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    Things to Never Do When Someone Tells You They Have Epilepsy

    November 6, 2020 / 1 Comment

    I remember the very first time that someone spoke the words, “Everything will be okay!” speaking about my epilepsy. Fire engulfed my stomach. When a family member spoke this to…

    By Tiffany Kairos
  • How I Exercise While Living with Epilepsy | Plus What You Need to Know Before Hitting the Gym

    September 30, 2020 / No Comments

    This is a topic that many people have reached out to me in regards to and as someone who avidly takes part in exercise, I find it beneficial and very…

    By Tiffany Kairos
  • brain fog

    Understanding Brain Fog And Epilepsy

    August 31, 2020 / 3 Comments

    Speaking candidly, alongside seizures, brain fog is one of the most difficult – and sometimes exhausting – parts of living with epilepsy. What does brain fog feel like? Brain fog…

    By Tiffany Kairos
  • 5 Things To Remember About Someone With Epilepsy

    May 16, 2017 / 5 Comments

    Epilepsy can be a challenging tribulation, not only for an estimated 3 million Americans such as myself who battle each day, but in addition for all of the people in…

    By Tiffany Kairos
  • What Epilepsy Did

    September 27, 2016 / 4 Comments

    Along my epilepsy journey, I’d come across a profound poem that most know of, titled “What Cancer Cannot Do.” This powerful poem proclaims statements such as, “it cannot silence courage,”…

    By Tiffany Kairos
  • 6 Things About Having Epilepsy That Aren’t Terrible, Horrible, No Good.

    May 11, 2016 / 3 Comments

    There happens to be this common misconception among some of those who battle epilepsy that, the moment the condition has tipped its hat to your brain and your life, that…

    By Tiffany Kairos
  • Lessons Learned From Epilepsy

    January 18, 2016 / No Comments

    It took a crash. A what could have been a fatal car crash and the diagnosis of epilepsy in order to open my eyes. To assess my entire life. The…

    By Tiffany Kairos
  • Why I Am Open About My Epilepsy

    November 30, 2015 / 4 Comments

    There is still to this day such a stigma attached to the condition of epilepsy. It is viewed at as a literal disease by some. Something that you can catch…

    By Tiffany Kairos
  • Anxiety and Epilepsy: How To Put A Stop To It Before It Puts A Stop To You

    September 22, 2015 / 1 Comment

    “Anxiety is one little tree in your forest. Step back and look at the whole forest.” Unknown Anxiety. A faceless beast that affects us all at some time or another.…

    By Tiffany Kairos
  • If I Have A Seizure: A Call For Compassion

    June 1, 2015 / 4 Comments

    “If we could look into each other’s hearts and understand the unique challenges each of us faces, I think we would treat each other much more gently, with more love,…

    By Tiffany Kairos
  • Positive Affirmations To Rise Above Epilepsy

    May 10, 2015 / 2 Comments

    “Your mind is a powerful thing. When you fill it with positive thoughts, your life will start to change.” Collecting positive thoughts and affirmations, and storing them in your mind,…

    By Tiffany Kairos
  • Five Reasons I Love My Life Even More Because Of My Epilepsy

    April 20, 2015 / 2 Comments

    “Inhale the future, exhale the past.” I have read quite a few articles about the difficulty of depression and the possibility of losing ones identity after becoming diagnosed with epilepsy, and how…

    By Tiffany Kairos
  • 10 Things I Wish I Knew Before My Epilepsy Diagnosis

    March 24, 2015 / 1 Comment

    We are two days away from kicking off Purple Day 2015! Recognizing survivors, supporting those currently battling epilepsy, remembering loved ones we’ve lost all around the world and educating everyone about this condition that…

    By Tiffany Kairos
  • What The Doctors Didn’t Tell Me The Day Of My Diagnosis

    February 8, 2015 / No Comments

    If I could impart a few words of wisdom and encouragement to my fellow epilepsy journeyers: Don’t ever give up! The day of my diagnosis, the month of December, there…

    By Tiffany Kairos
  • The Mozart Effect & Epilepsy

    January 25, 2015 / 8 Comments

    “The earth has music for those who listen.” Shakesphere There are many different types of medicines and remedies throughout our world today. Ranging from conventional (traditional), alternative, complementary, herbal, therapeutic, to standard…

    By Tiffany Kairos
  • Illuminating Dreams – Stewart Street Bridge

    October 1, 2014 / No Comments

    “Faith is the bridge between where I am and the place God is taking me.” In 2012, I created an event entitled The Global Shine Your Light For Epilepsy Awareness…

    By Tiffany Kairos
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About Me

Tiffany Kairos

Hi there! I'm an epilepsy patient advocate, blogger, content creator and the founder of The Epilepsy Network (TEN). Within this blog I talk about my experience with epilepsy, also providing tips, encouragement and motivation to live your best life while navigating epilepsy.

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I had so many who, what, where, when and how’s a I had so many who, what, where, when and how’s after being diagnosed with epilepsy. My head was spinning! 😵‍💫

Double tap if that was you too!! 🙌🏼

We aren’t given a map or blueprint on next steps but what I found to be extremely helpful was leaning on those within the epilepsy and by extension, entire chronic illness community. 

YES! I’m talking about you rockstars! 🌟👏🏼

When just starting out focus on 3 key things:

⚡️ Build a health care team - To help best manage your symptoms and medication
⚡️ Keep an epilepsy diary - To record when seizures happen and to identify triggers
⚡️ Find support - Connect with patients and caregivers right here on IG who can provide helpful resources, advice, encouragement and support! 

What’s another life hack you’d add to the list? Post it below and let’s start a conversation! 👇🏼

Tag a friend who might like this and add to your story! 🫶🏻
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #endepilepsy #1in26 #cureepilepsy #patientleader #patientadvocate #invisibleillnesses #invisibleillnesswarrior #invisibleillnesswarrior #TiffanyTalksEpilepsy #spooniesupport  #spooniesisterhood #spooniewarrior #spooniecommunity #spoonielife #thisisepilepsy #spooniestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
This is something that my husband has expressed. I This is something that my husband has expressed. I could never imagine stepping into those shoes I cannot express enough how grateful that I am to him for being so strong in these moments because surely it isn’t easy to witness someone you love undergo something you have no control over. Life partners and caregivers are heroes. 🥹

Some of my tonic clonic seizures can last between 1-2 minutes in length. 

Do you know the length of time your seizures last? ⏱️

Drop a purple heart in comment box and let’s show our gratitude for all caregivers today! 💜

Don’t forget to share to your story! 🫶🏻
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#epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #chronicillness #epilepsycommunity #invisibleillness #spooniesupport #spooniecommunity #spooniesisterhood #raiseawarenessofepilepsy#tiffanytalksepilepsy #spooniestrong #caregivers
After I was diagnosed with epilepsy, I made the de After I was diagnosed with epilepsy, I made the decision to stop drinking alcohol. 🙅🏻‍♀️

Alcohol can make epilepsy medication less effective or make medication side effects worse. In general, it’s OK for people with epilepsy to have small amounts of alcohol but I recommend talking to your doctor before you do so. 

I like celebrating special occasions, and sometimes alcoholic beverages are served. If you like the occasional glass of wine or beer did you know that you can still do that without the alcohol? 

There are many industries that create delicious non-alcoholic beers and wines. You can still have a good time! Without the alcohol. 😉🥂

A few yummy wines I recommend trying: 

🍷 @drinksurely 
🍷 @frewines 

Have you stopped drinking alcohol since being diagnosed? Do you have a favorite non-alcoholic beverage? Post in the comments and let’s kick off a sweet conversation! 

Cheers! 🥂🫶🏻

Tag a friend who aught to see this message and share to your story! 
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #endepilepsy #1in26 #cureepilepsy #patientleader #patientadvocate #invisibleillnesses #invisibleillnesswarrior #invisibleillnesswarrior #TiffanyTalksEpilepsy #spooniesupport  #spooniesisterhood #spooniewarrior #spooniecommunity #nonalcoholicwine #nonalcoholicbeer #spoonielife #thisisepilepsy #spooniestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
I’ve lived with epilepsy for almost 15 years and I’ve lived with epilepsy for almost 15 years and it’s been one wild ride in that span of time! 🫠

Plenty of ups, downs, and all arounds. 

Double tap if that’s you too! 🙌🏼

I’ve learned and grown a lot in the good moments and the bad.

If you or someone you care about has just been diagnosed with epilepsy, I see you!! The journey isn’t always easy in the beginning and can take a bit of time to adjust. 

Don’t lose hope or give up. You’ve landed in the right space to receive resources and support from a community filled with those who ‘get you’. 

If you want to read more about my life with epilepsy, tap the clickable link in the bio.

Tag a friend who should see this and share to your story! 🫶🏻
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #endepilepsy #1in26 #cureepilepsy #patientleader #patientadvocate #invisibleillnesses #invisibleillnesswarrior #invisibleillnesswarrior #TiffanyTalksEpilepsy #spooniesupport  #spooniesisterhood #spooniewarrior #spooniecommunity #spoonielife #thisisepilepsy #spooniestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
Today is World Tattoo Day! ✌🏼 A little over Today is World Tattoo Day! ✌🏼

A little over a decade ago, I decided to get a tattoo. I wanted it to symbolize that in having epilepsy, despite any and all challenges, I will always rise above the storm. ✊🏼

My husband @ka1ro5 designed the concept and am reminded of this message every time I see it. 

Double tap in support of epilepsy awareness! 🙌🏼

Do you have an epilepsy or other chronic illness tattoo? Tell me about it in the comments! 👇🏼
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#epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #chronicillness #epilepsycommunity #invisibleillness #spooniesupport #spooniecommunity #spooniesisterhood #raiseawarenessofepilepsy#tiffanytalksepilepsy #spooniestrong  #worldtattooday
When I left the doctors office after being diagnos When I left the doctors office after being diagnosed with epilepsy, I carried a thin folder with a teeny pamphlet and a few pieces of paper describing the condition.

It wasn’t much. I felt completely clueless. Never had I heard the word “epilepsy” before. I also had a weak understanding of what exactly a seizure was. 🫠

Double tap if you can relate to this! 🙌🏼

I knew that I was going to essentially “go to school” and “be my own teacher”. By that I mean:

✨Hit the books
✨Utilize reputable online resources and 
✨ Connect with others in local and online communities/groups 

When you understand nothing (about a particular topic), you’ve got to do something to get ahead of the game. 

The stress, fear and uncertainty that I felt starting my journey was replaced by confidence and determination the more I devoted my time to learning about epilepsy.

I encourage you to be sponges and continually soak up information. Share it with others too! That’s the beauty of community. We support one another always. 

Tag a friend who should see this and share to your story! 🫶🏻
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #endepilepsy #1in26 #cureepilepsy #patientleader #patientadvocate #invisibleillnesses #invisibleillnesswarrior #invisibleillnesswarrior #TiffanyTalksEpilepsy #spooniesupport  #spooniesisterhood #spooniewarrior #spooniecommunity #spoonielife #thisisepilepsy #spooniestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
Being given the opportunity to speak to students a Being given the opportunity to speak to students about epilepsy, and discuss my life with epilepsy is an experience and privilege. 

I’m occasionally invited to speak to college-level students and love seeing how intrigued they are and their desire to know more. 

As they learn from me, I learn from them that there is a great need for more awareness. Talking about it erases misconceptions, and fears. And gets gears turning in the minds of those who lack knowledge. 

Sometimes, when I finish my presentation I have students come to me and tell me about a family member or friend who has seizures and asks how they can help or what to look out for. 

Don’t be afraid to talk about epilepsy. People want and need to know more. You might just also help someone who is afraid to tell their story. You might help save a life. 🫶🏻
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#epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #chronicillness #epilepsycommunity #invisibleillness #spooniesupport #spooniecommunity #spooniesisterhood #raiseawarenessofepilepsy#tiffanytalksepilepsy #spooniestrong #publicspeaker #keynotespeaker
Not all seizures involve losing consciousness. I h Not all seizures involve losing consciousness. I have two types of seizures. Tonic-clonic and complex partial seizures.

When I experience complex partial seizures, sometimes I’m rendered unable to speak and I stare blankly for a few seconds. 

Those with very little understanding of epilepsy, might assume I’m ignoring them or that I don’t care about what they’re saying.

This just isn’t so. I have no control of what’s happening to my body during those few seconds. 

There’s no off switch or a sign that reads “temporarily out of service.”

But believe me, I do care about you and all that you have to say. 🤍

Has anyone ever mistaken your seizure for something else? Tell me about your experience in the comments! 👇🏼

Tag a friend who needs to see this and share to your story! 🫶🏻
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#epilepsy #epilepsyawareness #fearlesslyfightingepilepsy #chronicillness #epilepsycommunity #invisibleillness #spooniesupport #spooniecommunity #spooniesisterhood #raiseawarenessofepilepsy#tiffanytalksepilepsy #spooniestrong
There’s no such thing as TMI with epilepsy as fa There’s no such thing as TMI with epilepsy as far as I’m concerned.

Double tap if you agree!! ♥️

The very moment I became diagnosed with epilepsy, I hit the books and scoured the internet for information about epilepsy and seizures. 

I wanted to understand every drop in existence so that I could fight back and work well alongside my medical team. 

This became especially important to me when I dedicated my life to advocacy. If epilepsy was going to be a part of my life for the foreseeable future, I wanted to know this entity occupying my body entirely. 

I wanted to help other individuals - patients and caregivers, navigate their lives in a much easier way. Help the public understand in order to be able assist when necessary and erase any stigmas looming. 

Even after 15 years living with epilepsy, I’m still learning something new and I love it. It helps me so I can help others.

How about you? Have you learned something new about your illness lately? Tell me about it in the comments!

Tag a friend who aught to see this and post to your story! 🫶🏻
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#chronicillnessadvocate #chronicillnessawareness #epilepsyawareness #endepilepsy #1in26 #cureepilepsy #patientleader #patientadvocate #invisibleillnesses #invisibleillnesswarrior #invisibleillnesswarrior #TiffanyTalksEpilepsy #spooniesupport  #spooniesisterhood #spooniewarrior #spooniecommunity #spoonielife #thisisepilepsy #spooniestrong #reelgrowth #epilepsyadvocate #reels #newreels #newreel
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This blog is not here to replace medical advice from trained professionals.

Please seek medical advice.

This blog serves to offer my personal experience with epilepsy, what has worked for me, encouragement and support.

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