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.

[Egghead68]

And yes to keeping a diary and videoing the episodes if there is anything to see.

[Egghead68]

If you can get to London I would try to get an appointment with Helen Cross at GOSH (privately if necessary).

I must confess I haven't RTFT but I think a neurologist would say that your daughter needs ambulatory EEG that captures at least one of these deja vu episodes if she has not had it.

[Gertrudesgarden]

It sounds very like epilepsy. I have temporal lobe epilepsy with partial complex seizures (fully controlled atm with medication).

Does she smack her lips or twiddle her fingers during an episode? Is her memory (short term memory) affected afterwards? Is she confused or slightly bewildered?

Before I knew they were seizures, the only way I could describe them were like I was dropped into a parallel universe - there was my REAL life and there was this other life that I dropped in and out of, both "reels" of film were playing at once and I had absolutely no idea which was real and which was the movie. I actually considered that I might be schizophrenic, the hallucinations were so real. But nope, just epilepsy.

Like a pp, I needed a sleep deprived EEG to show mine properly. There were "disturbances" on the first EEG and so it needed a sleep deprived one to show up.

[BadedasBubbles]

Yes this definitely sounds like a form of epilepsy. Particularly as she has a headache after an attack. For peace of mind can you see private neurologist? As previous poster said, stress and tiredness will bring on more seizures. You really need to act before she sits GCSEs. It is very hard for doctors to diagnose without MRI or EEG. However do start to keep a headache diary and Video record any episodes.

[GlamGiraffe]

I'd say a definite contender for epilepsy of some type. The headach after an episode and the fact she is also a migraine sufferer plus her apparent 'absences' (vague looks')are absolutely a reason to demand a referral.

[Milicentbystander72]

Her migraines are separate as she has them at times without any Deja vu's. She has classic auras like tingling arms, blurred vision etc. This is eased with rest and painkillers. They are however worse when she's anxious.

The Deja vu's often leave her with a headache, but not necessarily a migraine.

[GlamGiraffe]

The whoosh from the stomach upwards is called "gastric rising" I always think it's like you've shaken a bottle of fizzy drink then opened it and at all rushed upwards very suddenly!
After an event I'm left with a crashing headache which is a common feature, this might he mistaken for a migraine in her case?

[GlamGiraffe]

Stress, tiredness, dehydration, poor eating can all trigger epileptic events (I have a rare form of atypical epilepsy). Migraine sufferers are also more prone.
I suffer some type if mini seizure events where I came aware but feel a bit like I am in a bubble, sounds are muffled and I cant take in what people are saying to me although I know they are talking to me and dont necessarily respond normally in these incidents although they are short.
Although I suffer from dhea vu, it's not necessarily associated with this, its thought to he related to tiredness when your brain is trying to catch up with itself, although perhaps she is experiencing an aura, what does it feel like and how long does it ladt? Does she have any other strange feelings?
An EEG should definitely be carried out to rule outxabsence seizures IMO.
Get back to me. [Please tag me so I'm notified though as I wont remember to check back (my epilepsy causes amnesia which is confusing!!)]

[Milicentbystander72]

Thanks again for all your comments.

I think getting a referral to a specialist is going to be the hardest struggle. I had to wait 3 months to see a Paediatrician at the hospital!

I'm going to go back to the GP next week, even a phone convo will do and insist on a referral. I'm happy to go private if they will facilitate that will recommendations etc. I just want to know! I'm sure dd does too.

[ArseDarkly]

Ds says he experiences deja vu a lot - diagnosed with Epilepsy aged 11 he's now 20.

He takes Lamotrigine along with another medication and they control his seizures. Interesting that Lamotrigine is also used as an antidepressant so might be useful for your dd if it turns out to be anxiety rather than epilepsy? I would definitely look at referral to a specialist so she can be clearer what she's dealing with.

[namechanged984630]

Is she distractible during them? I have de ja vu "attacks" as part of a diagnosed anxiety disorder and when I feel one coming on if I look at objects in the room around me it goes. Whereas if I go into myself it gets worse. (Classic anxiety).

[IamPickleRick]

Also sometimes the dejavus is very different, I find mine are linked to memory. If something reminds me of a memory and I start to think about it too much, I start to feel the rising. I can sit on it mostly, but sometimes it’s very nice to “give in” to it and just let the whoosh come. My seizures are not even unpleasant, now I know what they are. Just inconvenient.

[ibuiltahomeforyou]

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

[SofiaAmes]

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

[SofiaAmes]

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.

[TwattingDog]

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.

[IamPickleRick]

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

[IamPickleRick]

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

[flapjackfairy]

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 ?

[RumpoleoftheBaileys]

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.

[RumpoleoftheBaileys]

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

[RumpoleoftheBaileys]

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

[GaaaaarlicBread]

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 . 💐

[MoonfaceAndSilky]

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!

[Milicentbystander72]

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.