Temporal lobe epilepsy - anyone have this?

[Goatymum]

I have been having really weird deja vu episodes for nearly 4 years now. I have mentioned to GP and a couple of other medical professionals and they didn’t seem too concerned and they happen pretty infrequently, but in clusters. I also had an mri for an unrelated condition 3 years ago which was clear. They are def worse when I’m stressed.

however, I just had a really bad episode last night and blacked out without warning (didn’t feel faint but was very scared when I came too).
Dh called an ambulance but there was such a wait that he took me in car as I could walk etc . I had a head CT, bloods and ecg. Everything was clear and they were more focused on the blackout thinking it was heart related but now I’ve googled ‘weird Deja vu and fainting’ I can see why I blacked out and that it is a symptom of this type of epilepsy.
I am going to call GP tmw (they must despair of me as I have so many conditions!) and see if I can get an appt to discuss/be referred for further testing.
Im not v worried as I know it’s not a brain tumour but obviously no-one wants to have epilepsy and it may be au revoir to the car (a pain for work but at least I’m only in office twice a week).

If you have these symptoms or a diagnosis feel free to reply with experiences.

Hi OP - how are you getting on? I've been having these symptoms periodically for about 8 years, GP sent me for a brain scan years ago but it came back normal. Had a lull of no episodes for a while, then recently theyve come back. An episode for me consists of sudden intense terror, intense feeling of deja vu, fear, like a dream/nightmare leaking into waking life, hallucinations of people/places, nausea (to the point of vomitting), headache. GP has now referred me to a neurologist, i'm just waiting to hear from them for an appointment. I hope you're doing ok OP!

@CestLaVie123 hi! Sorry you didn’t tag me so I didn’t see this. I’ve actually got my neurology appt this afternoon so will update then.
I haven’t had any episodes since November but they weren’t frequent prior to that either.
Have you got a date for your appointment yet? I only waited 4 months on nhs so not too bad, although have to trek to central London for it.
Hope you’re not doing too badly and attacks have lessened.

Hi, I have this form of epilepsy. My seizures also start with an intense feeling of fear, then the deja vu. I was young when it started and ignored it. I did black out once in a shop. I had my first and only tonic clonic seizure in about 2006. I had a scan and ECG when I got to the hospital and was then diagnosed. It's now well controlled with medication and I can drive. I'm not please about it obviously, but I don't really think about it anymore, other than to take a tablet twice a day.

@Owlplant and @CestLaVie123

just got back from my appointment. Saw a really nice consultant who confirmed they were seizures and he’s booked me in for an MRI and eeg. He said let him know when they’re done and he’ll review them as it’s taking 6 weeks for results atm!
Weirdly he said I was the second patient that day with similar symptoms and he said the other patient had also googled, etc! Not in a bad way, but just to find pout wtf was going on.
How often did you have the seizures, Owl? I’ve only really had 2 bad episodes in over 4 years.

Hi @Goatymum I have temporal lobe epilepsy and was diagnosed in my early 30's. I'd had a couple of years of deja vu episodes (also in clusters), but had been putting them down to stress and had wrongly assumed they were some sort of panic attack.

It wasn't until I had a full tonic clonic in my sleep one night that I was referred to a neurologist who joined the dots and diagnosed TLE. I'm now fully controlled with medication and can drive again. It was a strange time going through the tests and accepting the diagnosis, but I am grateful as I now understand what it is and - more importantly- know what the triggers are and have found the right medication & dosage to keep my symptoms under control.

Before medication, I would go for maybe 4-6 weeks of no symptoms, then a couple of days of episodes, always starting with an awful feeling of dread, a 'flip' in my stomach like being at the top of a rollercoaster, then intense deja vu. I didn't lose consciousness, just went quiet and apparently looked like I might be sick.

My son (non-verbal) has had tonic clonics. I am sure he has TLE as well but his neurologist won’t entertain the idea.

Did anyone’s show up on an EEG and if so how long did you have the it?

@Whatstheweatherlike - thanks for sharing. I’ve only had it twice really in terms of the intense deja vu feeling (and then a few more the next 2-3 days decreasing in intensity). I had a few tiny episodes when I was v stressed and last time I hadn’t slept properly and was probably pretty stressed. So I can conclude anxiety is a trigger and maybe lack of sleep? What were yours??

@BelindaOkra - probably hard to diagnose TLE if you can’t verbalise the sensation. It’s very odd. I actually had stuff written down to help as I didn’t want to be fobbed off.

Yes, stress was definitely a major trigger for me as well as lack of sleep. I don't just mean having a rubbish night's sleep, more if I'd been sleep deprived over a few nights. The other things are going a long time without food, as well as too much alcohol. I'm now okay having a small glass of wine, but I spent a good few years with no alcohol at all, just to play it safe.

Thanks @Whatstheweatherlike -,that makes a lot of sense. I don’t drink currently so that’s good 😆 and I definitely eat well so it’s really the sleep and stress aspect I need to watch. Sleep
is usually fine but stress I find much harder to control and I’m anxious by nature (the consultant actually mentioned anxiety, that his other patient yesterday with the same symptoms said they were anxious and I said - likewise!).

Hmm interestingly we think DS may have had one a couple of days ago. He was putting on his seatbelt and went blank (but not quite completely blank as he does with an absence). He was really confused and couldn’t put the seatbelt on (never has any problems!). It wasn’t a physical thing, it was confusion. Then he was back.

He’s had a lot of terrible sleep recently - whole nights awake - and I recorded that as a potential trigger.

His often seem to come in clusters - so interesting to read that about others as well.

The reason I think TLE is that everything changed for him when he was about 15/16. He started getting intense nausea episodes, and sudden anxiety/fear/emotion which then led to distress. He sometimes will suddenly laugh weirdly which can be followed by distress. Everyone who worked with him suspected seizures. Then after about a year of this he started having tonic clonics. I had to video one of those for a neurologist to believe he was actually having seizures - he’d told me before it definitely wasn’t seizures. Honestly the bar for proof is set very high with him - so we have next to no chance with TLE as it relies on the ability for someone to speak out. Unfortunately his current neurologist who is the learning disability expert here (ha - he’s told me he doesn’t really know anything about learning disability - no shit Sherlock) just doesn’t seem to believe anyone with learning disabilities or autism can have seizures.

I have temporal lobe epilepsy and I've found it has settled in the last few years - triggers for me are illness, tiredness, alcohol and stress.

I drive, manage a team at work and live an almost normal life - for many years I am not even on medication (I prefer not to take it because it makes me a big anxious!)

@BelindaOkra if your DS' consultant isn't taking it seriously I would ask for referral to a different consultant in that case as I'm not sure his information is correct!

@TomWambsgansSwans honestly I have tried. A national specialist is close by but have not been able to get an NHS referral and he does not take private patients. Whenever I bring it up with anyone local, they just say - off record of course - that he needs to retire. Not all that helpful really!

Interesting about the anxiety related to meds. DS is on episenta which has controlled the tonic clonics but he still gets some absences and focals.

@BelindaOkra that specialist sounds awful! The fear is definitely real with the TLE - it’s rising nausea (like when you’re stomach drops) and then the deja vu feeling.

@TomWambsgansSwans glad yours is controlled. I shall wait for the tests and diagnosis! I’m not keen on meds esp if I only get it once every couple of years or so.

Thank you - this is what it looks like when looking at DS (to those of us who know him well).

My DD was diagnosed with Frontal Lobe epilepsy at aged 8 years. Today at the age of 16 she now has complex Epilepsy because original EEG said Frontal Lobe but it's not consistent and other EEG have picked up General as in the whole brain. She spend a week in ICU last year due to cluster seizures. Basically with my knowledge on Epilepsy most events will not be captured on an EEG and CT scans plus MRI scans will more than likely always come back as normal. What I suggest you do is keep a diary or these events. Even when you have a black out whoever is around you should record the event and describe what your eyes and body posture look liked.

Déjà vu is common for those with epilepsy, it's more of a warning sign to tell you so you can make yourself safe. My daughter had them but she also had tingling in her hands, sweaty palms, and what she described as a rising feeling in her tummy. She can also get not auras and have a seizure with no warning signs.

Hope this helps.

I'm so glad I spotted this thread! My husband has this, he has described the deja vu and feeling of dread to the letter. He had the deja vu feeling for several years, usually at times of stress or when he hadn't been sleeping and then 7 years ago had a tonic clonic seizure seemingly out of the blue, followed by a 2nd half an hour later. He volunteered his driving licence for the required 6 months but then had another at 5.5 months. That was Dec 2017 and thankfully hasn't had any since then. He was put on a low dose of antidepressants (has depression too and I had been gently nudging towards this anyway) and it seems to have helped take the edge off. He will very occasionally have the deja vu which fills me with absolute dread, it wasn't an easy time for us and I know it would really affect his MH.

At the time of the first seizure he had an MRI which came back clear but it was just left at that and put down as stress, there was no mention of it being a form of epilepsy or that it could be medicated beyond the antidepressants.

@AlwaysWearSPF thanks. I do think of it as an aura, but I read auras are also seizures. I had every thing written down for the consultant and I even asked my husband tonight if when I lost consciousness I did any weird jerking and he said I was just moaning and didn’t slump or anything- was sitting in an armchair.
I def had the rising feeling too, and went red (I had it in front of friends 4 years ago). I’ve only ever had 3 sets of clusters in over 4 years. I v occasionally get a very fleeting sense of it but without the rising nausea/flushing.

@cathyj87 - sorry that your husband suffers too. It really is a horrible feeling esp not knowing when it might happen. My GP was initially dismissive but since it happened in November and I went to A&E etc things are now moving!
im hopefully going to start some therapy soon - I’m not depressed but I am anxious. I’d say mild to moderate anxiety.

Hi OP, sorry for the late reply. It feels like a long time ago, but I'm sure I didn't have a 6 week wait. If fact I remember it feeling like it was all happening so fast. I'd say at the beginning and after the tonic clonic, they were happening Avery 3-6 months. It was going on for a while, and I didn't do anything about it. Not happened for years now due to medication.

Hi! Just to update on this.
I had a clear MRI and EEG in the summer and it has taken this long for the full MRI report to be sent through to the consultant (although he did let me know straight away there was nothing sinister going on).
I haven't had any loss of consciouness seizure since this time last year - I had one day in April when I may have had very small deja vus (which I reported to the consultant) but nothing like I had a year ago.
So his findings are that they are probably focal aware seizures, but as I haven't had a loss of consciousness for a year and no deja vu for 6+ months, he has reported that I can go back to driving for now and let him know if I get any more seizure activity and he will look in to medication.
I have had a good few months of therapy now and do feel less anxious in general, it is definitely fuelled by anxiety so I do need to keep that at a minimum.
I hope everyone else affected is feeling Ok at the moment.