I have epilepsy, ask me anything about living with it

[eggwyneth]

I have epilepsy, ask me anything. Anything at all!

Are you medicated? How often do you have seizures and what types?

How long does it take you to recover from seizures and what helps you to recover faster?

How do you behave differently because of your epilepsy eg avoiding certain situations?

What diagnosis do you have and when were you diagnosed?

My husband is epileptic, starting with tonic clonic seizures really late in life.

Do you have a partner, do they witness your seizures, does it disturb them?

What anti seizure medication are you on?

Have you tried more than one?

My OH is a different man altogether on Briviact after lamotrigine (gave him heart problems) and leviteracetam (failed to control seizures) but it's expensive and the NHS can try to avoid you knowing about it.

Yes I'm medicated. I'm on cenobamate & lamotrigine currently but have been on oxcarbazepine and briviact before.

My seizures are focal impaired awareness and don't really have a set timing or frequency because they're usually triggered by high emotions.

If I'm at home I try and go to sleep and I'll feel better when I wake up, otherwise it's a bit of a struggle to try and recover. I'd say the biggest thing I try to avoid is public transport, my parents still drive me lots of places which I'm really grateful for

I'm diagnosed with epilepsy and I was diagnosed at 10, a year after I started having seizures.

Cenobamate and lamotrigine have worked best for me although the lamotrigine does trigger bad headaches. Briviact was absolutely horrible.

How did BRIVIACT make you feel?
Do you have an alert dog?

do you know when you are about to have a seizure? What does a seizure feel like or do you not know it is happening? Thanks for started a really important thread too.

I'm sorry you haven't got a side effect free solution.

Do you have children? How does the epilepsy impact on your ability to care for them?

Briviact made my mental health awful, made me feel horrible and unmotivated and I just couldn't do anything. I don't have a dog but I do have a budgie who can tell when I have seizures because he starts chirping super loud!

Lots of people do know when they're about to have one but I don't, I don't get any sort of feeling before it. My seizures are triggered by strong emotions so I can sort of predict when they might happen - after a busy day, if I've been travelling, that sort of thing, but I don't get a warning right before.

I'm unconscious during my seizures so I'm not really sure how it feels but the whole process does make me feel sick.

Would you be able to explain a bit more about your response to Briviact please? Our 4 year old (diagnosed with focal epilepsy) is on Levitracetam but is extremely aggressive. We’ve asked for him to be moved to Briviact. But he is so young that trying to get him to explain how he feels with the epilepsy and / or in response to medication is just not possible. Your experience would give us some helpful insight.

Do you have any other diagnoses alongside your epilepsy?

Did you have a head injury prior to getting epilepsy?

DS is the same. He's 13 next week. He had vacant episodes for a year before the first full tonic clinic seizure happened out of the blue about a year ago. It was awful to see. He was started on Kepra (Leveritacetum) but it didn't work, now he's up to the full dose (150mg) Lamotrigine and it's controlled. He missed the pills one evening and had a small seizure the next day. He came out of it quickly though when the paramedic put an oxygen mask over his mouth. We have to go to hospital every time it happens. When we see the consultant he always mentions sudden death in epilepsy and it scares the shit out of me. He's my one and only. I just read a thread of a 14 yr old drying of this and I felt a stabbing sensation of sickness and nerves run through me. I can't get my head round this. I mean, how can this happen? We always know if he's about to have a tonic clonic seizure as he is vacant for a while leading up to it but if that bit didn't happen, how would we know?

Can I ask how old you are? Are your seizures under control now?

I'm 20, I've been on lamotrigine & keppra before too. My seizures are semi controlled, they aren't constant like before and are now only triggered by things like lack of sleep or high emotions.

I was on briviact for a very short period of time. It did reduce my seizures but didn't stop them, and it really impacted my mental health, in a very negative way. I was taking it during a bereavement and being in my first relationship, sitting exams and so it all got too much and I had to come off it

I'm not diagnosed with anything else no, but as a child I had a tracheostomy tube which impacted my voice box, my medication for epilepsy has also impacted my voice

Thank you for this AMA. DS2 is non verbal; was diagnosed ASD at 2yo, bi polar disorder at 15yo and developed epilepsy as an adult. Obviously, he can’t tell us how his medications make him feel

Have you put on weight as a result of taking epilepsy medication?

Me too! What are your main symptoms? Do you get the déjà vu/rising nausea? It’s truly horrible. I usually pass out and/or am sick afterwards too.

i was only diagnosed in my early 50s first focal awareness was aged 48. So weird.

i’m quite nervous about going back to driving if I’m seizure free for a year - will be next July. Have you managed this at all, if you ever drove. I’d only drive local/short journeys anyway.

Can you describe the side effects of your medication?

My 16 yr old is on leveceteram 1000mg but still having (infrequent) seizures. He's overweight and sometimes angry, but he's a teenage boy so I'm not sure I can blame it all on the tsblets. I'd love him to be able to learn to drive.

Our consultant says he has a legal requirement to mention SUDEP, please try not to worry about it. They want to scare people into not having a bath alone or using power tools, they don't mean you to be scared he will actually drop dead at any moment.

Lamotrigine dropped my husband's blood pressure, make sure they or you check your boy. Leviteracetam made him so angry and anxious he couldn't function, then he fitted anyway so now he's on Briviact and it's fabulous for him, touch wood a perfect fit for whatever is wrong with him.

You have all my sympathy witnessing tonic clonic seizures. My god they're scary, aren't they? My DH has his first at 71 years old, from nowhere.

No I haven't, but I did have trouble eating on Briviact so lost weight.