Can anyone identify with this?

[JaneC]

My daughter had some sort of generalised seizure while I was at work the other day. I'd asked her in the morning if she was ok because she was tuning out a little when I was talking to her. She said she was but now says she knew she wasn't right.

She says it's kind of like a "protective" thing where she knows something's up but she can't express it, almost as if, if she doesn't talk about it, it isn't happening.

Has anyone else experienced anything like this? I'm struggling to get to grips with it x

 

[no.guru]

Hi, Jane.

What I know is this condition can put a person in places mentally they've never been, and never would have gone otherwise. Her thoughts were probably just wandering while you were talking and it's understandable that she would be preoccupied.

It sounds like she's being open with you, so please appreciate how tough that must be for her. She's having to accept something - having seizures - she almost certainly doesn't want to on many levels.

 

[JaneC]

Thanks for your reply Newsbot. I do understand this is hard for her (it's hard for all of us). I was just trying to find out if anyone else experiences what she does. If she's like this and is planning to go out, do I tell her I think she has a seizure coming and advise that she stays home? Or just let her carry on as normal? Will she even listen to me?

Are there other people here who have warning signs that are spotted by others? If so, how do you react if they someone says something? I only want to help in any way I can.

I don't think it was a case of her thoughts wandering when I was talking to her. It was like a switch being turned on and off. Instinct told me it was seizure-related and I was proved right.

She hurt herself when she collapsed. How do people live with the knowledge that next time it could be their head they bash?

Apologies for the thoughts spilling out, as a family, we have a lot of health issues to deal with.

 

[Chaz1]

My Son 26 has E and T/C and all kinds of partials.

Before his last T/C which took a day and a half or auras to come on, he had very strong déjà vu the Wed morning, then all that day he felt off and I was him so could see he was not fully himself, bit agitated, next day he was still feeling sensations, pins and needles from the inside out :-(, and Thursday afternoon when he arrived at his Grandma's and sat down, 5 mins later the T/C hit.

As much as I wanted to, I could not wrap him up in cotton wool for a day and a half waiting for the T/C to hit or not...Later the next week, he said to me Mum (as I sat there crying, yes wimpy me his Mother) I’m not ashamed to have E, nor to have a seizure, nor am I scared of it, they take me down for a few minutes and I spring back, it’s been a long road to get him to this point I might add, was diagnosed at 23 so we been working on lifestyle (enough sleep, keep stress to a min, not easy when u a student and working) diet, introduced various supplements to help keep side effects of meds at bay and this one is KEY, Neurofeedback/Neurotherapy and therapy, these have helped him more than I can express in this short feedback.

What I notice, is that in fact we notice more than he does if something is brewing, I think because it takes a long time to really get to know that your body and the fact that your body may already be warning u of upcoming seizure,, he is 26 but in my books (and in fact) he is young and being in prime of life makes u feel u can do anything...

he may feel unwell, have tummy upset, look pale, be agitated or the very opposite, so positive he sounds like he is on a high....then bam, T/C takes him down.

So what we all do now, is if we see he is slightly off, we will tell him so rather than ask him and we will ask him to keep in touch and to be very aware, but still a seizure can hit out of nowhere and yet, they must live their lives, they absolutely must get out and life like anyone else, for today we have and tomorrow we don’t know..And they should not live in fear, but of course not put themselves in the dangerous situations...
but they have to live thier LIFE IN FULL as best they can and yes we might worry ourslef sick and shed the odd tear, but we should support them in this, hard as it is..

a mother who understands u..

 

[no.guru]

Thanks for your reply Newsbot. I do understand this is hard for her (it's hard for all of us). I was just trying to find out if anyone else experiences what she does. If she's like this and is planning to go out, do I tell her I think she has a seizure coming and advise that she stays home? Or just let her carry on as normal? Will she even listen to me?

Are there other people here who have warning signs that are spotted by others? If so, how do you react if they someone says something? I only want to help in any way I can.

I don't think it was a case of her thoughts wandering when I was talking to her. It was like a switch being turned on and off. Instinct told me it was seizure-related and I was proved right.

She hurt herself when she collapsed. How do people live with the knowledge that next time it could be their head they bash?

Apologies for the thoughts spilling out, as a family, we have a lot of health issues to deal with.

No need for apologies. I know it's tough for everyone to deal with.

I can't address all of your questions - insomnia here, but not much longer - but as for how someone deals with it... In my experience you just do what you can. For me, there's been plenty to learn, and I would love to say what hurdles are ahead for anyone. I learned to simply remain in bed when a seizure happens because otherwise there will be a fall with injury. Bashed head a few times, with scars, and I expect that's common. Luckily a good percentage of mine are at night.

Possibly your daughter has absence seizures, or partial seizures when she is unable to speak?

 

[Nakamova]

Hi Jane --

It IS tough worrying about the physical damage a seizure can do, and the risks involved are real. It must be especially hard for you to watch one take place. As someone who has had quite a few tonic-clonic (grand mal) seizures, I can reassure you that there is no pain during them, and no memory of the pain afterwards. There are definitely post-seizure aches and pains to deal with -- sometimes quite serious ones. The skull is remarkably tough though, and can take quite a bit of thumping. For me, the most lasting damage has been to a shoulder that has dislocated repeatedly. (Other folks may have more or less serious injuries to report). The calculation for what to worry about is different for each person, and it's important to balance the worrying against the need for independence.

If you are an observer, and you see what appear to be warning signs that your daughter is "fading out", it can't hurt to ask her about it or to try and intervene in other ways. In some cases, you may not be able to keep it from progressing. But there are instances I've read about where a strong intervention -- like a shout or a touch -- can "startle" the person, and prevent the seizure from going forward. In my case, I don't get any warning auras or signs, I just launch right into a grand mal, and there's no opportunity to stop it.

Even better than stopping a seizure after it has started is preventing it in the first place. This can be done traditionally by using medications, but it can also be helpful to identify and eliminat potential triggers. You might want to encourage your daughter to track her seizures and look for patterns -- common triggers are fatigue, low blood sugar, dehydration, food sensitivities (caffeine, alcohol, MSG, aspartame, gluten), hormones, and environmental stressors (like flashing lights).

Best,
Nakamova

 

[JaneC]

Thankyou all so much for your replies and sharing your stories. Chaz, I really appreciated your take as a parent. I do understand what you mean about not wrapping them in cotton wool etc. Strangely, I think I am finding this harder to remember now that when my daughter first had tonic-clonics a few years ago when she was 11/12. Perhaps it is because she is out and about on her own more now. We have always tried to be very matter-of-fact about things and not transfer anxieties on to her and will have to keep working at that.

Newsbot, yes I guess she has a lot to learn and is only just having to deal with this again, but this time as a young adult, not a child. Hopefully we will all learn along the way. Yes, perhaps she is experiencing absence seizures in those circumstances ( she's already had TCs and what I think are simple partials, so why not add to the set?) but how long do they last? What was happening the other day literally last ed a couple of seconds.

Nakamova, my dad had epilepsy so fortunately I had witnessed seizures before my daughter had any and it wasn't quite as scary as it might have been. She previously said that she didn't have any warning before her earlier tonic-clonics but now seems to think differently. I guess I just have to put the what-ifs of physical injuries out of my mind as best I can. There currently seem to be definite triggers in her case: definitely alcohol and lack of sleep and possibly stress as she has just finished exams. The sleep and alcohol issues are obviously something that's "easy" to do something about. Unfortunately she has just turned 16 and temptation sometimes gets the better of her. She isn't currently on meds but is waiting to see a consultant, so we'll see what happens.

Thanks again to all three of you, I appreciate your help so much x

 

[Bathtub]

There currently seem to be definite triggers in her case: definitely alcohol and lack of sleep and possibly stress as she has just finished exams.

:agree:

The sleep and alcohol issues are obviously something that's "easy" to do something about.

Yeah, right. So simple, and so difficult. Where's me soapbox gone?

Unfortunately she has just turned 16 and temptation sometimes gets the better of her. She isn't currently on meds but is waiting to see a consultant, so we'll see what happens.

I'm in that waiting queue with you Jane, Great to hear your story. I reckon there should be a separate section for parents of teens/young-adults cos our issues now are so different to when they were little. You launch them and you have to stand back, but as soon as they seem to be goofing it, you naturally want to rush back in... sooo hard to watch them make a beeline for the same old, same old, stoooopid'obvious mistakes.

 

[valeriedl]

Alot of times I don't know when I'm going to have a seizure but someone else will, my husband is really good at doing this.

He tells me that I'll get pale. Sometime's I'll get a little dizzy/confused feeling, I really don't know how to describe it. Sometimes I'll know it's going on but sometimes I won't. If my husband will notice that I'm doing this and ask me if I feel ok and that's when I'll realize that I don't and tell him. If I do know that I'm doing it I usually don't tell my husband while it's going on because I don't want him to get worried, after I fell back to normal I will tell him that it happened. I don't know why I do this but I just do.

Alot of times too I'll have trouble talking. I know what the other person is saying or asking me. When I answer I'll know what I'm saying but it isn't the same thing that's coming out of my mouth. I'll have trouble figuring out what words to say. I have this problem in general, but when I'm starting to have a seizure it's alot worse than normal.

 

[Maidenminx]

I'm fairly new to seizures but one thing I've found myself doing is telling people I'm more ok than I am. I'm so tired of seeing worried looks on everyone around me. I will tell people when I know I'm really going down.
When people tell me I shouldn't do something I get quite annoyed because I don't attempt anything I don't think I can do. My hubby won't let me ride a bicycle. He's worried my jerks will send me into traffic or my limbs will decide not to work.
As for worrying about hurting yourself, well, your daughter has 2 choices. Live in fear and do nothing or accept that anyone can be hurt when leaving the house.
She really needs to stop drinking. She's young enough that if she can get over the peer pressure or the desire to drink now, the social stigma of being a non drinker before it becomes a bad habit. I'm not saying she's on her way to alcoholism, I'm just saying the sooner she can get this trigger out of the way, the easier live will be for her.