EASEE Epilepsy

💜 Sharing insights & support for life with epilepsy
🧠 EASEE® - first minimally invasive brain pacemaker for drug-resistant focal epilepsy

10/09/2026

"How big is the scar?"
"Is this brain surgery?"

Two questions that reach us again and again, so let us take them properly 👀

Start with the second one, because it carries the most worry. EASEE® is not brain surgery. The electrodes sit under the scalp, above the skull bone. The bone stays closed. Nobody operates on the brain itself. That is the single most important thing to understand about this form of .

Now the scar. On the head, EASEE® is generally not visible under the skin. What can remain visible with a very short haircut is the scar itself. Ibrahim Soyudogan has shared his, so you can see for yourself rather than imagine something worse.

The pulse generator sits in the chest area, and depending on build it can be slightly noticeable. We would rather say that plainly than promise you will never see anything.

None of this replaces medication. is used to complement medication or dietary therapy, not to take the place of it.

Save this for the next time someone asks you about it and if you still have questions left about how the procedure works, just ask them below! 💬

Please note: this describes a personal experience. It is individual and cannot be transferred to other people living with epilepsy. This post is intended as general information and does not constitute medical advice.

08/09/2026

These are a few voices from our community, and they keep saying versions of the same thing ⚡

"It is all in your head." That is what one person was told in A&E. Then came the wait. Two weeks, he was promised. It turned out to be six months. He has a confirmed epilepsy diagnosis now.

Someone else described something many will recognise. Some focal seizures can look like symptoms of anxiety or panic, which makes them genuinely difficult to recognise. In her case it took a long time before her episodes were considered as potentially being related to epilepsy. Another person had focal seizures with full awareness that were mistaken for a mini-stroke.

Three different stories, one shared pattern. Focal seizures rarely look like what people expect a seizure to look like. That is exactly why the right answer sometimes arrives years later than it could have.

If any of this sounds familiar, the point is not that you were failed by someone. It is that you are not the only one this happened to. Going back to a neurology practice and asking again is a reasonable thing to do. Living with is hard enough without carrying the sense that nobody believed you.

What were you told, before anyone first said the word epilepsy? The comments are open, and we read them 💬

Please note: this describes a personal experience. It is individual and cannot be transferred to other people living with epilepsy.

05/09/2026

The seizure is the part people see. It is rarely the part that takes the most out of you ⚡

What sits around it is harder to describe. The waiting. The planning that goes into things other people do without thinking. The quiet calculation before a train journey, a night out, a shift at work. The phone that stays on loud because someone at home wants to be reachable.

When seizures are not under control, all of that runs in the background, every day. From the outside it can look like an ordinary life. Inside, a lot of energy goes into keeping it looking that way.

We are not saying this to make anyone afraid. We are saying it because plenty of people carry exactly this and assume they are the only ones 💭

If you recognise yourself in any of this, whether you live with or love someone who does, the comments are open. Sometimes it helps to see it written down by someone else.

03/09/2026

"Who do I even talk to about this?" 🧠

That question comes up a lot, and it is a fair one. Epilepsy care is not evenly spread, and finding someone with real depth in the subject can feel like guesswork.

Our centre map takes some of the guesswork out. Enter a postcode, set a radius, and you can see which epilepsy centres are within reach.

One thing worth saying clearly: these centres are not there to talk you into anything. They are epilepsy specialists first. They handle diagnostics, medication questions, and the full range of treatment paths. Experience with is one part of what they offer, not the whole picture.

Have a look and see what is near you: precisis.de/en/find-easee-center/

Was finding the right specialists difficult where you live? Tell us how it went, we would like to hear it 💬

Please note: this post is intended as general information and does not constitute medical advice. What is suitable in an individual case can only be decided together with your treating medical team.

01/09/2026

Not every seizure means epilepsy 🧠

Around five percent of people have one epileptic seizure at some point in their life without epilepsy ever developing. One seizure is an event. Epilepsy is a diagnosis. The two are not the same thing.

There is also a second picture that gets overlooked: PNES, psychogenic non-epileptic seizures. They look similar from the outside, though they have a different origin and do not show the electrical activity in the brain that epileptic seizures do. What matters here: they are real. Nobody produces them on purpose, and they can be just as frightening and just as disruptive to everyday life.

To make it more complicated, both can occur in the same person. Which is one reason getting to a clear diagnosis sometimes takes patience 💭

Part two follows, on how is actually diagnosed. Anything you want us to cover in it? The comments are open.

Please note: this post is intended as general information and does not constitute medical advice. What is suitable in an individual case can only be decided together with your treating medical team.

29/08/2026

Drug-resistant epilepsy. It sounds like a verdict, though it is really just a medical definition 🧠

The definition is more precise than most people expect. It applies when two well-chosen anti-seizure medications, taken at an adequate dose over an adequate period, have not brought seizure freedom. Two. Properly tried. That is the threshold.

Here is the part that trips a lot of people up: it has nothing to do with how often you have seizures.

Someone with seizures every week and someone with seizures twice a year can both meet the definition. What counts is whether the medication achieved seizure freedom, not how many seizures happened along the way. If your seizures are rare, establishing drug resistance can simply take longer, because it takes more time to see whether a medication is working.

Around one third of people with fall into this group, and that includes focal as well as generalised forms. So if this describes you, you are in a very large group of people.

Part two is coming, on what tends to happen next. Anything you want us to cover? Comments are open 💬

27/08/2026

Two things people still believe about epilepsy that are simply not true ⚡

Myth one: epilepsy is contagious.
It is not. You cannot catch epilepsy from someone. Not by touching them, not by helping during a seizure, not by sharing a drink. This one sounds almost absurd written down, yet it still shapes how some people behave around a seizure. Which is exactly why it is worth saying out loud.

Myth two: with epilepsy you can never drive again.
Also not true. A diagnosis does not automatically mean the end of driving. After a defined seizure-free period, a licence can be possible again. facebook.com/ibrahim.soyudogan knows that road well. The rules depend on your situation and are assessed individually, so your treating team and the licensing authority are the right people to talk to.

Neither myth is harmless. Both of them shrink the world of people living with , and usually the people repeating them have no idea they are doing it.

Which myth are you most tired of hearing? Drop it in the comments, we are collecting for part two 👀

24/08/2026

After an epilepsy diagnosis, treatment always starts in the same place: medication 🧠

For around two thirds of people, that medication also leads to seizure freedom. That number gets lost in a lot of conversations about epilepsy, so it is worth saying plainly.

The word doing the heavy lifting here is "matched". Anti-seizure medication is not interchangeable. What suits a generalised can be a poor match for a focal one, and vice versa. Finding the right fit depends on knowing which type is actually in play, which is one reason an accurate diagnosis matters so much.

So if the first medication did not work, that is not a dead end. It is often part of the process of finding the one that fits.

Where are you in that journey right now? Still searching, or did you find your fit? Share it in the comments if you feel like it 💬

Please note: this post is intended as general information and does not constitute medical advice. What is suitable in an individual case can only be decided together with your treating medical team.

21/08/2026

Freedom rarely starts big 🧠

It starts with doing the food shop on your own. With saying yes to plans without running the odds in your head first. With sleeping through the night. With one day that was not quietly organised around fear.

When seizures continue despite medication, epilepsy has a way of working its way into almost every decision. Not loudly. It just sits there, in the background, shaping what feels possible.

That is the part people rarely see from the outside. The planning. The mental arithmetic before something as ordinary as a train journey.

We would like to hear from you: what does freedom look like in your everyday life with ? Maybe it is something tiny that nobody else would notice. Share it in the comments 💬

19/08/2026

Two thirds of people with epilepsy become seizure free on medication, usually through their local neurologist. So when does a specialist epilepsy centre come into the picture? 🧠

An epilepsy centre is set up for the more complicated cases. Specialists there work across all forms of epilepsy, with diagnostic procedures and experience that a neurology practice generally cannot offer.

A referral may be worth discussing if seizures continue despite medication, if the diagnosis is still unclear (focal, generalised, or epileptic at all?), if drug resistance is suspected, if side effects are hard to live with, or if you want further options assessed properly.

None of this means anything went wrong before. Some forms of simply take longer to pin down, and a second set of eyes can bring real clarity.

If you are curious where centres offering are located, you can browse our map here: precisis.de/en/find-easee-center/

Have you ever been referred to a specialist centre? What made the difference for you? 💬

Adresse

Margot-Becke-Ring 8
Heidelberg
69124

Telefon

+4962216559300

Webseite

https://easee.precisis.de/en/, https://precisis.de/en/

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