New...(ish) diagnoses and family history of epilepsy.

[sk0325]

Hi, first post on here so, I thought I'd share my experience

I had my first tonic-clonic seizure in December 2023 after having symptoms around Oct/Nov the same year. I started noticing I was losing focus and struggling to comprehend things at work. We would have meetings and everything just sounded like gibberish. I assumed it was just stress and sleep deprivation, so ignored the symptoms. The seizure came as a bit of a surprise because, I had just turned 24 and thought most cases of epilepsy were diagnosed at a younger age.

I was officially diagnosed with epilepsy in March 2024 after my 2nd tonic-clonic seizure and was prescribed 250mg of Levetiracetam (Keppra), which slowly increased as my seizures got worse. I had a 3rd seizure in June, then my 4th in August, my 5th in October and 6th in November 2024. At that point my medication was 1500mg of Levetiracetam twice a day. The seizures were all tonic-clonic and my neurologist also suspected simple partial focal seizures after I described my symptoms.

The 1500mg of Levetiracetam didn't seem to work and so, I'm currently taking 75mg of Lamotrigine (Lamictal) twice daily on top which, thankfully seems to be helping (although the side effects aren't great! But they are getting somewhat better).

My mum has epilepsy, but has been seizure free for over 20 years (she is still taking Carbamazepine as advised by the doctor, but at much lower dose than before). Her sister (who unfortunately passed away in 2018 from Leukaemia) also had epilepsy and still had seizures, up until she passed away.

My neurologist said there could be a potential genetic connection, due to the family history of epilepsy and we could potentially look into doing tests in the future to gain more information.

I was just curious if anyone else has been diagnosed with epilepsy and like me, has a family history. What was your experience like?

[the_swimmer]

Wow that must have been a huge shock to you, even with a family history. Pleased that medication seems to be helping.My experience is very different though, I had epilepsy from birth, caused by a brain tumour that began forming when I was an embryo. The tumour was eventually found and removed when I was 12, but my fits remain, although I no longer get hallucinations with them.

My fits did stop for 6 years after my tumour was removed, and I was devastated when they returned, so I have an understanding of what it is like to become epileptic.

My fits are only temporal lobe, but no medication has ever in any way controlled them, so I came off all medication about 15 years ago.

[sk0325 in reply to the_swimmer]

Thank you for your response & sharing your story. It sounds like you've been through so much, especially with the tumour and the challenges of managing epilepsy. I’m glad to hear you're no longer experiencing hallucinations, and I hope you continue to find ways to manage things.

[Angie140720]

Hi, yes it is a huge shock when it happens to you even though it is in the family, I sort of hoped I wouldn't get it but did anyway. When I look back (I am in my 50s now) my dad had a seizure in his teens and occasionally loses words and my mum has said she sometimes zoned out as a child which could be signs or could be something different but my brother and I both had our first tonic clonic seizures at 17 years old. His was treated but was difficult to treat and he eventually got there with epilim and keppra but mine was not so I managed with lifestyle changes initially, only had a seizure every couple of years until they decided to treat it once I became my daughters carer. I also have absence seizures as well and I am fairly sure my brothers and my epilepsy is the same (he is no longer here) as we both had a problem with early starts as our triggers and would have a seizure in the morning. I take epilim and ethosuximide which stops the absence seizures and the losing words that I used to get and time will tell with the tonic clonics but it's been 4 years now. Neurologists have never suggested looking into genetics so if you get the opportunity I think it's a great thing to do, however I am not seeing any signs in my children who are in there 20s now which is a relief.

[sk0325 in reply to Angie140720]

Thank you so much for sharing your story. It’s interesting to hear about the family patterns and how you’ve managed your epilepsy, I admire your ability to make lifestyle changes, that’s the bit I’m struggling to stay consistent with. I’m sorry to hear about your brother, and I hope your tonic-clonic seizures stay controlled. I agree that genetics could be worth exploring. I'm glad your children are showing no signs and hope this continues .

[Angie140720 in reply to sk0325]

Thank you, and I hope your combination of medication works for you too and you remain seizure free. It can take time getting the right meds but it's worth the effort when you get there.