and it was all going so well...

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Cherriuz

New
Messages
304
Reaction score
0
Points
0
ended up on medical assessment Wednesday night because I kept having seizures. I missed my sons first day at school. needless to say I feel like the worst parent in the world.
the hospital spoke to an epilepsy nurse specialist after they spoke to me and decided lack of sleep was the problem and to up the dose. it says to ring and see said nurse but I'm seeing my Neuro next month anyways so I'll hold out and see what my GP thinks when I see her next week.
needless to say I'm gutted. 2 months was my best run yet. but hey
it gives Me something to beat this time!
 
Cherriuz,
Sorry to see that you had a seizure on again on Wednesday.It must be hard that you missed your little boys 1st day of school but you are not a bad parent.
It is good that you went 2 months stress free but it is always hard when we do have seizures after going that long seizure free. All you can do is aim to go 3 months seizure free next time.

I hope you don't have too many more seizures before your appt with the neurologist next month.
 
The epilepsy nurse, I hate, sorry to say. I hope things get better quick for you and you are not the worse parent in the world.
 
I hope things get better, sorry this happened and you're not the worst parent, it couldn't be helped. And no matter when things start, when you do something for yourself or with someone else such as seeing your child off to school the first time, it's the first time and when you see your child off to school tomorrow or whenever, for you and him, it'll be his first day that you experience together. You're going to have lots of firsts with him so the important thing is to look forward to them.

And it's most important that you get plenty of sleep, if lack of sleep induces seizures, then it's more important to get more rest
 
Thank you all.
My other half did take a picture of him going in, and i got home in time to pick him up, so I'm pretty okay. Kinda feel sorry for the nurse in the majors who had to deal with me crying my heart out with no idea why i was even crying. But she was lovely and just hugged me.

Ive never seen an epilepsy nurse, but if i can avoid it, i shall! Im sure she cant do anything that my neuro cant do next month - im sure the er wouldnt know im due to see her again though... or maybe they do.... who knows.

I feel like rubbish today. slept for a good 15hours and im still tired, but partner had to go work today we cant really afford him to have time off - I only have to stay up a couple of hours till our 4 and 5 year olds go to bed, then i can go back to sleeeeeeep!

I did find even though there is a diagnosis, because of the whole 1 half hour eeg i had coming back clear, some nurses were really, you know, empathetic. and some were like. well meh, your test came back clear so whatever. Which i found kind of odd, surely its not up to them to decide? But whatever. Later on im going to have to poke my partner and try and piece things together to type up for the neuro.

Still not really with it today, my heads off in world of its own - i clearly need black coffee, but im not sure its the best idea ever to keep myself awake right now.

I'm kind of mumbling on right now - hahaha!
 
hi cherriuz,
may I ask why you'd like to avoid an epilepsy nurse? bad experience before?
 
Sorry to hear about the seizures, Cherriuz. You are not the worst parent at all, in fact your lack of sleep is probably a sign that you are an excellent parent, putting your own needs after those of your family (not a good idea though, moms need to take care of themselves too!) And I agree with Angel that when you do see your children off to school it will still be a special first for you :)
 
Last edited:
Hi Cherriuz -- so sorry you had a seizure after a long run, and also missed seeing the little one off to school.

Listen to your body, and if it's telling you to sleep, then sleep. I think it takes awhile to recover from some of the nasty seizures. We try to keep our little guy at home where he can rest as much as he needs to on the day after a seizure. Of course, that's getting a bit hard to do when he's having them every night lately.

A clear 1/2 hour EEG --especially if taken in daytime - is meaningless. Our son has severe tonics and tonic clonics, and the only time his EEG shows anything is when he's actually having a seizure.
 
q. no not at all. intact I have never seen one. a few people have said to me they hate them now. what exactly do they do?
thanks all. I'm feeling okay today. I have slept for England for the past couple of nights. time to pick myself up and start again!
 
got a letter off my Neuro today. she wants to see me about my recent hospital visit. I've not Had an actual diagnosis yet. just a probable one. she wants to see me.....this Thursday. argh!!!! I swear that woman just makes space where there isn't any. very nervous. but at least I dont have to spend ages getting myself worked up about it during the wait. I mean. Thursday will be here before I know it. better get myself prepared!
 
q. no not at all. intact I have never seen one. a few people have said to me they hate them now. what exactly do they do?
thanks all. I'm feeling okay today. I have slept for England for the past couple of nights. time to pick myself up and start again!

More like what don't they do? It's awesome.
They're basically the specialists' right arm- of course we know we can't phone the doctor whenever we are worried or have questions, but you can with her. They help set up appointments, answer any questions, help prepare you for procedures you're terrified of, very fear-calming. They're the middle man between you and the doc. Any time I need to know something I quickly email or phone her, if she can't answer it herself she goes to the doc and has an answer to me within hours, anything from hospital visits to driving to meds to...
My guess is if someone doesn't like their nurse it's more the personality of that nurse rather than the actual job position.
 
q. no not at all. intact I have never seen one. a few people have said to me they hate them now. what exactly do they do?
thanks all. I'm feeling okay today. I have slept for England for the past couple of nights. time to pick myself up and start again!

I have had an epilepsy nurse for the last 2 years & she is fantastic.
When I was going through my pre surgery tests my epilepsy nurse was the one who booked me in for all the required tests I had to have. My Mum & I live approx 3 -4 hours each way from the hospital so each time I went for my pre surgery tests I had to stay overnight so the epilepsy nurse would arrange accommodation for my Mum & I at the hospitals medi hotel (which was right near the hospital).

After I had my surgery the epilepsy nurse kept in regular contact with me making sure I was ok & everything was going well.
It's 18 months after my surgery s I don't have to have tests anymore & I just go to the epilepsy clinic at the hospital for regular follow up appts with the neurologist & neuropsych.
When I have my follow up appts we go to the hospital & back home in the day but I always make time to go up to see my epilepsy nurse to have a chat with her. I don't have a direct contact number for the neurologist I see at the epilepsy clinic so if I have any queries about my meds or I was to have a seizure I just have to get in contact with my epilepsy nurse or my neuropsych & they will speak to the neurologist then get straight back to me.
 
Last edited:
got a letter off my Neuro today. she wants to see me about my recent hospital visit. I've not Had an actual diagnosis yet. just a probable one. she wants to see me.....this Thursday. argh!!!! I swear that woman just makes space where there isn't any. very nervous. but at least I dont have to spend ages getting myself worked up about it during the wait. I mean. Thursday will be here before I know it. better get myself prepared!
That is good that your neurologist was able to get you in to see them quicker. I hope the appt goes well. I know it's hard but try not to stress or get yourself to worked up about your appt as we all know stress isn't good for our seizures.

I have to go to the epilepsy clinic Tomorrow for my 18 month follow up appt with the Neurologist & Neuropsych. The last time I saw the Neurologist was in March & he started to reduce my meds so I am thinking he will reduce them more as I had no problems with my last med change.
 
Last edited:
Back
Top Bottom