Really scared my friend is having seizures

[CuriousMama]

A good friend who's early 40s had a seizure a couple of months ago and didn't get medical attention. She's had more since and been told it'll be next year before she'll see a neurologist.

I'm so worried. I just wanted to post and see if anyone else has experienced this?

No, I haven’t experienced that. I have epilepsy so do have seizures, but I’m astounded that she cannot get a referral for 6 months. Has her gp given her any kind of medication at all? Had she stopped driving?

It is actually possible to pay for a private neurologist appointment so as to see someone straightaway. How does she feel about it all?

Thanks for replying. The practice nurse went away on holiday and forgot to refer her. Urgent care were shocked she's waiting so long as she went there yesterday. I want to go to the gp with her. She's very scared as is a single parent with a primary age dc.

She doesn't have money for private care as hasn't worked much since she started having seizures.

She should be referred to see a neurologist within 2 weeks. There absolutely no way she should be waiting until next year.

She needs to go back and see her go/a different gp again.

It could be many things but my cousins friend is in her early 50’s and started having a few black outs/seizures, she put it down to the menopause for a while. However, it turned out to be a brain tumour. It’s really important that your friend gets medical help, seizures really shouldn’t be left. Unfortunately, I know this only too well as we lost our 4 year old niece to a brain tumour.

I've lost 2 friends to brain tumours both in their 40s. They had bad headaches and one blacked out before being diagnosed. No seizures afaik?

I'm fuming at her treatment.

Afternoon really sorry for your loss

She needs to go back to the gp with the NICE guidelines...

pathways.nice.org.uk/pathways/epilepsy#path=view%3A/pathways/epilepsy/diagnosing-and-classifying-epilepsy.xml&content=view-index

It’s totally unacceptable for her to have to wait that long.

I had two seizures when I was in my mid 30s. I was in a public place with a friend when my first one occurred & an ambulance was called. At the hospital I had a further seizure & they did a CT scan to check it wasn't a bleed on the brain. I was referred to a neurologist & the appointment was 3 weeks later. I was diagnosed with epilepsy & it is controlled with medication.

This is the reality of NHS funding cuts. In my area, the wait to see a neurologist is 3 months urgently, a year routinely and even 1 month privately! It's awful and I would hate for a friend or relative to be waiting that long to see someone. I've no idea how we can improve this for patients in the current climate.

Last year I suffered with seizures. I'd have violent ones and absent ones. I'd have several a week but was under a severe amount of stress and severe mental health issues. I was taking all sorts of medications.

I was seen very quickly by neurology in comparison. However, I was in and out of hospital. I'd come out with head injuries.

Luckily, it turned out to not be epilepsy related and was diagnosed with Non-Epileptic Attack Disorder. They said the stress was causing it all. Since I've finally found new medication that works and changed my circumstances massively, I've not had a violent seizure for months now. Still occasionally have absent ones though. Just feels like my brain stops and can't work for a minute or so. I don't realise I have them though.

What I learned from that process though was if someone suffers with a seizure, any longer than five minutes straight they must get emergency medical attention. If they don't self terminate then patients are often given Lorazepam to stop the fitting.

Thanks for all the responses.

The scary thing is she's having them alone. Also she's often alone with her child.

I really hope it isn't serious.

@CuriousMama my husband had a seizure and 3 months later he passed from an inoperable brain stem tumour. Is she being sick? Had headaches? As if so she really needs to go to her gp and stress this. My husband went gp many times but they just thought his symptoms were because he had a hernia it wasn’t until he had a seizure we knew something else was wrong.

I don't know about being sick but has headaches. Am really sorry about your husband Widowodiw

The wait for neurologists is several months around here now, very worrying. If she has another one she should present at A and E and hopefully get at least scanned there to rule out tumours etc. Tumours do present with seizures but not all seizures are due to that of course.

Why didn't she get medical attention for the first one?

Are you in the U.K.? I'm really surprised they aren't investigating multiple seizures out of the blue. I developed epilepsy as an adult, I was referred to a "first fit" clinic after the first, and admitted after the second/third while they did tests.

This is going to sound stupid, but how does she know she is having them, have they been witnessed? I wouldn't have known I had had a seizure, I knew something was wrong but wouldn't have known it was a seizure if DP hadn't been there.

Yes, that's a point, I was admitted via A and E.

Yes they've been witnessed and she's also come round feeling the same when alone.

Why do you think a grown woman wouldn't be seen straight away after the first episode? Your guess is as good as mine as I'd be straight there.