Anxiety or Epilepsy?

(63 Posts)
Milicentbystander72 Fri 29-Nov-19 12:11:10

I'm hoping for anyone experience of panic attacks or epilepsy that isn't the 'norm'

My dd is 14. Last year from Sept - Dec she suffered almost daily with what she called 'Deja vu' attacks. She would be doing something normal, non stressful and suddenly she would have a 'rush of Deja vu' for around 10-15 seconds. Often they would leave her with a 'hot' neck, or temporary muffled hearing. She said she could feel them coming and would feel 'fearful' while they were happening.

On top of this she suffers from migraines.

Her attendance at school suffered badly and was down to 89% at one point.

We went to around 4 different GP's and eventually saw a senior paediatrician. The SP asked dd lots of questions and took her very seriously. He said that it could be a form of epilepsy but the chances of testing it were very low and he wasn't prepared to prescribe medication for epilepsy (I agreed). He said in his professional opinion, which was a guess, he would say these are connected to anxiety and are a form of panic attack. For dd this will be background anxiety she is virtually unaware of. He prescribed medication for migraine.

After this appt dd made a huge effort to relax in general, using calm apps, getting much more sleep and taking more relaxing baths.
Since last December she has no Deja vu's and barely any migraines. We were both delighted.

She's now in Y10. Happy in school, working well. However yesterday the Deja vu's returned plus a migraine. Dd has gone to school but is disappointed she's has more Deja vu's.

Anyway, in the bank of my mind I'm still wondering whether this is a weird form of epilepsy, maybe a tiny little fit that lasts seconds. She says she's aware where she is when they happen but she 'stares' and says her mind is filled with a rush of images. She feels tired and flushed afterwards.

Is there anyone that has panic attacks like this or heard of this?
I'm worried about an increase in stress for Y11 next year.

Do I go back to GP and asked to be referred to an epilepsy specialist?

Sorry for such a long post.

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Dandelionflower Fri 29-Nov-19 12:57:57

My dd suffers from anxiety and panic attacks. She keeps feeling like she's in a dream, or just had a bad dream. I've had different responses as to what's going on. While receiving CBT from CAMHS, I was told it was everything from "Oh, its just another symptom of anxiety." To "Its a bit concerning, keep a diary and we'll look into it." That never happened though.

Could be depersonalisation or derealisation, disassociation. Non epelectic seizures?

Dandelionflower Fri 29-Nov-19 13:03:31

I hope that makes sense, sorry its a bit of a ramble. My dd was also symptom free for a while, mainly in the summer holidays, (her anxiety is around school due to bullying) which does make me think this feeling is anxiety related.

Gingernaut Fri 29-Nov-19 13:11:14

Could well be anxiety with added depersonalisation and derealisation.

Milicentbystander72 Fri 29-Nov-19 13:11:20

Thanks for your response Dandelion. It's interesting to hear your DD's description of 'like a dream'. It sounds quite similar.

My dd has not been diagnosed with Anxiety at all and I wouldn't describe her as anxious. She insists she's happy, and seems it. However the dr said to us that often the body/brain engages in a panic attack without any conscious reasoning - ie, you can feel perfectly normal in yourself but your body decides otherwise. This is really hard to manage.

I don't know whether to investigate again or just leave things and encourage DD to go back to concentrating on relaxing (when she's not particularly feeling stressed!).

I've not heard of depersonalisation, derealisation, disassociation or Non epileptic seizures. Maybe an afternoon of googling for me!

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Milicentbystander72 Fri 29-Nov-19 13:12:07

Thanks for that link Gingernut. Having a good read now....

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Milicentbystander72 Fri 29-Nov-19 13:12:58

Sorry Gingernaut not but!

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Milicentbystander72 Fri 29-Nov-19 13:13:10


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Ketomeato Fri 29-Nov-19 13:14:41

Did they check her blood pressure? I get this when my blood pressure is low, which is quite often, apparently.

Milicentbystander72 Fri 29-Nov-19 13:19:23

When if first happened she had lots of tests yes. In between these Deja vu's she seemed fine. What was confusing matters was that she has migraines, often with aura - tingling arms, blurry vision etc. The Dr unpicked the migraines as being different to these Deja vu episodes. However her migraines are definitely worse if she's anxious.

However this past year she's been really well. Her school friendships are good and pretty solid. She seemed to be coping with the beginning on Y10/GCSE's well. But maybe she's unconsciously anxious again?

It's so confusing to even describe.

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PandasandRabbit Fri 29-Nov-19 13:21:32

It maybe worth going back to GP and getting epilepsy tests done / EEG.

I think whatever it is trying to keep stress to a minimum would help though not easy for year 11.

I'm not an expert on this (14 year old DD who also has migraines - suspect hormone related) but I thought it could also be migraine related.

It could be anxiety / stress but better to check nothing else is going on too. Normally if I get things with anxiety I am worrying about something just before.

Milicentbystander72 Fri 29-Nov-19 13:21:38

Ketomeato, does your blood pressure drop suddenly? Do you know your blood pressure has dropped when you get this? I mean, does it stay quite low as they test it? I'm wondering if her is dropping suddenly without her knowledge?

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Ketomeato Fri 29-Nov-19 13:24:04

It’s usually when I’ve been sitting down and then stand up quickly, or in a fright. I was meant to do a tilt table test thing but I haven’t had it for a while. My blood pressure is lower than usual anyway and if it goes even lower, that’s when I have a funny turn.

Si1ver Fri 29-Nov-19 13:25:36

Oh this is really interesting. My husband is epileptic and has clonic tonic seizures which are medicated. In recent years he's had a couple of episodes which are exactly as your daughter described, however his neurologist said they're not seizures but migraines instead.

Milicentbystander72 Fri 29-Nov-19 13:25:39

Thanks PandasandRabbit. I think I will go back if it goes on for a while again. Annoyingly the Paediatrician we were seeing only just signed her off in September as it had been so long with no incidents.

I'll have to wait ages again.

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AFairlyHardAvocado Fri 29-Nov-19 13:25:54

I was a very anxious child and had a serious car crash two years ago which has unfortunately left me with epilepsy, so I can see both sides of this!

Epilepsy is unbelievably variable and in order to investigate this as a possibility you'll need to lobby your GP to refer you to a neurologist and then lobby the neurologist to do some scans and things like sleep dep studies. It's not something you can get checked for and immediately diagnosed and they will have to rule lots of things out before diagnosing if it is epilepsy.

FWIW her symptoms sound extremely similar to mine when I had terrible anxiety for years and years before the crash and obviously I still struggle with it since. It's all consuming and is absolutely a physical experience. Beta blockers work well for me, again you need to see a GP for that.

If I could suggest one thing it would be to please please please ring the Epilepsy Society - they have a helpline and can talk through options related to young people and investigations, even if you don't have a diagnosis yet. Please ring them as they are unbelievably knowledgable and supportive.

Whatever is going on I'm sorry that DD is having a rough time thanks

AFairlyHardAvocado Fri 29-Nov-19 13:28:19

Sorry meant to say - you will need to chase a LOT so be prepared for this.

My epilepsy is currently pretty awful as caused by such a big head trauma and I still have to chase everyone for everything.

They are just so understaffed with such limited resources. I can't imagine how stressful their jobs are.

But once you're in the system and (if needed) have a neurologist with a secretary you can chase directly it gets a little easier.

Milicentbystander72 Fri 29-Nov-19 13:28:53

Interesting S1lver.

Whatever they are I'm not too worried (we'll not as worried as I was last year when I had no idea if she was dying of some horrible brain problem or not!). However they do impact her life a bit if they go on as they make her cautious.

I think I may make another GO appointment and go from there (again).

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OakTreeLeaves Fri 29-Nov-19 13:28:58

I had similar experiences related to my migraines when they got worse last year. I had visions/hallucinations, odd feelings etc, completely out of the blue as I have never had anything like that before. I was sent for an EEG to rule out epilepsy, and an MRI which were both thankfully clear. Has your DD had any of these?

My symptoms have almost gone away once my migraines improved, so must have been linked, although my neurologist hadn't come across it before. I think it was an odd aura. I did find a few similar stories online, as well as here on MN.

Milicentbystander72 Fri 29-Nov-19 13:31:08

That's very helpful Afairyhardavocado thanks. I will give them a call.

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Milicentbystander72 Fri 29-Nov-19 13:31:38

Fairly! Not Fairy sorry.

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Milicentbystander72 Fri 29-Nov-19 13:35:50

Oaktreeleaves, yes it's tricky. Confusingly she woke up this morning with a small migraine (ie manageable and not an in-bed one). Makes me wonder if they are auras before a migraine, however sometimes she gets them after a migraine too.

Or they could be separate?

The Paediatrician we saw said he would do an EEC test but wouldn't yet as he said it's extremely hard to diagnose epilepsy this way. As she's been well for nearly a year now he took it no further. He said he thought more anxiety/panic than seizures.

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Winkywoop Fri 29-Nov-19 13:35:56

I have just skimmed through quickly on my break - I can't see you've mentioned blood tests anywhere.

I get lots of deja vu when my vitamin b12/folate levels are very low, as well as a sort of out of body experience type feeling. Once I have injections of b12 I am right as rain!

If blood tests havent been done, would recommend a full set of bloods in case of anything underlying like that.

I would also recommend not putting too much emphasis at least until those results on any sort of non epileptic seizures or dissociative disorders as it could make it worse

Milicentbystander72 Fri 29-Nov-19 13:38:52

No she's not had a blood test. Interesting.

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Shoebedoo Fri 29-Nov-19 13:53:46

I would also keep a food diary and see if there's a pattern to see if certain foods are triggering her to have an attack/migraine that she could be intolerant or allergic to! A neighbour of mine when he was a teenager he started getting mini seizures after he'd eaten dairy products!

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