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  • 7 Things It’s Okay To Do Living With Epilepsy

    March 22, 2023 / No Comments

    Being diagnosed with a chronic illness is a life changing experience. It becomes a matter of adjustment and adaptation. It becomes a matter of limitation and certain sacrifices. Undertakings to…

    By Tiffany Kairos
  • 8 Life Hacks To Manage Your Epilepsy

    March 4, 2023 / No Comments

    Living with epilepsy can be tricky but there are some life hacks that can make it a whole lot easier. Such as: Be an expert Researching your condition allows for…

    By Tiffany Kairos
  • 10 Things People Don’t Realize I’m Doing Because I Have Epilepsy

    February 21, 2023 / No Comments

    To an outsider, things like choosing water over coffee or leaving a social event early might look like a reflection of your personality. But to a person with epilepsy, these…

    By Tiffany Kairos
  • 15 Uplifting Epilepsy Quotes To Get You Through Tough Days

    February 9, 2023 / No Comments

    When I was diagnosed with epilepsy, I was broken and couldn’t utter a word. How could I express my feelings of loneliness and confusion? I felt helpless inside of a…

    By Tiffany Kairos
  • 5 Pros Of Talking About Epilepsy

    January 23, 2023 / No Comments

    Epilepsy is a common neurological disorder that causes recurrent unprovoked seizures. It is stigmatized, misunderstood, feared, overlooked and therefore grossly under-funded. I’ve lived with epilepsy for almost fifteen years. Talking…

    By Tiffany Kairos
  • Catamenial Epilepsy And Me

    November 29, 2022 / No 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
  • ReLeafPack Review: Bounce Back With This Cold Pack

    November 9, 2022 / No Comments

    Headaches…are a headache! They’re painful, terrible for your quality of life, and awful for productivity. Following a seizure, I experience terrible headaches known as postictal headaches. A postictal headache is…

    By Tiffany Kairos
  • 7 Must-Have Shark Tank Products For Epilepsy Living

    October 22, 2022 / No Comments

    Living with a chronic illness involves change. There are certain tasks and activities that you can no longer participate in because it could put you at risk of provoking a…

    By Tiffany Kairos
  • 7 Things I Do That Strengthen My Mental Health While Living With Epilepsy

    October 10, 2022 / No Comments

    Living with epilepsy is layers deep. It’s not solely experiencing seizures. Not only are those of us impacted physically but mentally too. The CDC reports that as many as 30%…

    By Tiffany Kairos
  • 10 Essentials to Pack for a Hospital Stay

    September 26, 2022 / No Comments

    If I don’t come prepared then I can prepare to be extremely bored during my hospital stay. If you or your loved one has an overnight or lengthy hospital stay,…

    By Tiffany Kairos
  • 7 Ways My Epilepsy Reshaped Me

    September 9, 2022 / No Comments

    Before my epilepsy diagnosis, I never owned my health and well-being. Now it’s one of the main focuses of my daily life. My head used to be “buried in the…

    By Tiffany Kairos
  • 6 Embarrassing Seizure Symptoms

    August 22, 2022 / No Comments

    Life with epilepsy can sometimes be frustrating, to say the least. Your body loses control of itself, and despite doing everything right, it continues to cause a plethora of side…

    By Tiffany Kairos
  • How To Stay Seizure Safe At Home

    July 21, 2022 / 1 Comment

    After my epilepsy diagnosis, I had to learn how to stay safe in the safest place I knew. Home. As a stay at home wife with epilepsy, it takes methodical…

    By Tiffany Kairos
  • No-Fail Ways To Remember To Take Your Medication

    July 4, 2022 / 1 Comment

    We’ve all forgotten to take our medicine at some time in the past! It’s human to forget a dose or take it late, so don’t panic if it happens. When…

    By Tiffany Kairos
  • Here’s Why Epilepsy Needs Better Representation

    July 2, 2022 / 2 Comments

    Seizures can be scary. They’re not fun to have and they’re not fun to watch. But does that mean we should be silent? I feel compelled to talk about something…

    By Tiffany Kairos
  • 5 Lessons I Have Learned Living With Epilepsy

    May 20, 2022 / No Comments

    I wasn’t given a choice in having epilepsy but I did have a choice in how I dealt with it. I didn’t anticipate becoming chronically ill. I wasn’t prepared for…

    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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Disclaimer

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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