Diagnostics tests clear but still having seizures!

[WillemRush]

Hello everyone,

I’ll try and keep it brief as possible but currently feeling at a loss and not sure how to continue.

Had my first tonic clonic seizure in 2019 during a medical congress. Lots of GP/doctors around and eventually ambulance was called and brought to hospital. CT scan clear but referred to neurologist for potential epilepsy. Due to pandemic that didn’t happen but suffered another seizure a few months later.

In the past three years I have had CT (after a fall), MRI, ambulatory EEG and everything has come back ‘normal’ despite seizures still presenting. Tried AED but didn’t seem to work and suffered quite a bit from side effects. As I found that seizures were most likely happening around my period my GP decided to start with an injection to stop my periods. That went ok but as soon as the injection was to run out I would have lots of seizures during that week. After seeing the neurologist last year October they decided to put me on beta blockers to try and avoid headaches as this used to be a trigger. For several months this has been working but over the last month I have been getting more seizures, although slightly different pattern than previously. Totally out of the blue!

I am wondering if ANYONE has been in a similar situation where all diagnostic tests have come back as normal but are still suffering with seizures? It’s starting to affect my day to day living and therefore my job. Very keen on anyone’s thoughts or experiences?

Many thanks for taking the time to read my story!

Willem

[Summertime23]

Hi Willem,

I'm very sorry to hear what you have been experiencing. I can't imagine how you are feeling not knowing what exactly is wrong.

I understand it is not uncommon for people having seizures to have a normal EEG & MRI.

Even for those of us with positive EEGs the first thing our specialists do is try us on a variety of AEDs, one at a time until the best one arises. It can take a while and in many respects is just a trial and error experience, but that is simply the nature of the beast. What works for one may not work for the next person. In consideration of this I just wonder if it might be worth trying other AEDs in the hope that one will help you.

Wishing you all the best in your journey. Hopefully it won't be long before you get better control over these seizures. 🙂

[Whyme89]

Hi, sorry to hear what you're going through.

Have you considered that you might be experiencing 'non epileptic seizures'? Also known as Dissociative seizures.Low blood sugar levels can cause this, ie, Hypoglycaemia.