Partners of those with Epilepsy

[aaron]

Are there many partners of people with epilepsy here?

I've been here a few times to learn and ask questions as my girlfriend Kate has epilepsy but I don't think I've read much from partners that don't have epilepsy themselves. If threads exist, please point me towards them

It's been almost 5 years since Kate was diagnosed but we still feel lost. Well I do any way. Any time I feel like we are on to something, as far as triggers or which medication works, it all gets thrown out the window. Just like today.

The unpredictability is the worst thing about it. I know I'm preaching to the choir but I kind of feel like I need to get this off my chest.

I guess the worst thing is Kate does a lot of the things that seem to be common triggers for seizures and getting her to change her habits to sus things out is so damn hard. As examples, she has odd sleeping patterns, she drinks a fair bit of coke zero, smokes weed regularly hence having a rather crap diet. i.e lack of sleep, THC, aspartme, sugar highs and lows etc all of which are not good.

Despite all of that, after taking notes for a long time it seems she may be suffering catamenial epilepsy (Spelling?) and all of the above may have nothing to do with it.

I guess the frustration of getting her to try and figure this out is what is killing me. I've mentioned progestagen (spelling?) cream and the 3 monthly shot to see if it really is that time of the month lowering her seizure threshold. I've been nagging her for about 6 months but she is still yet to do it.

I feel like I'm getting close to drawing the line. I mean there is only so much you can do for someone that doesn't seem to want to help themselves. I feel terrible for thinking like this as I'm not the one going through it and I don't know how I would deal with it but my own sanity and work is at stake.

I've had to take the last 2 days off as she has had a cluster of seizures. 2 TCs and 3 other kinds....not sure but it starts the same as a TC, as in the staring and tensing up but doesn't actually progress into a complete body shake. She kind of just stares, her breathing stops for a minute and everything is clenched. Similar to a TC but no jerking. Is there a term for this?

She generally sleeps for hours after each one and this is the time I just feel so helpless and lonely I guess. Hence this thread.

I don't know what I'm looking for in replies, maybe just confirmation that this is kind of "normal"....I don't know.

Ummmm yeah so how do other partners deal with these times? Should I be used to it after 5 years or do you never get used to it. I'm kind of worried about the future and hating myself for worrying.

Sorry about the length but I know this place is great and you are all a very understanding group.

Cheers
Aaron

 

[aaron]

Make that 4 of the other kind of seizures

 

[Frusterated Husband]

It's hard. LJBain who regularly posts here is my wife. We struggle daily. I have meltdowns and rants from time to time, but then I get back in the saddle. Toss a 6 year old a 3 yea rold and an 18 month toddler in the mix....then it gets really fun. I get stressed out just leaving for work in the morning wondering if she's going to get them off to school and daycare safely. But we are a team, we are muddleing through...It's amazing what you can get used to dealing with. I always tell her that once we get this under control we are going to look back and wonder how the hell we ever got though it.

 

[Fedup]

aaron

Let me put it from my point of view. I have epilepsy for about 46 years now, my family supported me yet never understood. Then I got married and I have no idea how you do it or how my wife puts up with me at time, its bad enough being me, I go through all this sh _ t , sorry, and you have got to watch and go through it as well, ok a different side but you go through it. So to you and others like you especially my wife, Thank you so much for being there.

 

[Nakamova]

Hi aaron, as you probably know, this site was founded by a "Partner" -- Bernard. So I would say that one way to deal with the stress and confusion is to do exactly what you are doing: Reach out to others, exchange 'war stories', pat each other on the back, and then get back in to battle.

I feel like I'm getting close to drawing the line. I mean there is only so much you can do for someone that doesn't seem to want to help themselves. I feel terrible for thinking like this as I'm not the one going through it and I don't know how I would deal with it but my own sanity and work is at stake.

Have you told her this? She needs to know what's going on. All relationships involve a bit of give-and-take, regardless of the specifics. If you feel like the balance of give-and-take is off in yours, then you need to find out if both of you are interested in making things better.

 

[Chaz1]

Aaron,

You can have a tonic seizure only; I have seen my Son have one.

When my Son was diagnosed with Epilepsy at 23 and him now 27, he literally could not hear the word Epilepsy uttered never mind think of being proactive in managing living with E.

Many T/C later, not wanting to increase the med he hates with passion (solution always seems to be, keep upping the meds until mind/body can take no more and not sure of the meds your partner is taking and if she has side effects?) he has slowly but surely come around to know he has ‘some’ control in all this, listening to his body and the warnings of potential seizure, ruling out triggers, diet/nutrition, supplements, NFB therapy and therapy, sleep and healthy lifestyle. When not doing all one can for themselves (no matter the illness), it is only a matter of time before people start pulling away or become less sympathetic.

Because you love her so much, she may take all your help as nagging rather than what you are truly trying to accomplish, help your partner in any way you can. Would you consider seeing a therapist together, she can hear your side with a mediator in between and help her see some reason?

I think you are simply amazing.

 

[Blue]

Well, not a partner, though I wouldn't object if my good friend wanted me more a partner. I've been though a recent round of status with him. (Yeah he injured himself during the seizures) so not good at all and, scary for both of us but, I think more so me.

It's hard seeing someone you care about got through seizures of any kind, c/t s are the worst form the outside. I've learned that the best support I can be is to simply be there, talk, joke if he wants to and don't push him to any treatment or management options, just let him come to that on his own, and support whatever he chooses for himself.

The way I see it, it's his mind, body and life so it's his choice. My place is to be there no matter what those choices might be.

 

[Cherriuz]

There seems to be a few partners about maybe it would be worth making a place partners could speak and share their thoughts, i dont seem to have spotted one, but i could be wrong. Like make their own little section of forum or something. just some food for thought. i think it is totally different being on the side of someone who has to watch it all happen, and probably worse I imagine, at least for my partner as i cant remember anything really.