AIBU to think epilepsy is a knob and can just fuck off?

[Epilepsy]

After a few years of being relatively stable, my epilepsy has gone haywire recently. I can’t identify any especial triggers other than being late 40s and my cycles have become more irregular this year so I think that’s probably the culprit. Anyone else in a similar boat or would just like to vent?

I am relatively fortunate in that I only have nocturnal epilepsy so am allowed a driving licence and don’t have the of risk of drop injuries etc but the last few months (and especially the last few weeks) have been really hard. I have had so many plans I have had to reschedule or cancel completely in recent weeks - including having to cancel seeing an adult DD living away from home which was really disappointing for both of us, letting other DC down (again) on commitments we made, missing medical appointments, missing a weekend away, missing a tattoo appointment etc etc. My DC still at home and my DH are worried about me and I’m worried about them worrying about me! I absolutely hate feeling like a burden and I hate hate hate being reliant on others.

I am also sick of injuries, on top of other stuff, this week I have pulled my hamstring and fuck me, it hurts and I’m so frustrated to be laid up again. I’ve also bitten my mouth badly and it really hurt to eat the whole 125gm bag of peanut M and Ms I have just finished despite it hurting I currently take Lamotrigine, Keppra (which is why M and Ms are like crack to me) and Clobazam has just been added, I think this dose can be upped and my care team are really really good, but I am so fucking fed up with the uncertainty and worry and physical pain and constant constant disappointment and unreliability and the effect on my family not just me. (I’m also really hot right now and desperate for a shower but I can’t which isn’t helping)

So AIBU to think epilepsy is an twat and can fuck off, and would anyone else in similar circumstances like to have a vent?

FFS I didn’t mean to enable voting

Oh and the bag of M and and was TWO POUNDS FORTY NINE PENCE.

Fuck off

Yes it can feck off, just when you think it’s been years since a seizure, bam they start again.

Y are definitely NBU. It’s a constant constant worry. Don’t suffer myself but have an old school friend who has it. Despite her epilepsy being well controlled overall, she gets side effects from the meds and lives with constant low level anxiety. She has never been able to find or hold down employment despite having a Masters, volunteering etc. and now she’s in her 50s she has the joys of meno as well. All she can do is live as well as she can.

It is shit isn’t it @WonderDays are you in a similar boat?

@CountingMareep I feel for your friend, the side effects are awful. It’s sometimes hard to tell if they are side effects of the meds, or the epilepsy (I have a lot of inter ictal activity atm)

I’d love to know who thinks I’m being unreasonable (now I am even more annoyed that I didn’t dis-enable (what word am I after there?) voting. WTF.

Disable. Obviously

FFS. I need more M and Ms. And a shower. And someone to swap the HDMI cable on my TV.

I agree it is rubbish. Have you explored hormonal options? I know not everyone is convinced they are related but anecdotally I have seen improvements with people using contraception / hrt. A friend found being pregnant gave the most relief but did think the downsides of having lots of children were not worth it for a few months of relief - though she was tempted 😁

I can sympathise OP, it must be awful.

My friends DD has up to 20 seizures a day and I’ve seen the toll it’s taking on her. My DB lost his licence for a year when he was first diagnosed.

DS had a seizure 3 months ago, can’t work because his medical is now suspended, and cant drive (learner) for minimum 6 months. And helpfully the fit clinic claim never to have got a referral so his life is literally on hold.

It all just sucks!

@handmademitlove im going to ask about HRT, to be honest I take so many different meds (other condition too) I really don’t want to add more and want to know if increased Clobazam can control it without adding more. I’ll see what neuro say.

@Minfilia how frustrating for your DS. Can your GP speed up the referral or can you choose another hospital? DVLA/licence hopefully should be straightforward if he doesn’t have another.

My sympathies. My neurologist told me that things could change for me during menopause/as I got older, so that may well be the culprit for you. I’ve always been controlled and also nocturnal seizures with no issues through two pregnancies. But I had lots of problems during my third and although life did get back to normal and is essentially still fine, I can drive again etc. my epilepsy I’m aware of more than I ever was before. I get weird turns that could be too much meds, too little, just weirdness of getting older. The uncertainty of it is hard. I started wearing a medical id braclet recently which I’d never felt the need for before.

I don't know much about it but my BIL came to the UK and paid privately £££ for surgery. This was 7 years ago with inheritance and not a seizure since. It was life changing for him. Is it a viable option and can/will they do it on the NHS?

Next step is GP I think so he can see what options he has, as he was told that the hospital has to make the first fit referral. Thank you for asking 😊

He’s 19, just started his ideal job as cabin crew, and had a seizure less than three months in and now isn’t allowed to fly. He isn’t getting paid and his driving test has been cancelled. It’s so rubbish.

I know that pales in comparison to a lifetime of it though.

It’s awful and even if you are seizure free, no one can really understand the fear that you could go at any moment. It’s such a weight to bear, I really feel for you.

Mine is changing too and I’m mid 40’s so the cycle is definitely a factor.

I think surgery is only available/suitable for a very small minority of cases @itslikethis the cause of my epilepsy (adult onset) is unknown

@Minfilia how frustrating for your son - esp at the age of 19! I actually think that's harder for him at his age to wait on things like this. I hope he gets answers asap - The "unpaid" could be a whole other thread isn't it, employment (or lack of) for people with disabilities and their carers is shocking.

@Himawarigirl and @SisterAgatha the uncertainty is just awful isn't it.

I think the weather is making me more down than usual as I want to be out in the sun! Also, my cat usually sleeps on me and she sometimes comes up to my chest if she senses a seizure coming (my neurologist told me this could actually be genuine as I assumed it was woo/coincidence!) but she's been sleeping outside in the heat and I feel like I've lost my companion! I often sense DH watching me when I'm half asleep and I know he worries, so between that and the heat we aren't doing so well!

Yes yes yes!!!! Epilepsy can F off!!!

I'm interested that you mention m&ms. I've been taking keppra for for a year now and am definitely craving sweet things. Though when I started on it I was told that it might reduce my appetite. No chance!

Huge sympathies to everyone suffering. Being unable to drive is awful. I feel like a child 😥

Who is voting YABU, who is cheering on the Epilepsy???

Oh @BerfyTigot (good name btw ) the Keppra is definitely the culprit for my sugar craving! I was never a "sweets" person, preferred crisps and cheese etc so it's been a change! £2.49 a pack though, that can fuck off too

(Also wondering who on earth thinks IABU and why they don't want to post to explain that POV? Odd)

Have you tried cenobmate (probably spelt wrong). Heavy titration period and shit side effects but rave reviews which balance them out. My neurologist thinks it's the most effective med since keppra - but overall better tolerated. I got mad keppra rage. But yes, terrible. I've knocked back about 15 clobazam this week.

I agree wholeheartedly. Not me, but DP has uncontrolled adult onset epilepsy. He's had so many incidents as a result of the focal impaired awareness seizures he has. We feel completely disheartened as no-one can seem to improve control despite trying multiple different regimens.

Yup. Mine have started up again (similar age) and I’m just fed up with it. Plus the people who go ‘yeah but you look okay’ or ‘but you’re smart’. Like that has anything to do with it!

I don’t think Keppra has made me crave sweet things but I am on the a very low dose. I was worried about the anger issues as I have plenty of those already but so far so good!

I get the “you don’t look like you’re ill” comments as I’m quite outgoing etc, but to counter it, i also find that people with epilepsy have the most uniqueness as well, so it’s not all bad news x