Incontinence with seizures.

[Freda]

My daughter (33) was recently diagnosed with adult onset epilepsy. She has had four tonic clinic (grand mal) seizures in the past five months and many partials. She taking Keppra and the dose is being adjusted accordingly - she's now on 750mg morning and night. Since being on this new dose for a week she had another TC today, the first in eight weeks so the Keppra seems to be starting to work - she's been taking it for eight weeks and this is the first TC since then, only partials before today.
Obviously she's devastated she's developed this and is convinced it's been brought on by her dads terminal cancer diagnosis in February of this year. Her biggest fear is of becoming incontinent during a seizure, which so far hasn't happened. Is this something that may come on later or is it something that generally happens at the beginning? - also could her dads diagnosis have brought on her epilepsy if it was something that was lying dormant before?
I'm so sad for her because as you all know it really is a life changer, even her drivers licence won't be given back until she's one full year free of seizures, which includes partial seizures.
Sorry for the massive post and thanks for reading.

 

[Daroswene]

Hi Freda,

During the grand mals I've had, I've always expelled urine. I think it was one of the main signs a grand mal had happened. As far as adult onset, I'm not sure that her dad's diagnosis brought on the seizures. Is it possible that her vitamin levels were not within normal limits? I know nutrition imbalances can cause seizures.

As far as driving, my neurologists (former and current) have said that even if I were to go six months or a year seizure-free, they still wouldn't let me.

I know it's a lot for her and your family. My first grand mal was at the age of 16 with nothing but children in the house. I get self-conscious about people even seeing a seizure happen, afraid I may scare them. My VNS has helped with the partials and more so since the new neurologist increased the settings.



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[Freda]

Thank you for your reply, I very much appreciate it.

I know adult onset can happen to anyone but wondered if the stress may have brought it on sooner than if the diagnosis hadn't been made, thought it was a long shot tbh.

As for incontinence I thought perhaps not everyone has it, probably just hopeful eh? She works in a hospital and has done so for ten plus years, both in nursing and now secretarial and having witness seizures in the ER thinks it strange she isn't - perhaps yet - incontinent during a seizure as patients she has witnessed seizing generally are.

The Driving Vehicle Agency here says it has to be one year but we are aware it could be longer and if she continues even with partials (dizzy spells with echoes) she may never get her licence back.

How life can change in an instant although she is grateful it's epilepsy and not a tumour, which is what she originally thought.

 

[Nakamova]

Hi Freda --

I only peed myself during the very first tonic-clonic seizure (which was actually two seizures right in a row). This was when I was 35, so my age of onset is similar to your daughter's. I've never been incontinent since in any subsequent seizures.

 

[Highlander]

Basically depends on how full your bladder is, not how long you have had epilepsy:

'Urinary incontinence commonly complicates the end of the clonic phase of a tonic–clonic seizure when the sphincter muscle relaxes in a patient with a full bladder. Urinary incontinence occasionally complicates absence and partial seizures, possibly resulting from a combination of increased intravesicular pressure and loss of cortical inhibition of the micturition reflex.'

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC531654/

Gods sake don't stop drinking though as dehydration carries its own issues as I'm sure she will know working in a hospital.

Regards adult onset epilepsy, 50% of epilepsies begin in adulthood. Stress may possibly have been a trigger, it may just have been the tipping point at a specific phase of epileptogenesis - if that trigger didn't bring it on assuredly something else would.

Stress is a goodie for a trigger but it isn't the only thing. I had a seizure when my Dad died and the private pool I was working at pulled access for 68 pupils from me in the same week. I was trying to rearrange them when I got the news about Dad. I've also had seizures being knackered from working 12hr shifts back to back and photosensitivity when my threshold is already lowered.

 

[Loopy Lou]

I've had seizures with incontinence before, but usually i don't. Which i'm glad for, because my last tonic clonic was in a hotel room, and nobody wants to pay extra cleaning fees onder:

Also, trying to wash sheets by hand when you're post ictal (at home) is not fun.

I don't think i've ever had that problem with a partial or absence seizure though, just with tonic clonics.

 

[rock and roll]

I've had incontinence with both my Complex Partials, and Grand Mals. It doesn't happen every time, so it can be embarrassing when I don't realise it happened until I fully come out of my seizure.

 

[valeriedl]

I had my first seizure 14 years ago when I was 27 and the drs have no clue what brought it on. I doubt if it was stress because my life was very stressful many years before I had that seizure. Stress is one trigger that can bring my seizures on now.

I have all sorts of seizures and I've only lost my bladder once about a year ago during a complex partial seizure. The seizure happened very shortly after I got out of bed and hadn't gone to the bathroom yet so I know my bladder was full. I have them when I'm asleep and when I'm awake at all times during the day and I know my bladder had to have been full when I've had some of those but I've never lost it.

Epilepsy can be a huge live changer, I think the biggest thing for me was loosing my license. I hope the keppra works.

 

[valeriedl]

I had my first seizure 14 years ago when I was 27 and the drs have no clue what brought it on. I doubt if it was stress because my life was very stressful many years before I had that seizure. Stress is one trigger that can bring my seizures on now.

I have all sorts of seizures and I've only lost my bladder once about a year ago during a complex partial seizure. The seizure happened very shortly after I got out of bed and hadn't gone to the bathroom yet so I know my bladder was full. I have them when I'm asleep and when I'm awake at all times during the day and I know my bladder had to have been full when I've had some of those but I've never lost it.

Epilepsy can be a huge live changer, I think the biggest thing for me was loosing my license. I hope the keppra works.

 

[Freda]

Thank you so much everyone for your replies, I have so many worries going through my head and I wish it could have been me who developed this rather than one of my kids. She's being so good about it, keeps saying "How can I moan when dads going through what he's having to deal with?" Breaks my heart it really does.

 

[Sabbo]

I have simple and complex partial seizures. Until 2015, I never had issues with incontinence during a seizure. I expelled urine during a complex partial for the first time that year. I don't do it every time I have a CP, but I have at least 4 or 5 times since. Just to be safe, I sometimes wear liners when I go out.
Not driving was a choice I made while in high school, when simple partials were the only seizures I was having. I had one right before my last behind the wheel practice, & that is when I decided not to take a chance.

 

[Freda]

Thank you Sabbo and I'm sorry to read that happens to you but I think it's very wise to wear a liner just in case. I think my daughter (Carly) won't wear them unless it happens once because she already feels her life has changed so drastically which saddens her greatly at times but I know she'd be sensible and take precautions if needed. Such a game changer for all of us this is, it's hard to watch her go through this, as I'm sure you understand too. We all know things could be worse than it being epilepsy but sometimes that isn't a great help eh?