Epilepsy

[PerkyOchrePeer]

When I was 13 I started having blackouts and seizures which lasted until I was about 23 and then they suddenly stopped and I have not had one for 40 years. I had numerous tests and brain scans and the doctors all said I did not have epilepsy and the medication they put me on I was taken off and I never had any blackouts again. I never got to the bottom of what caused them so is it worse trying to figure out and ask what was going on because blackouts and fits in my opinion are normally caused by epilepsy but I had tests after test after test and every test came back your daughter does not have epilepsy so what nurse was it then while was I having all these fits and blackouts

My toddler daughter started having seizures last year and was diagnosed with epilepsy with no sign on eeg or mri but being modern times we recorded the episodes which an epilepsy nurse, paediatrician and nephrologist reviewed and came to the conclusion it was epilepsy. From what I have read regarding epilepsy in children, the brain can “rewire” itself so they no longer have seizures, sk perhaps you did have epilepsy and now you don’t.

Did you not read my post properly I did say in my post at the doctors said I did not have epilepsy and it was several doctors and they're all checked me over thoroughly

When you have epilepsy you have epilepsy for life it doesn't just magically disappear on its own so I don't believe I ever had it

some types of epilepsy aren’t for life..

Well when I first had the blackouts and the fits I was put on medication and then I had numerous tests and the doctors came to the conclusion that I did not have epilepsy so they took me off the medication but then periodically I had fits that was never put back on any medication and then suddenly out of the blue they stopped and I haven't had one for 40 years

I remember going to a youth camp and I suddenly woke up in the medical tent and somebody was with me looking after me and I said what am I doing here and they said you had a fit and the very last time I ever had one was when I was staying with a friend I remember quite clearly waking up walking into my friend's bedroom and then the next thing I knew I was in hospital because apparently I had a fit

Im unsure what you want from your post?

I was just posting curious to see if anyone could explain what those fits were why I had them and why they stopped because I don't know anybody with epilepsy who doesn't have any fits for over 40 years with no medication

I've just looked on the internet and it said some forms of epilepsy can be outgrown so I guess that's what happened to me

I think what the other person was saying is that epilepsy now is diagnosed differently so you may have had it as they track frequency of seizures etc and you can grow out of some types, so gave you a good answer which you then dismissed.

How can I dismiss something I know nothing about I don't understand what you're saying

If I had been given a diagnosis of epilepsy I would not have dismissed it because even at a young age I knew that it was serious because I had a friend who had epilepsy who had fits every day

I don't int know if you're a troll or not but anyway.
The first person who replied to your post said that forty years ago the doctor dismissed the idea of you having epilepsy, however, If your symptoms happened now and present day doctors looked at those symptoms they may say you had epilepsy.
Epilepsy is a symptom. It's a broad term for someone having seizures. It can be caused by something that is clear on an mri scan ie brain tumour, or it can just happen for no obvious reason.
Guessing yours was for no obvious reason and as others have said you've grown out of it

Age 13-23 years is the classic age to have Psychogenic Non-Epileptic Seizures (PNES). They don't show up on tests because there is no altered brain activity. They do not affect airway and breathing in the same way epileptic fits do as you are able to maintain them. They also have a notable lack of tongue biting and incontinence.

Yes, some forms of epilepsy can resolve.

I have epilepsy, apparently my mum says she believes I used to have them in my cot, then they disappeared until I was around 11//12.

turns out it was/is catamenial epilepsy. Basically hormonal epilepsy caused by hormonal imbalance around my periods. They also ramp up when I’m pregnant.

it could have been that? You say you were 13? Maybe your hormones balanced out.

I'm 39 now and 37 weeks pregnant. I’m interested to see what will happen after or during menopause to be honest.

By the way I’m medicated and high risk/consultant led & closely monitored during pregnancy as I fall and hold breath when I have a seizure during pregnancy. They are usually well controlled when I’m not pregnant.

nothing was spotted on my eeg tests or at home eeg tests, it’s just an increase in oestrogen and progesterone doesn’t balance out. Specialists advise progesterone based contraceptives to help which without medication it doesn’t really.

More of us with epilepsy than most of you would think have normal EEG and MRI results unless we are unfortunate enough to seize during the test.
A normal result doesn’t indicate dissociative seizures.
Also 70% of people with childhood epilepsy grow out of it.
There are also many pretenders to the throne of epilepsy https://www.epilepsydiagnosis.org/epilepsy-imitators.html#:~:text=OVERVIEW,MISCELLANEOUS%20EVENTS
The OP stated that they were put on meds but the doctors then decided that she didn’t have epilepsy. She may have grown out of the condition and the meds were withdrawn, or it went into remission for long enough that the doctors thought it was safe to withdraw the medication and ‘you don’t have epilepsy’ was the way they chose to explain their decision with the omission of ‘now’ or ‘any longer’- ( I have to say it isn’t the crappiest explanation for something I have heard from a consultant or doctor).

What meds were you actually given?

Epilepsy is a diagnosis of exclusion. It could be that they originally thought you had the condition and then reviewed their decision. Wouldn’t be the first time I’ve known the medical profession to change tack.

Oligoepilepsy
look it up.
Seizures, please. You fit clothes and shoes.

I started with epilepsy when I was 9-10. Loads of to-ing and fro-ing with doctors. My consultant at the time was pretty certain that I’d out grow it by the time I was 20, presumably due to the age of onset and type of seizures (a mix of absences, jerks/twitches and full-blown seizures).
He was completely wrong, but presumably his certainty that this was just a juvenile condition (that’s literally the word that was used in the diagnosis) means it’s reasonably common for adolescents to outgrow epilepsy.

Sorry - to add: another child who lived in my road also had epilepsy (would now be about 58 or so) - I know she stopped with medication when she was 16, seemed to be “over it”.