TRIGGER WARNING seizures / sick / self harm

Summerjune15

Last night I had a 1 hour 30 minute back to back tonic clonic seizures

I was in and out of tonic clonic seizures whilst being sick for 1 hour 30 minutes (never been sick during seizures before)

Been to the doctors again and just been diagnosed with a migraine disorder to due with my FND

Refereed me to CAMHS and sent me different mental health websites as I have gone back into self harming

I had a EEG done when I had my EEG I only had absent seizures at the time they were non epileptic

Few days later I started having tonic clonic seizures never had an EEG done when discharged from hospital I was sent an appointment with the epilepsy clinic but because I don’t have a signed neurologist they won’t see me

I don’t know if I’m being paranoid or if I do have epileptic seizures as well as non epileptic I just don’t know what to do I tried speaking to my mum she said no don’t worry they can’t turn into epileptic seizures but somethings not right and I know it’s not but as I said it can just be me paranoid or my worries are right I don’t know what to do

Nathan

Summerjune15 wrote: »

Last night I had a 1 hour 30 minute back to back tonic clonic seizures

I was in and out of tonic clonic seizures whilst being sick for 1 hour 30 minutes (never been sick during seizures before)

Been to the doctors again and just been diagnosed with a migraine disorder to due with my FND

Refereed me to CAMHS and sent me different mental health websites as I have gone back into self harming

I had a EEG done when I had my EEG I only had absent seizures at the time they were non epileptic

Few days later I started having tonic clonic seizures never had an EEG done when discharged from hospital I was sent an appointment with the epilepsy clinic but because I don’t have a signed neurologist they won’t see me

I don’t know if I’m being paranoid or if I do have epileptic seizures as well as non epileptic I just don’t know what to do I tried speaking to my mum she said no don’t worry they can’t turn into epileptic seizures but somethings not right and I know it’s not but as I said it can just be me paranoid or my worries are right I don’t know what to do

@Summerjune15 that sounds completely horrendous. First of all, i just want to say you're incredibly strong and brave for getting through those seizures.

Now, secondly, you should 100% have a signed neurologist, and you should be able to go to the epilepsy clinic. There is no doubt at all about that. They wouldn't have sent you an appointment at the epilepsy clinic if they didn't believe it was a possibility. Can I suggest potentially talking to PALS if you've ever heard of them. They can help you to put pressure on the NHS to ensure that you get the support you deserve and aren't being ignored and dismissed. They can also help guide you through issues like health related questions you might have, issues with the NHS care you're being given, or in this case, not being given, and helps you to get more control and autonomy over your own healthcare. Sadly, in so many cases nowadays, the NHS has to be pressured to not dismiss patients, and give them the help they need, and not let them be lost in silly paperwork, like needing a signed neurologist. That's why it's important to have an advocate for you. Pals can help again with that. Show them you were given an appointment after being discharged from hospital, and that the epilepsy clinic refused to see you, and they'll be able to push it for you.

You really aren't being paranoid Summer. I know it sounds cliché to say, but you really aren't. I can only imagine how terrifying those seizures are, and you 100% should be getting it checked out to see if it's epileptic seizures. The NHS as i said is a huge bureaucratic mess, they gave you an appointment, then the appointment clinic, based on nothing but silly paperwork stuff, won't see you. It's another mess, but as i say, PALS can help with that, and can put pressure on both the hospital, and the clinic to get you seen. It's perfectly okay to fear it's more than non epileptic seizures, and it is your RIGHT to be able to get that worry and fear checked out. You are entitled the same as anybody else is to get health concerns checked. It isn't paranoia at all. Please don't doubt yourself Summer. If you feel something isn't right, then it isn't right, and you deserve to be able to get it checked out.

And about the self harm, there isn't any judgement here, but i just wanted to add that it's understandable after everything you've been through, getting to that point. And this is no consolation, but i'll say what i said in support chat a few months back if you remember, that we are all incredibly proud of you here. Not only have you been fighting this, but you also took steps to raise awareness of it. You weren't just surviving, but you were actively fighting back against it, and that is incredible, so well done.

Sian321

Hi @Summerjune15 , thank you so much for this post. It sounds like last night might have been extremely stressful and frightening for you, to have gone through all those seizures and to have this persistent feeling that something's not quite right, but you don't yet have answers. That sounds so intensive and demanding on your body Summerjune, and I wonder how you're feeling today, physically and mentally too?

Was anyone was with you whilst you experienced those seizures yesterday? I'm really glad you've been able to get support from your doctor and to be referred through to CAMHS, though I hear that you don't know where next to tern about your worries of epileptic seizures. You are the expert in yourself, and you deserve to have your experience of your symptoms taken seriously.

Thank you for sharing that you have begun to self-harm again. That sounds really tough Summerjune, and I wonder what kind of thoughts and feeling you typically feel right before you get that urge to SH, and then what it's like afterwards? Everything you're feeling right now is valid.

Further support around SHing can be found here:

https://peerchat.link/ditch_SH
https://peerchat.link/distrACT

We're right here with you to listen.