Any neurologists around? Shameless posting for traffic because I’m worried

[Ineedaneurologist]

I’ve changed names as this is very outing to people close to me.
My daughter is 17, 3 times since Monday she’s had these ‘episodes’ where she just stops responding, she’s not talking or looking at you but her eyes are open.
One of these episodes was about 15 mins, the other more like 40 and the one last night 20 or so, the first two were at school, the third at home but she was in the shower so I didn’t know until she was back ‘with it’
I’ve been to the GP with her all three times, the first time they had me see a nurse who said maybe a panic attack. Second time a doctor who said to get blood test done (booked for Monday) and If it happens again to ring 999. Third time today was a doctor who said he think she needs a psychiatric referral as she wouldn’t be aware during a seizure, but a 2 min google shows that to be the case always.

Friends of mine with children with epilepsy have seen the videos her friends took and think it looks like a focal seizure.

I want her to see a neurologist asap, but the private places I’ve contacted want a GP referral to do that. Am I allowed to ask for one? Are they allowed to refuse if they don’t want to give me one?

Some advice would be great because this is scary.

A friend of ours has a form of epilepsy where he is basically paralyzed but aware. These can last up to six hours, its a non seizure type.

He's been told he'll never be able to work and he's only early 20s but had been able to retain his driving license so far as he knows when theyre coming on. What youre describing your dd having sounds very similar.

Absence seizures? Temporal lobe epilepsy?
“ Absence seizures are characterized by staring spells consisting of a motionless stare and the arrest of ongoing mental and motor activity,23 while complex partial temporal lobe seizures manifest an alteration of consciousness accompanied by a staring spell or a tonic deviation of gaze, and associated limbic automatisms...”

My husband had something like this - just spaced out at random intervals. It went undiagnosed as migraines with aura for years despite it not really matching that at all. They are partial frontal lobe “absence” seizures and are well controlled by medication. An MRI didn’t show anything, it was an EEG that got us a diagnosis. Best of luck x

Some interesting responses here that I am sure are of use. I'm not a neurologist, sorry.

What I do know is that there is still actually quite little known about epileptics seizures esp amongst GPS but also amongst neurologists. My relative is epileptic, I have witnessed many many seizures and his neurologist suggested it was psychological.

Absolutely not, no way. 😳

It's also interesting what you say about your daughter being in a confused state and taking to you. My other relative used to do this after she came around from a seizure but still not fully conscious

Thanks everyone, have lots to go on here. So will see where we go.

I think it’s the Nuffield hospital In Clifton, Bristol that do a lot of private clinics. Worth a google?

Hope you find a route to answers OP.

You asked how long my seizures last. They longest has been about 5mins. My brain will just suddenly take itself off into a reoccurring dream / deja vu feeling accompanied by a sweaty / shakey feeling in my body. Before the meds started working, I’d get about 6/8 of them in a row every 10-30mins at its worst.

Have you considered narcolepsy? I knew a girl once who had it and she would appear awake but would have absences like you have described. That might account for the length of the absences?

@BBOA

I think it’s the Nuffield hospital In Clifton, Bristol that do a lot of private clinics. Worth a google?

Thanks I’ll look!

@Katkincake

Hope you find a route to answers OP.

You asked how long my seizures last. They longest has been about 5mins. My brain will just suddenly take itself off into a reoccurring dream / deja vu feeling accompanied by a sweaty / shakey feeling in my body. Before the meds started working, I’d get about 6/8 of them in a row every 10-30mins at its worst.

That sounds very similar to what she is describing to me, that she ‘goes into a day dream’ and her heart beats faster, and she feels tingly and shaky. I did a bit of Googling last night (I know but I couldn’t help myself) and the epilepsy foundation says that whilst long focals are not typical it isn’t outside of the realms of possibility.

@Isthisit22

Have you considered narcolepsy? I knew a girl once who had it and she would appear awake but would have absences like you have described. That might account for the length of the absences?

Her brother has narcolepsy , I think I did say this on another reply but maybe not, and it doesn’t appear like what he experiences but I’m certainly not an expert so I will definitely look into it.

Any news OP? Hope your daughter is ok

Could it be something cardiac related!!

What you’re describing sounds exactly like what I have. Non epileptic seizures. She’ll need an eeg and they can induce a seizure with flashing lights. They’ll have things stuck on her head that’ll see if there’s any peculiar brain activity pointing towards epilepsy or not.

Did you get anywhere op?

@Ineedaneurologist any news op?

I was diagnosed in feb this year after having two tonic clonic seizures and being admitted to hospital. I have a seizure and then I'm "post-octal" (basically a zombie) for 30-60 minutes after, so I'm functioning but not responding.

I also have focal seizures and sounds similar to your daughter. I hope you get some answers soon

This is no help at all, but my partner works in a secondary school and since lockdown 7 girls have developed neurological problems including tics (Tourette’s type) and absent seizures. It’s really quite frightening and the school and the parents are struggling to get any help with it. It seems to be connected to the anxiety caused by the pandemic as it’s unprecedented for so many to have developed this all at the same time.

Any news on your daughter? I came looking for anyone who knew something about catatonia and saw that only one person has suggested that in this thread - this was my first thought. I hope the outcome was positive.

I will post my question in a separate thread - about my friends husband.