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AIBU?

Epilepsy medication

29 replies

CheeseToasty · 04/02/2024 08:27

Sorry this isn’t an AIBU but I posted last week on children’s health and didn’t get any replies.

Last week my daughter was diagnosed with focal temporal lobe epilepsy and was wondering if anyone here could offer any advice on medication. The consultant has sent us away to decide if we wish to medicate. They did not offer any recommendations. 

My daughter first noticed symptoms in the summer so we went to the GP which has led us to this point. Since the summer she hasn’t notice many seizures however they were picked up on the short eeg she had. I haven’t actually witness any either so was wondering how necessary it was to medicate and as we are not aware of them how will we know if the medication is working? She is sitting her GCSE’s this year so worried about side affects as well as the implications of not medicating.

Thanks for reading.

OP posts:
BelindaOkra · 04/02/2024 08:34

Tbh if she is having enough seizures to pick up on a short EEG I would consider medication. Annoying they haven’t given you pros & cons though.

Could you ask for another EEG to make sure it wasn’t an unusual set of clusters then decide.

If you decide to go for it I would ask what the risks of trying meds then stopping them would be

Tinybirdie · 04/02/2024 14:27

What is the impact on her life from the seizures?

Have you been in touch with any of the epilepsy charities? Often they have helplines which can offer you real guidance.

Rarewaxwing · 04/02/2024 15:13

I've been in a similar position with my DS, except he had two tonic-clinic seizures. He was against taking medication at first, but changed his mind after he - and we - had looked into the risk factors of not medicating. We decided that the risk of him injuring himself from a seizure was greater than the risk of side effects from the medication.

I don't know how focal epilepsy compares to tonic-clonic epilepsy in terms of risk factors, but I imagine it's still very risky. Epilepsy Action might be able to help - they have a helpline.

My son is now on sodium valproate (Epilim) (NB - not suitable for women) and has no side effects. He hasn't had any seizures since he started on the meds.

If it's any comfort, although the epilepsy was a big deal at first, we hardly think about it now.

By the way, your DD should be entitled to a free bus pass now. If she chooses to take the medication, she'll also get free prescriptions (but she'll need to get a note from her GP).

Rarewaxwing · 04/02/2024 15:16

Just to add re free prescriptions: ask the GP for an application form for a medical exemption certificate. This covers anti-seizure medication and any other medication.

CheeseToasty · 04/02/2024 17:01

Thanks for the replies. It’s useful to hear others perspectives.

The consultant said she would send some information via email by Friday which I thought would help but nothing has arrived and said I should just email back if we wanted meds and she would prescribe without another appointment. We would then have a follow up in six months. I just feel a little uneasy with that plan.

I was looking at charity helplines and will give them a call tomorrow.

It’s really hard to gauge how much they impact her which is why I am struggling with this. She has recently been struggling with anxiety/panic attack like episodes at school and I do wonder if they are related. I have been told that tonic-clonic seizures are a possibility.

Now that she has this diagnosis she does seem more aware of them and last had one while she was sitting next to me a few days ago. I was completely unaware but she looked exhausted when she turned to me and told me it had just happened.

OP posts:
Rarewaxwing · 04/02/2024 17:44

My DS also suffers really bad anxiety and, like you, I wondered if his seizures was related. I know seizures and panic attacks can be mistaken for each other sometimes. But I don't know if anxiety can trigger seizures.

I'm sorry your DD has had another absence seizure. That is such a worry.

We're you referred to an epilepsy nurse at all? We were, and it proved invaluable. The nurse was, actually, more useful than the consultant. It would be worth asking if there is a specialist nurse available. Then you could discuss all this with someone who understands all the issues.

CheeseToasty · 16/02/2024 07:32

Thanks, yes she was referred to an epilepsy nurse but we haven’t heard from them yet. The consultant eventually sent an email and told use which medication she would prescribe.

I also gave Epilepsy Action a call and they were very helpful. We haven’t made any decision yet but they were able to tell me more about the medication and said that it didn’t usually give any side effects.

OP posts:
whatsitcalledwhen · 16/02/2024 07:55

Can I ask what medicine they're suggesting?

kirinm · 16/02/2024 08:03

I am epileptic - tonic clinic - and taking medication regularly has meant I can live my life with no limitations. Personally I can't see why you wouldn't take mediation.

Thriwit · 16/02/2024 08:07

If she wants/needs to learn to drive, I suggest she tries to get her seizures under control. She’ll need to be a year seizure-free before she can drive.

I’ve been seizure-free for 8 years; my epilepsy meds have allowed me so many more opportunities in life.

reenon · 16/02/2024 08:08

I take epilepsy medication. Have done for years. As my seizures are non existent now it means I can drive and live a completely normal life apart from taking 2 pills every day.

Pregnancy meant myself and babies were looked after extra carefully as there was a small risk to my babies, everything was fine.

reenon · 16/02/2024 08:10

Oh and I get free prescriptions (as does anyone with epilepsy) so a small win there.

whirlingdevonish · 16/02/2024 08:11

DS had a whopping tonic clonic seizure at 18, just after his A levels. Technically he wouldn't have been classed as epileptic until he had a second. But he was offered medication and grabbed it because he didnt want the risk of a second one. He was down and out for a frightening length of time after a normal day at home baking for a bake sale to raise money for his gap year.
He took the meds and at 28 is still on them. Two months after starting them he headed off to Nicaragua with Raleigh for his gap adventure, and a year later he started a degree at Cambridge. I was very wobbly about him heading off into a jungle with no comms for three months, but he was technically an adult and made the decision for himself.
He still worries that the meds affect his memory a little - tho has no proof, but can drive and do whatever he wants. An older family friend revealed at the time that he'd been on the same meds for 30+ years. That really helped DS feel better about the whole thing.
The only thing he can't do is join the armed forces. He flirted with he idea of the army after university but quickly found that was a no-go on meds; you have to have been seizure free for a year a think without meds to sign up. And he'd already decided to stick with the meds

Ambivax · 16/02/2024 08:41

My DS had two tonic clonic seizures aged 12 - it was absolutely terrifying the first time as he collapsed out of the blue having been a totally healthy child.
After his second a couple of months later we were offered medication and he was on Keppra for a couple of years with no side effects. He did have one further seizure in that time which his consultant thought was caused by him growing and his dosage not keeping up, but otherwise was seizure free and had a totally normal life.
The consultant suggested weaning off when he was 14, partly because of the driving thing - once you start driving you don’t want to risk stopping the meds. He has been seizure free ever since (is now 19), and drives.
I don’t know why you wouldn’t at least give the meds a go? I’d start now so if there are any side effects you can review well before the exams. It can’t be good for her having presumably a high number of seizures (if they were picked up on the EEG). The meds can be live changing, and she doesn’t have to stay on them for life if they don’t suit her (or she can try different ones and different dosages).
Also I would add that my experience taught me that you sometimes need to be proactive in dealing with the NHS, rather than just waiting for things to happen (and presumably it’s worse now). So chase up that epilepsy nurse and send the consultant a short email explaining why you’re struggling with the decision - ask about side effects, perhaps ask what they would do it it was their daughter etc.
Really good luck - it is so scary as a parent but things can improve Flowers (sorry it’s so long!)

Rarewaxwing · 16/02/2024 11:03

That's annoying about the nurse not contacting you yet. We must have been lucky because my DS's nurse was in touch immediately and always responded quickly to our questions. It would be worth chasing him/her up if you have a contact email.

My son is on a lot of medication for other conditions and really didn't want to take anything else, so he did a lot of research before agreeing to the epilepsy meds. We also ensured he was booked in for regular blood tests with his GP because the drug he was recommended can sometimes affect the thyroid. Once he knew we'd set everything up to make sure the medication was monitored, he was happy to give it a go. And, in fact, he hasn't had any ill effects at all and has been seizure free ever since.

I think it's important to read up on the risks associated with seizures. I didn't get it until a friend suffered a tonic-clonic seizure. Until then, she'd only had absence seizures. The tonic-clonic seizure caused muscle spasms so severe that they damaged her spine (I think there were actually small fractures) and she needed months of treatment to recover (she's fine now, thank God).

And my son twice narrowly missed banging his head on the ceramic bathroom sink when he had his seizures. Afterwards, I started noticing all the areas of the house where a seizure would be especially dangerous - such as the stairs and the hard tiled kitchen floor - and decided the risk of an unexpected seizure was greater than any risks associated with the meds.

kirinm · 16/02/2024 11:58

As an example and not intended to scare you but to appreciate the risks

I have had seizures where I fell down a flight of stairs, had one alone in a park, had one and fell on my face knowing 3 front teeth out, had one and cut my head open, landing on my wrist and nearly breaking it, couldn't learn to drive until I was in my 20s and kept having my license revoked.

I changed mediations about 15 years ago and have been seizure free for 7 years now. That includes during intense sleep deprivation having a non sleeping baby.

I am very much pro medication as you can see. Living with epilepsy is easy if you're controlled.

CheeseToasty · 17/02/2024 14:36

Thanks you all so much. I have read lots of generic information so it is useful to hear personal experiences too.

BTW my daughter has been offered Lamotrigine

OP posts:
KnowledgeableMomma · 17/02/2024 14:52

Take the meds! I work in the Sleep Medicine department and moonlight in EEG. Just because the focal seizures don't "look" bad or outsiders can't tell it's happening, doesn't mean they aren't causing damage in the brain. Repeated, untreated temporal lobe seizures will affect her memory and learning abilities and, if they happen often enough, will change brain matter size.

Lamotrigine has been around for awhile as a med and has low-end side effects when they do happen--much smaller side effects than the side effects of the repeated seizures themselves. The medications can be trial and error in that, not every seizures med is the right one for every person. Your DD may get lucky and this med and this dosage is perfect at keeping the seizures at bay. But more likely, the physicians will need to play with dosage and possibly class of medication to find the one that staves off her seizures best.

I'm not in the UK, but here, if she ever wants to drive, she will need to prove she is seizure free for 6 months if she ever wants to obtain a license. Some surgeries will also not be done until she is seizure free, should she ever need them.

CheeseToasty · 18/02/2024 13:17

Thanks. It’s useful to hear the impact of focal seizures. There seems to be an attitude that they are less severe. I think I’m just in denial which is why I am struggling with this.

I’ve had a good talk with dd and she has decided to give the meds a go.

I got an email from the epilepsy nurse on Friday and feel that I am not getting enough from them or the consultant. This is the message I received:

Dear Parent 
 
I am on annual leave this week but return on 26/2/24. If you require basic life support training or buccal midazolam training. Please let me know what day/time you are available to come between Monday to Thursday.
 
Bearing in mind that very little information has been given to be beyond the diagnosis I am surprised by the tone or am I expecting too much?

OP posts:
Smartiepants79 · 18/02/2024 13:27

Our epilepsy nurse has been very good but obviously not always available. Give them another go when they’ve returned to work.
My Dd has been diagnosed this last 13 months. We waited a bit to medicate as I was panicking about side effects. After the third tonic clonic we gave in and medicated. She is on levetiracetum. We’ve had no real side effects but she is not yet stable. Partial seizures have come back this month.
It is very difficult to judge the timing with her exams but the medication was right for us.
My dad is on lamotregine for focal seizures. He’s had no problems with it..

Smartiepants79 · 18/02/2024 13:29

Oh and I’ve found that consultants no longer really give an opinion or tell you what your should do. It’s all patient choice and deciding for yourself. 😡
Don’t read too much crap on the internet about side effects. Remember people only really post the bad stuff!

SisterAgatha · 18/02/2024 13:30

I take Keppra. I didn’t for ages as I’d only lost consciousness once and felt like a lifetime of pills was overkill if I was only having auras (which aren’t a bad deal for me, I get euphoric ones, I have the same epilepsy as your DD)

then 5 years later I had another one. So I take the meds now as there’s a clear need. No side effects, but I’m on a low dose as I don’t have a large amount of seizures. Don’t be afraid of the medication, it’s like my security blanket now. An insurance policy for me.

Rarewaxwing · 18/02/2024 13:36

I'm glad your DD has decided to take the meds.

I've just checked my email exchange with my DS's epilepsy nurse. I also received an out-of-office reply at first, but the nurse followed this up with an email three days later suggesting he speak with DS on the phone. We then had a long phone call - first him talking with DS, then with me. His solution to DS's worries was to arrange that DS had regular blood tests. This reassured DS enough to start taking the meds. And the nurse has been very responsive to any further queries.

So I'd give it a few days and see what response you get when the nurse is back in the office.

Rarewaxwing · 18/02/2024 13:40

@Smartiepants79 - that's so true about patient choice. When I first saw a surgeon about my gallbladder issues, I was perplexed about why he didn't recommend I have my gallbladder taken out. I raised this with him at our next meeting and he said he wasn't allowed to - even though, as he then admitted, my gallbladder clearly needed to come out!

Rarewaxwing · 18/02/2024 13:42

Also so true about people only posting bad stuff about drugs/procedures online. It's good to be informed, but people only tend to share bad experiences, not good. I would never have dared have my gallbladder operation if I'd believed everything I'd read.

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