New here & needing advice

[mikah_george88]

Hi everyone:hello:. I'm Michaela & my husband has epilepsy. He had his first seizure in 6th grade.

He just had a seizure this last Sunday, October 28, 2012.
This was the first seizure I have seen of his & although I knew what to do, it still scared the crap out of me.
His last one was about 6 years ago & we have been together for 4 years.

We were at church when he told me he was about to have one.(his body seems to give him enough time to react)
I managed to get him to lay down quickly enough to where he didn't fall so he didn't get hurt.

Anyway, I need advice from people who have been in my situation, where their loved one has had a seizure.
Everytime I close my eyes, I see it happening all over again & it hurts me all over again.
I've talked to him about it, but he can't help much because he doesn't know what happens or what he looks like when he is seizing.

What do I do to help myself get over it?
Of course I kind of babied him that day, and I know I can't coddle him & prevent him from going about like he usually does, but I still want to. I am worried he will have another one and I won't be there...He can't drive for 6 months according to our state law. We have 3 kids & I'm worried now about him watching them if I have to run out...
I'd like to just act like it never happened & go back to normal, but how do I do that??onder:

I just don't know what to do:dontknow:. can someone help me please?

 

[Rae1889]

Your husband seems like he has great control of his seizures. it could have been a fluke of what caused this seizure, triggers sometimes add up and then there is nothing that can prevent it from happening. Things like being hung over, over tired, hungry, overwhelming smell (like incense), caffiene etc. You do not need to worry about your husband. and you do not need to worry about his ability to watch your children. He is still the same man he was the whole time,before this seizure. Both you and him knew a seizure was a possibility.

What you need to do, if you havent already, is teach all your children how and when to call 911. If they see daddy fall down (or mummy even) they go to the phone and press the buttons. If they are young, around 2 years of age, you can teach them in sing song. One that I have heard used is (while pointing to the buttons on the phone that match) 9-1-1 green 9-1-1 green. i sing this song cuz daddy needs help. he fell down and cant wake up. (then you teach them their name and address.) teach them to call from the home phone too, because if they call and hang up after the song, they have enough time to trace their location.)

 

[mikah_george88]

I appreciate that advice, but it still doesn't help what I'm feeling...

 

[Autumn Breeze]

Have you talked to him about how you're feeling?

My seizures are new to us. My husband and I have been together for 13 years (wow!) and I'm pretty sure that he's more afraid of them than I am. I can't say that I blame him! I've never seen anyone have a seizure, unless you count when I went youtube-ing after I experienced a seizure.

I think it's normal to feel scared, and to flash back to the moments that scare you. Again, talk with him. Talk with a therapist! And I agree with Rae, teach your children seizure first aid so that everyone knows what to do next time. Knowing what to do, and practicing can make it less scary. But I don't think anyone here can say anything to make you feel better, we can just tell you what has helped us or our partners.


FWIW, I always appreciate the pampering while I'm recovering, even if I have to be reminded to 'sit the fk down and rest' lol

 

[Nakamova]

Hi Michaela, welcome to CWE!

I do think tonic-clonic seizures can be harder to witness than to experience -- they look so dramatic and scary. Of course you want to help and be there for your husband. But he will be all right even if you aren't there. I've had just under 20 tonic clonic seizures. The majority of them occurred with no-one else around. I'm not saying that seizures aren't serious -- they are -- but you can't wrap your husband in bubble wrap and be with him every possible moment of every possible day, no matter how much you and he would like that. Your response is completely understandable. The anxiety is normal. It will subside over time, just be patient and matter-of-fact in discussing the seizure with your husband and how it makes you feel.

 

[Cardones]

Hi Michaela

Sorry that you and your husband are struggling with this. I haven't witnessed a friend or partner having a seizure, but I did have one in front of my Mum once which totally freaked her out so I know the impact watching someone you care about having a seizure can have. We were out walking the dog when I had mine and even the dog got upset and stopped hunting in the undergrowth and apparently sat by me whining till I had finished getting jiggy with it on the ground. Both Mum and dog probably found the whole episode far more traumatic than I did – as far as I was concerned I had just blacked out and came round with a headache, a sore tongue, and some incomprehensible questions whilst staring up at the sky with my mum and a spaniel looking down worriedly at me.

I imagine seeing the first one will be far scarier than seeing any further ones so the first point is your feelings are probably just the initial shock of seeing something unpleasant you have never seen before happen to someone close to you. I suggest you research as much as you can as to what is actually going on in the body during a seizure and why it cause certain things you can see e.g. clenching jaw, eye behaviour, excess production of saliva, colour of face, jerking etc. All these things are caused for a reason and understanding what is happening can help something appear less scary.

Perhaps make an appointment with a doctor on your own to have it explained to you to make a seizure seem less scary – remember in the olden days people used to think seizures were the result of being possessed by demons! Now that we know it has more to do with brief temporary bursts of activity in the brain rather than anything to do with the underworld, seizures are less scary than they were to our slightly less informed, albeit imaginative, ancestors.

Also, your husband, as someone else has said, appears to have his seizures v well controlled overall. The annual risk of him having a seizure is probably low, so you have to remember the risk of a future one also happening at a specific time when it would be dangerous to him or someone else, such as your kids, is even lower. Added on to this, he appears to have some warning of an impending seizure which gives another level of security that he may have a few seconds to make himself or others safe before a seizure. All these factors come together to make it very low risk that he will have a seizure that puts him or others at risk of harm. There are far more serious risks in everyday life to worry about! I bet he doesn't freak out every time you get in a car even though there is probably more risk of you being hurt in a car accident than him having a dangerous seizure.

While I don't mean to play down the seriousness of seizures, or that they can cause injury, it is important to remember that seizures themselves are very rarely dangerous and are most often harmless to the sufferer. There will always be a risk in everything in life, someone I went to school with died from CJD disease after eating a burger, but as long as no unnecessary risks are taken, the odds are heavily in your favour that your husband should be absolutely fine and you and your family will have a normal happy life!

Just one thing, while this is clearly a very traumatic time for you, try not to over-protect your husband. When I had my seizure I actually found my Mum's attitude far scarier than having the actual seizure – she used to never leave me on my own, stopped me from doing things she thought were risky for inducing another seizure, if I ever looked unwell she would freak out I would have another seizure which in turn would panic me, and she really tried to wrap me in cotton wool. Not saying you are anywhere near that extreme, but bear in mind having a breakthrough seizure could be very depressing and anxiety inducing for your husband so best to not make it worse by treating him as an invalid, as he isn't one.

With some education on seizures, by asking questions here and of your doctor, you'll be able to come to terms with your initial shock and will be able to move forward and have a safe normal life together.
All the best.

 

[Flowerchild]

Hi Mikah,
I am so sorry to hear about your husbands seizure and what you are going through. Seizures are very scary to witness, especially if it's your first one to see and experience. I am saying this with being my husband's caregiver to his epilepsy for the last 20+years and back then he also told me what to do, but you do not know how you are going to react until it actually happens. I would always be calm and do exactly what you did then freak out later after he was out of danger. You did everything correctly by getting your husband to the floor safely and getting anything dangerous out of the way and the seizures would run their course and take care of him after. First and Foremost, you are reaching out to this incredible forum with very loving and caring, smart and supportive people to talk to and that is so important. The Epilepsy Foundation nor this forum, Coping with Epilepsy was not around when my husband Spence and I first started out. I remember feeling so alone in my little boat in the exact moment it was happening. Also, talking to friends and family and having a supportive network that can also help you with taking care of your husband and children before, during and after the seizure is very important. I would also keep an epilepsy journal for him for his seizures, this comes in handy when you have to recall information when talking to the Neurologist. You are in my thoughts and prayers and feel free to ask me any other questions. I would love to help in any way.
Renee

 

[mikah_george88]

Thanks you all for the advice.
Slowly I am beginning to not feel as weird about his seizure.
I'm not as worried about him either. Of course I will probably still check in on him occasionally to make sure he's sleeping enough and not too tired.

I will be going with him to his dr appt when it is scheduled and hopefully his dr can help reassure me in my concerns.

 

[Flowerchild]

I have to say it's hard not to worry when it comes to Epilepsy. In the process, just remember to take care of yourself, that's very important. Hang in there, day by day. He's very lucky to have you and vice versa.
Renee