Epilepsy or 'just an anxiety attack' ???

[OldLace]

My 15 yr old has Autism. He gets anxious.

As an 8 yr old he was on a school trip and 'felt odd' asked to sit down teacher said no, and he fell to the floor, writhed around and vomited. (we found out most of this much later)

Fast forward to last 2 years. He's been having a bad time at school. cutting himself (mildly). He is run down, exhausted. Seen GP about it who advises 'watchful waiting'.
However I've observed his 'twitches' getting out of control, to the point he looks like he might be 'fitting' to me. He had an episode on the kitchen floor recently where I had to put a pillow under him and put him in the recovery position and wait for it to end.
School sent him home 4 times in the week before lockdown and told me 'not to bring him back until it was sorted'. At one point he'd had an 'episode' which had lasted over an hour and they said he was disorientated, unable to stand/sit and hitting his limbs / head as he writhed around on the floor. They said they couldnt keep him safe. The first aider asked if he had Epilepsy as he was rhythmically jerking into the foetal position and bit his lip open, was glassy eyed and exhausted (he can sleep for hours after an attack). This escalated quite quickly over the last few weeks (not Covid-worry related tho)

The GP thinks it is 'just a panic attack'.He says that epilepsy onset is highly unusual in teens and that is is 'just anxiety attacks'.
I appreciate that they can look (and feel!) really bad, but I am concerned that it might be more too?

[Ikeameatballs]

The episode when he was 8 sounds much more like a faint/near faint/vaso-vagal episode than a seizure.

The more recent episodes also do not sound like epilepsy to me, seizures that go for that long would usually require significant hospital treatment to stop them rather than self-resolving. However, I can see why you are concerned. You are unlikely to get a clear answer right now due to cutting of non-urgent health appointments but it is still worth asking your GP to refer to your local Paediatrician with an interest in epilepsy. They may be able to offer you a telephone consult and, if you can video any episodes this would help. They may have an email address you could send a video too to help with the telephone consult.

[OldLace]

thanks for replying ikeameatballs

the first one was a bit random, but paramedics were called at the time
and told me to 'keep a sharp eye'.

He does have ASD related 'tics' so gets very jittery / flails his arms when stressed. But the episodes I have seen are different. He seems to get little warning, falls down, crunches in, bites lips /tongue etc
The really long one was at school and they 'didnt have many staff around' (after school drama club). They said it was cyclical but that he didnt know where he was and was frightened.

The GP said he will 'run it past the neuro dept at the local hospital but he is sure it is just panic'. Whatever it is, it is badly affecting him atm.

[OldLace]

bump.
I appreciate that no one can give me medical advice, I just wondered if anyone else had any thoughts?

[BigGee]

It sounds neurological to me, and I have epilepsy. I can only suggest you ask for a referral to a neurologist for further tests. I had an MRI scan first to rule out anything like a tumour, then a couple of EEGs, including a sleep deprived one. Keep a thorough record of all incidents, including how he was before, exactly what happened, how long it lasted, how long he was confused afterwards, basically everything. They'll need to see that in order to know which direction to investigate in. But this needs investigating. It may well be something triggered by puberty, he's at just the right age for the hormones to go crazy, which may mean he leaves it behind, but as he had something akin to it at just 8, it may well be a lifelong situation. The sooner you know, the better. If it is epilepsy and he remains untreated and subject to seizures, his brain will be damaged each time the seizure activity is triggered. If it's not epilepsy, it still sounds like he needs help, and quickly.

[OldLace]

@BigGee - thank you, that is very helpful

I think that is my feeling - whatever it is, it caused School to say they 'cannot keep him safe' and sent him home for a week, and I would be reluctant for him to travel alone on public transport (in ordinary times) for fear he will have another one there (he has had before and friends rallied round) so it is already limiting for him and needs looked at.

I was a bit concerned at the GP rather dismissively saying: 'just an anxiety attack' and prescribing talking therapy. I am an NHS trained CBT therapist myself so both my ds and I are familiar with those techniques but he says: 'when it comes on Mum I dont get much warning and I cant stop it, and its not like when I feel anxious, that is different'. So I am worried that the ASD / anxiety may be a false flag?

[willowpatterns]

Can you speak to a different GP?

[Egghead68]

Hi - it doesn’t sound like epilepsy as the episodes are going on far too long for a non-serious epileptic seizure, as a PP said.
I think mental health treatment via CAMHS would be appropriate but they may want a diagnosis of epilepsy ruled out first. Do video the episodes, as a PP said, and make sure your son is safe during them. Try not to inadvertently “reinforce” them in anyway - just deal with them calmly with a minimum of fuss.

[Egghead68]

It would also be helpful to keep a diary of the episodes. This website has some information about “non-epileptic” attacks, which might be another possibility to think about as well as epilepsy:
www.nonepilepticattackdisorder.org.uk/non-epileptic-attack-disorder/

[OldLace]

@Egghead68 - yes I have a couple of short video clips. Sent to GP

Yy re inadvertent 'reinforcing' - (mind, I had those comments prior to his ASD diagnosis and he had ASD anyway) but Yes I agree - important not to 'reinforce' anything - exH and Dd are both mild hypochondriacs and it certainly doesnt help to reinforce anything!

None of the episodes last more than a few minutes, but the long one at school was 'cyclical' apparently - and the adults who witnessed it were very spooked. We have an appointment with his Psych (he was given Promethazine via Caamhs to help with sleep (and worrying just prior to sleep) so therefore was not discharged after ASD dx and still has yearly reviews with Psych as on those meds - I will certainly mention to Psych but frustratingly cant 'show' anyone the short film clip & GP doesnt seem able to download the email attachment I sent)
Our local (very rural) GP is open 1 day / wk atm and not seeing anyone - correctly - as the NHS has bigger matters to deal with atm.

I will look at the non-epileptic attack info, thank you. x

[Egghead68]

That all sounds good. If there are some much shorter attacks too he definitely needs to be seen by a paediatrician/child neurologist (or at least they could review the videos remotely).
Good luck - I hope your son gets the help he needs.

[Egghead68]

P.S. if you are in London or can afford private Prof Helen Cross at Great Ormond Street might be a good person to see.

[stepbackfromthecircles]

I have always had to educate my GPs on epilepsy ☹️ Being dismissed is totally normal unless you have a really good one. Ask for a referral to a neurologist to know one way or another. Good luck!

[Friendsofmine]

Non epileptic attack or psychogenic or functional seizures are all names for the same psychological problem whereby someone's brain mimics electrical seizures. It is not conscious or deliberate and very debilitating.

CAMHS are variable in their knowledge of this. We are only recently establishing adult diagnostic and treatment centres for this in the UK.

[Katrinawaves]

I’m going to disagree with some others on here. My DD has non verbal autism and her first epileptic seizure coincided with the onset of puberty which the neurologist said is very very common. So first of all I disagree with your doctor saying that it would be unusual to come on in his teens. I also have a friend whose first seizure was in his 30’s - epilepsy can strike at any point.

Second, the paramedics who were present during the long episode saw his presentation and thought it was stereotypical epilepsy. I’d trust their judgment over a GP who hasn’t seen him. I doubt he had a single seizure lasting over an hour but it wouldn’t surprise me (and this has happened to my own child) if he had 2 or 3 seizures within that period, and the remainder of the time he was having post ictal symptoms which with my DD would mean loose and floppy limbs and inability to focus.

I’d push for a referral to neuro and an EEG. The fact he has some warning that the attacks are coming is also a sign that this could be epilepsy rather than a vasovagal seizure or a panic attack.

[Katrinawaves]

Also to add that phenergan can lower someone’s seizure threshold so it would be good to get some advice on whether he should continue to take this whilst he is being evaluated.

[Seekingwellness]

I've found this thread interesting thanks as my daughter has started developing seizures (age 10) and consultant thinks they're linked to anxiety. The look like epileptic seizures so the info posted on here has been eye opening as I didn't realise there were non epileptic seizures.

I hope your son gets some answers soon. We're waiting for an EEG but with the current situation it may be some time now before it happens. I've managed to film two seizures so will find out how to send them to her consultant.

[goldpartyhat]

All I advise is that you push very hard for a neurology appointment for an EEG (May have to be 24 hour one) to see if this is epileptic activity.

The GP is a dick. Epilepsy is more common in people with ASD and epilepsy often starts at puberty because the brain undergoes and massive rewiring and pruning of nerve pathways, then.

[goldpartyhat]

All I advise is that you push very hard for a neurology appointment for an EEG (May have to be 24 hour one) to see if this is epileptic activity.

The GP is a dick. Epilepsy is more common in people with ASD and epilepsy often starts at puberty because the brain undergoes and massive rewiring and pruning of nerve pathways, then.

[PlanDeRaccordement]

No matter what is causing these episodes, only a neurologist will be able to get to the bottom of it. You really need a referral to one and tests carried out. There are many types of seizures and a variety of causes. For example, head injuries can cause non epileptic seizures to start due to disrupting the vascular system between brain and spine. So make sure that the neurologist gets ALL his medical history not just a list of his diagnosed conditions.

[PlanDeRaccordement]

“Non epileptic attack or psychogenic or functional seizures are all names for the same psychological problem whereby someone's brain mimics electrical seizures. It is not conscious or deliberate and very debilitating.“

Not exactly. Functional/non epileptic seizures is interchangeable but what you described is only one sub-category the psychogenic or psychologically caused ones.

There are also Functional/non epileptic seizures are not psychological in nature. They are physiological or caused by physical reasons such as a head injury disrupting the spinal/cranial fluid vascular system example I posted above. Other causes are related to blood flow to the brain and linked to high or low blood pressure. I had nonepileptic seizures in pregnancy due to my baby’s growth putting pressure on a major artery which blocked blood flow from going back up from my legs to my heart and brain. These were physiological functional seizures. Zero to do with psychology. 100% caused by a physical reason.
fndhope.org/fnd-guide/symptoms/seizures/

[OldLace]

I just wanted to say a big Thank you to everyone who has posted
(and I am also glad it has been helpful to others)

I am still waiting to hear back from the GP (was to be last Mon) but he said he'd 'run it by' the local Neuro dept (not v local) and I imagine everything non Covid is slowed right down atm. (plus GP has gone from being open 5 days a week to 1 day, so no point calling and chasing as the number just gives Covid advice atm)
I am not really wanting to leave him alone in case he has another attack, I guess that is possible atm but I certainly would like this looked at properly before schools go back and I will push for that.

I have experience of his ASD being written off by 1 GP (and then Caamhs) before we moved area and he was referred by School in his very first term and given a multi-professional Dx shortly after as it 'was so obvious' so I know that sometimes things can be missed by professionals. Equally, I dont want him taking meds / not being able to drive etc if it is not epilepsy related. We need to know for sure.

[goldpartyhat]

Please film it if you can if it happens again. This is gold dust to a neurologist

[OldLace]

Well, I had an unexpected long chat to ds last night.
He is quite clear that he has panic attacks: hyperventilating, an overwhelming sense of fear, and that he can control these to a certain extent with CBT techniques.
He is also clear that he has 'other episodes - I get a little foreshadowing and try to compress it but this makes it worse' . I quite quickly start violently twitching and these increase in intensity and are 'very painful, all over, like electricity' - it hurts more than when i broke my wrist. He says he is 'not afraid in general but angry it is happening again but I do hate the pain'.
He then hits his limbs and head off things then does 'curled up spasms', - it hurts, all over but esp my head, I dont always know where i am / how long it lasts and when it stops (quite quickly) I really have to reorient myself - after I am sore all over I need to sleep for a whole day but the build up of pressure is gone until the next time. Sometimes it overlaps a bit with a panic attack but its usually completely separate, all the things are different'

I have some film clips (that the GP doesnt seem to want to see)
I will press for a referral to neuro.

[Friendsofmine]

Best of luck. It is a highly specialist area and video telemetry is the gold standard diagnostic assessment not EEG alone.

[Egghead68]

He could try using a “grounding technique” when he thinks a seizure might be coming on. They won’t do any harm and, depending on the nature of the episode, can sometimes stop it from developing.
Examples of these techniques are:

• sucking something strongly flavoured, like an extra-strong mint
  
• rubbing something with a rough texture e.g. a piece of clothing or washing up sponge
  
• doing the 5-4-3-2–1 exercise (saying 5 things you can see, 4 things you can touch (and touch them), 3 things you can hear, 2 things you can smell, or like to smell, and then 1 deep breath).