3 Fits

[Hospitalspain]

I had my first epileptic episode whilst on holiday in Spain back in April 2022. I was taken by ambulance to a local hospitlal where I had various tests but no treatment other than advice to avoid alcohol completely. I was ok (I was not a heavy drinker but regularly drank 2 glasses of wine daily). Following the fit in Spain and a day in the hospital I was able to return home as expected in the hope the fit was a 'one-off'. Once home, I had a telephone consultation with a local specialist in UK, and until last night (18.7.22) when I had one in the middle of the night and another in the morning. I'm feeling ok other than memories of recent events are suffering. Is there anyone suffering similarly and if so what would you advise? My husband has spoken with local consultant this morning and I think the consultant intends stating me on low medication. Again extra members can help me with anything that would be worth knowing?

[Hidden]

Heat stroke may have triggered your seizure. Get a full assessment of your epilepsy through a neurologist before you're put on meds.

[Hospitalspain in reply to Hidden]

Thank you very much for prompt reply and it has def got my attention and I will take further advice from our local doctor.

[EpilepsyAction1 Partner Epilepsy Action]

Hi Hospitalspain

This must all be a very big shock for you. As the doctors in Spain said, anyone can have an isolated seizure. But now further seizures have happened, the neurologist in the UK will look at your case and possibly diagnose epilepsy. Epilepsy is usually only diagnosed if a doctor think there’s a high chance that the person could have more seizures.

epilepsy.org.uk/info/diagnosis

Here is a link for people newly diagnosed with epilepsy.

epilepsy.org.uk/info/newly-...

I hope you hear from others on this platform, as sharing information and experiences can be a good idea. You may also wish to try our other services that are very active:

epilepsy.org.uk/talk-and-su...

facebook.com/epilepsyaction

twitter.com/epilepsyaction

epilepsy.org.uk/info/suppor...

epilepsy.org.uk/newsletter

If we can be of any more help, please feel free to contact our helpline team directly. You can either email [e-mail] or phone the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday 8.30am until 5.00pm and Saturday 10.00am until 4.00pm.

Regards

Diane

Helpline Team

[Hospitalspain]

Thank you so much - very helpful and supportive.

[busylife]

Hello, Hospitalspain. I'm sorry to hear about your recent health troubles. I was diagnosed with epilepsy in February 2021, at the age of 62. I had the first seizure in my sleep in September 2020; spent 5 days in hospital, had CT and brain MRI scans which were thankfully good; was sent home and told, like you, that everyone "gets one free seizure" and you might never have another; but, to do their due diligence I was being referred for an EEG and also for an outpatient appointment with a neurologist (which was going to take at least 4, more likely to be nearer to 5, years on the NHS here in Northern Ireland!!!!! - but that's another story!) I was told not to drive for 6 months.

In Feb 2021, 5 months after the seizure, I had the EEG done as a result of which I was told that it had shown "slight seizure activity." This meant that I was now the recipient of an epilepsy diagnosis and they wanted me to start a low dose of medication..... and I now had to be one year seizure-free before I could drive again. So I started on 500mg of Levetiracetam twice per day. Sadly I had a second nocturnal tonic clonic at the end of June 2021. I still hadn't seen a neurologist so the GP said the next step would be an increase in the dosage of the medication. He said it's not an exact science; they start you on the lowest therapeutic dose and it that works that's great. But if that doesn't work they increase the dosage gradually until they get to where it, hopefully, does work, perhaps even introducing a second drug to take in combination. So I started then on 750mg of Levetiracetam twice per day. Thankfully, I have had no further seizures and so, at the end of June this year I've been able to go back to driving. (I paid to see a neurologist privately in September 2021 and he confirmed the epilepsy diagnosis.)

I was very nervous about taking Keppra/Levetiracetam. Usually on a forum like this you find others like yourself, seeking help because of problems. Most people who have no difficulties with their medication take it happily and don't come on the internet to tell people about it. So, you'll find lots of negative posts about Levetiracetam. However, I consulted with a pharmacist friend who told me to read up the leaflet about possible side effects, so as to be aware of them should they arise but he said not to go looking for them. He also said that Keppra/Levetiracetam is so frequently the first drug prescribed as it is so well tolerated by the majority of people. He advised me that the immediate side effects might take a few weeks to go away but they usually settle down and most people don't have ongoing side effect issues. That has been my experience.

In February 2021 I started on Levetiracetam. The GP said to take only 250 mg night and morning for the first week, to get used to it. For 3 or 4 days of that first week I felt sleepy within about half an hour of taking the tablet. I also felt unsteady on my feet, as if there were weights hanging off the back of my shoulders making me feel unbalanced and as if I might topple over backwards. But by day 5 those symptoms had gone away. However, on day 8 I had to start the full 500mg dose, twice daily, and the same symptoms came back again for a few days. And again, in June 2021, when I went up to 750 mg I had the tiredness almost immediately on taking the tablet but that soon went away too.

Because I had heard about "Keppra rage" where some people's mood is badly affected I also take vitamin B6 which is supposed to help with that. So far my husband says he hasn't noticed any rage issues, thankfully.

For me the biggest issue has been getting into a pattern and remembering to take the tablet. I set alarms on my phone, night and morning, to remind me to take the medication. I also now take it consciously. By that I mean that I stop what I'm doing and as I'm taking the tablet I consciously say things to myself like "It's 9.30 on Thursday evening, I've just been speaking to my brother on the phone and I'm taking my tablet" or "It's 9.30 on Friday morning, I'm looking out the window at the rain pouring down and I'm taking my tablet." I also keep the current blister pack of 10 tablets in the drawer beside where I sit in the living room and when I take the blister pack out of the box I write on the back of it the letter for each day of the week, so as to be able to be sure that I haven't missed a dose. I'm now in a good rhythm of taking them and I'm hoping the medication keeps on working.

It's a scary thing but epilepsy is most commonly diagnosed in the young and those over 60, apparently! Since my 2 seizures were witnessed by my husband, but happened to me in my sleep, I feel that in some ways they have affected my husband more than me. I think it has been traumatising for him and I'm so glad now to have had 13 months seizure free.

I apologise for the lengthy essay I've written here but I hope it might be of some help to you or to others.

[Hospitalspain]

Please do not apologise for length of your post. I am 71, newly diagnosed and absorbing the advice here like a sponge. I agree that my husband is as much traumatised as I am at this stage. I cut out all alcohol for last 3 months but risked a small glass of white wine last night and lived to tell the tale! Getting old sucks but as they say, beats the alternative!

[busylife]

I'm not much of a drinker but I do enjoy the odd glass of red wine when at home. I told my neurologist that when I go on holidays to a hot country I often like a glass of rosé at lunch time and a glass of red with dinner in the evenings and he said that he thought that amount of alcohol would be no problem. I followed that pattern when in France earlier this year and was fine. Apparently what affects one person badly enough to cause a seizure (be it heat, lack of sleep, stress, having a high fever, alcohol etc.) isn't the same for everyone.

I too find I have memory issues. I'm ok at remembering events since my last seizure just over a year ago but both seizures have messed up my memories of some pre-seizure events. There are, for example, some places we've been to that I just don't remember at all. I've learned to be careful about what I say and wait until we're in private to check things out with my husband. E.g. a few weeks ago a friend and I were at the coast and we bumped into people my parents had known years ago. I couldn't remember their surname - a common enough problem for those with no seizures - but while standing there chatting I was trying to remember what family they had and almost asked them how their two daughters were getting on. It wasn't until I was home and mentioning the chance meeting to my husband that he wondered out loud how long it was since their younger daughter had died. I was completely flabbergasted - especially about the fact that I had zero memory of this sad event and nearly asked about her! I do rough drafts of Get Well notes and Sympathy cards/letters and save them on my laptop before handwriting the message on a card so I looked on my computer and sure enough, there was the letter of sympathy that I'd written to them on the death of their daughter in 2013! I try to comfort myself with the thought that perhaps even people without epilepsy don't remember everything either.

I'm just glad to be alive and able to enjoy a more or less normal life (aside from remembering to take the pills!) As you say, getting old and turning into someone who has to take pills every day is not my idea of fun BUT it's not the worst health problem that I could have developed and it's far better than the alternative.