Hubby and epilepsy

[Lancashiregal10]

Don't know if I am allowed to post twice in a day but feel horrible

I have epilepsy, have done for 11 years, DH knew when he married me and when we decided to try for baby that it was uncontrolled.
I seem to be ok for a few weeks then have a really bad day
The trouble is hubby is really losing patience with me when I have a bad day
Today is Father's Day (just in case you did not know). I got him some really nice pressies from DS (10 months) and let him have a nice lie in.
The plan was then to have dinner and go out for the afternoon to the park and then on to parents to give my dad and his dad their presents.
But the seizures have struck again and I am lying in bed having loads, I also get auras (warning of seizure) and have had a consent one for the past two hours.
He has just thrown me a filthy look and stormed out with DS. We have actually nearly broke up a few times due to his attitude.
I so can't help it, I am trying a new medication despite the horrid effects including sickness and hallucinations. I have gone on the depo injections to try and stop my periods as they seem to be triggering seizures.
I manage to looks after DS and work and I keep the house tidy.
It's like he expects me to do something but I am doing everything I can
I just feel like total shit :(

Ps I understand how hard this is for him, it must be hell watching your partner to through this but I am fed up of being made to feel guilty for a disability that I can't help.

How long have you been with dh. He doesn't sound very supportive. You have a medical condition! No way should you feel guilty for something you can't control. Im shocked by his lack of support. Sending you hugs and hoping other mn people be on soon to give you better advice x

What a selfish childish man. Has he ever witnessed you having a full fit? The only excuse I can think of for him, is that he is scared or horrified by it and can't deal with it.
I have epilepsy too and get auras.
My husband puts me to bed, and deals with everything. He knows it's not my fault.
It's not your fault either.
Marriage is about the challenges as well as the good bits. In sickness and in health.
I'm sorry you are unwell and hope the auras stop soon, I know how scary it is, but getting wound up will only make them worse.
Try and relax x

He has seen plenty we have been together for over 11 years. I has my first fit when I was with him,
He was really supportive till DS came along now it's almost like he resents having to deal with him while I am having the seizures.
I can understand how it all gets on top of him at times,
It is bound too but it's as if he blames me.
We had huge discussions before we had DS (quite a few discussions as it took 6 years to conceive). I pointed out that there would be times when I am out of it and he would have to take over. He just seems to totally resent me now.

I'm sorry but I would seriously consider breaking up altogether.

My father was like this with my mum and the best thing he ever did was walking out on us. His anger and his refusal to support my mum caused no end of problems. Stress in my mum's case has always reduced her threshold for seizures, so the reduction of stress as a result of him leaving was a really good thing.

With regards to today, how many seizures have you had? Do you need medical help?

He's being a shit. My mother has epilepsy and it's always been something my parents have faced together. Not that it hasn't been hard for them at times but my dad has never blamed her for something that is out of her control in the way your husband is doing. I'm disgusted to read about you getting dirty looks from him for being unwell. It's not exactly going to alleviate the stress and worry that can contribute to further seizures, is it?

You need to have it out with him because him acting shitty towards you for the life-long illness that YOU bear the brunt of (I've seen how exhausting and debilitating epilepsy can be for someone who has it) is unacceptable. Sure it effects him but to act like a put upon martyr when you're in bed suffering from your epilepsy is a joke. His resentment is entirely misplaced.

As kids I understood why we couldn't go to certain events that had flashing lights, or why mum was in bed, and why we had to compromise on certain things. If children are capable of being understanding then a grown man can be too.

This is definitely something your children will pick up on and it won't be pleasant to see their dad acting like this towards their mum when she's ill. They will resent him for it.

You poor thing. My DH has just been diagnosed with epilepsy and we're working together as a family to try and get to grips with it. It's tough for us but it's tougher for DH - just like it must be for you. Take care.

You've inspired me to start a thread asking a couple of questions about epilepsy, hope you don't mind.

your saying its uncontrolled does that mean your not taking medication for the condition or that the medication is not working ? as that makes a massive difference

sorry ignore that I had a reading fail you said in the first post you should have a discussion with your husband has he is being completly unreasonable and he should be supporting you through this troubled time I hope you find medication that controls your elisply without the horrid side effect soon

Hi sorry not replied been out of it.
On bad days I can have up to 15 a day (only had 11 so far today :) ) sorry have to laugh or else I would cry.
I was on medication for the first for years but it did not do any good. So came off it. Now just gone on a new medication as they have linked it to hormones and think this med could help but will take a while to get in my system.
I always get auras thank god which give me time to call for help. I am never with DS alone at the moment as to much of a risk.
I tried to walk out or make him leave a bit ago but he just said I am not fit to look after Ds on my own.
That is my greatest fear. I honestly think he would use my epilepsy against me when it comes to who has DS. I have posted on here before re problems with inlaws and they would not think twice to support him.

It's a right mess as the moment. Work are threatening to suspend me on medical grounds and all this combined has just made the seizures go through the roof.
I just want to run away (with DS of course)

Also whostolemycamel I don't mind you starting a new thread at all re epilepsy. If there is anything I can help with x

Also work are not getting anywhere as my sickness record is much better then others who work on the project and I do a lot better job then they do (sounds big headed but i do and have recently won a big award for project i led before i went on mat leave with DS) They have been told to back off or face court by UNISON.
Still horrible to know they are trying to get rid of me.
Feel like I am always treading on eggshells.

Sorry but I think you actually should break up, if this is how he treats you.

Sorry you're having a bad day :-(

I know it must be so scary to think of trying to get him to leave, but hopefully you will be able to find a solution to the problem of how to ensure your child is safe.

Your post has made me really sad. My DD has epilepsy, and I hope she does not marry someone with such a lack of compassion. I have seen strangers in the street rush to help her, concerned for her welfare. Yet the man who professes to love & cherish you, the mother of his child, shows nothing but resentment. You are so NBU.

If you are the primary care giver for your child now there's nothing to be concerned about regarding that continuing.

Good luck OP.

Thanks HoleySocksBatman
That would be fab as I don't know anyone else who has epilepsy
My DH was fab when I was dignosed and I could not fault him until we had DS.
I really don't think I expect him to do to much.
He goes away with work a lot and is always away a week here and a week there. Lucky I have brill parents who step in to help if I am having a bad time
Just told me a week ago that he will be buggering off to New Zealand and Australia for a month next year.
Kind of makes a mockery of his point that I am not safe to be left
I guess I just want the man back I used to be married too but don't think that will happen :(

Best wishes to you. I hope you can find a support network to help you with navigating your condition the best you can.

You need to make your and your son's welfare your top priority, and don't let your H bully you into thinking you can't do it. Clearly if he's going off for a month there is no actual worry about your capability of looking after your son.

I have epilepsy too.

Good luck with the medication; I've found when trying new meds that it takes a good few weeks or even months to work through the side effects but don't give up. What meds are you on? I take 1750mg Levetiracetam (Keppra) twice a day.

I had problems with work when I had a fit at work but my epilepsy is under control now.

Your DH sounds a bit of a nightmare, he needs to grow up!

The stress from work and your relationship can't be helping.
Hope the medication starts to work some magic soon.

I know this is a bit old but someone asked what I was on.
It's pregbantin.

Are you allowed to be in sole charge of young children if you have epilepsy?? How does that work? My dsis has epilepsy (well controlled with kept a but she still has occasional partial/absence seizures) and had told me that when she has dcs she will not ever be allowed to be on her own with them and her dp will give up work or go part time and she will have a carer and a 'sapphire' nurse.

Reading this thread I can see that obviously some people are capable of looking after dcs so wonder why my dsis is so adamant this cannot happen, I didn't think it sounded right as surely anything can happen to anybody in sole charge of children.