EASEE Epilepsy

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

10/10/2026

The seizure lasts minutes. The fear of the next one can fill entire days ⚡

For many people living with epilepsy, that fear is the heavier part. It sits in your sleep. It decides which invitations you turn down, which plans you quietly avoid, how far from home feels acceptable today.

It rarely gets talked about, partly because it sounds irrational said out loud. It is not. Anticipating something unpredictable is exhausting in a way nobody sees from the outside.

10 October is . This part of deserves attention too. If it is wearing you down, raise it with your treating team. Psychological support is not a last resort, and asking for it is not an overreaction.

How do you deal with the fear of the next seizure? The comments are open, and we read every one 💬

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.

07/10/2026

You told us. We listened ⚡

Under the reel with Ibrahim, a few of you pointed out that we called epilepsy a "disease". You were right, and we want to talk about it properly rather than quietly fix it and move on.

Here is the honest version. The word is not technically wrong. In medical English, "disease" covers plenty of things nobody can catch, and epilepsy sits in that category. That is where it came from.

But a caption is not a textbook. In everyday language, "disease" sounds like something you catch, something you avoid being near. That is not what anyone reading it should hear, and we would rather use a word that lands the way we mean it.

"Condition" does that. It is what the UK epilepsy community uses, and from here, so do we. Thank you for the feedback, sincerely. You spotted it, you said so, we changed it. 🙌

So while we are at it: are there other words around you would rather not hear? Tell us, we are taking notes 💬

03/10/2026

"Do they shave my whole head?" No! 🧠

Usually only a small area, and how small depends on the surgical team and on you. Once it has healed and the hair has grown back, it is often barely noticeable. .soyudogan has shown his, which says more than any description could.

In the chest area, the scar is comparable to one from a pacemaker. A cut of a few centimetres.

How visible any of it stays depends on hair length, where EASEE® sits, how you heal, your anatomy and body fat. Which is a long way of saying: results are individual, and nobody can promise you a specific outcome.

We think this question deserves a proper answer rather than a shrug. How you feel in your own skin is not a side note next to whether something works ⚡

Save this for the next time someone asks what actually looks like 💾

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.

01/10/2026

A good appointment starts before you walk in 🧠

If seizures are still happening despite treatment, this conversation matters more than usual. Three things that help:

A seizure diary. When, what it looked like, what came before it. No app needed, notes on your phone count. Patterns show up on paper that nobody recalls accurately from memory.

Written questions. "Could my epilepsy be drug-resistant?", "would an assessment at an epilepsy centre make sense for me?", "what options exist alongside medication?" Not to challenge anything, but because these are easy to forget in the room.

Your own goals. Safety, sleep, travel, work, independence. Nobody can weigh that up for you if it never gets said out loud ⚡

You do not have to arrive perfectly prepared. Three scribbled lines beat nothing, and living with is enough work already.

Save this before your next appointment! 💾

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.

29/09/2026

Part two, following on from "not every seizure means epilepsy". So how is it actually established? 🧠

Rarely through a single test. The diagnosis is put together from several pieces:

A detailed history, meaning the conversation about what happened, when, how often, and what came before it. This carries more weight than most people expect EEG and video EEG, recording electrical activity in the brain, sometimes over several days
MRI, to look for structural causes, occasionally supported by PET or SPECT
Blood work, to rule out other explanations
Video documentation of seizures, often recorded by family members

That last point is worth underlining. If someone close to you films a seizure on their phone, that footage can be genuinely useful in the appointment. Awkward to think about, valuable in practice.

The same applies to children and adults alike ⚡

If you have been through this, what took the longest for you? 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.

26/09/2026

A voice from our community, and this one is not about treatment at all ⚡

Sleep-related seizures since the age of seven. Decades of knowing the pattern. Decades of doing the job. Recently that job was lost.

What was described was not a dispute about whether the work could be done. Occupational health documentation was there. What happened was that the word "blackouts" entered the conversation. Once it did, the question stopped being about actual capability.

The point made was clear. The problem is not the epilepsy. The problem is the assumption that a seizure automatically means a person cannot do a job. Those are two very different things, and the gap between them is where people lose work they were perfectly able to do.

That gap is made of not knowing. It closes when people ask instead of assume.

Have you ever told an employer about your epilepsy? We would like to hear how that went, whatever the answer was. is a conversation that mostly happens in private. It does not have to 💬

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

24/09/2026

Drug resistance is a definition, not an endpoint 🧠

If two well-chosen medications have not brought seizure freedom, the search does not stop there. It shifts. From "which medication next" to "what else is available".

What that can look like:

Assessment at a specialised epilepsy centre, to confirm the diagnosis and map out what fits Inpatient medication adjustment, where dosing can be observed closely
Epilepsy surgery, meaning resection of the seizure-generating area
Neurostimulation, in reversible and non-reversible forms.

EASEE® belongs to the reversible group. For adults living with drug-resistant focal epilepsy it can be an option, used to complement medication rather than replace it. Medication is not withdrawn when drug resistance is established. The aim is to add something, not to take something away ⚡

Not sure whether any of this applies to you? Our self-check gives you a first orientation: precisis.de/en/patients/

Which of these had you already heard of? 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.

21/09/2026

After the diagnosis, training felt out of reach ⚡

Chris wanted to work in graphic design. What stood between him and that was not the subject matter. It was the fear of the next seizure, exam pressure, full lecture halls, the constant background question of what happens if it happens here.

Today he is doing his apprenticeship in Freiburg. Not because the epilepsy is gone. It is not. What changed is what feels possible, since he decided on EASEE®.

That distinction matters. Nobody hands you a different life. Sometimes the room to move just gets a little wider, and you take it from there.

Did epilepsy shape your choice of study or career? Tell us how it went for you, the comments are open 💬

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.

18/09/2026

"Can I still have an MRI with EASEE®?" This one comes up a lot, so here is the clear answer 🧠

Yes, provided the guidelines are followed. That condition is the important part, so it comes first.

What that means in practice: the medical team carrying out the scan needs to know that you are wearing EASEE®. Bring your implant card. The guidelines are available on our website and in the patient brochure, and they are what the radiology team will work from.

With those in place, scans are possible on any part of the body. That includes the head, including the area directly beneath EASEE®. Structures there generally remain well assessable, and artefacts tend to be minimal.

So an MRI is not something you have to give up. It is something you plan for, with the right information in hand.

Save this for the next time it comes up. Future you will be glad it is there 💬

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.

14/09/2026

Getting to the right diagnosis can take a while. Sometimes years 🧠

First seizures are rarely clear-cut. Findings contradict each other, results come back inconclusive, and the story you tell in the appointment does not always fit neatly into what gets written down. Plenty of people describe the same thing: the sense of not quite being believed.

Women in particular are sometimes told it is an anxiety disorder before anyone looks for epilepsy. That detour can cost years.

Here is why the precision matters so much. Treatment only works when it is matched to the actual type of epilepsy. The right diagnosis is what makes it possible to reduce seizures properly, and fewer seizures also means a lower risk profile over time.

If your diagnosis still feels unclear, or if nothing has really added up so far, an assessment at a specialised epilepsy centre can be worth discussing with your treating team. A second look is not a step backwards.

How long did it take before you had answers? Tell us how it went for you, 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.

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Margot-Becke-Ring 8
Heidelberg
69124

Telefon

+4962216559300

Website

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

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