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.

I can have a conversation with my dh when he's having seizure, but he is unorganised in thinking with poor memory. His seizures are in frequent and slightly different every time. Seizures can be very different they aren't all the classic tonic clonic.

I'd definitely push for a referral. My dh's didn't appear until early 20s. He has a cavernous angioma and they are related to that. At one point he was told he was making them up or was on drugs. They are difficult to diagnose without diagnostics. That bit is expensive and easier to access via the nhs.
He had to spend a few days in a place in Buckinghamshire at a specialist centre (epilepsy society) having lots of tests (24hr eeg, MRI plus other stuff).

@notveryexpressive

So this could be epileptic seizures, non epileptic (pseudoseizures) or something else.

Absence seizures do not typically last minutes and this points to non epileptic (conversion disorder/psychiatric) seizures.

20% of attendances at neurological clinics are for psychologically induced symptoms (seizures, odd sensory symptoms, weakness).

Can you check her internet history to see if she's been reading about absence seizures online? Does she have epileptic friends? She could be consciously or consciously imitating.

Has she been under any stress recently?

Get a referral to neurology but don't panic and don't convince yourself she's epileptic, especially as a doctor has already suggested it's psychological.

She does have one friend who was epileptic when they were small. This friend is who was with her when it happened and had the wherewithal to video it, but she has never seen this friend have a seizure and she hasn’t been Googling anything like that that I know of but I will check. I’m not ruling out the psychological issues at all, I just am also reluctant to rule out a neurological cause at the same time if that makes sense?

I was diagnosed with epilepsy (focal aware) earlier this year. I asked my GP to refer me to local private hospital as knew the NHS route would take ages. Cost around £1200 for appointments and tests (MRI / EEG) as we don’t have health insurance. I’ve finally had NHS referral after being on medication for 2months (would have cancelled but consultant said to get a second opinion) which was over the phone. She agreed with diagnosis and I’m now in NHS care (with original private consultant ).
Well worth paying privately (if you can afford to) as diagnosis & therefore medication is much, much quicker.
Hope you get answers soon.

I have had absence seizures in the past but they last 10 seconds at the absolute most and I am aware they are happening.

Simply standing and staring for 40 minutes without moving is not typical. Maybe I have understood but that seems to be what you implied happened?

I have had a focal seizure before which lasted about 20 minutes but during that time I was walking around, and just generally doing odd things, was confused and disorientated, and although I was talking to people I was very erratic in terms of how I was responding to their questions.

Definitely sounds like epilepsy, my family member had similar episodes. Unfortunately with doctors sometimes they make mistakes and you have to be forceful in advocating for your daughter. Book another appointment and say you want a referral to neurology. If they try to deny the request, just state again her symptoms, your worries, and say you're just going to keep booking appointments until they sort it so they might as well do it now.

This does sound like it could be an extreme form of disassociation. The episode in the shower sounds very familiar and I used to experience this. I would completely lose consciousness though and have a 'seizure' It was a panic reaction to not feeling well sometimes or when under extreme stress or adrenaline. Sometimes triggered by hormones and dehydration. . My body shutting down from extreme stress. If this is the case. Learning that its not anything 'dangerous' and she can and will recover can be enough to stop the episodes. Obviously CBT and possibly other medications might help het too.

Poor her. I was going to say I saw a neurologist privately in Bristol who was both nhs and private and that's not that far for you but someone has given you something closer :)

I had mri and 2 eegs (sleep deprived as well as 'normal'). My results were inconclusive - mri clean though. They have stopped investigating but I have the option of medication which is indicated for both epilepsy and off label anxiety which I choose not to take as my 'episodes' are minor - less than a minute and few and far between. They started as a teen then stopped then restarted in my 40s so hormonal causes suggested. May be worth tracking against her periods.

Good luck and do advocate for her as you are doing. I got told 'just' panic attacks and as an anxiety sufferer that is an easy place to go first and may be the right answer but other causes need checking. My neurologist was not happy with my gp for not referring me until I pushed and went private.

I should add that I am in no way a medical professional !! I hope she feels better soon.

If it happens again before the gp visit can you video it the whole thing get her whole body and face in they will be able to pick up things in the video like muscle twitches pupils changing size that we may not see as we are not trained
This must be so scary fir you and hope she gets the right help xx

It sounds like dissociation to me too. When I get bad then I literally freeze and stare into the distance. Lose all concept of time, can't move, can't hear properly. There's nothing neurologically wrong with me, it's psychiatric.

@ThornAmongstRoses

I have had absence seizures in the past but they last 10 seconds at the absolute most and I am aware they are happening.

Simply standing and staring for 40 minutes without moving is not typical. Maybe I have understood but that seems to be what you implied happened?

I have had a focal seizure before which lasted about 20 minutes but during that time I was walking around, and just generally doing odd things, was confused and disorientated, and although I was talking to people I was very erratic in terms of how I was responding to their questions.

She was just sitting in the sixth form lounge with her friends when she ‘went away’ is how they described it. She didn’t talk for about 10 mins and after that would respond but very clearly not with it, twitching and jerking. Her head was nodding slightly. She just seems drowsy and confused but was talking for some of it.

@WantStickyBean

It sounds like dissociation to me too. When I get bad then I literally freeze and stare into the distance. Lose all concept of time, can't move, can't hear properly. There's nothing neurologically wrong with me, it's psychiatric.

I’m absolutely not ruling that out, and she does have anxiety so it could well be related. I just don’t want to assume it’s that and miss something else. To be honest my biggest fear is she has a brain tumour or something, and that is scaring the hell out of me.

Doesn't sound like absence seizures at all, more like dissociation that people get with anxiety. Blanking out 4 songs isn't an absence seizure.

You didn't comment on whether she's under stress at the moment?

My cousin has non epileptic seizures. She's the quietest kid you could meet and hates attention. Non epileptic seizures aren't faked or put on, they're sub consciously triggered by stress and anxiety and the person isn't aware that they aren't neurological.

@berryhead2013

If it happens again before the gp visit can you video it the whole thing get her whole body and face in they will be able to pick up things in the video like muscle twitches pupils changing size that we may not see as we are not trained This must be so scary fir you and hope she gets the right help xx

Yes that’s what I’m attempting to do, I just need it to happen when im around. I mean I hope it never happens agsin, but you know what I mean.

You need the doctors to rule out epileptic seizures in the first instance and go from there.

Brain tumours are vanishes rare in kids. Non epileptic seizures/conversion symptoms in anxious kids are relatively common.

*vanishingly

@notveryexpressive

Doesn't sound like absence seizures at all, more like dissociation that people get with anxiety. Blanking out 4 songs isn't an absence seizure.

You didn't comment on whether she's under stress at the moment?

My cousin has non epileptic seizures. She's the quietest kid you could meet and hates attention. Non epileptic seizures aren't faked or put on, they're sub consciously triggered by stress and anxiety and the person isn't aware that they aren't neurological.

Sorry, I missed that question. Nothing new stresswise. If anything less stress she’s just completed her first year of A levels with really great grades. But she is an anxious personality I don’t deny that. Focal seizure was what one friend suggested, is that the same as abscence?

@notveryexpressive

You need the doctors to rule out epileptic seizures in the first instance and go from there.

Brain tumours are vanishes rare in kids. Non epileptic seizures/conversion symptoms in anxious kids are relatively common.

I know statistically it’s unlikely, but that fear isn’t rational when it’s out of the blue like this.

Seizure classification is complex and there are many different phrases/ways of organising them. A neurologist is the only person that can say for sure by looking at a video and maybe doing an EEG.

But what you've described isn't typical for any particular seizure pattern and that's why the locum GP suspected a psychological cause.

Just don't let people scare you that she's got epilepsy unless it's proven.

What you’ve described sounds like what my husband experienced for a few years starting in his late teens. His doctor also put it down to panic attacks … until one day he had a ‘big’ seizure and they realised they his ‘panic attacks’ were actually ‘small’ seizures.

(I’m really sorry, I know they’re not called big seizures/ small seizures but I’m not certain of the proper terminology and I don’t want to guess).

I think part of the reason why they might be Mis-diagnosed as panic attacks is because of how difficult patients find it to explain exactly what happens/ how they feel during the episode.

I’m sure you already have but, if not, do write down as many details of each episode as she can recall. There are apps designed specifically for recording epilepsy symptoms and that might help guide her in terms of what to record.

Try also to record other factors in case you can look back and spot some pattern- was it hot, was she feeling stressed or tired, etc.

I think its unlikely that a focal seizure would last for more than a few minutes? I would say if you are concerned its something neurological and it lasts for more than a few minutes or happens in a cluster (one after the other) id call an ambulance. At least they would investigate enough to put your mind at rest?

Has she had any other symptoms?

severe, persistent headaches
persistent nausea, vomiting and drowsiness
mental or behavioural changes, such as memory problems or changes in personality
progressive weakness or paralysis on one side of the body, vision problems, or speech problems

@ViaRia

What you’ve described sounds like what my husband experienced for a few years starting in his late teens. His doctor also put it down to panic attacks … until one day he had a ‘big’ seizure and they realised they his ‘panic attacks’ were actually ‘small’ seizures.

(I’m really sorry, I know they’re not called big seizures/ small seizures but I’m not certain of the proper terminology and I don’t want to guess).

I think part of the reason why they might be Mis-diagnosed as panic attacks is because of how difficult patients find it to explain exactly what happens/ how they feel during the episode.

I’m sure you already have but, if not, do write down as many details of each episode as she can recall. There are apps designed specifically for recording epilepsy symptoms and that might help guide her in terms of what to record.

Try also to record other factors in case you can look back and spot some pattern- was it hot, was she feeling stressed or tired, etc.

I’ll definitely get an app thanks. X

@user1490814754

I think its unlikely that a focal seizure would last for more than a few minutes? I would say if you are concerned its something neurological and it lasts for more than a few minutes or happens in a cluster (one after the other) id call an ambulance. At least they would investigate enough to put your mind at rest?

Well this is another issue that I’m not particularly impressed that the school didn’t do that. I had a phone call to say she had a funny turn, 20 mins into it. But yes if it happens here and I catch it I’ll be ringing 999 for sure.

@user1490814754

Has she had any other symptoms?

severe, persistent headaches
persistent nausea, vomiting and drowsiness
mental or behavioural changes, such as memory problems or changes in personality
progressive weakness or paralysis on one side of the body, vision problems, or speech problems

No nothing like that. Everything has been entirely normal until Monday.