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 have every understanding. I am diabetic since birth and have had some bad hypos. I have every sympathy!

I have idiopathic generalised epilepsy. They do think my seizures start off as partials though as thats why I have the warnings before the generalised seizure takes place.

I last had an EEG six years ago as part of an assessment prior to trying to conceive my first son. I had been seizure free for 7-8 years at that point but the readings still showed frequent abnormal generalised epileptiform activity.

I had an MRI scan 18 years ago during my diagnosis phase which came back fine.

I had a CT scan following this most recent seizure and that too was fine.

Not sure why I didn't put this in previous post, but I meant to say there are epilepsy specific products in home care alarm product ranges now.

Your local council might have a preferred supplier, which could act as a starting point. Although obviously you could go with any that suits you.

Admittedly I still have a mental image of the adverts with the elderly woman pressing the big red pendant button around her neck whenever I think of this stuff, but it's a bit different these days.

Same diagnosis as our children and they too have spikes etc even when on meds.
Have you put weight on or anything else changed? Maybe a tweak in meds is what’s needed. It seems like a good sign that you’ve been seizure free for so long.

Nothing has changed at all - that’s why I’m so baffled. Life has been trundling on as normal and then BAM - it just suddenly happens. I wish there was a reason for it because then I would be able to come to terms with it better, but it’s the nonsensical nature of it which is making things so much harder.

I’m already on a high dose of my medication and seeing as the drug has kept me controlled for 13 years I’m very reluctant to increase it again.

When I was pregnant I had to have my drug levels checked every 6 weeks and with both pregnancies, on more than one occasion my levels came back very low, way below the therapeutic range, yet I still didn’t have seizures.

So why has this happened now?

I just don’t understand it

I know you said you can't see your neurologist yet (I think they should be giving you an earlier appt if possible though) but do you have an epilepsy nurse team? My hospital has nurses available for any queries/help and they have a helpline also, you can ring any time.

It's really good as I find there is a gap for support between something you wouldn't see the consultant for but is too "specialist" for the GP. They also encourage people to ring/see them simply if they want to talk things over or want advise or even need a listening ear.

Perhaps there is something similar available to you? (My epilepsy care is based at a specialist hospital, not my local one, so it's a bugger to get there for appointments but the care they offer including the nurses makes it worth it for me).

Well I work in the same Trust that I have been referred to for Neurology and my Managers have also referred me to our Occupational Heath department so I’m hoping they may be able to get my appointment bought forwards.

I’ve got to be risk assessed at work now as I work with babies so I hope that this factor will also have some weight towards getting my neurology appointment bought forwards.

I only ever saw an Epilepsy nurse throughout my pregnancies but she’s specialised in that role, she’s not a general epilepsy nurse if that makes sense.

To be fair I don’t know what they’d be able to do anyway even if I did speak to one.

I imagine I’m going to be sent for another EEG and then all clinical decisions will be made based on that?

My DH has adult onset epilepsy. I haven't particularly changed my behaviour around him...I certainly don't supervise him like your DH is suggesting. He's very good on self care and would never bath/swim/do DIY if he was alone. He's been well controlled for a year now. I think it's natural in a way, but your DH is over reacting and it's not helpful in keeping you positive and forward looking IMHO.

How did your husband manage when he had seizures whilst home alone? Did he just come round and understand what had happened and take himself off to bed to recover? Did you ask that he call you to let you know?

I’m also worried about injuring myself in some way and nobody being home to be able to help

Do you like dogs? What about an epilepsy alert dog?

One of my friends pet dogs has trained itself to alert to their ds’s seizures. It’s amazing.

Probably a crap suggestion unless you actually want a dog :)

Of course he is going to be concerned. But it is ridiculous of him to stay. If you do decide to stay with your mother .... what more does he think he can do? My mother had epilepsy throughout my childhood. We don't talk but it has absolutely nothing to do with epilepsy. It made her no less able to manage and if that included arranging extra childcare she was still "in charge" and did not need handling as though breakable!
The care alarms are great. My friend (43) has one due to her high fall risk. Really reassuring for her, if barely used

Queen I have had seizures alone and have managed to call my DH afterwards (I don't know how long afterwards as I sleep immediately after). If it's a relatively minor seizure and I'm fully recovered, uninjured and alert etc it's just an FYI call. If I'm clearly not with it (last time I thought it was the 90s ) or injured he comes back ASAP. Once I knew I'd broken a bone but was I with it so I met him at hospital.

However. I'm very resistant to help and stubborn about being independent, to the point of foolishness really. I also don't have young DC (mine are teens/adult). I think that might change things for me, but it's difficult isn't it, your DH can't be with you 24/7.

I'm reluctant to say this as it is scary and very unlikely, but I do worry about the longer than 5 minutes and having to call 999 scenario. That is my biggest fear, but the unlikelyness (sp?) and the fact I simply can't be accompanied every single minute means we just have to get on with it.

The risk of head injuries we have mitigated by covering sharp corners etc, but one of the advantages of young DC means you probably have this already sorted recently my biggest fear was having a seizure before my DCs exams and them being late/missing them but this didn't happen and I worried for nothing. Again we mitigated this by my DH ringing the DC beforehand to check all OK (under the guise of saying good luck!)

Perhaps on the specific epilepsy forums people might have some good advice/ideas, (like the epilepsy dog here! Never thought of that!). Is there a time of day, eg morning or evening you are more likely to have seizures? If this is the case your DH could maybe to look to change his work patterns?

Perhaps the risk assessment at work may be useful. Do you think it will have any impact on your job? I'm sorry I don't really have any advice, just wanted to share how we deal with it. It is difficult isn't it. I never appreciated how difficult epilepsy was, ignorantly I just thought people had seizures and didn't know anything about post ictal stuff etc.

I'd address it with him from the point of view that if he can't trust you to make your own decisions about your own health, then there are some serious issues to be discussed moving forwards.

If it will make YOU feel happier staying with your mum, then do so, but don't set the precedent to appease your DH - he has to trust that you KNOW when you have a seizure coming and you will call your mum / him / an ambulance, and that the children know what to do.

Haven't read the full thread (hate people who say that). Though, I see you saw your GP - did she change your medication or suggest sending you for epilepsy treatment review by a neurologist? I work in a neurology practice a lot and have done for 30 years or so. You would be best advised to ask your GP to send you to a neurologist for review of your treatment so this doesn't happen again (Not least, you want to be able to drive. If you had a tonic-clonic seizure in the daytime, the DVLA should be informed and might want to stop you driving for a while). We do get quite a few people who had epilepsy when younger and up til now well controlled who suddenly get a seizure. Usually their medication is altered in the hopes of stopping it happening again.

Thanks everyone for your continued advice and support.

bluebluezoo - I’m not a dog person at all If only there were such things as Seizure Cats

I’ve got my neurologist appointment in 3 months. I’m really reluctant to increase my dose as I’m already on a high dose and I really can’t be doing with increasing side effects etc.

The good news though is that after a good heart to heart, my DH has now agreed to go tomorrow and me and the boys are going to my mom’s house.

That’s great - you worked it out. I’m really pleased for you.

I completely get that the ‘what’s changed?’ Frustration is doing your head in but maybe nothing has moved and you had a rare seizure. I’m hoping it’s a one-off, triggered by goodness knows what and it’ll be another 13 years before the next.

I think the unpredictability and the seemingly random (or even cruel) timing of seizures is one of the hardest things to cope with - but talking to a friend, loved one or support line always helps ime.

I hope your DH has a good trip and you get some pleasure from being with your mum.

Hi OP. I have had epilepsy all my life and have lived alone for the last 20 years. I have had plenty of seizures on my own but thankfully have never done any serious damage to myself. A few bruises alright but I can cope with that. I have come thru to find myself in some weird positions and it might take me a few minutes to realise what's happened but that's been the worst of it.

Hopefully your partner will come around and get used to the situation. Also from your point of view hopefully this is a one off

@Queen. Sorry been out all day... My DH would be asleep if he'd had a seizure alone, later he'd phone me. He'd be talking nonsense so I'd know he was post ictal.

Just checking back in. Glad you’ve worked it out with your DH, OP. Let’s hope you get everything sorted.

I wonder if it could be hormonal? Apparently our cycles change a bit every seven years (or something like that). Either way, I hope you get it sorted.

Thanks writer - he’s currently rushing around packing his suitcase whilst I sort out the boy’s breakfasts.

When I get my seizure warnings they always come on within 60-90 minutes of me being awake and so far, so good.

My mom is really looking forward to us going to stay with her and I will admit I’m looking forward to spending some quality time with her too.

A happy ending for all of us I think.