To not want to be suffocated just because I have epilepsy.

[QueenofmyPrinces]

AIBU - genuinely don’t know if I am.

This potentially has a long back story so I’m just going to keep it brief but will answer any questions if people want more information.

Background is that I was diagnosed with epilepsy when I was 16 and for 7 years I had 3-4 seizures a year until finally obtaining control.

Anyhow, over the last 13 years of being seizure free I got my driving licence, have got married and also come through two complicated pregnancies with no change to my epilepsy status.

Sadly, two weeks ago, for no reason at all, after 13 years of being seizure free, I had a seizure at work. Needless to say I am devastated that it’s happened.

My AIBU though....

For about 6 months my DH has had a trip to Germany booked which he is due to go on next week. He will only be gone for 48 hours and it is something he has been looking forward to going on for so long.

He said that because of me having had that seizure he is no longer going on his trip because he doesn’t feel it’s right that he would be leaving me so soon after it happened. He would basically be worrying that it would happen again and I would be on my own.

I will say that I get warning signs before my seizures, sometimes the seizures comes about 30 minutes after my warning signs but sometimes the seizures doesn’t occur for hours later. They never just happen out of the blue.

I genuinely do understand why he’s concerned but my mom has said that me and the children can go and stay with her for the two days so my DH can go away and feel assured that I’m not on my own.

I thought this was a great solution but my DH is still refusing to go because he doesn’t think it’s right. We’ve had various heated discussions about it and I have told him I don’t want to be mollycoddled or treated any differently and that I just want our lives to carry on as normal.

He’s also supposed to be taking our eldest son away for a week in October and he now says he going to cancel that too because he doesn’t think it’s right that I will be on my own.

I have told him that I’ve had epilepsy for 20 years, I’m going to have it for the rest of my life and I can’t live my life feeling suffocated.

Yes I have epilepsy, but that doesn’t make me ill. I can’t handle the thought of being treated like I need some kind of 24/7 care.

He seems angry with me because I keep telling him to still go on his trip next week. He thinks I’m trying to get rid of him and doesn’t understand why I’m not flattered by him willing not to go so he can stay and take care of me.

I have told him that I don’t need looking after but he just doesn’t get it.

AIBU to feel like this??

But on the other hand - I love my DH very much and I know it’s out of concern that he doesn’t want to leave me. He’s never had to deal with my epilepsy before because when we met I was already controlled so maybe I need to give him some leeway? Just because dealing with epilepsy is old news to me, it’s very new to him so maybe I can’t expect him to want to deal with it in the same way I want to?

I don’t know.

I hate arguing with him and I will apologise to him if I’m being too harsh on him. I just want life to carry on as normal.

I’m very sorry, OP. I fee for you because I also have epilepsy, it’s also been controlled for a long time, and I also met my DH after it was controlled. So while I haven’t had another tonic clonic (I have absences fairly frequently despite the meds) since having met him, I can completely relate to this. I also imagine my DH would act the same way.

Did your DH witness the seizure? I’m my experience, people who witness it are really very shaken up (excuse the pun) and find it takes a while to reconcile what they saw with the person you usually are. It sucks, but it’s common. And you’re right, your DH is doing this because he cares.

However, you are also right: you know yourself and your body and you know how to live with having epilepsy and the restrictions it can bring. I don’t think you’re being unreasonable to ask him to trust you. Particularly as you will be staying with your mum when he goes to Germany.

Perhaps find some articles online about independence, or written with a partner of someone with seizures in mind? Perhaps that might help get through to him, as clearly both of your emotions are running high.

There’s no right or wrong answer here. You are both reacting how I would expect, and that conflicts. Try and be kind to yourself and try and have a conversation with him about your feelings behind this; how it’s hard having a seizure again after all this time and how it’s important you maintain your independence. That while you understand his reaction, you also need for him to trust you.

I’m sorry you had a seizure. You are confident that you’ll be fine. Take a second to think about this from your dh point of view. He is likely really, really worried about you. If you haven’t had seizures for years then he’s never had a chance to get used to it. This is new and scary to him. I’d treat him as the one that needs a bit of TLC if you feel strong and confident. Let him look after you for his own peace of mind. Hopefully there won’t be a next time, but if there is, he will have a frame of reference and not smother you so badly.

Just re-read and see your seizure was at work. Did he witness the post-ictal stage? That can also be distressing, depending on how you recover. I take hours and sleep the whole time, and am generally very disorientated.

I would say he got to me about an hour after the seizure finished.

I was post ictal for about 5 hours - I didn’t sleep but I was a bit confused and in laa-laa land. Maybe he feels guilty that he wasn’t with me when it happened and so doesn’t want to risk that happening again.

It must have been very distressing for you, especially after being controlled for so long. I would wager that if there is a long back story which you refer to, it may have some bearing on how you and your DH both feel. On face value, I wouldn't think think either of you are BU, just reacting to a difficult situation.

I'm slightly different in that I have adult onset epilepsy which appeared after I met DH, so it wasn't on our radar at all. First we knew of it was when I had a tonic clonic completely out of the blue in front of DH. Although your DH knew you had epilepsy before, actually seeing the reality is different, I think. I know my DH was terrified and the post ictal stage also scared him as he worried I had sustained permanent "damage" (clumsy wording, sorry) and didn't know if I would return to "normal" (even clumsier wording!)

My DH also was very scared to leave me alone after that, and I think it is an understandable knee jerk reaction, especially when it's so out of the blue. What helped was the medical staff talking to us both, and making sure DH knew what to do (when to call 999, recovery position, key safe etc). It did take a few months for DH to not worry so much when I was left alone, but my seizures aren't controlled atm and have happened since so it has become our new normal, so to speak. It has forced us to just get on with it and resume normal routines as much as we can. If it was just the fear of waiting for a reoccurrence it may have been different perhaps? I don't know if any medical staff could speak to your DH, to help him feel less "worried". Practical reassurance might be beneficial.

That's on face value. However a couple of things do jump out from your post - if you will be with your mother, he needn't worry about you being alone? Why doesn't this "reassure" him, why does he feel he has to be the one with you? Is this related to the back story?

Also this "He seems angry with me because I keep telling him to still go on his trip next week. He thinks I’m trying to get rid of him and doesn’t understand why I’m not flattered by him willing not to go so he can stay and take care of me" actually made a little annoyed on your behalf. Although my DH was shocked and worried and very anxious after my seizure, he never would have made it about him. Your DH being angry with you for not being grateful enough to him here seems very unreasonable.

I think on the surface, both of your reactions would be understandable, but looking at it more closely there perhaps are some other issues at play, and the "potentially long back story" you mentioned might have some bearing here.

I might be way off the mark of course It's a difficult situation. I absolutely understand your desire for independence and as little "drama" as possible and the resumption of usual life. I also think as the one primarily affected, your DH should be respecting your wishes. Fine for him to express his worries etc, but I think he should respect your experience and support you to deal with it the way you want to.

I hope it works out for you. I understand the "suffocation" thing - being judged unsafe and needing someone to "supervise" you swimming for example and not being allowed to drive yourself etc. I actually find the loss of my independence harder than the physical issues. This is a bit of an essay already though so I'll stop! I hope you manage to get a resolution with your DH.

If this is your first seizure in 13 year did you get a warning this time?

I think you are both right here. You are absolutely right that you can't be wrapped in cotton wool for your entire life. But you've had 20 years to know your epilepsy and although you've been with dh during that time he's never had to adjust to the realities of what it can mean.

Would he compromise? Miss the Germany trip to spend more time at home and adjust in his own mind but then he has to agree to take eldest away?

Is a practice man? Is he calmed by things like epilepsy alarms etc and if he works through practice things would it alleviate any of his concerns?

My OH has epilepsy...he's had it since childhood. Like you OP he was seizure free for a long while (7-8 years) until February this year when out of the blue (he usually has "warnings* ) he had the worst one I'd ever seen (been together 15 years). It landed him in hospital for the first time ever. When he came home I would constantly check on him if he was out of the room. It all came to a head one day when he was in the bathroom and I asked if he was ok because he'd been a while to which he replied rather angrily "can I not even have a shit in peace now?". At that point I broke down and cried. He apologised for his tone but I could see where he was coming from. Afterwards we had a long chat. He understood why I was mithering him and I totally got how that made him feel. Maybe you and your OH need to talk about his fears and your feelings of being smothered especially as it was the first time he'd seen the effects. Remember you have dealt with this for a long time but for him it's unknown territory. The more you talk to him about it you might find the less worried he'll be.

Neither of you are being unreasonable. I understand him being terrified, and I understand you wanting to continue living life.

I would be tempted to pander to him for a bit, let him see you’re okay, and then if he’s still suggesting you’re never alone again suggest counselling to get over his anxiety!

Ah man I'm so sorry you've had a seizure after being seizure free for so many years. Genuinely hate epilepsy.

It's different, I know it is but my son has epilepsy and it scares me so much. I literally do not leave his side, I stay within 15 mins of school ( when he has rescue ) which means I pretty much stay at home, I also sleep with him. I'm coming to the realisation that actually isn't very healthy and that I need to chill a bit - but as someone who has a loved one with epilepsy I know how hard it is to let go.

As I said completely different, and my child is just that .. a child. But I empathise with him as I do you, massively. It would feel claustrophobic to me also. So I don't think either of you are BU.

For his peace of mind could you have a back up plan, say for example I've arranged with so and so that if I feel one coming on he/she will come over and make sure I'm ok...

X

Hope you are seeing gp and get sent for review of meds. Take him with you and get gp to reassure him. Go to your mum, don't stay home alone. This probably affects ability to drive/insurance, theyvusually have a period after which they say ok again. Use that as marker for scaling back concern? He can't protect you all the time. Good luck.

Thank you everyone for all your thoughts and advice.

Yes I did get warnings before this seizure but I ignored them. I was too scared to consider that after 13 years seizure free I was going to have one, and so I just carried on and didn’t say anything to anyone. I was having my warning signs for about 7 hours but I tried to pretend it wasn’t happening because I couldn’t bear to accept what was happening.

I have been referred to a neurologist but it is a 3 month waiting list so I just have to hope everything is ok until I see him.

Things have calmed a little, I have told DH that I don’t agree with his choice not to go, that it isn’t necessary etc, but that I accept it’s his choice to make and that I can’t control how he reacts to me having had the seizure.

How old are your dc?

My oldest is 5 and my youngest has just turned 2.

We have done a lot of teaching with our 5 year old about what epilepsy is and how to call 999 and what to do if “mommy falls over and won’t wake up” etc.

I will admit that being a parent with epilepsy does unnerve me.

I know there are millions of parents out there who have epilepsy but it’s new ground to me and in some ways it does make me nervous.

I feel for both of you.

Why not tell him you'll be staying at your mother's for those nights anyway, so whether he wants to go to Germany or stay at home on his own is up to him? Make sure you stress how much you appreciate him saying he'll stay, but you really don't want the responsibility of him missing something he's been looking forward to on your shoulders, so you're removing yourself from the equation.

I think it's great you've admitted it also unnerves you.

Good news is you still get the warnings. So would dh come up with an action plan you are both happy with?

I also imagine there's a part of you is determined not to allow epilepsy to define you and so you are fighting against dh not wanting to leave you?

My ds has neurological episodes. Not seizures from what we can tell but also not entirely sure what they are. He gets warning too. He's 15. I've only just started leaving him alone but the deal is texts every 1/2 hour and if I contact him and he doesn't respond (and he's fine!) he's automatically grounded for a month! I never relax when he's alone but also understand he needs his freedom. I think the worst thing is he's home alone - I'd feel more comfortable if he was in public where there's people. (But he's autistic and doesn't go out)

We do have an action plan on what to do if I start getting my warnings but I just hope we never have to put it into place.

The thought of having a seizure whilst at home with my 2 year old really scares me.

I’ve probably had about 20 seizures in total and only one of those occurred when I was home alone - the others happened when I was at home with friends/family, at school/college/uni or out and about in the general public.

I was wrapped up in cotton wool as a child because of my epilepsy and I felt the same through my teenage years until I left home and it depressed me and made me angry. No one quite understood despite being very sympathetic until I met DH who also has epilepsy. He gets it totally and we have a little drill where if he's in when I have a seizure he just makes sure I'm comfortable and keeps an eye on me until I sleep it off. We tend not to discuss it as analyzing it just depresses both of us. It's led to things being cancelled over the years but we've learnt to live with it and be thankful for each other.

I was a nightmare when I was a teenager because I completely rebelled against all the restrictions that were out upon me. I knew my parents and grandparents were just worried about me but it was stifling.

They used to ring me all the time to check I was okay, and if I missed their call they’d turn up at the door, either letting themselves in or banging on the front door to check I was alive. I know it was due to worry and concern but it just got so hard to live with.

When I was 18-19 I started drinking alcohol, again just out of rebellion, fighting about my condition, refusing to let it dictate my life and that obviously led to seizures. I also got very lax with taking my tablets, sometimes not taking them for weeks, and so obviously that would lead to seizures too.

It was only when I started University that I began to calm down, take my diagnosis seriously and take steps to ensure my condition remained as stable as it could.

In the last 13 years I have hardly drank any alcohol, I maybe have one glass of wine every 3 months or so, I don’t go out to places where there may be flashing lights and I don’t have late nights. I make such an effort to take care of myself which is why this sudden seizure has really effected me.

It’s been two weeks since it happened now and I still can’t make any sense of it. I haven’t sent my driving licence back yet, I can’t bring myself to do it because it’s breaking my heart.

I obviously haven’t driven and I have informed the DVLA of my seizure but I can’t bring myself to actually send my licence back. It took me 7 years to actually get my licence (due to breakthrough seizures occurring which meant I kept having to send back my provisional) and so now having to surrender it is a bit of an emotional struggle.

As a parent of two children with epilepsy my guess is your DH is frightened, as others have said, its a scary thing.
We try very hard to resist the urge to wrap in cotton wool and often have to grit our teeth - but the mental health impact of restricting their lives needs to be balanced against the risk of seizures. They need to feel as confident and independent as you clearly do in order to accept, live with, and deal with their epilepsy, including seizures when they do happen. It’s really hard. Really hard.
Would your DH speak to someone; a therapist or one of the epilepsy helplines?
You need to deal with this together if you can - that means admitting your fears, putting what mitigations you can in place, and then getting on with your lives.
I wish you luck, strength, resilience and effective drugs.

Having had periods where I have been seizure free for quite a long time there is nothing more heartbreaking than the next time you have a seizure no matter what type. DH has been seizure free for quite a long time but still views it as one day at a time as his seizures have fluctuated from a couple a week every week to one in five years so we both support each other and try not too think/talk about it too much.

Just saw your last post and am so sorry for the emotional impact - but of course you too are unhappy and baffled. One thing we’ve learned with epilepsy is there is no rhyme or reason (well, I guess there must be but no-one knows what it is).

I don’t want to wag my finger but you know what you need to do about driving. There is help available and the epilepsy charities are great at advising what support is out there.
Have you thought about talking to someone about the impact of your seizures? It is bound to be a blow - practically and emotionally.

What would you advise a friend to do in your situation?
I do understand your heartbreak and I really feel for you - but you’ve come to terms with this before and I’m sure you and your DH can deal with this together. Good luck.

When I went to see my GP after it had happened I told her that I keep going over and over and over in my mind why the seizure had happened after so long without one.

She told me that epilepsy is so very unpredictable and that when a person goes a long time without a seizure they begin to believe they are cured, whereas in fact epilepsy can never be cured, it is always there and it’s just a case of going through life simply waiting for the next seizure to happen.

She said that to go 13 years without one is fantastic (especially considering I was fine throughout two problematic pregnancies) and I should stay focused on that positive but at the same time I needed to come to terms with the fact that this day was always going to come. She said all I can do is hope that I won’t have another seizure which I guess is true.

This breakthrough seizure has really bought me back down to earth.

I have just had a little heart-to-heart with DH about how I feel about my epilepsy coming back and what scares me about it etc so I do feel like we have bonded a bit more over it and opened the lines of communication somewhat.

This sounds so tough. I'm sorry.

A thought occurs to me, do you currently have a home care alarm? Do you think it might help give you all a bit of reassurance without you ending up feeling restricted and suffocated? You don't have to be elderly or under social care, anybody can get one, and the costs can be pretty low depending on the package.

There's all kinds of stuff to go with them now, not just the little pendant to wear around your neck (and you can usually get a wrist one instead), but they do fall detectors that you wear on your wrist, they look a bit like a Fitbit type gadget really. If it detects a fall then it activates and the call centre tries to contact you, if it can't get a response then it takes the next steps in your plan.

Sorry if I'm explaining things you already know, it just popped into my head as something that might help or be worth exploring to get some peace of mind without unnecessary restrictions being placed on you.

I have heard of safe care alarms but I have always thought them to be issued to the elderly who live at home and who are at risk of falls. I guess I was wrong, lol.

I will look into them - thank you for the suggestion.

Well done on the heart to heart. And I’d agree with your GP about a 13 year clear run - that’s amazing (I dream of such a stretch!) but of course as you say, it’s the bump of having a seizure. It’s always like stepping off an emotional cliff - but you’ve already been seizure free for the two weeks since so fingers crossed it was a glitch. When did you last have an eeg/mri scan?

Do you have a particular diagnosis or is it idiopathic?