Confusion : Hi I’m new! I’m 20 and have... - Epilepsy Action

Epilepsy Action
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Hi I’m new!

I’m 20 and have had epilepsy since I was 14! I’m unsure how I got it, it’s just one of these things, I guess. Recently though I have started getting really oddly confused, does this happen to anyone else? Like you aware but not?...

9 Replies

Hi welcome

Yes that’s exactly what I have 🤗

Hi yes I get that sometimes aswell I have had epilepsy since I was 7 and I have found that some of the feelings/experience you get with epilepsy can only be explained by words like funny/odd/weird ect as there's nothing else to explain exactly how it feels and these are the only types of words we can come up with to explain it but putting it in a explanation seems to help understand the feeling more . My best friend is the person I report to and she's also my emergency contact for the doctor every day we go through the how do you feel and she listens out for key things eg feeling abit funky I can't really explain but like my head is like floating but boady is sinking like I said it's funky but I don't trust so not doing anything today few hours later it's gone this type of talking puts my friend on alert even though it's probably just another false aurora.


Hi there,

Yes confusion, doubt and uncertainty are often present quite rationally as a consequence of electrical misfiring of the brain.

I’m in my 40’s and was diagnosed at 13.

Seizures pretty we’ll controlled with meds but still a lot of less discussed effects. Confusion, memory and other cognitive impairment.

Mood changes, fatigue etc.

It’s invisible so unsettles and confuses people. This can cause sadness, shame, frustration anger etc.

Notice a lot of toxic rather than nourishing words above. Try to shift it over to positive.

I managed to overcome this and become a successful financially independent well travelled and tolerant man.

It’s important as I’ve learnt over the last few years to accept what this is and learn to admire yourself for your fortitude and resilience.

Epilepsy action are great. I also found the MyEpilepsyTeam app useful and can reduce the sense of isolation in dealing with this.

This condition does shapeshift a fair bit which makes it challenging for the medical profession.

Do what you’re good at. be beautiful generous and kind without Being apologetic. You are a warrior to deal with this.

My very best wishes to you.

I totally get and I have your back anytime.


Fluffybee in reply to Hidden

Hi Biking202

It took 3 years to be diagnosed it was put down as stress and depression.

So hard to explain to people who don’t have it, one explanation I’ve used is, you know know when you’re sitting in a car and the one next to you moves it can make you feel strange. ? That’s like one symptom I have.

Also walls, doors, houses, roads sliding sideways, windows not straight, walk into a room and feel really tall or really short.

I say things I don’t k is I’ve said, found myself in different parts of the house to where I was.

It’s all so strange but it’s the falling to sleep or nodding off on a chair and getting that really string surge go through my head, improved since increasing a Keppra.

Memory, cognitive etc all affected pretty badly.

I’m sure most of us feel like that and the extreme tiredness.

Whinge over 😃



Thank you for your message.

There are lots of different types of epileptic seizures. In some types of seizures you might stay aware of what’s happening around you and you might have strange sensations, or movements you can’t control.

If you haven’t already, it may be a good idea to speak to your epilepsy specialist, epilepsy nurse (if you have one) or your GP about your symptoms. If they think your symptoms could be seizure related, they may be able to review your epilepsy treatment to see if this can reduce them.

We have more information on different seizures types here:

I’m glad to see you’ve heard from others on this platform, as sharing information and experiences can be a good idea. Can I just check you also know about our other services?

We have our virtual support groups We have our forum4e online community, and we are on facebook and twitter

Finally, please feel free to contact our helpline team. You can either email or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Thursday 8.30am until 8.00pm, Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.



Epilepsy Action Helpline Team

Hi I got this epilepsy in January 2016. It sad it messed up my life but we gotta keep going. I wonder if the epilepsy Rate has been going up in the last few years!

These sensations are very common. I have grand mal epilepsy which was diagnosed when I was 14 as well. After many tests it showed that the funnel system at the base of the brain that filters the amount of serotonin from the right to left side of the brain was not there. When you get really excited or upset the production of serotonin is very much increased and that is what caused my seizures. You might want to have more tests donee to see what is the reason for the epilepsy. As far as the auroras you experience also may be a sign to have you meds rechecked.

Yeah I think I’m gonna like get myself checked! I’m sick of feeling drained and insecure! I never have energy and I’m 20 year old I’m literally in bed most of the time, most people have hated lock down but it really has been a break for me! I mean I’m under a specialist at the moment and literally my next appointment is October, I’m so frustrated because I’m starting college in September and need sorted out!

I've had that for many years but I've just grown to it and started writing lists if I forget things easily.

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