I started having "auras" or deja-vu at the age of 36 and that's where it always ended. Then one morning I woke up with bitten tongue and I assumed I had a seizure in my sleep, so I booked myself an appointment with my GP who referred me to a neurologist who in 7 minutes without any tests said I have epilepsy - only from what I told him! For what I know, I could have been lying. From the research seizures can be also non-epileptic. I'm not saying I don't have it, but how can I trust a smartass DR who thinks he knows it all? He referred me for EEG and MRI later but I didn't go because I didn't have trust in this guy. Then some time later, I'd seen a family friend who is a neurologist, she's done EEG on me and didn't see anything unusual. Now I'm waiting for MRI. I'm very nervous and anxious getting this as an adult out of nowhere!
I had some sleep seizures on Sunday and some more auras whilst awake yesterday but this time it was different. My consciousness oddly changed - I don't know how to describe it. I don't feel familiar in my own body, house or talking to my family, doing my job, ... there's this strange distance. I know where I am or who they are but the familiarity from before is not there. Like none of this matters and I'm not supposed to be here... Anyone else experienced this? It's quite scary
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jadenew
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Hi there, I have the same as you and I was diagnosed 15 years ago with temporal lobe focal seizures. I had the symptoms for several years before, undiagnosed as they had become part of me and my life. The kids used to say "Mums got her angels again and excepted it" Then out of the blue I had a Grand Mal seizure in the night and an ambulance was called as I had got out of bed and fallen into/over my exercise bike. I remember nothing about it but was given the diagnosis in hospital. I was given strong meds which stopped them, but they totally depersonalized me, (Topiramate and Levetiracetam for 7 years) I turned into a very angry person. I would rather have had the seizures! I did not realise how they had affected me until I read the side affects from someone else.I went private to see a Neurologist because during Covid, as I could not get hold of an NHS one. She prescribed lamotrigine, it was great for a while then the seizure's came back, I upped the dose to the highest but still I have the odd one or two, always at night. I bite my tongue and smack my lips and I know I am having them as I am aware at the time. The feelings at the time are nice, kind of drifting off, the aura I believe. In the morning, I know how many I have had, my taste goes for a couple of days and I have strong Deja vu and a real nasty headache for the and all I want to do is sleep, I can have a couple during that day too.
When I was first diagnosed, I hated it, they had been part of my life for so long and I had got used to them. But they had become a danger to me too, for example I picked up the car keys one day with a bag packed with only a pair of my sons underpants and said I was driving to my friend house in London. Of course my partner stopped me. Another time I was on holiday with mum and my sister and my sister woke in the night to find me sitting on the bed wide awake. When she asked me what I was doing, I said I was waiting for the postman, I frightened the life out of her as she had never seen me have a seizure, I did not remember a thing, she made mum sleep in the room with me after that.
I had a CT scan while in hospital after the Grand Mal ( I have not had another one of them) and I have small a lesion on the left side of my brain, from where I don't know as I don't recall banging my head ever.
I am 62, on meds and still having the odd seizure. It's a pain but part of my life, but I am used to them. Also I have just been diagnosed with ADHD, oh joy!!!!
It is/was scary but please get medical help, as I said it can be dangerous for you and others. I have been where you are and I accept it now.
It can come as a big shock to be diagnosed with epilepsy in adulthood. Most people think epilepsy starts in childhood. But as you’ve found out, that isn’t always the case.
For most people - six out of ten, in fact - there is no known cause for them to develop epilepsy. For some people there may be a clear reason.
It’s not unusual for the neurologist to diagnose epilepsy just from your symptoms. This is because there isn’t a single test that can prove if you do or don’t have epilepsy.
An EEG test gives information about the electrical activity that is happening in your brain at the time the test is carried out. Many people with epilepsy only have unusual electrical activity in their brain when they are having a seizure. The rest of the time the brain activity may be entirely normal. So, if your EEG test doesn’t show any unusual activity, it only means that there is no epileptic activity in your brain at the time the test is being done. This doesn’t prove that you don’t have abnormal activity in your brain at other times. And it doesn’t exclude you having epilepsy.
I wonder if you would find our information for people newly diagnosed and getting the right treatment helpful.
If you have concerns about your diagnosis it would be best to discuss this with your neurologist or GP.
If you would like to talk to us about your diagnosis and concerns please phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm.
Hi there, I was diagnosed with epilepsy in my early thirties, the first seizure was a full on one which happened at Waterloo station at rush hour and I only came around afterwards at A&E at St Thomas’ Hospital.
At the time I was devastated and thought my life had come to an abrupt halt. I’m fortunate, we’ve found meds that (largely) work and with a mostly good employer I’ve managed to carry on pretty much normally. I travel extensively, including extended periods living in developing countries.
I know my experience has included a certain amount of luck, a good employer a great neurologist and a great deal of determination not to let the epilepsy define me, but for most of us there are ways through this after the initial shock of the diagnosis.
Wishing you all the help you need in managing this.
Thank you all for your responses, it really helps a lot to know I'm not alone (although I'd rather be). I just can't get over the diagnosis based on 7 minutes of a conversation. Epilepsy alone is apparently misdiagnosed in 90 000 people each year n the UK alone! That's just one condition in one country per year. That is absolutely shocking and I just can't get over it. There should be definitely more awareness around misdiagnosis / limitations of diagnoses. Especially if such a serious condition can limit our lives so much.
I definitely need some time to adjust, I do have a lot of anger and resentment right now, but it doesn't change how wrong the process of diagnosis is. We definitely need a massive overhaul and raising awareness is the place to start. I know it's the big ugly elephant in the room no charity wants to talk about, but if the last 10-20 years didn't prove it is possible to overcome bias, then nothing will.
Thank you guys again for your responses, I feel so sad reading your stories, I wish I had a magic wand that could heal everyone. Sending hugs xx
It really can be hard to diagnose these things. I work in emergency and we get a spate of seizure or seizure like activity in the department. I'm sure you've read up on both seizures types/epilepsy and non epileptic attack disorder etc. They are somewhat distinguishable in practice. It is true that it can be difficult to distinguish between them in a person who has epilepsy and NE episodes.
In my personal life, I remained poorly diagnosed. They wouldn't hear me out. And it is only after my EEG my neurologist came back and apologised to me.
EEGs are often normal in alot of epileptics unless they catch a time when the person is symptomatic. For me, I felt my usual unwell self, but my EEG was completely abnormal, and worsened with triggers. So 'normal' me is often somewhat in non convulsive seizure mode apparently.
Neurologist had been in denial after failing to read my MRI brain for eight months, which unfortunately showed a brain bleed, a frontal lobe lesion and demyelinating lesions of my left parietotemporal region. And for a while I wondered if I had just lost it, dissociated or gone insane. But nope, these strange sensations, autonomic issues, blackouts and right sided weakness were down to epilepsy.
But you're right. Things can be misdiagnosed. In ED I have to calm nurses and juniors down, when they are concerned someone is actively seizing. But for you, you seem to wake up and think you've had them, it's difficult to comprehend it as NE if you're not even aware at the time. But seven minutes with a doc, they don't even allow you time to process the info anymore. It's just shocking
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Nighttime seizures advice required
Can you have fit's just because of a bath?
Kepra 1250mg, Newly diagnosed, epilepsy 
Alcohol induced seizures 
Focal motor seizure disorder
