To ask with your help with my epilepsy? Medication isn’t working

[Ostryga]

I’ll give a quick rundown - in October last year I had a sudden onset stabbing head pain with extreme fear, pacing, lip smacking, panic. I went to hospital and was triaged for a suspected brain bleed. My Ct and lumbar both came back clear.

Once I’d had clear results I continued having these intense feelings where I’d have about a minute of deja vu “it’s about to happen” and then very intense feelings of panic, pacing, chewing my lips, strange body movements. From October to February my GPs diagnosed anxiety and panic attacks and treated me as such. The ‘episodes’ continued happening until I demanded a neurology consult.

since then I have been diagnosed with temporal lobe epilepsy. I’m currently on 1000mg Keppra daily.

it’s not working. I had a cluster of seizures this morning and whilst I am conscious throughout them they are so horrifying to go through. They knock me for 6 every time, I truly feel like I’m about to die.

every time I speak to my consultant he just raises my meds again. But I’m a single parent and I constantly terrified I’m going to die in my sleep due to this being uncontrolled and my daughter will find me.

How do I speak to my consultant to get this under control?

It used to be standard to put people, mainly children with uncontrollable epilepsy, on a ketogenic diet. Apparently it can help but you'd obviously need to discuss this with your GP or consultant. https://epilepsysociety.org.uk/about-epilepsy/treatment/ketogenic-diet

I do know from working with children with severe epilepsy, that it can take some time to get the medication and dosage correct, so don't give up hope! Also the fact that you remain conscious throughout seems very positive to me as it indicates that you have one of the less severe/dangerous types of seizure. Maybe try linking in with the epilepsy society for some support and reassurance.

It can take time to find the right combination but I'd ask if they'd consider adding another medication or looking at alternatives. My Mother developed temporal lobe epilepsy and it took a combination of Keppra and Lamotrigine. She's been seizure free for over a decade now and takes both twice daily. That combination may not work for you. It's different for everyone but I'd ask about the possibility.

Do you belong to an Epilepsy forum? I found those incredibly helpful when my Mother developed epilepsy out of the blue. Also it may be worth contacting a related charity for help and advice. I found that very useful when all this was new to us.

Sympathies because I know how utterly shit and terrifying TLE is. I hope that you find the right medication(s) soon.

Sorry you're experiencing such a tough time. It can be mentally and physically exhausting. I've tried 5 or 6 different meds over the years, now om Brev, it's the newer leopra. I spent years on keeper but the side effects impacted me. Push for other combinations. I thunk at one point I had a combination of lamotrigine and keppra to steady my seizures. Hopefully they'll find the solution soon.

Not sure why my phone doesn't like the word Keppra and keeps auto correcting to random words

Keep pushing for alternatives and different combinations, I’ve had two friends with epilepsy and it took a while to get the combinations right.

Im so sorry this is happening- it must feel really scary. Loads of people here have given you really good advice and I’m not epileptic so I won’t wade in with any suggestions.

I did just want to let you know that seizures without loss of consciousness which don’t respond to medication can sometimes be functional rather than epileptic. That means that they’re caused by your brain rather than epilepsy; but they’re often mistaken for epilepsy including by doctors.

Its not always the case but there’s a much higher chance of developing functional seizures if you have a trauma background, and for that reason they’re also sometimes called trauma induced seizures. They aren’t 100 percent understood but an epilepsy nurse should be able to check to rule this out if you think it’s likely.

Hi OP

I have you're type of epilepsy, I had it in it's other form (loss of consciousness full body seizures) as a young child then it went and came back when I was a teenager as the 'absence' seizures. The good news is, if you can get it under control with medication you won't have seizures at all, and can lead a perfectly normal life, completely unaffected by it. It may also come and go throughout your life.

The absence seizures are truly horrible, in my case, it's like your brain is overidden for a couple of minutes at a time and makes you think of the worst possible things you can imagine, nobody can really understand because you look perfectly normal all the while you're mind is racing, and your body is doing all sorts.

I learned to 'control' mine to a certain degree, it sounds really weird but I found it helped me to have a bit of a mantra, whenever the deja vu feeling would start just before the worst part of the seizure, I'd clear my mind and start slowly saying to myself (not out loud) shut up, shut up, shut up, over and over, and I found if I closed my eyes and pinched the bridge of my nose, it seemed to focus my mind and stopped the horrendous thoughts until it was over. It didn't stop the seizures but it helped me cope with the out of control feeling.

You may find that the medication they have put you on is not the one that works the best for you. I'm on tegretol slow release 800mg per day, which has always worked brilliantly, controls it perfectly. But when I was pregnant with my DD a couple of years ago, my epilepsy spiraled completely out of control, worse then it had ever been, as the pregnancy progressed so did the epilepsy and I was having 40-50 absence seizures a day, even on double my usual dosage. 3 times, for about 24 hours I developed epilepsy psychosis to the point I couldn't be with other people as it was like a panic attacks that wouldn't stop and paranoia that was off the charts, I couldn't even look at the dogs because I felt they were trying to communicate with me, it was the closest I'd been to madness, and it gave me a new found respect for anyone suffering a mental health condition that the can't control. Luckily for me as soon as I had the baby the seizures disappeared overnight, I went back to my original dose and it's been controlled again ever since.

There is light at the end of the tunnel though, It can be hard to get control of, and it will take the correct medication to do so, most of the time it's trying to find the right combination/dosage etc. The consultants will normally like you to try a medication for a few weeks to see how it goes, so you may have to be a little patient, but if you don't think something is working don't be afraid to say so, the way things are in healthcare at the moment you will most likely be left to fend for yourself unless you advocate for yourself, so keep fighting until you find what works for you.

Good luck OP, I hope you manage to get it sorted asap.

My DH has had epilepsy for over 40 years and has never found a medication that has completely stopped it - but it is fairly well controlled.

for 30 years he has been seen by a specialist in epilepsy either at the neurological hospital in London (part of ucl) or the epilepsy centre at chalfont st peter in bucks. You can get referred to them if your epilepsy is hard to get under control.

i believe most people just see a neurologist at their local hospital so these are not experts in epilepsy.

my DH has tried every drug available over the past 30 years and often 2 or 3 at a time and has been considered for brain surgery but not suitable.

He has recently had a vagus nerve stimulator inserted under his skin and this is having a positive effect - so there are a lot of things you could try.

have you looked up information from the epilepsy society? This could help.

I've seen my neurologist today actually who has recommended a move from Keppra to Brivaracetam. I've been reading about it all evening and I'm optimistic. Might be worth a go for you too?

Hey OP. You may find it helpful to join online Facebook groups or forums. You’ve been diagnosed later and so you have some coming to terms with what it means, which will be helpful in how you feel about it, and that will also help with adapting your lifestyle to help manage the condition.

I was diagnosed in my teens but my medical history clearly shows it in childhood too. It took me three different meds to find one that stopped the tonic clonic. I still have some absences but I’m generally well managed. I automatically watch my sleep, stress levels and eating these days. I’m also on keto.

As others have said, the meds may need to be adjusted for a while to get the right balance. I’m on Keppra too and I’m quite sensitive to it. At 3000mg daily it was intolerable but at 1000mg it’s fine. You just have to be patient, which can be frustrating. However, that’s where the forums come in. Google Epilepsy Action etc. Arming yourself with knowledge is key. You’re not alone.

I'm on keppra as well, 2500 a day in 2 doses, for temporal lobe epilepsy. It took 3 diff meds, 5 years and one rare and serious side effect (Stevens Johnson syndrome) before I was able to say it was controlled.

You just have to be patient and try till you find the right combo for you. I had lamotrigene and tegretol, neither of which suited me. Keppra has been my miracle, but it won't be right for everyone.
Fingers crossed for you!

So much good advice on here.

This really is Mumsnet at its best

Hi OP, I have TLE and take 3000mg keppra over two doses a day. I get horrendous anxiety and panic around my seizures. I was put on pregabalin along side the keppra as it's used as an anti anxiety medication but also an convulsant. That helped with seizure frequency. I was then given a benzodiazepine to take when I have a seizure to break the cycle of clusters. That does work really well especially as I get auras before I have seizures so can take those and most of the time it stops a cluster developing. It's never fully controlled but it's nowhere near as bad as it would be without medication. I've been on numerous meds over the years and it's taken a long time to find this combination to get the control at its best. All you can do is keep speaking to the consultant and nurses and tweeting your meds. Hopefully you will find the right combination soon

So much of your post resonated with me - I really understand how scared you must feel as I feel the same way each day.

I was diagnosed with epilepsy over 20 years ago (generalised tonic clonic seizures) and after a few years of medication tweaking I was eventually controlled on 350mg a day of Lamotrigine.

I went over 13 years without a seizure but then in 2019 I had a seizure at work completely out the blue, followed by another 11 months later and then another one 6 months after that. During that time my Lamotrigine was increased with no effect and then they introduced Keppra: 1000mg a day.

I then went seizure free for over two years again and then last night I had a funny complex partial seizure and ended up in hospital for two days in non-convulsive status epilepticus. I was started on a 3 day course of emergency treatment and then my Keppra was increased again to 1500mg a day.

As well as the 1500mg of Keppra, I also take 500mg a day of Lamotrigine.

I’m also on Propanolol for my anxiety which is really, really bad. I have been on it since my seizures returned in 2019 as I’m terrified every day that I’m going to have a seizure, and like you I worry I’m going to die.

I have previously done an online CBT course to help manage my anxieties around my epilepsy and seizures and I start more counselling next work specific to managing anxieties for people living with a chronic condition.

I have two young children and I am terrified about being alone with them in case I have a seizure in front of them…they will be so scared and the thought of it breaks my heart. I don’t like leaving the house in case I have a seizure outside, but nor do I like being home on my own in case I have a bad seizure when I’m alone and I stop breathing and nobody is there to help.

I go to bed every night with this fear inside of me….”What if I never wake up?”

Epilepsy is the absolute shittest of diseases. I feel like it’s taken over my life. After previously being seizure for 13 years I don’t even know who I am anymore. My life feels like a mess.

I have no idea if my increase in Keppra last month will help and that’s the worst part isn’t it? Having no idea if the medication is doing anything and you just have to sit and wait for the next seizure and hope it never comes.

Im really sorry you are experiencing all these emotions, please do PM me if you want to talk further xx

I noticed in my above post I said I’d had a complex seizure last night leading to non- convulsive status epilepticus, but I meant to write last month.

I don't think anyone understands how frightening epilepsy is. I've never had a tonic clonic seizure, but my neurologist cheerfully informs me ill have one at some point. In the meantime, I'm trying to run my home, my business, look after my family, etc, same as we all do. I've been seizure free for about 12 years now and even that is now making me wonder if my time is ticking down.
The mental toll is as bad as the physical. I found exercise, in the form of yoga and weights at home, work to control the anxiety, a bit. Everyone says "go out for a walk" but they're not being told "don't be alone, don't have a bath if you're alone in the house, don't cook if you're alone, blah blah blah".
Maybe we need an epilepsy sub- board in the health bit? @mnhq

I have TLE.

Bad news: it takes a long time to get meds correct. I take two inc Keppra. Its a long time ago but I think it took me 3m to titrate up to my current dose of 3000mg Keppra per day.

Good news: as others say once the meds are correct your seizures should be under control. Also intense panic can be part of the aura for TLA which may be why you feel so bad. But partial seizures which don't generalise should not be dangerous in themselves. You won't die in your bed They do feel terrible though so you have my sympathies.

Honestly, if you have only been adjusting Keppra since Feb and are only 1000mg it s early to look at other drugs. There are lots of other drugs IF Keppra doesn't work, but the therapeutic dose is 1000-3000mg per day so you are only at the bottom of that. You will know when it works because the seizures do just stop!

For me Keppra never worked alone. It was only when I started taking another drug zonisamide that they suddenly stopped. But your neuro won't consider another drug until they have reached the top of the therapeutic range with Keppra first as sticking to one drug is generally best - and as you'll find tapering off a drug and onto another is a pain too.

The drugs work in lots of different ways so there's a good chance something else will help if Keppra isn;t for you. Your neuro is doing the right thing and inc the dose v slowly as whilst it is very effective it can have some really nasty side effects inc depression and a major reason people stop taking it is not because it doesn't work but because it makes them feel awful. Slow and steady is always best.

Epilepsy is a really big deal and it can take a long time to get used to. There's a support group on FB called Women with Epilepsy you might want to join.

Be kind to yourself. It has taken me years to feel ok about my diagnosis. But I do have a good life overall, its just a random horrible thing I have to deal with. When it started though it was horrific and really upsetting.

A sub-group would be amazing.

Nobody understand the fear of what it’s like to have epilepsy except fellow sufferers. Having a support system on here would be amazing.

Thank you all so so much for taking the time to reply. It’s reassuring that it can take a while to find the right medication. When I spoke to my consultant he seemed to believe I’d be seizure free in 2 weeks with Keppra and I think that led to a bit of unrealistic expectations!

I agree a space where we can all talk and support each other would be amazing. Shall I set up a thread on general health? I’ll link it here. Epilepsy is such a difficult condition to live with and very misunderstood. It has eased my worries a lot knowing I’m not losing my marbles and that others understand.

https://www.mumsnet.com/talk/general_health/4791018-epilepsy-support-thread

@Ostryga - I’ve just googled TLE as had your exact symptoms on Sat night inc blacking out. Dh called ambulance- A&e Dr was clueless and I insisted on head cT scan which was clear but I will follow up with GP. All bloods etc were fine.
I googled my symptoms when I got home from hospital and there were some really good descriptions on an epilepsy form so I screen shotted them as I was
I have had this deja vu thing a few times over past 4 years, usually it’s fleeting and GP was pretty nonplussed in past, but never blacked out & that was really scary. I woke up convinced I was going to die - really horrible.
I hope you’ve managed to sort your meds now. I’m a bit dreading a diagnosis though - and mine is much worse when I’m stressed. And life is v stressful atm.

I have TLE too. Fortunately I’ve responded well to Lamotrigine. Once you’ve given the Keppra enough of a chance, can you try other drugs? I hope it resolves for you soon. I’ve been seizure free for a few years now but I remember the awful clusters of partial seizures and that frightened, doom-laden, queasy feeling.

I have partial seizures and they are exactly as you describe. Started at university and had a couole of tonic clonics hence too.
Please please experiment with hormonal contraception. It took me years to work out that my seizures were almost entirely triggered by fluctuations in my cycle. Although my seizures were throughout the month they were particularly intense and frequent on days 4/5 so towards the end of my period.
They disappeared when either on the combined oral contraceptive pill (not progesterone only pill) or the Mirena coil.
Be careful with essential oils - I had a tonic clonic after a massage and just the smell of lavender can trigger a partial seizure.
Alcohol - don't drink to excess. You won't necessarily have a seizure while you are drinking, but it is the withdrawal phase, i.e. esrly morning or the next day, where your brain becomes overexcited and you could have a seizure if your threshold is already low because you are epileptic
Take high strength vitamin B complex. It is important for neurological health and was suggested by a consultant.

Sorry I resurrected this thread as was searching TLS, @lovingandliving - it’s interesting what you say re hormones as I’m in perimeno and my first deja vu was right at start of going through obvious peri so hormonal disruption would fit. I actually get some pre/period symptoms like a couple of spots or some period pain but no period (last one was April).
Stress and/or tiredness seems to trigger my episodes as well. I was so tired last night (I got 1 hour in 24 hours as hospital wait to long) and slept for 10 hours & I’m still exhausted - luckily wfh today.

I have epilepsy. I didn’t get on with keppra at all, I found it gave me pins and needles. It took a lot of tweaking and trying different drugs before they got it right.

I’m currently on a combination of 4 plus I take clobozam when needed. Have you spoken to your doctor about taking clobozam if you can feel a seizure coming on, that’s when I take it. I also have a vagus nerve stimulator implanted. I still have seizures after 22 years but they’ve reduced and I generally only have complex partial seizures, not tonic clonic. I find I quite often have one when my period is due.

Tried keto, didn’t work. Best for kids. Just try to eat a balanced diet, don’t get overtired and don’t get too stressed.

Disclaimer- not medically trained but ask about the clobozam.