Epilepsy - please help!

[mouldyironingboard]

My adult DD has started having fits again after years of being ok. She was rushed to hospital a few days ago having fits that wouldn't stop and I'm really worried about her. She's continued to have fits in hospital so it isn't under control yet.

What are the implications if they can't control the seizures? Are there any Mumsnetters out there living with uncontrolled epilepsy?

If your epilepsy is controlled do you still have symptoms or side effects from the medication?

I have nothing to add but noticed you've had no replies and, as an adult living with controlled epilepsy (12 years without a fit) I am so so sorry for your DD.

I hope they get it under control soon.

I know a bit about status epilepsy. They obviously need to
A) get control and stop this bunch of seizures (each seizure makes the brain more vulnerable to another seizure but they will be able to stop them)

B) find out why she has had a sudden deterioration. Underlying health problem? Could be anything from a urine infection etc

C) refer to a neuro to develop a plan to go forwards

I'm on Lamictal and symptom free.

I'd be desperately worried if it was my DD so you have my sympathy

I'm also symptom free on lamictal.

How old is she? A friend's daughter started fitting again as she reached puberty, it took a bit of juggling meds then they got on top of it again. Sorry I don't have any in depth knowledge.

I have uncontrolled epilepsy

It much better controlled than ever before but that is with fist gulls of med and a stent

I also have status epilepitus

First do not painic

Medication will take a while to get rebalanced

Which hospital the national in London is great but I hated my consultant there with a passion

You will get great support over on the epilepsy society forum (sorry cant link at the moment)

If you want to pm me any question I will do my best to answer the accurately

Hang in there it's going to be a long road

Sorry fists full

I honestly I have been there and status is horrid had my last one about 4months back

Here

Cabbage thanks on you on there two?

No :)
Used it about 3 yrs ago and not since

Thanks for all the replies.

Cabbage, there doesn't seem to be an under lying health reason but she has been stressed during the past week which may have been a factor. We are pushing for her to see a neurologist tomorrow as nothing seems to happen at weekends in the hospital. Thanks for the info.

Purple, she is 22.

Inneed, she is in St George's, London and I think the neurology department is pretty good (as long as it isn't a weekend).

She is starting to come to terms with the fact she won't be driving for quite a while, which is a shame as she only passed her test a few months ago.

DD seems more stable this evening although she is still having smaller, less violent seizures.

Can anyone tell me how an MRI scan would be carried out in these circumstances?

Midazolam prior to the scan? The Drs will be used to this

NICE guidelines on treating status epilepticus

This really discusses immediate care but its worth a read. Regarding the underlying health issues. I still think this needs exploring. Maybe initial investigation hasn't flagged anything up but she's presumably only had limited tests.

I am on Keppra and have been controlled for 1 yr (9 yrs previously but had to change meds).
Re the MRI. I had loads as my epilepsy was caused by a tumor type growth and they wanted to check it had gone.
If your daughter's is not caused by the same I dont understand why an mri would be the next route for her. An EEG (plugs stuck to your head to read brain waves, also done sleeping) may be what they are thinking? Painless and they can get a trace over a number of hours.
Good luck anyway whatever the next proceedure is.

They will control the seizures - if nothing else a ton of benzodiazepines like midazolam will sort it. But she'll be incredibly sleepy and that obviously is not a long-term plan.

I've never had continuous seizures for as long as your DD but I have had clusters of complex partials that won't let up till I take midazolam.

I had uncontrolled epilepsy for 18 very long months and it was hard work. I had daily CPs and could barely remember my name. If it takes a while to get things under control she will need a lot of emotional and practical support to cope. And because epilepsy is so unpredictable it can be very hard to anticipate what her needs will be, she may find it hard to anticipate too. She may want to be as independent as possible, or she may feel safer with lots of support and the best thing you can do is try and listen, not assume too much ahead of time and try and stay calm if she is ever so slightly more irritable than before. Epilepsy can have really profound effects on mood - because of the impact it has on our lives and in some cases because the seizure focus itself is in the part of the brain that controls emotions.

But take heart, I'm on a combo of meds now (Keppra plus zonisamide) which controls my seizures completely with no side effects that I'm aware of. Newer AEDs are vastly better than the older ones in terms of side-effects. Most of us find them a bit rough to start with, to varying degrees (for me keppra was grim, zonisamide not too bad, other people have it the other way around) but once we adjust to them we cope OK.

hope it gets under control soon. Stress can play a part. DH was seizure free for 8 years on Tegretol until he lost his job.

It can take a bit of time to get the balance of meds right. Had 2 seizures whilst switching meds and getting dosage right, both again under periods of stress (taking the rabbit to be neutered - big softy and going for a promotion). None in nearly 16 months.

In terms of side effects, DH seems less mentally foggy on the new tablets (Lamictal) than the old ones (Tegretol Retard). I know it sounds awful but he is mentally sharper.

Agree with PenelopePipPop about the other needs of people with epilepsy and the social impact e.g. independence, driving etc.

to your DD and to you

I had status when pregnant with number 3 its horrible. I have been fairly settled ever sence on kepra after a long time on tegretol [which made me feel like a zombie]. Thoughts are with you

Poor DD. I've been there but thankfully my epilepsy has been under control for a good while. It could be stress. Lack of sleep certainly doesn't help me. Mine really got better when I started being sensible, not going out getting drunk, getting enough sleep, taking my meds when I was supposed to. I think I was in denial a bit and didn't really want to admit I had epilepsy!

There are loads of forums online now, so she'll have plenty of peer support - something which didn't really exist when I was her age. She must be gutted about her driving license, I was around the same age as her when I was first diagnosed and had to send my license back. But if she looks after herself, gets the right meds etc she should get it back in a year.

Sending her my best wishes.

DD still hasn't seen a neurologist but seems slightly better today. The nurses have been brilliant, even though she is being a bit grumpy after being hospitalised for a few days.

Her EEG has shown something abnormal which is why they want to do an MRI scan.

She is due to be taking some exams in 3 weeks time so she will have to postpone them for a while. DD is ok about not driving as she lives in London so getting around isn't too bad for her.

Have any of you found that food doesn't taste quite right or it has affected your appetite when having regular seizures? I'm not sure if it's a symptom of epilepsy or from all the medication they've given her.

Yup I had persistent gustatory hallucinations - a constant unpleasant taste in the back of my mouth making everything unpalatable. Dry mouth is a side effect of most meds, and some also cause a metallic taste. So if she is experiencing odd tastes depending on what they are it could be a symptom or it could be an effect. Try and get her to describe and take a note now so she remembers what it was like when she sees the neuro.

And I think most of us find we have loss of appetite after a seizure. Plus she is in a very stressful situation so that could affect her appetite too. Appetite suppression is also a common side effect. I stuck to eating little and often and whatever I fancied which is about all you can do.