Can you help me to understand seizures please?

[Loafbeginsat60]

My dh had brain surgery x 3 at the start of the year.

He was on Keppra (anti seizure) meds til June and IV antibiotics for 3 months.

Since then he's been fine; can't drive for a year but in good health (some headaches)

Last week he got a skin infection in his leg which quickly made him ill and he needed antibiotics. It started to get better after 7 days, he no longer had a temp and all seemed fine.

Then out of nowhere he had a huge tonic clinic seizure (his first) which went on for about 10-15 mins by the time he came round.

We went to hospital, they restarted seizure meds and sent him home again.

I am now terrified that this is going to happen again as it was such a shock. Does anyone have any experience of this at all, will the meds stop it happening again? I am on constant high alert - every time he coughs or snorts in his sleep I think he's seizing.

Nobody at hospital could say what was likely - they said it could happen again in 5 days or 5 years.

If anyone has been through this I would really appreciate it if I could hear some experiences please, if not too painful to share.

Thank you

I do not have personal experience of something as serious (although spouse and a close family member have epilepsy) but do have some professional knowledge.

Your brain communicates using electrical impulses between cells. Epileptic seizure occurs when those electrical impulses run out of control. The brain is holding a balance between inhibition and excitatory electric impulses - if too much excitation happens, it breaches the seizure threshold and the electrical impulses fan out across many cells. The threshold varies person to person and is affected by things like recent ill health, dehydration, poor sleep, recent brain surgery.

They put your husband on anti epilepsy medication initially as a safeguard. These meds work by reducing electrical excitation, and increasing brain inhibition. So they up the seizure threshold for your husband. For most people, anti epileptics are very effective.

No one can guarantee it'll never happen again unfortunately. One of my close persons has had only two seizures in their adult life (is 40), one has had a change of medication because it was not previously under best control (was having one every couple of years).

There are things your husband can do to keep his seizure threshold high - good fluid, nutrition, sleep etc, low alcohol intake, no drug use. Medics will be looking to get a medication regime that mean no seizures

My son has epilepsy, it’s awful. If his seizures are nocturnal, you can get sleep safe pillows. And a wearable device (we have epimonitor) to alert you to seizures. Other than that, try to see if there are any triggers, there aren’t always. Good brain hygiene is good nutrition, hydration, exercise, sleep.
If keppra proves ineffective, there are lots more medications to try, instead of or as well as keppra.

I’m on seizure medication after brain surgery 13 months ago. They’ve increased the dose 3x since then. I have focal seizures though ( you don’t lose consciousness)

It can take trial and error to get the dosage right. I didn’t get on with Keppra and take Lamotrigine.

Various things can lower the seizure threshold. He should avoid alcohol, at least in excess. Mine tend to come back,if I’ve been very stressed. It could be that his was brought on by the infection. He should be allocated a seizure nurse, he can contact to adjust the dose if necessary.

If the seizures are controlled by the medication for a year ( I think that’s the time limit) then he may be able to have his driving license returned.

It is a worry and they do come out of the blue. The key is the medication, you’ll need to ask the doctor if it’s medication for life. One problem relates to the driving. Every time you have a seizure it resets the clock. Good luck to your husband.

Thank you all so much for those helpful replies. I'm so sorry that you are all experiencing / dealing with seizures too.

Interesting point about trying another med if this one doesn't work, of course there will be other options but I hadn't thought of that.

He doesn't think he can drink alcohol while taking Keppra so I am going to just agree with him and not say otherwise 😉

I've heard about keto or low carb diet helping so I'll speak to the doc about that.

He's very good about fluid intake and sleeps well so that's a good start. He runs his own business and we farm but he doesn't really get stressed or worry about things. That's my job!

They did say the infection probably tipped him over the edge. I'm hoping once that's dealt with he won't have another.

One question I do have is, once you've had one or two seizures are you prone to get others? Or does it not work like that?

Thanks again all

I've ordered an seizure monitor that's like a watch. It alerts me and 2 others if he has a seizure.

Once that arrives I'll feel better about going for a shower etc. We are taking turns to sit with him at the moment as I am so worried it will happen again and he's on his own.

I'm going to work this week but dropping him at his mums. Next week he wants to go back to work which scares me, but he has to get on with his life.

He hasn't driven since Jan when he had surgery and was due to get his licence back in Feb 26. So he's pretty down about the clock starting again.

The monitor will help with anxiety!
My son got epilepsy at 14 and all of the advice for teenagers is to not let epilepsy stop you living life but take precautions. I’d imagine that the advice for adults is the same. It’s so hard! But epilepsy is a disability so his workplace need to make reasonable adjustments to allow him to work safely.
He is likely to be entitled to free bus pass and disability rail pass (-30%) - we didn’t apply for these straight away but have done now. Accept any help you can!

Thanks Erin!

He laughed when I told him about the bus pass and said "things are looking up!"
Sadly we are so rural there aren't any buses but maybe one day it might be helpful.

He owns the company so he can make any changes needed in the office. Not driving for another year will really depress him as he's been 7 months already since surgery.

How is your son now; does he find it frustrating? We are only a few days in but I can see how much it's affecting his mental health already. He's such a happy go lucky man usually.

Thank you for replying again. I already feel a bit better talking about it with someone. 🥰

🤣you have to take the small wins when they appear! My son doesn’t use buses but if he did, they would be free!
My son is nearly 18 now. He’s had such a lot of support from Young Epilepsy and generally he’s ok with it now. I wonder if there is a similar charity for adults? Just talking to other people his age going through the same thing has been invaluable to him. I know seeing friends pass driving tests is hard for him.

If helpful, there is an incredible athlete at our running club who has had epilepsy since being a teen. He lives an absolutely full life. And a deputy head at my son’s school has epilepsy, he told my son and spent time with him. Again, living a totally full and normal life. There are positive stories out there!

Ha well maybe I’ll make an athlete out of him yet!

We’ve just heard from our local GP who thinks the antibiotics he was on last week may have caused the seizure (in conjunction with his brain scarring). So that’s a little reassuring having a possible reason.

A&E wanted to send him home on the same antibiotics but I refused until they changed it. I had a funny feeling it was connected….

Fingers crossed it’s that, an easily avoided trigger!