you want to tag along, that’s fine, or if you want to stay behind, that’s even better.”

I set some monthly goals like paying rent, but the most impactful thing I did was to break my day down in to small daily goals. From waking up in the morning to going to bed, my small goals were purposeful and made me feel good because I was able to accomplish them, like walking my dogs, or making someone laugh.

Back to school self-image and self-worth

I realized I didn’t really know who I was anymore. Epilepsy had stripped away my sense-of-being many years earlier. After years of mental and physical trauma from seizures, I needed to assess what my abilities were. I decided to go to college. My first class was ‘Career Explorations’ to help me possibly find a job I would enjoy while also helping me feel I was providing for myself. Going back to college helped me become aware of the effects years of seizures and medications had on me. I found I had to be creative in how I learned and completed my class assignments.

Here are a few examples:

  • Through my college’s disability center, I took all of my class tests in the testing center, where I was able to have extra time taking tests.
  • I found I shouldn’t wait until one or two days to start an assignment before it was due because the odds that I would have a seizure preventing me from completing a class assignment was pretty high.
  • I noticed seizure medications had a strong effect on my cognition, so I planned my test taking when I felt my medications weren’t affecting me mentally.
  • I got off the bus one stop before my college to get in a little walking exercise, ease my post-seizure body pain, and get a little more blood flow to my head.
  • I found if I did all of my assignments at the beginning of the week, I could relax the rest of the week, while all of my classmates were stressed because they waited until the day before the assignment was due.

Mindfulness to manage the journey

One topic I studied in college for many years was mindfulness. Using mindfulness in my own life gave me the ability to be aware of things happening in my life in the present moment. Mindfulness helped me become aware of my feelings, thoughts, and sensations within my body. When I found my body was tight, I could take some deep breaths and focus on relaxing muscles that were tight. If I noticed I was feeling sad, I found something fun to do like playing with my dogs, which always brought a smile to my face.

If I was having negative thoughts about my life, I quickly reminded myself how far I’d come and things I’d accomplished, even if it was just getting through the day! I feel mindfulness was the most important thing for me to discover many of my personal insights during my epilepsy journey.

A positive approach

So, how am I doing today? My epilepsy journey continues today, but what’s different since the start of my epilepsy journey 25 plus years ago is that today I’m in charge of my journey. I decide who I am and what I’m going to do. Yes, I still have epilepsy, still take a seizure medication and use the RNS System.

Today, I live a pretty normal life. Is it the same normal life I lived 25 years ago? No! It’s so much better! I continue to use all of the personal insights I’ve learned throughout the years of living with epilepsy. I volunteer my time sharing my experiences and give support to people living with epilepsy through support and empowerment groups, and as a NeuroPace Patient Educator I get the chance to help patients and families who have questions about a seizure treatment option. These opportunities have given me a reason, a purpose, as to why I went through what I did for so many years living with epilepsy.

Please take a moment and rediscover yourself or discover the new you. Whatever person you find yourself to be today, acknowledge how far you’ve come and just how amazing you are!

 


NEXT UP: Be sure to check out the next post by Michael at livingwellwithepilepsy.com

TWITTER CHAT: Save the date for the  #LivingWellChat on December 6 at 12 Noon ET.

Living Well With Epilepsy’s Epilepsy Blog Relay™ is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners!

Become a Sponsor

 

Epilepsy Blog Relay: Soo on considering CBD for epilepsy

This post is part of the Epilepsy Blog Relay™, which will run from November 1 to November 30, 2018.  Follow along!

Soo’s Story

Soo has been a regular contributor to the Epilepsy Blog Relay from the very beginning. Her site, Soo’s Epilepsy Corner, brings real world experience to those living in the community.

Her thoughts on Alternative Medicine and Epilepsy

You could say I have evolved in my beliefs about alternative medicine and epilepsy. I used to be dead set against it. I thought it was too dangerous. Since it was unregulated, you didn’t know what effect the chemicals would have on your body and how they would interact with your other medications.

I was skeptical that herbal medicine or medical marijuana (CBD) would be helpful. Not to mention acupuncture or other non-drug treatments. This attitude was reinforced by the medical community where I live. They tend to use CBD as a last resort, citing the lack of objective research.

Now however, since Epidiolex has been approved for two types of epilepsy (Dravet Syndrome and Lennox-Gastaut Syndrome), doctors are slowly warming up to using it.

Read More


NEXT UP: Be sure to check out the next post by Michael at livingwellwithepilepsy.com

TWITTER CHAT: Save the date for the  #LivingWellChat on December 6 at 12 Noon ET.

Living Well With Epilepsy’s Epilepsy Blog Relay™ is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners!

Become a Sponsor

 

Epilepsy Blog Relay: The temporal lobe epilepsy (TLE) experience

This post is part of the Epilepsy Blog Relay™, which will run from November 1 to November 30, 2018.  Follow along!

Nancy’s Story

I was diagnosed with epilepsy at the age of 7 – both grand mal and temporal lobe. My mother also had temporal lobe epilepsy as a child and all of my four siblings were eventually diagnosed with it too. We all experience it in unique ways and this has given me a lifelong fascination with this type of epilepsy and – in common with a lot of others I think – an interest in consciousness, the mind and religious or ‘mystical’ experiences.


Related article: Seizure education is a family affair


Temporal Lobe Epilepsy

I am now 41, an organic gardener and garden designer and my epilepsy has mostly all faded away. However the impacts of my epileptic years are still quite strong. The main way it affected me as a child was through what I dubbed ‘funny feelings’. These are also referred to as ‘auras’ and I think ‘partial complex seizures’ – seizures in the temporal lobe. These experiences for me always began with a strong feeling of deja vu and a sensation a bit like falling off the edge of a roller coaster – an ‘oh no, here we go again’ feeling. When I was little, this would be quite frightening. Sometimes at the beginning, I would get a smell – I remember pepper. One time at least I got whispering voices, many, many voices all at once. Always, I would feel like half of my consciousness was split off into another place, leaving the other half in my body. In this other place, I would be able to look around, walk around, explore or sit and observe. They varied in strength and so I was sometimes able to ignore it enough to continue functioning in the real world – continue with a conversation, for example. Other times, it was too strong and so I would have to sit tight and go with it until it wore off.

When I was in my late teens – I apologise now for what I’m about to admit – I had a mystical experience. I’ve got to be honest – I feel like I’m admitting to murder or something awful like that just by writing this down! I’ve always hidden this experience for fear of being thought a nutter! But I know what I felt and it was joyous, incredible, a feeling of one-ness and that I was in touch with the answer to everything – like the universe had taken a truth serum and all I had to do was think of the question and it would tell me. I felt euphoric, overwhelmed by the conviction that the universe is a loving thing.

How TLE can manifest

As strange as this might sound, it has brought meaning and direction for me. I think the insights I gained in that moment – and from subsequent similar experiences – have validity in the world, so I am not terribly interested in what electrical activity may or may not have been going on in my brain at that moment. But I am fascinated to know more about the experience of temporal lobe epilepsy and how it relates to other, historical descriptions of so called mystical experience or scientific revelation – eureka moments if you like. I have explored buddhist meditation and have researched the shamanic experience (through books only). I have spent the last 20 years learning about the science of ecosystem dynamics – how the world works. I am passionately driven to learn about the world and its consciousness, in order to discover whether the ideas that were impressed upon me through my epileptic experiences are true. Or perhaps more accurately – in an effort to remember what I learnt!

I accept that perhaps I’m chasing phantoms, so to speak, but it’s a fascinating journey. Made challenging, of course by my hopeless epileptic memory! However, I enjoy my work and ongoing studies in ecology and I find satisfaction in my increasing ability to bring health and wellbeing to the world around me.

Here are a few more stories on living with Temporal Lobe Epilepsy


NEXT UP: Be sure to check out the next post by Soo at livingwellwithepilepsy.com

TWITTER CHAT: Save the date for the  #LivingWellChat on December 6 at 12 Noon ET.

Living Well With Epilepsy’s Epilepsy Blog Relay™ is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners!

Become a Sponsor

 

Epilepsy Blog Relay: Living Well With Epilepsy is nominated for a Her Abilities Award

This post is part of the Epilepsy Blog Relay™, which will run from November 1 to November 30, 2018.  Follow along!

I am thrilled to share with the Living Well With Epilepsy community that because of my work with the site, I have been nominated for the Her Abilities Award 2018.

The Her Abilities Award

Her Abilities is the first global award honoring the achievements of women with disabilities. The international disability and development organization Light for the World is the founder of the award. With this award, the organization aims to honor women with disabilities who achieved greatness in their life and field of work. There were 158 women nominated from all continents and from 52 countries all over the world – among them Switzerland, Germany, Belgium, Mozambique, Burkina Faso, Austria, UK, Bolivia, Ethiopia, Vietnam, India, Norway, Cameroon, Kenya and the United States.

The jury is in the process of reviewing more than 300 nominations. The winners will be announced on December 3rd. You can learn more at her-abilities-award.org and on their Social Media Channels.

More in 2019

The organization is are proud to announce that Her Abilities will continue in 2019. Light for the World encourages everyone to take part again!

 


NEXT UP: Be sure to check out the next post by Natasha at livingwellwithepilepsy.com

TWITTER CHAT: Save the date for the  #LivingWellChat on December 6 at 12 Noon ET.

Living Well With Epilepsy’s Epilepsy Blog Relay™ is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners!

Become a Sponsor
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