Life Update (Diagnosed with Epilepsy)

Episode 929 | Filmed June 2024

0:00 I have epilepsy
1:06 Goals for this video
2:59 My Epilepsy Journey
6:04 the day everything changed
10:03 first doctor’s appt
13:14 back to 2018 problems
16:48 my memory issues
19:16 I love you
20:58 Neurologist Diagnosis
23:43 EEG and MRI tests
27:25 test results
29:48 my treatment plan
32:52 our future plans

[WMA]

As a Paramedic, I highly encourage you get a Medical Alert Bracelet like Road ID, especially since you travel and may be alone at times. You can list your medical condition, medications and any allergies or adverse reactions you have to medications, and most importantly, Nate's contact info!

[marylyyonn]

Nate and Kara,
I'm a neurologist and watching your account is exactly why I do what I do. People deserve to know what is happening in their health, that's the sacred foundation of all physician - patient interactions that has been eroded in modern medical practice. Your neurologist knew rather easily the diagnosis because she listened to you. There's a famous quote from one of the fathers of modern American medicine, William Osler. The quote is "Listen to your patients, they are telling you the diagnosis."

Thank you for taking the time to so thoughtfully share what you two have been living through. In epilepsy in particular, there are even studies that show peer to peer support is a health benefit for people living with epilepsy. Your narrative and the heart with which you have told your story has SO MUCH IMPACT - just look at all the loving comments that telling your story has brought. Thank you so much for your openness and helping others see themselves validated as well as presenting to society the journeys that we all are on when health problems arise. We are socialized to believe that symptoms should be "toughed out" or dismissed and there is so much stigma associated with any form of illness or disablity. When you speak up, you battle those negative aspects of human nature and you are a light for others. Again, thank you.

[SiennaCant]

Dear Kara,

Hi! My name is Sienna, and I'm 15 years old. I've had epilepsy for the last 11 years, so I know exactly how you feel right now. I also watch all your YouTube videos and love them.

Getting diagnosed with epilepsy can feel really overwhelming and scary, but I want you to know that you're not alone. Having your first few seizures can be very scary for your family because of the fear of the unknown. In my case, my dad had to rush me to the hospital because I was experiencing a long seizure. I felt very scared not knowing what was going on, and it was a tough time for all of us.

Taking medication can be tough because you have to remind yourself to take it every day. But trust me, it's worth it because it helps prevent seizures and keeps you safe.

I know it can be hard to explain epilepsy to other people. Sometimes they don't understand what we're going through. But by talking about it, we can help bring awareness and understanding, which is really important.

If you ever want to talk about it or if you have any questions, please feel free to reach out to me. I'm here for you.

Take care, and remember, you're not alone.

Best wishes,

Sienna

[nualarosth]

I got epilepsy as a16 year old and could stop medication when I was about 28 . I had given birth to 2 children by then. I am now 67 years and haven’t had a seizure since I stopped taking the medication. I don’t drink alcohol or smoke cigarettes and I do sleep about 8 hours a night. Wishing you all the best ❤I also had a very supportive and loving husband.We are very blessed women❤

[OffbeatLiteracy]

Nate saying “stop, you can’t carry this” should tell you everything about the kind of person he is, the kind of character he has inside, and the amount of love he has for Kara. You’re a great person Nate and I don’t think you’re told that enough by this community.

[hayleyevans]

I just wanted to say that I’m a doctor, I’ve seen so many patients have seizures and it’s still scary each time - I can’t imagine how terrifying it must have been for Nate to wake up and see Kara having a seizure for the first time. Luckily, epilepsy is something that is fairly straightforward to manage (although it can take some time to get the right type and dosage of medications) and you guys sound like you’re already handling it really well. It’s great that you’ve both got each other for support during this difficult time; please continue to do what you need to do to put your physical and mental health first above all, everything else can wait 💕

[ReSprout]

I have a proposal, you guys. For everyone of us who has successfully come out of epilepsy the other side, still living their best life, treated years later, (I am one!), respond to someone in the comments who is struggling. There are people here who were diagnosed last week and are scared out of their wits with not one single comment. Let’s spread some of Kara’s love around. I know she would love that.

[wqhcbbc]

im 12 and I was recently diagnosed with epilepsy and Ive felt so different from everyone but i'm really happy to see there's lots of other people like me. im so sorry I know how hard it is!!

[Jinty_]

Dear Kara please don't talk yourself out of crying. I think in situations like yours or any other health change of any kind crying is good for your soul and mind. So if you feel like crying just let it out. Sending you a big and comforting hug, Kara. ❤‍🩹

[TravelwithNJSteveandSue]

I am a physician and let me give you some advice. If you are ever concerned about a test result, tell the medical office your concerns and ask to talk with the doctor. There was no reason that office could not have told you on the phone that the neurologist was going on vacation. Sometimes offices don't understand the worry when waiting for test results, but they should.

[morganhabursky]

Hi there!
2 years ago I got diagnosed with epilepsy at 17 years old. It has been so crazy and it has taken so long to finally get my life back on track. I don't see videos/people talking openly about epilepsy openly, so I am so thankful I found this video. Sending so much love to you guys

[davelindgren]

I have had stage 4 cancer twice.
I can no long speak and have spine damage.
With that said, I never feel sorry for myself because when you spend a lot of time at the hospital, this is always someone who is going through something worse than you.
I say that because when you see someone who might not be having a great day, you never know what that person is dealing with.
Good luck in your journey. You should take all the space and all the time you need to work through this.

[mwpanda]

I've got Epilepsy, it's nothing to worry about! You can easily live with it once you've learnt your warnings. You'll be grand hope you're okay 🎉

[ast]

Hey guys! I am both a physician and a person living with epilepsy. Many of your experiences were mine (except they were 20+ years ago!). I haven’t had a seizure since starting medication as a teenager and would not stop them if given the chance. With the right medication and healthcare team, your quality of life is only going to be better from here onwards! It’s okay to grieve for the days where our bodies were indestructible and infallible but believe it or not, many of your best years are ahead of you. Much love

[swestcoast]

I was diagnosed at 23 with Epilepsy. They couldn't find any reasons. You're not alone. It's a scary thing to hear at first, but the more you research and learn, the less scary it becomes.
Thank you for sharing your story. Please keep using your platform to raise awareness. 1 in 26 people have it 💜

[stephanieGibbons-rr]

Oh my goodness, your story is exactly like mine! My husband and I were intrepid travelers like you guys before this whole social blogging.

After spending some time in the Atacama Desert, I noticed that the altitude did not agree with me. I felt very sick and started experiencing those "weird" feelings, just like you. It was on and off for a year. Life is busy and fast-paced when you're on the road... like you guys, we attributed it to various factors. Then, once we got back to the UK, I had my first tonic-clonic seizure in my sleep and woke up in A&E with my husband by my side. It's so scary to wake up and see your partner beside themselves with worry (I convinced myself that I was dying). After many different appointments and brain scans, they found the same thing as you: a lesion on the left temporal lobe. It's terrifying to receive that diagnosis! The scariest part for me is that when you speak to the neurologists, they don't really know what causes it, and it's trial and error to find the medication that will help you stay seizure-free.

Anyway, I just wanted to say that I'm 12 years on and have found the medication that works for me (Keppra). I've been seizure-free and adventuring the globe. I found that once I settled on a medication, my memory improved, and I felt less like a space cadet.

I don't usually comment on things like this, but I felt compelled to reassure you. Everything will be fine! As someone who has experienced what you're going through and is 12 years ahead, I hope you take comfort in knowing that life will return to normal and it will stop consuming all your thoughts. You will find your new rhythm and identify your triggers.

I now have a healthy son and don't travel as remotely, but that never stopped me before him.

If you read this, I hope it gives you some resurface for your future. X

[barry]

Psychologist/counsellor here. Be kind to yourself. You may have to change some aspects of your lifestyle, but that is not a failure. You may have to slow down a bit, and that is not a failure. You may have to modify your self-concept, and that is not a failure. The only failure is if you beat yourself up over those changes. So be kind to yourself.

[AbigailGerlach-ztsh]

When my sister, at 19, was diagnosed with Epilepsy she was told that no one knew what or how long her future would be. She just turned 65 last November. She has two beautiful, intelligent, accomplished children who have given her four grandchildren. She has retired after teaching elementary school for thirty six years. Her life has been challenging, certainly, but in no way would she allow it to rule her life.
I have two pieces of advice. 1) Be proactive. You are in charge of your life, health, and future. Don't let anyone make your decisions for you. Research everything. Find a doctor you trust. If you aren't comfortable, change doctors!!! 2) Decide what you want your life to be. Don't let your disorder rule your decisions. Take your meds, eat well(which you do) exercise regularly (which you do) get enough sleep (?). Be aware, not wary.
Blessed Be Kara, you've got this!

[maryloubailey]

We are 4 years into an epilepsy journey with my daughter. She is doing very well now. I started watching videos to get ideas for how to travel more comfortably with her so this video was strangely comforting. Thanks for being willing to share.

[krbftxx]

My daughter had her first seizure at around 6 months old. Scary as **** in the middle of the night. Medicine reduced the quantity of them, and now at 20 years old hasn't had one for years. Thank you upstairs.