Seizures and encephalitis

Has anyone begun to suffer from seizures following E? What were the symptoms of the seizure? Can medication help? Thank you for any advice you can give me.

[EpilepsyAction1 Partner Epilepsy Action]

Hi Jessgrey

Epilepsy following encephalitis can sometimes be quite difficult to control. Why don’t you have a chat with the team at The Encephalitis Society about your questions:

encephalitis.info/support/c...

Karen

Epilepsy Action Advice and Information Team

[Hidden]

Hi Jessgrey,

No regret have never had Encephalitis, but now had epilepsy for 41 years.

The seizures continue, but at the moment 7 months seizure free.

Hoping you find some answers and suggestions.

Les

[Hidden in reply to Hidden]

Thank you for your comments.

[bevA]

Hi Jessgrey, I don't know if your still on this site, I have just found it, I had viral encephalitis 2.5 years ago, had a seizure at the time before they diagnosed the infection but once treated had been seizure free until earlier this year and now I seem to be having them every 3 months since march have been put on Kepra and increased twice following seizures and disappointed that the meds don't seem to be working, I don't know if its anything to do with hormones as I'm 48 so wonder if it could be the start of the menopause that is effecting it but Dr's don't seem to make much comment. Would be interested to see how you have been following encephalitis.

[Hidden in reply to bevA]

Hi My husbands seizures improved after being put on Clobazam (he has partial complex seizures). He stills takes Phenytoin and Keppra. Not sure about the link to hormones but my migraines became much more severe after I turned 50 and I now take gabapentin which I believe is also an epilepsy medication to reduce the aura. Do you have any other symptoms from the encephalitis? My husband has some personality changes (sometimes just like his old self and sometimes more excitable), trouble sleeping, really nasty periods of burping, stomach aches, sensitivity to noise and light. Sometimes parts of his body are hot or cold which I think is due to the brain injury. he is still improving but I am wondering if this will continue. Hope you manage to get the meds sorted.

[bevA in reply to Hidden]

Hi, thanks for taking the time to reply, I think I've recovered fully from the encephalitis although it did take a while, 2.5 years on I do have some memory loss and I also suffer with panic attacks but I think that is more down to the worrying about having a seizure in certain situations especially when I'm taking my children out on my own, I too suffer with trouble sleeping but again that could be down to my age as I've been having hot flushes, I'm once again increasing the medication so guess I will have to give it a go and see how I get on this time, I seem to get to 3 months and then here we go again. I did have some warning this time which I don't recall on the previous occasions so that is something but all very quick, I'm just greatful that my children are of an age where they can understand what is going on, I really feel for mums with very young children so I do have something to feel thankful for but really miss not being able to drive! I hope your husband continues to make a full recovery.

[Aw1234 in reply to bevA]

I had same problems with a seizure but not epilepsy. It was anxiety attacks causing seizure every 3 months. The breathing mode stops them. Try it to see how u cope. If it does stop them then look into anxiety panick attacks. Hopefully this is help

[bevA in reply to Aw1234]

Hi, thanks for your reply, by the breathing mode do you just mean deep breathing? or something more specific??

[Hidden]

He really missed driving. -ironically I now have to drive and I am terrified of driving (I hadn't driven for 10 years when he was taken ill). Hopefully your neurologist can suggest some different medication. Can symathise with hot flushes - a small dose of HRT stopped them for me. You must be doing an amazing job looking after children too. Take care.

[bevA]

Its amazing the things we can make ourselves do when we are put in certain situations or pushed outside of our comfort zone, I feel sorry for my husband as come the weekend he has loads for errands to do places that I can't get to on the bus and taking the kids to riding lessons, cricket, swimming etc. I think he feels like a taxi service!

I'm lucky that we have a really good bus service but I do miss just being able to jump in the car and go places. I think when things like this happen that change the way of living that it brings you closer, I feel like a burden sometimes when I have a seizure instead of the one that looks after the family I feel out of control but we still get by, I do think the kids resent me at times for not being able to take them places but I guess they've been spoilt in the past so it will make them think a bit more about the logistics of things and not just that they can automatically do all the things/go all the places that they want to do. Life goes on, and I'm sure in time you will become more relaxed with the driving, good luck. x

[Hidden in reply to bevA]

Oh yes - I learned how to use a big hedge trimmer today (under close supervision) 😂

[Hidden in reply to bevA]

I really admire everyone who is coping with seizures and ill health generally and bringing up children it must be exhausting at times. Take care

[bevA]

good for you, I hope your hedge is looking good! I've just finished decorating my bedroom and feel a sense of achievement so instead of dwelling on things I can no longer do I'm trying to use my time to do things within my reach, I'm having a bunion operation this week (inherited them from my mum) as I thought I may as well have them done whilst I can't drive so at least I can walk without being in pain, don't know that i'm going to like hobbling about for the next 6 weeks but at least I won't have painful feet! Keep up the good work and enjoy your time together & go easy with the hedge trimmer!!

[Hidden]

Good luck with the op!

[Hidden]

Hi there I had E when I was a child and have suffered a number of consequences most of my life I've lost count of how many pharma drugs I've tried throughout I'm weaning off of levatiracem (keppra) in place of it I'm using cbc to replace it. So far so good I was on kappra for 20 years it made me dissociate most of the time every 5 seconds but for very short periods

I've been on cbc for 3 years now but now increased to 3x daily. As far as pharma drugs go I would NEVER recommend kappra to anyone its horrible I was on 3000mg daily now 750mg soon to be 0mg only cbc plus whatever other drugs trileptal and clobazam I would not recommend trileptal either it can lower your sodium potassium levels dangerously low I've ended up in hospital over that drugs effects.