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Original poster

Please help with Epilesy...

38 replies

DianaBarry5 · 17/05/2022 22:07

Hi everyone

I'm at my wits end and I know there is a lot of knowledge on here about everything. My daughter was diagnosed with epilepsy when she was 16. She has absence and tonic clonic seizures and is on sodium valproate. This med stopped the seizures for about the first 18 months then she has been having a tonic clonic every 5 months.

Today she had a seizure and knocked her 2 front teeth out. Apart from that she has piled weight on and is now obese. Her neurologist seems to think this is normal and I really don't know what to do. I'd like to see a different neurologist as the neurologist is paediatrics was so much better but don't know what to do.

OP posts:
TooColdTooSoon · 17/05/2022 22:15

Hi @DianaBarry5 my DD was diagnosed aged 15 so I know how scary it is Sad Her neurologist would often say that meds are very much trial and error and that often it takes a few different attempts to get the right one.

The first had no impact with seizures rapidly increasing. The 2nd worked for a few months but DD really struggled with the side effects - weight gain, fatigue and general confusion. Her neurologist was happy to switch her once he knew how much she was struggling with the side effects so I think maybe you’re right, switching to a new neurologist may be beneficial?

i hope your DD isn’t in too much pain Flowers

AuditAngel · 17/05/2022 22:16

I wish 8 could help. My daughter started having seizures almost 3 months ago and we are waiting for a diagnosis

WhereIsMyGlasses · 17/05/2022 22:17

If she's still having seizures then the meds aren't fully controlling the seizures, not that it's always possible, so asking to try a different medication could be an option. Weight gain is quite common on some epilepsy (and other) medication. My son was on generic kepra, it controlled seizures but caused irritation and rages.

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Original poster
DianaBarry5 · 17/05/2022 22:17

Thank you both for your replies. Hell isn't it....I just don't know the process of switching in the NHS...

OP posts:
Original poster
DianaBarry5 · 17/05/2022 22:20

WhereIsMyGlasses

She was on Keppra but it didn't control her seizures. Sodium Valproate was a last attempt as they try not to put girls/women on it now due to it not being compatible with pregnancy

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nocoolnamesleft · 17/05/2022 22:20

Unusual to pick valproate as first line in a young woman of child bearing age? Did they try anything else first? I trust she knows she absolutely must not get pregnant.

Original poster
DianaBarry5 · 17/05/2022 22:22

Yes she was on a cocktail of different drugs and nothing make a difference.

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WhereIsMyGlasses · 17/05/2022 22:23

We switched consultants on the NHS for him, the first one wasn't helpful at all and came out with quite ridiculous things and was very dismissive. I complained and we got referred to a different consultant. Just state your reasons and request a different consultant.

Original poster
DianaBarry5 · 17/05/2022 22:24

Do I email the department?

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itsgettingweird · 17/05/2022 22:25

There are various other drugs. They can be used independently or can be used in mixed treatment (more than one AED used together).

They absolutely need to look into a treatment to control them.

Beyond that there are many more alternative treatments involving VNS and also worthwhile looking at alternatives such as ketogenic diet.

Your poor DD. It'll be hard if she feels no one's listening and stress could exacerbate the seizures.

Also have you noticed a pattern related to her hormone cycle and periods? I know a few young girls who also took the pill and it helped.

Original poster
DianaBarry5 · 17/05/2022 22:26

Thank you. No not related to her periods, she is on pill... the rigger for her seems to be very early morning

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WhereIsMyGlasses · 17/05/2022 22:27

It's a worrying and scary enough time without having to navigate medical professionals who aren't helping. I was told that dosage can often make the difference, and not necessarily increasing it. It very much depends on the individual and the nature of their epilepsy so its hard to get it right, but they should know that and be more willing to try other options and medication.

Original poster
DianaBarry5 · 17/05/2022 22:30

She is on a high dose of sodium valproate but it's the same dose as she was originally prescribed and she has gained so much weight since. The neurologist did say dose isn't as important in adults as in children

OP posts:
Original poster
DianaBarry5 · 17/05/2022 22:32

I don't see how the same dose can be as effective if he's weighs considerably more. Why don't they take a holistic approach as he seems to think the weight isn't his concern but it's due to the meds she has gained the weight.

OP posts:
thevanilla · 17/05/2022 22:37

sorry to hear this, it must be so stressful for her. Absolutely seek a second opinion re changing med/ trying multiple meds together

Original poster
DianaBarry5 · 17/05/2022 22:49

Does requesting a different neurologist turn the department against you?

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SunnySomer · 17/05/2022 22:58

Your daughter could be me 35 years ago. It’s stressful for you and for her.
As someone else mentioned, you can have valproate in combination with other AEDs - I take it with levetitecetam - and it genuinely was trial and error to find something that worked. Valproate is effective for me but I needed to reduce dose in order to become pregnant.
In your position I absolutely would ask to see someone else. Some neurologists I have seen in my life have been shockingly appalling and closed-minded, others have been absolutely brilliant, open to all sorts of ideas and to patient thoughts/queries.
when you see a new person make sure you’re quite clear about the quality of life she would like to achieve. Take care.

ProfessorRapson · 17/05/2022 23:34

I’m sorry that your daughter is having such a bad time. I was diagnosed with epilepsy at 15, a difficult age to be given this diagnosis and managing AED side effects plus all of the other teenage stuff. Sodium Valproate is well known to cause significant weight gain; it’s the first AED I was on and added nearly 4 stone in 2 months - utterly miserable at any age but especially as a teenager.

It took years of trial and error to find a medication that I could tolerate and control my seizures (I’m 44 now) but Brivaracetam and Lamotrigine have worked incredibly well for me, no epileptic seizures for 5 years - previously a few months was a win! I now have non-epileptic seizures which is a bummer...

Definitely ask to be referred to another neurologist, it’s so important for your daughter to feel listened to and understood; I had the same neurologist for over 20 years and his primary concern was always my quality of life and if a medication was diminishing it, other options were always considered. Does your daughter have a named epilepsy nurse? If so do call them as they will liaise with neurologist and also offer sound advice. There are so many other medications out there. The Epilepsy Society are also brilliant and they have a helpline so it might be useful for you and/or your daughter to speak to them. Good luck it will seem frightening now but will get better.

TigerRag · 18/05/2022 06:36

DianaBarry5 · 17/05/2022 22:26

Thank you. No not related to her periods, she is on pill... the rigger for her seems to be very early morning

Is she sleeping ok? I've been on AEDs (not for epilepsy; mine was ignored and it's believed I grew out of it by 12) and I've found they can affect sleep.

Original poster
DianaBarry5 · 18/05/2022 08:10

TigerRag

She could sleep for England

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Original poster
DianaBarry5 · 18/05/2022 08:11

ProfessorRapson

Thank you for your reply. We are 5 years in and it doesn't seem any easier

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ProfessorRapson · 18/05/2022 09:14

DianaBarry5 what is your daughter's morning routine? I ask because early morning used to be a trigger for me: I'd get into to the shower as soon as I woke up and frequently have a seizure so I changed my routine to getting up an hour earlier having a cup of tea/breakfast whilst watching TV/listening to the radio/reading a book, to ensure that I was fully awake before getting ready for the day; not being fully awake and rushing was a bad combination.

It's not necessarily an easy thing to do, but eventually what helped, especially mentally, was to adapt my life around having epilepsy to try and prevent it from taking over my life. This takes time to achieve and is frustrating (I still hate getting up early!) and of course there are many times in life when unexpected things happen and you have to rush or you want to go out and stay up late so you kind of need to accept that this might trigger a seizure.

I wonder if your daughter has considered a support group specifically for teens with epilepsy; it can feel isolating and talking to others' going through the same might be useful and comforting.

Lysistratathereindeer · 18/05/2022 09:47

I was a few years older than your DD, but that was me. Epilepsy is massively under-resourced on the NHS: if you can afford it (and I know it's a big if) I would go private instead. It was expensive at first - £200 per session every three months - but now my epilepsy is controlled enough that I only have to see my neurologist once a year. There are no geographic constraints going private either, so you may be able to find a neurologist who specialises in teenagers - when it came to TTC, I was able to see one who specialises in obstetric neurology, which quite frankly would have been impossible on the NHS.

bananabread1234 · 18/05/2022 10:19

It’s awful. My daughter was diagnosed with JME three years ago. Initially put on a low dose of Lamotrigine, which has increased over the years. Tried Keppra for while, due to hair loss from Lamotrigine, didn’t work out, then back to Lamotrigine on a high dose. She’s just about to start on an extra dose of Zonisamide as an extra, as she’s had two seizures in the past month. Just keep on keeping on, that’s all you can do. If you aren’t getting anywhere with your current Consultant, then push to see another one, and keep pushing till you get one. My daughter always has them first thing in the morning, so at the moment I’m making her wait a while before she gets out bed, until we get this extra drug, it’s shit it really is. I’m also policing how much sleep she’s getting, making sure she gets enough, other than that there’s not much else I can do.

@AuditAngel It will get easier, it took us nearly four months to get an EEG and a diagnosis from my daughter initially having seizures. We weren’t given any medication until after the EEG. It’s Hell, but there will be light at the end of the tunnel.

Original poster
DianaBarry5 · 18/05/2022 12:44

Bananabread1234

Lysistratathereindeer

Thank you for you for your replies... she is 20 now and I'm thinking private may be the best route. The dental work to fix her teeth is going to cost a fair bit so what the hell! How do I go about a private referral?

OP posts: