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.

The term absence seizure is often, but no, true absence seizures aren’t the same thing as focal seizures. Focal seizures occur in one part of the brain. Absence seizures are a type of generalised epilepsy, ie seizure activity affects the whole brain. They most commonly start at a younger age and tend to be short lived with quick recovery. 15-40 minutes with intermittent talking, confusion and drowsiness is not an absence seizure. It could potentially be a focal seizure but they are also common symptoms for a non-epileptic/dissociative event.

@Katkincake

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.

Can I ask how long your seizures last?

I often ask for private referral letters and have never been turned down. I think it's fine. Good luck

@StillUpholding

The term absence seizure is often, but no, true absence seizures aren’t the same thing as focal seizures. Focal seizures occur in one part of the brain. Absence seizures are a type of generalised epilepsy, ie seizure activity affects the whole brain. They most commonly start at a younger age and tend to be short lived with quick recovery. 15-40 minutes with intermittent talking, confusion and drowsiness is not an absence seizure. It could potentially be a focal seizure but they are also common symptoms for a non-epileptic/dissociative event.

Thank you that’s helpful.

Apologies, seem to have deleted part of my post. Meant to say the term absence seizure is often misused

To be honest my biggest fear is she has a brain tumour or something, and that is scaring the hell out of me.

That's a really scary thing to be worried about . I can't offer any specific advice other than the reassurance that I've been through a whole neurologist work-up with odd symptoms and it didn't show any signs there was something physically wrong.

My concern about using an epilepsy app is you may induce symptoms that weren't there previously if you get her to use it and make her hyper aware of all the symptoms.

She will need a referral from the GP whether private or NHS. This won’t be a problem, your doctor will make one., possibly as urgent. It’s up to you and your daughter what route you take; you may get seen quicker privately in the first instance, but it depends on where you live. Waiting lists in London for example, are horrendous in all specialties. You could get her seen privately at first and then revert to NHS care subsequently. (I am a medical secretary and deal with referrals in my job btw)

I hope your daughter is seen soon; you must be so worried.

I had a friend I grew up with and in his teenage years, while you were talking, he would just freeze. It lasted for a few minutes each time and then would unfreeze and carry on like nothing had happened. At the time I thought he was trying to wind me up but he turned out to have petit Mal seizures. Occasionally we knew it was coming because he'd suddenly start fiddling with his shirt buttons. Both of his parents were GP's so it got dealt with quickly. It usually happened when he was stressed or tired.
I think you're absolutely right to push harder and your daughter needs a referral.

My dd was recently diagnosed with psychosomatic seizures. She'd been hospitalized more than once for the same thing but it is quite difficult to pick up. They do tend to rule out all the possibly physcial reasons first. Her seizures did differ, sometimes just competely passing out, sometimes with jerk motions as in epilepsy and sometimes just a vacant but awake type. Her first one took her 5 hours to come around. It's is very scary and concerning OP so I do understand. She was also 17 when she was diagnosed. It's like a panic attack on steroids, the brain just shuts down. We have had quite a long road, and she had needed a lot of help psychologically. Imo you do need to see a neurologist as the eeg will not pick up this type of seizure as it doesn't affect brain waves. But it needs to be ruled out. She had 3 while hooked up (on the 2nd eeg) so that is when the psychiatrist was consulted.

In the meantime, just in the possibility that this is stress related, if you see it coming on, try to get her to slow count and breathe, and start the look for something blue, think of food that starts with s etc etc. My dd would take a long time to come around from an episode, tired, weak, confused so we had to try stop it before she passed out.

I wish you both good luck and that you have the help and answers soon. X

Sounds like my sister. She had many many episodes like this over many years. She has epilepsy and they have stopped completely now she is on the right medication.

I had a friend who had something similar-sounding to this as a teenager. He eventually outgrew it, but no tests were ever able to establish precisely what it was. In retrospect, he thinks that it was narcolepsy, i.e. that he was asleep during the episodes but with his eyes open. How is her sleep? And does she have any recall at all of the episodes? In narcolepsy I think people do, or at least that seems to be part of the differential diagnosis.

I'm not a doctor but I don't think the psychiatrist route would be a good one to go down right now.

I should add OP we were also in South Wales. She was under the epilepsy unit at UHW who were brilliant. She was referred to London at one point, she went for a week of monitoring and her medication was changed 10 years ago and she's not had a fit since.

Could it be a panic attack? Following a nasty (life-threatening) experience a few years ago, I used to get these. MIne were triggered by certain sounds and I would freeze for 10 minutes or so. Although I was aware I didn't have a sense of time passing, and I could not move.

@notveryexpressive

My concern about using an epilepsy app is you may induce symptoms that weren't there previously if you get her to use it and make her hyper aware of all the symptoms.

I will use it, not her. I’m very much down playing the whole thing to her at the moment anyway because I don’t want to make her more anxious and exacerbate symptoms if it is psychological.

@Thomasina79

She will need a referral from the GP whether private or NHS. This won’t be a problem, your doctor will make one., possibly as urgent. It’s up to you and your daughter what route you take; you may get seen quicker privately in the first instance, but it depends on where you live. Waiting lists in London for example, are horrendous in all specialties. You could get her seen privately at first and then revert to NHS care subsequently. (I am a medical secretary and deal with referrals in my job btw)

I hope your daughter is seen soon; you must be so worried.

Thank you that’s helpful. I appreciate your help.

@isthismylifenow

My dd was recently diagnosed with psychosomatic seizures. She'd been hospitalized more than once for the same thing but it is quite difficult to pick up. They do tend to rule out all the possibly physcial reasons first. Her seizures did differ, sometimes just competely passing out, sometimes with jerk motions as in epilepsy and sometimes just a vacant but awake type. Her first one took her 5 hours to come around. It's is very scary and concerning OP so I do understand. She was also 17 when she was diagnosed. It's like a panic attack on steroids, the brain just shuts down. We have had quite a long road, and she had needed a lot of help psychologically. Imo you do need to see a neurologist as the eeg will not pick up this type of seizure as it doesn't affect brain waves. But it needs to be ruled out. She had 3 while hooked up (on the 2nd eeg) so that is when the psychiatrist was consulted.

In the meantime, just in the possibility that this is stress related, if you see it coming on, try to get her to slow count and breathe, and start the look for something blue, think of food that starts with s etc etc. My dd would take a long time to come around from an episode, tired, weak, confused so we had to try stop it before she passed out.

I wish you both good luck and that you have the help and answers soon. X

Thank you. I hope your daughter is doing well x

@hopsalong

I had a friend who had something similar-sounding to this as a teenager. He eventually outgrew it, but no tests were ever able to establish precisely what it was. In retrospect, he thinks that it was narcolepsy, i.e. that he was asleep during the episodes but with his eyes open. How is her sleep? And does she have any recall at all of the episodes? In narcolepsy I think people do, or at least that seems to be part of the differential diagnosis.

I'm not a doctor but I don't think the psychiatrist route would be a good one to go down right now.

My son actually has narcolepsy and this is not like my experience of that. But I’m no expert in it presenting differently so it’s something to consider.

@Jaxhog

Could it be a panic attack? Following a nasty (life-threatening) experience a few years ago, I used to get these. MIne were triggered by certain sounds and I would freeze for 10 minutes or so. Although I was aware I didn't have a sense of time passing, and I could not move.

I mean possibly? It’s not like any panic attack I’ve ever seen but I’m willing to consider anything at this point!

Great portland street absolutely do not need a GP referral to see your child privately. I've done it twice, both times we ended up in the right NHS national centres of excellence (having previously been misdiagnosed or the appropriate local had previously refused to even assess).

When someone mentioned a lovely paediatric neurologist at Portland street, I already knew who they were referring to. She is incredible.

My DB had very similar episodes and they were diagnosed as focal seizures. I don't want to alarm you but his were caused by a brain tumour. Please push to see a specialist.

If an attack such as you describe happened in school then someone should have arranged for an ambulance imo. Did the students who were with her tell a teacher /supervisor ?

I think a psychiatric diagnosis should only be reached after physiological ones have been tested for and ruled out. Making it a primary diagnosis risks missing some sort of seizure or other neurological cause.

I've also seen too many physical problems misdiagnosed as anxiety stress or psychological. Please do get onto Great Portland Street. Without them DS would never have got the tests (on the NHS) that conclusively proved the cause of his problems was physical and he would still be bouncing around CAMHS totally pointlessly and to his detriment physically, emotionally and financially.
Keep fighting

I wouldn't rule out the psychological route - has gp offered a referral? But I would want epilepsy or physical causes ruled out first - an eeg (probably a longer one rather than a quick snap shot) and scans if necessary. Does she have any other physical symptoms? Absolutely keep a diary and not circumstances around it happening too.

Dr Margeurite Hill, at Sancta Maria saw me without a referral. Not sure of this has changed in the last few years.