I have epilepsy - and it’s shit.

[HeadAgainstWall0923]

I had my first seizure when I was 16 and now 24 years later I’m still having them.

When I look back at my youth I remember how I couldn’t follow the career path I wanted, I couldn’t drive when my friends could, I couldn’t go out with my friends at the weekends, I couldn’t enjoy alcohol, I’ve never been to a nightclub, I had to put up with people making fun of me, boyfriends breaking up with me, friends pulling away from me, being pushed out of jobs, regular discrimination and nasty comments and always being made to feel different.

I’m almost 40 now and I’ve just had to quit my job that I loved because it was triggering my seizures and I now live off benefits.

I live daily with really shitty side effects from medications that don’t even stop the seizures.

I’m scared to be at home on my own.
I’m scared to be outside on my own.
I’m scared to be alone with my children.
I can’t let my children have their friends over.
I’m too scared to go abroad.
I feel too scared to do nearly anything.

My epilepsy taints everything. I don’t have the ability to freely live my life.

I’m terrified every day of whether I’m going to have a seizure, whether I’m going to seriously injure myself, whether I’m going to wake up in hospital or whether I’m even going to wake up at all.

I worry that one day of my seizures will kill me and I’m going to leave my children without a mum.

And the worst thing is that it can never be cured. This has been my life since I was a teenager and it will be the same for the rest of my life too.

It’s a really, really horrible and misunderstood condition and I just wish there was more awareness of it out there so people could understand how utterly debilitating it is, the huge impact it can have on people’s lives, how dangerous it can be and how much power it has to physically, emotionally and mentally destroy people.

All my thoughts go out to anyone who has to live with this, or anyone who has to watch someone they love suffer from this condition.

No questions but posting in solidarity. I have epilepsy too, not nearly as bad as yours (my medication mostly keeps me seizure free, unless I’m very stressed or tired aka parenting) but yes it’s shit.

That sounds almost unbearably tough. I've had some health issues recently which have inhibited my freedom and independence, but not to the same extent as you have described and as you have endured for all of your adult life. You have every right to feel hard done by.

I really feel for you.

My adult son has uncontrolled epilepsy as well. On four medications and still has regular seizures so sleeps attached to a monitor. The difference is though, he’s severely disabled so doesn’t understand anything. I can’t imagine how difficult your life must be.

Wish there was a cure. I agree it’s totally misunderstood.

I'm sorry. It really is shit.

Is a seizure alert dog an option for you? An acquaintance has one and it's given her her life back knowing long enough in advance that she is going to have a seizure to lie down somewhere safe etc.

Can I ask how old your children are and how you cope with having epilepsy whilst being a parent? Have they seen you have a seizure? Have you had a seizure whilst alone with them?

I’m really sorry about your son, it must be incredibly difficult for you.

I get warnings that I’m going to have a seizure and I start behaving very erratically so people who are around me can tell what’s going to happen. Sadly some of these builds up can last hours and hours and hours - it’s unbearable. The longest build up has been 8 hours and it’s so scary and distressing knowing what’s coming and not being able to do anything to stop it 😢

Most of my family have epilepsy except me. I can say that as a child seeing someone have a seizure it is scary but you get used to it. You love your siblings and it just becomes part of their identity. It’s easy for me to say but try not to let the fear of it cripple you, ultimately it is okay. What helped me as a child was knowing what to do in crisis, who to call, what meds to give if any. It isn’t ideal but you do get used to it and it’s okay. Although I don’t have seizures, my daughter is used to seeing her aunts and uncles have them as she manages fine and is really caring. One of my siblings feels more like you do about his epilepsy and I think it doesn’t help, it makes him feel really stressed which is a trigger.

I agree with everything you say, but especially the words " it's misunderstood". Omg, yes, a million times over. Even I didn't really understand it, until my daughter had her first seizure. Its a horrific, life changing condition.

My kids are a toddler and a baby. I’ve luckily not had a full seizure in front of them and I know my triggers well so if I’ve had an awful few nights of sleep with the baby I take a bit more medication that day and am extra careful. I’m lucky in that my medicine usually works and I have to be really really exhausted or stressed for one to break through. So full TC seizures are very rare for me and (since being on medicine) I’ve only had them while kids have been in the newborn stage and sleep is really a rarity. I really worry about them though because if I had one while carrying the baby and I drop him down the stairs or something I could kill him. I try to make peace with this by thinking that I could also just trip on the stairs and drop him or get hit by a car and that life is full of risks and I can only do my best to manage them, not eliminate them.

It’s more common for me to get partial seizures where my ability to understand language gets impaired, and I find these really horrible. Being robbed of language and only half able to understand or speak for an hour at random is awful. It makes me feel like an animal, as though I’ve lost my humanity for a bit.

I also can’t drive, barely drink and have had to avoid doing certain kinds of work - to minimise stress and keep my medication working.

Your epilepsy sounds much worse than mine, I’m so sorry you have to deal with it at that level. Although one think I do envy is that you get seizure warnings, I don’t, mine come out of the blue. Your warnings sound horrible but they do at least mean you can take steps to keep yourself safe. Before I got my medication and dose right, I got horribly injured by some seizures because they just came on at random.

Have you been offered Benzodiazepine anticonvulsants? Some people who get warnings have them as they supposedly can stop a seizure happening

One thing that really pisses me off is that people with epilepsy are not routinely offered therapy or some sort of mental health / wellness support on diagnosis or at any point they feel they need it.

People with cancer or who are bereaved get offered this because we (rightly) recognise those things are traumatic and stressful. Epilepsy is not only stressful. it’s a condition where seizures are actually triggered by stress, and as none of us can entirely avoid stressful situations, some help / techniques to help manage your response to things like work, exams, breakups, having children, family, money worries, being diagnosed with fucking epilepsy in the first place - would be quite helpful.

But apparently there is no funding for this … anymore …

@HeadAgainstWall0923
I also have a child with complex needs with a rare epilepsy disorder. We rarely have a day without seizures .
It must be so hard for you to try and live life and be a parent and no wonder it gets you down.
Can I ask what rescue meds you use? Are you allowed to take them when it is obvious a seizure is brewing ? We intervene with chloral hydrate if he starts to show signs of things escalating which works really well though it makes him sleepy.
Also we fought for medical cbd which has helped a lot . Don't know if that would be an option.
Anyway I am probably reaching you to suck eggs as I am sure you have tried everything . It is such a complex condition!
Anyway a hug for solidarity if nothing else x

You have all my sympathy - it’s really shit. And misunderstood, and underfunded. My sibling died from SUDEP (which is mercifully rare at 1 in a thousand epilepsy sufferers in a year) after 25 years of severe epilepsy following onset at 24 years old. He ended up with terrible osteoporosis as his medication had such an effect on his bone density.

It completely changed his life and limited what he could do enormously, and it really upsets me that he never got to achieve his full potential. It annoys me that people leave millions to the RSPCA and donkey sanctuaries when conditions like this are so desperate for funding for more research. It’s prompted me, after a lifetime of hating running, to run a marathon to try and raise money, and as a childless single woman I’ll be leaving a large chunk of my estate to epilepsy research.

Suggestions from me. Try not to worry about your children - my niece always knew about her dad’s condition and took it all in her stride from a very early age - she’s amazing. Lean on your epilepsy nurse as much as you can - they have access to things like sleep clinics and research projects. Try to keep fit and healthy - concentrate on getting as much sleep as you can, take calcium supplements, and do strength training at the gym, or even at home if you can’t afford a gym - really look after your bones. Big hug from me xx

Thank you everyone for all your responses and kindness.

I have never used rescue meds when I’ve sensed a seizure coming, or been offered them so I think this is something I will ask my epilepsy nurse about. My epilepsy nurse is really, really lovely and she’s been my first point of call over the last 10 years so I always feel safe under her guidance.

When I had my babies (two separate births) I was told that if I wanted to carry them up or down the stairs then I must put them in a car seat first to try and reduce the likelihood of severe injury to them if I collapsed whilst holding them. I also wasn’t allowed to be home alone with them for 6 weeks following their birth and I found that really hard. My husband took his two weeks paternity leave, then my dad came to stay for a week, then my mom came to stay for a week, then my father-in-law came to stay for a week and then my mother-in-law came to stay for a week. It made it very hard trying to establish feeding and the maternal bond when there was always someone with me from 7am-5pm who was hovering over me and wanting to take over.

I’m home alone today and I feel terrified….every minute feels like an hour and all I can think is, “what if I have a seizure?” It takes over everything. I’m still recovering from a seizure I had last weekend and I feel drained.

I was in hospital earlier this year in non-convulsive status epilepticus where my brain was in seizure mode for just under 36 hours. It took me almost 4 weeks to recover from that. It’s been a really bad year for me.

About 15 years ago one of my friends died from her epilepsy too - she was so carefree and outgoing, only had seizures once every few months, they weren’t particularly severe but it still got her. I will never forget the phone call I received from her dad to tell me she had died 😢 My friends daughter also died from it when she was 12 - she was otherwise a totally healthy child.

I’ve had CBT twice and I take anti-anxiety medication to try and live with this condition but it doesn’t really make much difference.

Resigning from my job earlier this year (after my hospital admission) was one of the hardest things I’ve ever had to do and I really thought it would be the first step in improving my epilepsy, but then I had a seizure last weekend completely out of the blue and I’m back to square one again and living in fear again. Life just feels hopeless.

I genuinely don’t think I can keep living like this. It’s too hard.

You have my sympathies. I have Temporal lobe epilepsy. I don’t always lose consciousness, when I do it’s maybe once every few years. But the fear that it may happen at any moment is always there.

Mine is controlled and I consider myself very lucky. I expect my cause is a childhood head injury, and a combination of stress factors. My children witnessed a seizure and thought I was going to die, my eldest is very nervy in stressful situations as he is always waiting for me to drop.

I cannot even imagine what life must be like for you, it must be like being on the edge the whole time and I really hope that something improves for you. For my seizure type, a vagus nerve implant is an option, I don’t know if that would work for you?

Have you been offered Benzodiazepine anticonvulsants? Some people who get warnings have them as they supposedly can stop a seizure happening

I get warnings so have something starting with C that I take for 3 days. I’ve not had to do it yet - as for me the warnings are also very much like generalised anxiety - so I don’t know how well it works and you may have been offered it already. I’m really very lucky, I am doing well on Keppra.

one thing that does piss me off is when people talk about dissociation as though it happens all the time in the general publics mind. For me it’s a genuine sign I’m about to seize so to have it poo-poo-ed like “oh yes I get that sometimes when I’ve had a hard day” makes me think, oh do fuck off.

It sounds like you’re really struggling at the moment - maybe ask your epilepsy nurse to refer you for talking therapy? It really helped my brother a lot. He was able to offload to someone who was trained, and at a distance from family and friends.

Is it clobazam? I had to take a 3 day course of that earlier this year when I was in hospital.

I take Lamotrigine and Keppra. I’m on a really high dose of Lamotrigine and my blood serum levels are way higher than they should be (based on recent blood tests) so they are actually reducing my dose as they think it’s making my jerks and absences worse. Maybe that’s what caused the seizure last weekend - who knows? I’m now awaiting another prescription from my GP so I can increase my Keppra dose. We are nothing but Guinea pigs and it feels like it’s all just guess work. I just wish there was a tablet that could fix it…..not have to spend years and years trying to find the right cocktail whilst ensuring all the side effects and still having seizures. It’s so incredibly unfair.

I completely agree about the disassociation and how we are treated as the symptoms we have are apparently no different to what every other member of the public experience too 🙄 I don’t think they have any idea how offensive they come across when they belittle all the strange behaviours and sensations we go through. People don’t have a clue.

I tend to just keep quiet now about my experiences and behaviours as that’s easier than having people trying to make out I’m just exaggerating and then have to hear them say “the exact same thing happens to me every now and then too.”

there is evidence that some people respond well to cannabidiol which is in cannabis. Hence rare syndromes being prescribed cannabis oil.
might be worth a try ?
Also have they looked at a VNS ( vagel nerve stimulator) . That might be good as you can activate it if you feel a seizure starting and it can stop them .
Can you ask to be referred to a more senior consultant to explore other options ? It might be helpful.

And if they are weaning one of you meds down that is bound to make your seizures more unstable of course so that won't be helping.

This thread has really scared me as my son has just been diagnosed this week after his third seizure. They had been coming once every few months but he has had a 4th one this weekend just a week after the third.

I wanted to say that his brother have been with him every time so far. His 11 year brother has great presence of mind and took a full video last time. His 8 year old brother was a bit scared as he was the only one with him last time but checked he was as comfortable as possible and called for our help.

I feel proud of them. We have talked to them a lot about it but I feel that at least if it happened to a friend or someone else their experience would help. Also I feel like this would transfer into other emergency situations.

It sounds so hard for you - I really hope that you can find some peace.

Really sorry to hear you’re struggling.
I’vr had a couple of seizures that could be TLE - strange deja vu, rising nausea feeling, then on Sat night I blacked out afterwards and ended up in a&e. Had to push for CAT scan and no abnormalities so off to GP again to be referred to neuro I think.
i think they’re also linked to stress for me.

I've kept this thread on my watch list so that I can take a note of all the meds everybody is on.

Unmumsnetty hugs to every single one of you. I'm currently sitting on my stairs by the bathroom whilst my DD has a bath. Showers of course are the way to go, but she loves her baths. It freaks me out everytime she says she's getting in it.

No real advice for anybody, but this thread is currently giving me a strange kind of comfort

My dsd has severe uncontrolled epilepsy, it's part of a syndrome with severe learning disabilities. Thankfully she doesn't have the capacity to understand what she is missing. She's an adult and lives with live in 27/7 carers, her favourite thing is to watch Thomas the tank engine... and go to primark, life is simple in a way

@flapjackfairy

Cannabis based medicines are not a long term solution for many, even the syndromes that the media have reported. Most are rare and no clinical evidence available, work for done not others and often only temporarily. Changing meds constantly so body can't adapt is common too

@gotomomo
It has been a major part of our arsenal.against seizures for a good few years now. It reduced seizures significantly in our case.