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  • 6 Ugly Sides of Epilepsy Most People Don’t Like Talking About

    January 7, 2020 / 5 Comments

    It’s no secret that having a chronic illness sucks. There are sides to having epilepsy that are ugly or not well studied, and many people don’t know about them at…

    By Tiffany Kairos
  • Survival kit

    8 Essentials In My Epilepsy Survival Kit

    December 12, 2019 / No Comments

    Living with epilepsy can be taxing not only on the body but also the mind and spirit. Finding the right things to make the journey less rigorous is therapeutic. What…

    By Tiffany Kairos
  • Memory

    5 Ways I Improve My Memory While Living With Epilepsy

    October 8, 2019 / 2 Comments

    “Memory loss is like system reboot.” Memory hindrances. A topic that I’ve discussed lightly over the course of my journey with epilepsy. Is it a mere coincidence or has my…

    By Tiffany Kairos
  • Intimacy

    Breaking the Ice on Intimacy and Epilepsy

    September 25, 2019 / 2 Comments

    Yep, I’m going there. That awkward, not-often talked about subject coupled with epilepsy. When epilepsy and seizures decide to kill the mood for intimacy in a relationship. Sometimes we might…

    By Tiffany Kairos
  • Road

    The Road Doesn’t End Here

    September 18, 2019 / 1 Comment

    One of the most difficult challenges since my diagnosis with epilepsy is finding reliable means of transportation. Sure. I have my husband and members of family who extend their willingness…

    By Tiffany Kairos
  • Caregiver and spouse

    Secondary Epilepsy

    August 31, 2019 / 5 Comments

    “Because I love you, because I care for you, because I know what you endure… you will never endure alone.” – Chris Kairos December 11, 2008, what seemed like a…

    By Tiffany Kairos
  • Summertime

    How to Beat the Heat Living with Epilepsy

    August 6, 2019 / No Comments

    “‘Cause a little bit of summer is what the whole year is all about.” – John Mayer What do you think of when you hear the word “summer”? Vacation, flip-flops,…

    By Tiffany Kairos
  • Woman thinking

    What NOT To Do When Living With Epilepsy

    May 28, 2019 / 4 Comments

    Living with epilepsy, I often reflect on new and different ways to embrace the reality of my condition. Over the course of a decade, I’ve pursued and pocketed different suggestions…

    By Tiffany Kairos
  • Group of people walking

    Life With Epilepsy In Public

    April 7, 2019 / 3 Comments

    “Do you know where you are?” “Can you tell me who the President is?”   These are examples of questions I have been asked when I find myself uncomfortably lying…

    By Tiffany Kairos
  • Woman hugging herself

    How To Love Yourself Despite Epilepsy

    March 1, 2019 / 2 Comments

    When epilepsy enters into your life, it can take a massive shot at your self-esteem. You’re not able to do certain things you once could do, you’ve got to rely…

    By Tiffany Kairos
  • Woman holding coffee mug

    5 Things That Help Me During A Seizure Setback

    January 30, 2019 / 2 Comments

    In the over ten years that I have lived with epilepsy and experienced seizures, I can’t tell you just how many seizures have pained me, drained me, and unplugged me…

    By Tiffany Kairos
  • Menstrual cycle

    Epilepsy & That Time Of The Month

    September 16, 2018 / 6 Comments

    Yep. I’m going there. That awkward, not-often talked about subject coupled with epilepsy. First thing’s first. That time of the month sucks. An unwelcome guest that barges in and makes…

    By Tiffany Kairos
  • 10 Things I Don’t Do While Living With Epilepsy

    August 28, 2018 / 5 Comments

    Out of the corner of my eye, I see the minutes pass by, I flip the calendar to a brand new month, watching the seasons change. Leaves fall and dance…

    By Tiffany Kairos
  • 4 Things People With Epilepsy Want You To Know

    August 1, 2018 / 2 Comments

    Epilepsy can intrude into anyone’s life, at any time. Millions of men, women and children battle this selfish and rather challenging condition every single day. All of us diagnosed are…

    By Tiffany Kairos
  • Five Things To Do Everyday When Living with Epilepsy

    March 4, 2018 / 2 Comments

    I have lived with epilepsy for nearly a decade now. Wow, how fast time goes. Time opens your eyes and imparts wisdom, if you let it. Epilepsy is a complex…

    By Tiffany Kairos
  • Epilepsy Quirks

    October 12, 2017 / 4 Comments

    The journey in living with epilepsy hasn’t always been without its stumbles and trials. Regardless, I’ve learned quite a bit throughout the years. In having developed a tougher skin, absorbing…

    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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