Diagnosed at 61

[TheCoulerPurple]

I had a my first tonic clonic seizure June 23. I'd been having focal seizures for 10 years but didn't know what they were, so never saw the doctor. I've had CT scan, MRI and all normal. Had an ECT and that showed abnormal electrical activity in my brain which shocked me. I started Lamotrigine in July in 2023 and naiivly thought that would be an end to it. I still had a few focal seizures but was taken by surprise when I had a tonic clonic on Christmas Eve. My medication has been increased to 250mg per day. I'm really hoping this will control my seizures but since the last seizure I feel anxious every day and finding it difficult to come to terms with being diagnosed at my age. I'm also finding it difficult not being able to drive and wonder if I'll ever be able to again. Just wondering if anyone else has has a diagnosis at this stage of life and how you manage it. Thanks

[Hidden]

Hello,

Welcome to the jungle 🤷🏻‍♂️I’m about to hit 60 , our stories are very similar . I was having focals with impaired awareness b4 diagnosed which came after a TC. I was happy when I was diagnosed and the doctors where like🤔oook it was a relief to know the monster I was about to face .

[Shorehampete]

Hi there.I have a similar story in that I started having sleep seizures at 50yrs old. Never had any seizures before. Also all clear after having all of the tests you mentioned. Unfortunately with epilepsy we all respond differently to the medication and it can take some trial and error until they find the right combination for you. I had to leave my job as couldn't get there without a car. I was also nervous when I went to bed as I never knew if I was going to have a seizure in the night. After 5 years I seem to have found the medication that works for me and have been seizure free for 18 months now. As far as driving is concerned you need to be seizure free for 12 months before you can apply for a license and it seems to take the DVLA ages to get their act together but try and stay positive because one day it will all work out for you.

Hope this helps Shoreham Pete

[TheCoulerPurple in reply to Shorehampete]

Thanks for your reply. I think it's still early days for me, and I'm just starting to get my head around it. As far as driving is concerned; even if I could be seizure free, I don't know if I would ever feel free of the fear of having accident. Luckily I'm on a reasonable bus and train route, for that I'm thankful. I just feel a lot of sadness, because I've just had my first grandchild and it won't be safe for me to care for her on my own. I'll stop moaning now. I have a lot to be thankful for.

[Shorehampete in reply to TheCoulerPurple]

Hi

I know it's tough at first because it knocks your confidence really hard. But once they've found the medication that works for you life will start to return to normal. It just takes time.

[Hidden]

Hi,

It’s a really tough thing to get this diagnosis as an adult, so can completely relate to that. And we both got the diagnosis in the same month of the same year

I had the exact same belief ; that beginning Lamotrigine (the dose you’re taking now) would get it sorted and I’d be “fine” . It got titrated up to 400mg so your doctors have wiggle room if the need to increase the dosage for you

I’ve been taking a second anti epileptic since December 2023 which is reducing the frequency of tonic clonics; that may be another option that’ll be discussed with you.

Epilepsy is a frightening illness, and is guess the anxiety you’re feeling is perfectly normal if that helps at all. There’s a lot to be anxious about, but I hope you get to a point of having your epilepsy be more manageable for you as well as the camaraderie you may find using this message board.

Stef

[TheCoulerPurple]

It's good to hear others experiences of Epilepsy. How do you deal with the uncertainty that you could have a seizure at any time? Or the fear that you might hurt or soil yourself if it happens in public? I do go out alone, but I'm constantly aware I could 'drop.' I hate having to rely on my family for lifts, although they assure me they are happy to do it. I have so many questions.

[Hidden in reply to TheCoulerPurple]

I don’t deal with the fear well at all & since epilepsy began, have become increasingly isolated.

I was so embarrassed when I overheard the medics talking between seizures on my first admission about urinary incontinence. And have had a fair few injuries since (highlights -rib fractures, black eyes, broken teeth…).

I can’t lie and say those haven’t continued to frighten me a lot. In my case, other fears related to clusters of tonic clonic seizures that overshadow all of those now. (Post ictal psychosis).

Someone said this to me a while back and it helps me a bit . That even during those worst epilepsy days , with clusters of seizures…there have been more hours without them . Hopefully it helps you a bit, too .

I’d think it’s normal to have a lot of questions. I definitely do. I still feel in shock that I developed epilepsy out of the blue and it’s impacted everything I do , so have felt isolated and isolated myself. I don’t know if it’s the case for you , but I didn’t even know epilepsy was a risk or possibility.

I live alone and getting buses really frightens me re tonic clonics. There is no other option so it has to be done and so far not happened.

I can see what you mean; feeling bad about relying on family for lifts. I do hope that you feel more comfortable about doing that as time goes on. People who you matter to will want to do what they can for you 🙂.

Stef.

[TheCoulerPurple in reply to Hidden]

Thanks Stef. I like what you said about there being more hours without seizures than with.

[Hidden in reply to TheCoulerPurple]

"If it happens in public ? ". Wouldn't worry, have actually found it's the most incredible, positive aspect of having seizures ! Am a self dependent individual, but in the 5.5yr's I've experienced seizures, have found it unreal to be helped out time & again, by those I don't know. Wouldn't want to abuse such help, but always feels incredible to find myself being driven 10-20 miles home by some passing van, bus, 4/4 driver, or having discount store staff, insisting on carrying the shopping home. Not uncommon to hear "we wouldn't leave you"

[TheCoulerPurple in reply to Hidden]

Thank you. That's very reassuring. I think on the whole people are kind. I wouldn't leave someone either.

[Hidden in reply to Hidden]

Just saw this and wanted to say how good it is to see that you’ve been helped out by people having had seizures while in public 🙂.

[Hidden in reply to Hidden]

Thanks, have found it unreal and positive aspect of szr's. Hope you find the same, as it does give an exceptional positive feeling. - Most incredible two years back, found locals 110 miles away phoning around to find me a cheap hotel for the night & then driving me there! They put me in a 4* hotel for peanuts, had intended to camp wild in the Pennines that night! (I'd had a mild, confused szr, walked into a country pub!)

[johnearthman1]

I had been having memory problems for a while. had an MRI scan etc., but my neurologist could not find any evidence of epilepsy. I reported this to the DVLA who advised that I could continue driving.

However I had my first full seizure at the end of 2012 aged 67. I immediately surrendered my driving license. I was due to see my neurologist a few days later. He put me on Lamotrogine, which I have been taking ever since - 200mg twice daily. the side effects were not pleasant, but the frequency of seizures was low.. We also found that the side effects were affected by the brand of Lamotrogine and eventually found that GSK at least reduced the severity of side effects. However the seizures continued although still infrequent. Levetiracetam (Keppra) was later added - 500mg twice daily. My seizures stopped altogether and eventually I got my driving license back in 2015. I loved driving and I had missed it so much but learned that buses gave me some degree of freedom to travel.

The side effects of the medications are stiil there, but over time they have reduced. As for driving, yes it is possible to still have a seizure but one just has to be aware of it so any possible signs, stop - even a headache - just in case. Fortunately, this has not happened to me. I have to renew my license annually and have regular reviews with my GP, but it is worth it.

Good Luck

[TheCoulerPurple in reply to johnearthman1]

Thanks John. It's good to know your seizures are managed and you are driving again. That gives me hope that I'll be able to get behind the steering wheel again at some point.

[EpilepsyAction1 Partner Epilepsy Action]

I’m glad you’ve heard from others on this platform, as sharing information and experiences can be a good idea.

Can I just check you also know about our other services?

We have information about getting the right treatment and care, driving, anxiety and looking after young children by yourself on our website which you may find helpful:

epilepsy.org.uk/info/treatment/getting-right-treatment-care-for-epilepsy

epilepsy.org.uk/living/driving

epilepsy.org.uk/living/health/anxiety-and-epilepsy

epilepsy.org.uk/living/parents-and-children/parents-with-epilepsy

We have our Talk and Support groups (epilepsy.org.uk/support-for-you/talk-and-support-virtual-groups) and befriending service (epilepsy.org.uk/support-for-you/epilepsy-befriending).

We also have a membership offer which is designed to help people stay up to date with all the latest epilepsy news, views and research: epilepsy.org.uk/involved/join

Finally, if you think it may be helpful to speak to one of our advisers in more detail you can contact us by live chat or 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: epilepsy.org.uk/support-for-you/the-epilepsy-action-helpline

Regards

Jess

Epilepsy Action Helpline Team

[TheCoulerPurple in reply to EpilepsyAction1]

Thank you. I will check out these resources.