Anyone experienced anything like this? Possible epilepsy?

[Trampire]

I'm currently very anxious about my dd. She's 13.

Last June she had a week off school with a whole host of symptoms. It started with her describing very quick moments of 'de ja vu' followed by nausea (but not actually sick) and mild headache. Over the next few days she experienced vertigo, extreme sleepiness and light-headedness.

I saw the dr a few times. 2 different drs. The first dr just said it was likely a virus, but feelings of de ja vu can be reported by people suffering with epilepsy.
The second dr said he believed she had a slight inner ear infection in one side which had triggered an 'ocular' migraine and she was suffering both at once. (She does sometimes get normal migraines).

After a week she recovered and all was fine.

However this week she's been complaining of these sudden de ja vu moments that leaves her light headed, sometimes with a mild headache. She had no vertigo this time though so I suspect there's no ear infection this time.

I've just booked an appointment with the same Dr, but I have to wait 2 weeks. In the meantime I'm going out if my mind with worry.

Is anyone familiar with epilepsy? Has anyone come across these de ja vu feelings as part of an 'aurora before a mild seizure?

I will admit I have a tendency to catastrophise.
A good friend of mine lost both her children very young to different diseases/infections. My 2 best friends both have children with major heart problems who need regular surgery.....and my beloved Dad just died of late-diagnosed cancer last year.
I think I just feel like nothing medical ever goes well atm!

Any ideas?

The deja vu feeling can be part of a migraine aura or silent migraine. I would ask for a Neurology referral. My teenage son has been having visual disturbances and "zone outs" where he feels "weird" and not sure if time has skipped. We have just been referred to Neurology but might see someone privately if the wait is long. The GP thinks it might be a ocular migraine or silent migraine or migraine variant or perhaps a focal seizure. My son is super fatigued afterwards for 3 or 4 days. He has just started sixth form college and has had to take time off due to being so wiped out and is worried "it" will happen there. It's very stressful. I hope you get some answers soon.

Thank you so much for your reply Kikashi.

I've been reading Google (bad idea I know) and it seems that these 'Deja vu' feelings are indeed often reported with migraine but also mild 'Partial' epilepsy. Quite often people are left officially undiagnosed.

Dd has been much better the last few days but like your DS, has felt very wiped out.

As horrible as these symptoms are for anyone it makes me feel a little better that there are others that have had similar things.
She has had migraines in the past that have lasted a 2-3 days made her sick initially and had tingly arms etc. So I think she's very prone to these disturbances.

I will ask the GP about a referral. I hope your DS gets some answers soon too.

Hi OP, I came on to say this could be migraine too. I get pretty mild migraines that consist of visual disturbance followed by headache and nausea (although I can prevent the headache/nausea if I take paracetamol as soon as my eyes go funny). Just before my eyes go spangly I almost always get a weird sense of euphoria - I feel suddenly good, light-hearted and hyper-aware of my surroundings. I'm pretty sure that a sensation of deja vu is a fairly common symptom of impending migraine. But best obviously to get it checked out. Hope your DD is ok :)

Thank you BlackInk.

I've been reading lots of anecdotes via google about Deja vu. Many are indeed migraine sufferers but others have epilepsy.

I'm slightly stressed again today as dd had been fine for 3 days but today told me she had 2 Deja vu's. One on the school bus when she saw a lit up stop sign. The other was in a History lesson. However today he had no headache to follow just a slightly panicky feeling.

If they are migraine, I'm wondering why so many? Why no huge headache afterwards?

I think I'm just going to have to wait this out until the GP appt and go from there.

I have this type of thing with migraines too, i also get confused and unable to speak properly. I had lots in teenage and early 20s, then had hardly any for years. My thyroid started causing issues and i had terrible cluster headaches and migrines with no apparent reason. Some lasted 4 days. Defo get GP to listen to every symptom. Also a diary with food eaten and drinks, exercise, basically anything that could be relevant.

If my blood sugars are up and down or i havent eaten much it can bring it on. Good luck with gp x

Thanks Fstar. Every time someone says they've experienced something similar it makes me feel slightly better.

In between these Deja vu 'attacks' she seems fine. Some she says leave her feeling slightly fearful.

I thought it might be school that was a link (perhaps meaning anxiety/stress/concentration etc) but she's had them at home too, sometimes after a long lie in or just pottering around the kitchen.

I'm really trying to keep my own anxiety about it under control.

I'm leaning towards migraine because she's suffered classic migraine before - just nothing like this or as often. Once however she had a numb arm and flashing lights before a full-on migraine so maybe she's very prone to visual disturbances.

She has had a full eye test too which found nothing.

Does it happen randomly? Sometimes migraines can be affected by hormones. DD only gets migraines when her progesterone levels change and they're always preceded by dizzy spells. I get visual disturbances accompanied by a feeling of disassociation.

I don’t have any experience but was also coming on to say it could be hormonal. What a worry for you. Hope you get some answers.

Last time there was a spate of Deja vu it was whilst she had an ear infection too. However I suppose it was probably mid-cycle for her.

Over the summer we had no Deja vu at all but now this it's back. One day she'll have one, then nothing for a day, then two today. Again though, I think it's mid-cycle for her.

She's very womanly for her age (13). She's about 5 ft 6, size 10 in women's clothes, small waist and large boobs. She hasn't had a big growth spurt since Y6 when she grew really tall overnight.

Trampire I sympathise with you as it is so easy to Google and always spot the worst case scenario for ourselves and especially for our children. Is it possible for you to see a GP quicker? Could you have a same day appointment? This would alleviate the anxiety then just list everything and say clearly what your concerns are. I do this now as in the past I would agonise for days and then when I got to see the doctor I wouldn't clearly state what my worries were. You will see there are other explanations rather than Google's worst case scenario.

Well, a little update.

I took dd for an 'emergency' appt today as she woke up with what I would call her classic migraine symptoms (ie she's had these many times before) - bad headache, slight nausea, tingly arms and dizziness.

I had to see a GP we'd not seen before but dd did a good job in explaining what has been going on. GP said it was a very interesting case! However he's pretty sure all the Deja vu is connected to migraine. Cluster migraines can be a thing, and not all them are severe (hence dd complaining of a mild headache after Deja vu).
Having said he's pretty sure that's what it is, he is referring us on to a paediatric neurologist to check it all out and see what treatment they could offer (if any).

GP says migraines change and evolve over time and adolescence is a flashpoint.

So fingers crossed we get somewhere eventually and perhaps the whole might ease up. I'm trying not to panic about seeing a neurologist. I think in my mind, that makes it hugely serious and concerning but I know that just my anxiety speaking.

Glad you got to see a good GP who listened and was reassuring. I guess the neurology thing is to be thorough but I can imagine you will be thinking all sorts. Fingers crossed the appointment comes through soon and you get the all clear for anything serious and a plan to keep your DD safe and well.

I’m glad you are being respected. But I recommend asking a neurologist for advice.

Good luck with the appointment. I’ve often been on the phone trying to get a appointment for my son and I’ve literally begged them to answer my questions during the appointment. Once you see a neurologist you need your questions answered. Take a list of questions and worries to the appointment with you. Bring a pen and notebook too.

Get them to explain any test results. If it helps you personally, have them draw you a picture or bar chart of the results.

update

I’m not sure if anyone is interested in an update but I thought I’d post one.

So, after nearly 4 months of frequent Deja vu ‘attacks’ and one or two migraines we finally got our appointment with a specialist.

He was really nice and thorough and listened to everything dd tried to explain. The upshot is right now, that he’s not entirely sure what this is but has ruled out anything life threatening.
He hasn’t completely ruled out temporal lobe epilepsy m but says dds symptoms are not anything he’s come across before. He believed an ECG test would give a clear test result right now and he doesn’t want to think about giving epilepsy medication when it’s not a clear diagnosis.
In his professional guess - her Deja vus are some kind of panic attack. He explained its possible to have ‘background’ anxiety in which she’s unaware of anxiety but her body is reacting. Her description of how she feels while having one rang a bell with him, it’s just her attacks have visual disturbances alongside. They last a few seconds and she can breathe through them and recovers.

Dd says it makes sense. She says she feels quite happy generally but has felt a lot of different emotions and worries this Autumn.

So, we still don’t know for sure. The Dr is seeing us again in a few months and will investigate for epilepsy if he feels it’s getting worse or not getting any better at all.

He’s says she’s also suffering from classic migraines that are separate to these deja vus. She often has a migraine aura or a tingly arm. He has given her preventative tablets for those.

So I feel very relieved she’s not dying of something very serious, but a bit frustrated there’s no quick fix.
The school are aware of what’s going on, but I’d like every teacher to know what these deja vus are like so they don’t give her a hard time in class. I think I’ll get round them at parents evening!

I’d be interested to hear from anyone who had similar experiences. I think it may a long time to know for sure what’s going on.