Partner with uncontrolled epilepsy

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DP has uncontrolled epilepsy for last decade (not from childhood). They have focal onset impaired awareness or complex partial seizures approximately every week. Typically these involve a lowering (not complete loss) of consciousness and strange movements (not falling). Medications haven't worked. Afterwards DP is emotionally distant and has no memory of the event. Several times I have prevented them from serious harm or possibly death during one of these seizures. I hate them and have grown to hate them more and more the longer we have been together. I am so fricking tired of watching out for them, or of relaxing and enjoying something only for one to happen and it ruins everything.....

Oh here we are doing this nice thing together, ah, seizure, ok I'll just save your life, all good, coming round now....right, Carry on! ...

Except I'm finding it harder to just carry on. I want epilepsy to fxxk right off. I feel I am just waiting for the day I get the call to say something horrific has happened.....

Not sure what I'm expecting by sharing this..

I hear you, only it’s my adult son who I care for.

Special days are ruined, either because we’re waiting for something to happen or because it did.

He’s currently on 4 anti-convulsants and still not controlled. It’s the unpredictable nature that seems to make it worst.

Even harder for you though as you didn’t choose a partner with epilepsy.

Do you get any support as a carer?

No support at all. We've just got on with it really.

What type of seizures does your son have? Sounds like it must be very serious if you are taking on the role of carer? I'm really sorry if that's the case.
My DP is still high functioning - big high level job etc. For us it's more that normal life can continue, but there's this ever present risk which we sometimes probably push too far. I've pulled them out of the sea, out of lakes, off bicycles, I've washed soiled clothing, I've wiped up dribble, I've prised children out of arms I've had to explain to strangers why my partner is behaving so weirdly. I've had to explain to our children why their parent is behaving so weirdly.

I don't think we have accepted really that this is a real disability. We are very active people and have always acted like it doesn't matter. But it does. Significantly. And I'm so drained by it and could probably attribute other marriage problems to this underlying threat. Those moments of intense caring I'm required to do, that are then unnoticed by DP because of memory impairment, take their toll. Plus just the risk..... Waiting for the call that says this awful accident has happened....

This may sound crazy but are you sure it’s epilepsy? My friend was diagnosed with epilepsy, not from childhood. She ended up on meds and it didn’t work.

It turned out it wasn’t epilepsy- but the “seizures” were triggered by stress/illness. She was in a high powered stressful job and had previously had a traumatic medical issue needing an operation which they think triggered the seizures as her body didn’t know how to deal with stress.

That's interesting @Believeitornot . DPs epilepsy seems to have been triggered by illness and a knock to the head. Seizures most likely when stressed or tired.
How is your friend doing? Do you know how they discovered it wasn't actually epilepsy?

She is fine now! She basically saw a therapist and did CBT therapy to deal with stress and has to make sure she always gets plenty of sleep, eats well and exercises etc.

Her epilepsy never seemed to be controlled, the medication made her worse in many ways so she kept going back for more investigations.

I can’t remember the name of the condition - let me find it hang on

here

If she got stressed and tired they’d get worse and she’d always be exhausted afterwards. It was a terrible time for her.

My autistic brother has tonic clonics in his sleep. Awful.

Dsd has multiple seizures daily, various kinds too, it's hard work (she's an adult and lives in care with 24 support) . A seizure detection dog might help you keep him safe. Also there was a breakthrough with surgery to prevent them this past week if the right kind

Hi, I have had epilepsy since I was three and am currently the admin of an epilepsy forum. Couple of questions. I’m assuming your DP is under the care of a neurologist. Does that neurologist specialise in epilepsy? I know that we have all experienced delays with appointments due to COVID, but when did your DP last see their epilepsy specialist? Has their control always been this poor or at one point did they have a better level of seizure control? If the control worsened, can you pinpoint what exactly changed?
Im sorry I know that is a lot of questions to fire at you. If your DP hasn’t seen their epilepsy specialist for a while I would get in touch with the GP and ask for a referral. Take along a diary of the seizures indicating the frequency and when and where they occur, along with any obvious triggers. Www.seizuretracker.com is a good site that can be used to to this.
I would, if something hasn’t recently already been tried, investigate trying to improve your DPs seizure control, by involving the medical profession.