Partner of an Epileptic

[helga106]

Hi, I'm new!

Long story short my Partner E was diagnoses about 3 years ago with epilepsy after a sudden grand mal seizure when visiting his mother (luckily a nurse) on the coast. This seizure caused him to break his back in 3 spots, luckily he can still walk.

The doctors doubted he was epileptic for some time and then after seeing a nuro only then did they say yep you are. Since then he has been medicated and has been allergic to 3 of the 4 medications he's been on.

In the last year once he was almost back to a normal life he was hit by a car where he sustained more injuries including a broken femur, they had to put a titanium rod in his leg. He is healing well and walking now but the seizures have increased, one suspected theory is additional damage to the brain from the accident or small spurs in the back of his brain maybe growing. It's all a big of a mystery at the moment, but we are working through it and his next MRI will hopefully give more answers.

I have been trying to find support, understand and knowledge of the condition for sometime, this is looking like a good place.

Thanks for reading if you got this far! lol

 

[Nakamova]

Hi helga106, welcome!

We seem to have a number of Aussie members, you're in great company!
Good on you for looking for info and support. I think the more information you have, the better you and your partner can cope. So sorry to hear about his injuries. The car accident may well have traumatized his brain and/or the various physiological stresses from the incident may have played a role. Once you have a lowered seizure threshold, you can be more vulnerable to things like fatigue, dehydration, infection, etc. Anyway, I hope his MRI points you in the right direction.

Best,
Nakamova

 

[epileric]

Welcome Helga,

I've got to tell you that as someone who has seizures it's really nice to see the partner join as it helps give me an idea how I might have effected the people in my life.

I wish I had some advice to give but not today I guess. I do hope this site can help in some way. Meanwhile, do keep us updated on whether the MRI gives you any new information.

 

[Endless]

Helga,

Welcome!

You are a wonderful spouse, to be researching and reading like you are. Your husband is a lucky guy.

This site is the best one I've found for support and information, so I'm glad you are here.

Yes, even a small closed head injury from the brain just sloshing around in there can cause seizures or make them worse. Multiple small head injuries can do the same. A broken back is a pretty high price to pay for a seizure. I'm glad he can walk.

 

[helga106]

Helga,
You are a wonderful spouse, to be researching and reading like you are. Your husband is a lucky guy.

Ha ha, no not my husband (yet) we have been together for 6 years and have live together for 5, but Aussie guys can be slow on the ring thing!

He had another seizure yesterday, right after I left for work, I always feel so guilty when that happens. He woke up later in a pool of blood as he bit a chunk of the tongue (yuk) so his mother who is a nurse came and looked after him for the day. He got a very high fever, vomited lots, slept for about 18 hours. He's dehydrated today and hasn't been feeling well all day, so must of been a bigger seizure then we thought.

 

[mrstocks]

Woaah!

My girl-friend knows that if i have a grand mal seizure i refuse her to touch me (unless you really really need to) but she must keep everyone away about 3m and tell them to shut-up with their "We should do XYZ or WHAT SHOULD WE DO! (if you don't know, beat it. I'm not a pet in a zoo)", i don't have many with her, because i trust her and it's reassuring. With my parents they ring the hospital and with my brain injures that keep in hospital for a week. It's the stress and it continues to stress me i don't even tell them anymore.
Why am i telling you this? I'm someone who has past the years taken pills, tests, scans and medical studies all that didn't very help me (it's personal! I'm not a doctor! And i not staying everyone is like me), but when you trust someone it's great and i'm happy when i get them because i know i have a hug after ;-) and it's not in the street alone (after you need to get home and it's very tiring).

Doesn't he feel it coming? I never loose my mind in the grand mal seizure and i can understand people, that's good and bad, listening to the b*shit on how to act it's stressful and knowing that your are still "alive" is reassuring.

Maybe he should add a speed dial to your mobile? Like pressing Call button twice, there are other devices too, epilepsy is not fun and it's stressful, making other people stress it's a double, you would be more reassured and so does your partner and many people want to have a normal life without friends and family telling you what you can't/can do but if needed their are there.

Can i ask you how he broke his back with a seizure?

When i woke up after the coma i had a present in my bed, a crash helmet

 

[helga106]

Doesn't he feel it coming?

Can i ask you how he broke his back with a seizure?

He was asleep yesterday when he had the seizure. Often he has them in that hour before he wakes up or just after he wakes up. We know he was still in bed when he had yesterdays.

He never use to get a feeling, it would just hit him, but now on his new meds he gets a aura sometimes, he will say to me, "I can feel it coming" - he gets hot sweats and you can see it him in his eyes he's loosing it. But normally these don't eventuate to anything.

He never remembers a thing - he looses his whole day of memory and sometimes can loose the memory of the day or week before. Funniest day was when he came home from the hospital and he was like of my god we got a new fridge! He had no memory of shopping for it 2 days earlier. (It's funny when you look back)

His mother being a nurse has been a real help at first it was a massive shock for me, but she was very helpful and answered all my questions and twice has revived him. I wouldn't have known what to do at the time.

Ev broke his back on his first seizure. He was on holidays at his mothers house and I was coming down that night. He woke up and walked into the kitchen stood over the sink, his parents where talking to him and he just didn't respond. He then fell backwards between the kitchen bench and a wall. He is a very tall man and it was a very violent seizure. He then went to the hospital by ambulance after being revived, 5 hours later they said "anyone can have a seizure, your fine" and sent him home. An hour later he was standing in the yard and fell onto a fence and seized again. Needless to say they run a million tests after that. But the belief is both of those caused the break. The where near the top (T3, 4 & 6 from memory.) But the doctor told him he was very lucky.

 

[mrstocks]

Really sorry to hear that, must be very hard i can't even imagine for you both, you are lucky that his mum of a nurse. You should take some spend some time in order to do-what-is-needed. I guess you already did that. My girl friend is a vet (she could get keppra for free :O)

Lot's of thought, hope he gets better.