Seizures

[worstnightever]

Tonight I am having a cluster of partial seizures - I am undergoing tests for this but not on treatment yet.

I have phoned 111 a few weeks ago and was told there was nothing they could do (pretty rudely) but it is honestly the scariest/most horrible feeling in the world and I want it to end so badly.

I have had a tonic-clonic in the past and I'm terrified it'll happen again. Is there anything I can do to stop the cluster tonight? Would I be unreasonable to phone 111 again or would I be told the same thing?

That sounds awful for you. I would phone 111 again. It will be a different call advisor, hopefully someone with better manners! Let us know how you get on.

I think I'm gonna phone..I can't cope

How long are the seizures lasting? Please call NOW...you may need to get checked over in hospital. Ignore the previous 111 advisor and call again!!

Literally a split second per one but it's happening so often..I'm fully aware what's going on etc but it's the most terrifying feeling

Please call

Please just lay down and try (this sounds stupid but it works for me) to just concentrate on your breathing and keep yourself as calm as you can. They can cluster if you get worked up, I can usually sit on them if I just keep calm. Once you get a gap, phone but don’t forget to keep concentrating on your breathing being nice and regular.

Please call 111 - stay strong OP

I've come out of lurking to plea you to call 999. My son has partial seizures and if they cluster for longer than 20mins it's classed as being in status and we are to call 999 as it's unlikely they will stop and may escalate. I don't want to panic you and I'm sure you will be fine but you need medical attention.
I hope you get things sorted x

Any news OP?

Do you have anyone with you?

I'm too scared to phone I'm so so scared that they'll just think I'm anxious and tbh I have no medical proof that these ARE partial seizures but I KNOW they are it's horrendous I don't know what to do and I'm so scared

I got a grip and phoned . Too scared - waiting on a call back now

Well done! Are the seizures still happening? I hope you don't have to wait too long for the call back x

Still ongoing, a bit of space between them so is that classed as a cluster? I'm unsure - but I tried to 'sleep it off' and it kept happening so the adrenaline just got too much. I hope they can do something, but unfortunately after last experience it just seems as though they will think I'm an idiot

I don't know too much about epilepsy, but this definitely warrants further investigation. The sooner the better! Hoping someone medically trained will also see your post and advise. Hang in there. Nobody will think you're an idiot. I hope you find some relief soon

They were absolutely lovely, but unfortunately they said it all sounds very typical of a "brain thing" such as an aura or possible epilepsy and without a further diagnosis from my specialist there isn't anything they could just give me, as it may make things worse

He recommended just sleep but ugh it's impossible

I don't know anything about seizures, but just wanted to give you a hug, hope you're ok this morning OP.

More hugs your way! Get yourself to the gp asap and keep badgering them until you have answers!

Op, I don’t know if you are officially diagnosed as such but if not and this is classed as your “first” seizure - the NICE guidelines say you have to be seen by a neurologist in 2 weeks. Get to the docs, phone them this morning. This is exactly how mine started and I had a fight for a diagnosis because 111/ general a&e dont always fully partials vs anxiety/panic attacks

Fully understand*

Thank you all so much.

I am not diagnosed yet, I am awaiting the results of tests after a tonic-clonic type seizure and have been having these partial seizures ever since. Like you say - it's so tricky because people think it does sound similar to a panic attack, but I know myself it's feels..strange to describe almost like electric shocks but definitely nothing like a panic attack! (I have had them in the past which is maybe why they assume it is)

I went to the first fit clinic and although they were great and did tests etc, I've heard nothing so far about the results and I am just really being left to try to deal with this..somehow.

I fell asleep which managed to stop it, then woke up feeling good this morning. Got one small shift this afternoon then I'm off for a few days so I hope I can get through it no problems.

Ps. Just been told it sounds like a migraine. Seriously unbelievably fed up - on way to work and feel like crying.

Update: had to go to a&e a few times since this night. Finally have a neurologist appointment next week as the seizures are constant.

Been given diazepam every time I've gone to a&e as a 'rescue drug' but my own GP refuses to prescribe as it is addictive. Therefore I am left with another bad day today, nothing to stop it, and trying not to go back to a&e.

Seriously - it's insane