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.

[Why24]

sk0325. Think you said you'd started Lamotrigine, 75mg, twice a day, with side effects which haven't been great. Out of interest, what did you find with the Lamotrigine, which was notable? Am interested as I'd insisted on changing to it, January 2024 and have actually found it worse than the Lacosamide I'd been on (Nb. @ 52yr's, always been ex ceptioonally fit, was clear within months that muscle joints were affected, initially was the fingers, has now moved to ankles, shoulders, neck the lot. Would be interested to know what you've experienced (Nb. Have tried to persuade Neurologists that I'd prefer to return to Lacosamide - but NHS locally is a joke, think I've been able to speak to a Neurologist twice, in 6.5yr's, GP merely passes messages on, whilst always stating "we leave it to the specialists"

[sk0325 in reply to Why24]

Hi,

I apologise in advance if this answer is long!

I’ve only been taking the Lamotrigine for roughly 3 months (when I started taking the medication, I was told to take it slowly, until I reached 75mg so my body got used to it & also because some people have allergic reactions so my doctors just wanted to make sure it was safe)

This is how I started:

1st week - 25mg 1x a day

2nd week - 25mg 2x a day

3rd week - 25mg 1x a day & 50mg 1x a day

4th week - 50mg 2x a day

5th week - 50mg 1x a day & 75mg 2x a day

6th week - 75mg 2x a day

(This was with the 1500mg of Levetiracetam on top), I’ve continued to take both at these doses.

Some of the side effects I have are drowsiness, difficulty concentrating or sometimes forgetting what I wanted to say, my memory seems to have gotten slightly worse. It’s kind of hard to tell what side effects are being caused directly by the Lamotrigine since, I’m taking a high dose of Levetiracetam as well which, could also be causing the side effects.

I have difficulty sleeping (but this has been happening for years, even before my epilepsy diagnoses). Sometimes I have a loss of appetite and my family seem to have noticed weight loss. I do occasionally get back or joint pains but, so far nothing serious.

I would say my side effects have been fairly mild compared to when I first started taking both medications & I’m not too worried just yet because, I know it varies how long people adjust to new drugs and it varies how long it takes for side effects to settle.

I was told if I have concerns or if they get worse then to contact the epilepsy nurses. I have a follow up appointment with my neurologist in the summer as well so, hopefully I will be able to talk to her.

From my own research, I’ve read that for some people, certain anti-seizure medications can cause a vitamin D and calcium deficiency (especially if you’ve been taking them for many years), which may be causing the joint pains. Again, it varies case to case and I’m not sure how common it is since, everyone is different. I’m not sure if you’re already taking vitamins or supplements but, I do think it would be worth asking your GP to check your vitamin D levels, if you haven’t done so already.

I’m thinking of doing the same as, some of the other side effects I have are also an indication of low vitamin D. I also read that vitamin B12 is good for overall neurological health. I wanted to double check with my doctors which vitamins and supplements are safe to take with my medication or which ones they recommend just because, I think it’s better to be sure.

I’ve recently had a blood test done (I think it’s called a TDM) to monitor the level of Lamotrigine levels in my blood, to make sure it’s within range and not causing any other adverse side effects. I haven’t gotten the results yet but, each person responds differently to medications, so these blood tests can help tailor the dose to an individual. Sometimes you may need a higher dose, sometimes a lower dose - There are other factors too like, whether or not you’re taking another Anti-seizure drug or other medications for a different health condition that may be reacting with your Lamotrigine.

I’m not a professional by any means! So, I definitely think it would be good to monitor and keep a note of your side effects.

I'm really sorry to hear you're having difficulty with your doctors. I know it can be frustrating when you feel like you're not getting the support you need, especially when they keep making you go back and forth from one person to the next.

I hope you’re able to get in contact with someone soon & definitely keep pushing for a second opinion, especially if your symptoms get worse.

[Slof]

Hi, I have epilepsy and my son was diagnosed 2 years ago (age 17). We don't have the same types of epilepsy but we are on the same medication (Lamotrigene). I was always told it wasn't genetic - but I'm less convinced since my son was diagnosed!

[sk0325 in reply to Slof]

Hi,

Thank you for sharing your experience. It’s interesting that you’re both on the same medication but have different types of epilepsy.

My mum and I both had tonic-clonic seizures but are on different medications. Thankfully, she’s not had a seizure for over 20 years now and, I’m still in the process of finding which medications are working for me. At the minute, I feel like what I’m taking currently is working better but, I am waiting for the side effects to settle a little still. I haven’t had a tonic-clonic seizure since starting the Lamotrigine in November 2024 & I’m hoping this continues!

I’ve been interested in the possibility of a genetic connection since, my mum and her sister were diagnosed when they were much younger than me and, I was only diagnosed last year at 24.