Anxiety or Epilepsy?

[Milicentbystander72]

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.

Ah, definitely ask for it!

What's her diet like? There are non dietary causes if b12 deficiency, but diet most common.

Could also be thyroid or vitamin d deficiency or plain old anaemia

I have epilepsy, tonic clonic seizures and then sometimes partial seizures which sound very similar to your daughter's.

I would recommend following the food angle - have a look at the ketogenic diet, it's supposed to be really good for juvenile epilepsy and won't do any harm if it isn't epilepsy.

When I moved areas I gave up trying to get an appointment with a neurologist: there are far too few of them and (in my area at least) waiting times are ridiculous. As PP said, be prepared to fight tooth and nail. I instead go private: it's £200 every six months and so much easier. I think it was £300 for the first appointment as that was longer. If you can afford it, I would consider going private.

I could afford private. I'm not rich but would consider it value for money!

I'd still need a referral from the GP though I think. I'm sure if I said I wanted private they would have no problem with that though.

Hi OP, I'm epileptic and my seizures are deja vu types. They're called focal seizures. I also get migraines, and these are very obviously different. I would go back to your gp and ask to be referred to a neurologist for tests. Your daughter will need an MRI and an EEG. Now nothing showed up on my tests originally, but I went for a second EEG, a sleep deprived one, and this finally showed evidence of epilepsy in my temporal lobe. Hope some of this helps.

I get migraines, panic attacks and deja vu episodes and each one is very different.

The deja vu comes on as a feeling everything has happened before, like I've dreamt it before, and then a rush of a feeling that stems from the pit of my stomach and rushes up to my head and then everything is normal again. I only get these episodes a couple of times a year and only when I'm run down or extra tired. I had them a lot as a teenager so maybe hormone related? I think these sound like what your dd is having. I read it could be temporal lope epilepsy but it has never affected me that much and I've never been to the gp about it
I've never had the deja vu with migraines or panic attacks.

She could try filming herself when she is having one to see if she does 'space out' or not?

I'm not sure if you actually need a referral from the GP for private healthcare but they might be able to recommend one in the area.

Kindkeandcake once diagnosed how is it treated? Do you take medication?

Yes, I take medication.

Moonface what you describe as Deja vu is almost exactly how she describes it. It's slightly different every time.

She's never had a 'classic' panic attack (ie fast breathing, heart racing etc) although when the Deja vu's began over a year ago she said they made her breathing faster, like she had to concentrate in breathing, but they've changed a bit in nature.

They happen so quickly it's hard to catch on camera. I don't think dd could do it herself. She had one this morning getting into the car - just a few seconds, staring ahead with blank face (although she says she never loses awareness of where she is)

Have a read about absence seizures too OP they are one of the types of epileptic fits I have fairly regularly. The best description of my face during them is "vacant".

I also have another type that I can only describe as feeling as if I'm about to fall downstairs/ have just gone through a trap door. They feel huge to me but look just like jerks to others.

just a few seconds, staring ahead with blank face (although she says she never loses awareness of where she is)

Yes I wasn't sure if I was staring/blank etc when having them but a while ago I asked my Dd to watch me while I had one, I carried on speaking throughout and she said I looked completely normal, no slurred speech or anything like that. So I'm guessing if it is epilepsy it is only really mild.

Your Dd could be getting faster breathing because she is worried about the episode rather than it being a panic attack. Does she get the 'whoosh' feeling that comes over her? I used to dread it and tense up because they scared me but now I know they last a few seconds and I just 'go with it'.
I'd definitely go back to your GP to try and get a referral/diagnosis for your Dd.

Dd has these, they have never been able to prove one way or the other, she takes anti depressants now and is banned from driving. The only up side (if there is one) is the partial complex seizure diagnosis helped the pip claim ... in a natural optimist

Yes Moonface how you are describing it is almost exactly the words dd uses. She feels a whoosh, sometimes from her stomach and knows it's coming. She feels dread just before and during but then recovers very quickly after it passes - a few seconds. Then she feels a bit drained.

She used to be much more scared of them until the Dr we saw in the hospital says she wasn't dying and they wouldn't kill her (sounds crazy but this reassured her). He then said it's possible epilepsy but hard to diagnose. He concluded that as a professional guess it was anxiety/panic attack.

Considering that since that appt nearly a year ago nothing at all has happened and even her migraines reduced so we both thought he was correct.

Dd not as concerned this morning, more annoyed than anything. It's really me who is trying to ask myself again about epilepsy.

She used to be much more scared of them until the Dr we saw in the hospital says she wasn't dying and they wouldn't kill her (sounds crazy but this reassured her)

Well if it is the same as mine, I've had them for over 30 years and I'm still here

Definitely lack of sleep will bring them on though, so make sure she gets enough sleep - easier said than done with teens!

Hi , I have epilepsy and have had it since I was 10. I specialise in epilepsy , if you want to message me on here I’m happy to chat . But I can see you’ve had a lot of comments on here anyway though . 💐

I have this. It’s temporal lobe epilepsy. Treated with tegretol.

Moon face - you need to get this diagnosed. You need to be 12m seizure free to drive (if you do).

And yes, I get migraines and PA too. Migraines were often in tandem with seizures. PA totally different.

The second I explained the desk vu sensation to the consultant he knew exactly what type of epilepsy I have.

My daughter gets these as well. I have a child with severe epilepsy so knew a lot about the condition and i was concerned they were absense seizures . The thing is an EEG would only pick them up if they were occurring at that exact time so it is hard to know for sure whether they are migraines or seizures.
She can go months with none then has clusters of them which to me suggests they are seizure related! But who knows ?

I have TLE. I have dissociation, an unsettled feeling in my tummy which then becomes a rising feeling and that then leads to my head. It’s similar to going over a hill or a roller coaster. My seizures are simple partials - sensory (odd feelings), visions, auditory, dejavous, jamais vous, sometimes I fee absolute euphoria or absolute dread.

I started this as a child, it was diagnosed as anxiety and vertigo, as the symptoms are similar - and only when I became very stressed once at around 31, I had a tonic clonic and was referred to a neurologist. I have since never had another waking tonic clonic, only sleep ones which are scary for everyone else but not me.

All in all I’ve had 3 seizures that would bE recognised as such by a lay person. I do not take medication as I find the side effects worse than the seizures and I’ve not even had a simple partial now for around 4 years.

I would consider TLE as a possibility but if it is, please do not worry, it barely affects me day to day if I eat and sleep properly x

MoonfaceAndSilky That’s definitely TLE, I’m the same, I may never have known until I had the tonic clonic. I had tests and they never found anything even after sleep tests, it was all done on probability. Take care of yourself, it sounds like you manage it much the same as me x

How long before the migraine pain kicks in is she getting these episodes?

They sound related.

Have a look at the prodrome (aka premonitory) phase of migraine - they can do all sorts to the brain even days before an attack. De ja vu can be a symptom, as can panic, memory problems and a pile of other issues.

I think JAE is what your dd is having from your description. My ds has mitochondrial disease and the genetics and symptoms are related to epilepsy. High doses of certain supplements (levo-carnitine, COQ10, magnesium, Vit D, Omega 3's, B vitamins) were very effective in treating my ds' symptoms (including migraines, CVS and chronic fatigue). These websites have lots of information about mitochondrial disorders:
www.mitoaction.org/
www.umdf.org/
and Dr. Boles is the doctor who treats my ds. His website is quite informative too: molecularmitomd.com/

The most important things are to eat regularly, get LOTS (way more than the average teen) of sleep and a very regular schedule without too many stimulating events.

The anxiety is not unrelated. It's all tied into the autonomic system.

I have temporal lobe epilepsy like a couple of pps and your daughter's symptoms are identical to mine at that age.