Living With Epilepsy Journey

Living With Epilepsy Journey follow me to understand my journey and get educated about epilepsy.

I am a 54 year old female who was diagnosed with Epilepsy out of the blue 5 yrs ago, I went from an Executive to having to retire due to brain damage on the left side of my brain.

Good evening, been tired all day but pushed through it. Night time wide awake??????
09/07/2026

Good evening, been tired all day but pushed through it. Night time wide awake??????

Good evening friends, I’m sorry I haven’t posted lately. Been pretty stressed. I’m feeling better. But my brain fog and ...
09/06/2026

Good evening friends, I’m sorry I haven’t posted lately. Been pretty stressed. I’m feeling better. But my brain fog and fatigue has been driving me nuts. I’m wishing for a great month… meaning less fatigue and brain fog.💜

You know I hear it all the time when I explain what my days are like or what I deal with everyday. I’m sick of hearing w...
08/08/2026

You know I hear it all the time when I explain what my days are like or what I deal with everyday. I’m sick of hearing we all have that issue. I’m hear to tell you, NO, your not dealing with the same thing….old age is not a comparison to epilepsy.

This is why we are fighting for the Nation to step up. We are just s as important as cancer, Alzheimer’s etc. we need he...
08/06/2026

This is why we are fighting for the Nation to step up. We are just s as important as cancer, Alzheimer’s etc. we need help. We need to be heard, we need for people to understand that this disease is taking so many of our lives one’s, friends and family.

Living with epilepsy has changed my life in ways most people never see. The doctor visits, the fear of the next seizure,...
08/06/2026

Living with epilepsy has changed my life in ways most people never see. The doctor visits, the fear of the next seizure, the waiting, the side effects, the frustration of feeling like the system isn’t built for us — it’s a lot. Some days are strong, some days are scary, and some days I just wish things were easier.

That’s why the National Plan for Epilepsy Act (S. 494) means so much to me. It finally feels like someone is listening. This bill creates a real national plan to improve epilepsy care — better access to specialists, more research into new treatments, earlier diagnosis, better seizure detection, and real attention to SUDEP and the risks we live with every day. It even focuses on mental health and the emotional side of epilepsy that so many of us struggle with quietly.

For people like me, this act isn’t just policy — it’s hope. Hope for safer days, better care, and a future where epilepsy isn’t something we have to fight alone.

07/10/2026

How heat affects epilepsy medications;

They are all pretty much the same with the heat. Some worse than others I take this one, you can look up yours to see what can happen in extreme heat.

I have had more brain fog and getting sick more often. Please be careful. 💜

High temperatures and humidity can chemically degrade several anti‑seizure medications, reducing their strength or stability.
The most heat‑sensitive epilepsy meds identified in recent studies include:

Carbamazepine is genuinely heat‑sensitive, both in how your body reacts to it and how the medication behaves when exposed to high temperatures. Since this can affect seizure control, it’s smart that you’re asking about it.

Here’s the clear, medically accurate breakdown.

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🔥 The most important thing to know

Heat + dehydration can raise carbamazepine levels in your body, making side effects stronger and increasing seizure risk.
And high temperatures can weaken the medication itself if it’s stored improperly.

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🌡️ How heat affects carbamazepine inside your body

Carbamazepine has a narrow therapeutic range, meaning your body is sensitive to even small changes in the amount circulating in your system.

1. Dehydration raises carbamazepine levels

When you’re dehydrated, your kidneys clear the drug more slowly → levels rise.
This can cause:

• Dizziness
• Feeling “off” or foggy
• Weakness
• Confusion
• Worsening balance

These symptoms can feel similar to toxicity.

2. Heat amplifies carbamazepine’s usual side effects

Carbamazepine already can cause:

• Fatigue
• Coordination issues
• Cognitive slowing

Heat stress makes these effects more intense, especially outdoors or during physical activity.

3. Sweating + carbamazepine = higher sodium risk

Carbamazepine can lower sodium (hyponatremia).
Sweating in hot weather also lowers sodium.
Together, this can cause:

• Head pressure
• Nausea
• Confusion
• Increased seizure risk

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🔥 How heat affects carbamazepine as a medication

Carbamazepine is sensitive to high temperatures and humidity, which can reduce its stability and potency.

Avoid storing carbamazepine in:

• Hot cars
• Bathrooms
• Direct sunlight
• Outdoor bags during heat waves
• Near windows or radiators

Even short exposure to extreme heat can degrade some medications.

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🧊 Practical safety steps for hot weather

• Stay hydrated — small, steady sips throughout the day
• Avoid peak heat — usually 11am–4pm
• Store meds properly — cool, dry place
• Watch for dizziness or confusion — early signs heat is interacting with your medication
• Use cooling tools — fans, shade, cooling towels

If you ever feel suddenly dizzy, weak, or “not yourself” in the heat, cooling down and hydrating is important — and a healthcare professional can help if symptoms persist.

I hope everyone’s Fourth of July was great and that you are all healthy.
07/09/2026

I hope everyone’s Fourth of July was great and that you are all healthy.

06/25/2026

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