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Prprin5e55

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Hi all,
4 weeks ago my 21 year old boyfriend had his first seizure. It was a grand mal and since he has had 2 more; the last one on meds. All of them he was playing video games. I love this man so much but I have never experienced anything like this, never gave it any thought that anything like this would or could ever happen and am having an extremely hard time coping. I am in constant fear of when it's going to happen, that it's going to get worse, of it happening in his sleep, of our kids having it. The fear has gotten so bad for me that I can't sleep with him or even feel at ease around him. I want to be able to be ok and just don't know what to do. Someone, anyone, please help! He is the most wonderful person I have ever met and I do not want to lose him to this!!
 
Hi Prprin5e55 (is that purple princess?)

I understand your fear. Would you feel the same if he had heart disease?
My precious daughter at the the age of 14 had her first seizure. She is averaging about 3 Tonic Clonic seizures a month now. I hate that it hits her the most when she is at school, and that she has to deal with those that don't understand what or why she is going through this.

I think you need to take some time to learn more about the disorder. That has been my lifeline. This isn't about you. Is it going to happen again? Most likely yes, if he has had more than two. Is it going to get worse, perhaps yes, perhaps no. Hopefully he has a doctor that he in engaged with and he can talk opening with. I hope as well that he has the determination to keep searching for reasons as to why it hit him at 21 years of age. He was healthy for the first 21 yrs, so help him to regain that balance.

Stress is a huge trigger, so it would be wise not to put your fears on him, and turning away from him at this time is extremely hurtful. I see that in my daughters eyes, when she is tells me of friends that are no longer supportive. I think you might take some time to figure out why you are reacting so negatively to this disorder. I can't stress how knowledge of the disorder will help you. That will help you to know what to do. He will need someone to go to the doctors with him, and to remember what was said. He will need someone to patch him up if he has a rough fall.

If he is a wonderful person, he deserves to be held and told that HE is not this disorder.
He is still the same person he was before the seizure.
 
Hi PrPrin! I have to agree with Robin...also, you said that each time he was having his seizures, that he was playing video games. Some of us are sensitive to triggers like strobe lights, and even cartoons and video effects. It MAY be something he wants to talk to his neurologist about. As for you, try keeping calm. He's having a hard time dealing with this, I'm sure...and if you get panicky about this, it's just going to make him upset. Get information. Read this site. There's a lot fo good info here. But remember..he hasn't changed. He's still that same wonderful person you met and fell in love with. Think of it this way.....how would you be reacting if he just found out he was diabetic? You'd be getting information, and trying to be supportive. It's the same with seizures. Get information, and then be supportive. There's alot of us here that are more than willing to listen and answer questions. Feel free to ask. Just remember though, he hasn't changed. My husband saw me have a seizure (grandmal) when we were dating. I thought he might turn tail and run...but he didn't. :) We're still married, and yes, I still on occasion have seizures.
 
Fear makes us afraid.
Knowlege disarms fear.
The more YOU know the better control you will have.

Begin with the basics

http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

Has your boyfriend seen a doctor? If not, GET HIM THERE ASAP!

If so have they started medication? Make sure he takes it as prescribed. AED (antiepileptic drugs) must be kept consistant in the blood.

If he has had every seizure while playing video games, then he HAS to curtail the amount of time he spends playing. SET TIME LIMITS! He may be photosensitive.

Now what can YOU do? Find a local Epilepsy support group and join. Keep the lines of communication open. Epilepsy is NOT a death sentance. Sure we may have to make changes to accomodate this condition, but that doesn't mean we have to be a SLAVE to the disorder.

You are scared. Think how he feels. I'll be he's just as afraid as you! New stuff like this throws our plans right out the window. The trick is not to let to overwhelm you. You are stronger than you think! And you can deal with this if you really love him.

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Hi Prprin5e55, welcome to the forum. :hello:

The anxiety/fear of your loved one having seizures can be overwhelming. I've been through that ringer before with my wife when she was having uncontrolled TC seizures once a week (TC = tonic clonic = preferred name for grand mal seizure) during the daytime and falling and hurting herself all the time. It was rough!

The #1 best thing that can be done to reduce the stress and worry is to get the seizures under control. From your post, it sounds like he is either developing a photosensitivity or a different form of reflex seizure to playing his game(s).

Either way, the simple solution is to stop playing the games. The brain has plasticity - it learns/adapts. It can either learn (or be trained) to have more frequent (or severe) seizures (a process called kindling) or it can learn how to avoid seizures (with EEG neurofeedback or CBT). Stopping the video game(s) that are triggering the seizures is, IMO, a "no brainer".
 
Hi Prprin 5E55. I am also new to the forum. My fiance has epilepsy. Last week I saw him have a seizure for the third time. It is very scary. So far the best thing for me is to be informed about epilepsy. Also, to let Josh know that I am here for him and not going anywhere. It is scary enough for him so I am trying to work on not getting frantic around him about the epilepsy. I want to be calm and collective so he is not having to worry about me as well as his body. Make sure your boyfriend is seeing a Dr and taking his meds. Try to find someone you can talk to. If you do not have a local support group, just talk to us!
 
Welcome! Hope you learn something and it helps you understand more about epilepsy.

I have to agree with much of what has been suggested. My wife knew nothing about my case until I had a grand mal right in front of her. Soon after that I had a shunt revision operation. It was quite an awakening for her but she stuck by me all the way. It might be a difficult decision but find out all the facts before you make it, IMO. Fear, most of the time, is as a result of lack of knowledge of the situation.

And, as has been suggested, being relatively new to the situation, I am sure he is just as scared of his condition as well as losing you! Stay beside him. You may be surprised how much you will learn and how that knowledge, between the two of you, can bring you even closer together.
 
I think that part of the fear is the helplessness that you feel when he has a seizure. I do have to say that you have been given some excellent advice here. Some video games are actually putting a warning on them that they should not be played if you have seizure disorders.
 
:hello: Prprin5e55!

Glad to have you here at CWE!
Seizures can be scary, especially
when they're being provoked by
something that one's doing that
they love to do! Unfortunately
the hardest part is having to as
stated, setting the time limits or
withdrawing from it.

Does he have a Neurologist or an
Epileptologist? If not - then one
should be arranged so an EEG
could be performed and get to
the bottom line of everything.
 
Hi, my name is Teresa. I'm kinda new here to. So welcome. What you are going through is tough. I am single and have epilepsy. There are a lot of guys out there that don't want to "take me on". That's ok. Just whatever you do. Be honest in how you feel. Just don't make him feel bad for what he has. It's not his fault. K?The epilepsy foundation has lots of groups to learn. Atleast here in WA state.Just a suggestion. I am really glad you are here.Teresa
 
I'm sorry to hear about you're boyfriend. I'm 21 years old and was diagnosed with epilepsy last year. I expierence grand mal seizures as well and some of my friends are scared to hang out with me as well. They still care about me and have stuck with me and have learned what to do and how to handle it. They are a lot more comfortable around me now, it just took time for them to get used to. They said it still scares them when it happens but not nearly as much as it did. Keep you're hopes up. It takes time to find the right medication and sometimes it takes a combination of medications.
 
Hi princess,
I think you've got all the possible best replies already from each person who replied you so far. Here are my 2 cents...
My child started seizures also recently & I love him more than anything else in the world - needless to say. When this seizure started, DESPITE all the constant fear, feeling of insecurity, feeling sad, miserable etc etc etc. THE FIRST THING MY BRAIN SAID IS "HE NEEDS ME NOW MUCH MORE THAN HE WOULD HAVE EVER NEEDED SO FAR"! & I don't see any difference between comparing my child's situation versus your boy friend - though they both differ in age, they both need so much help and infinite moral & physical support during & after seizure.
That view should help you feel at ease when you are around him, rather than when he is away. When my son is with me, I am glad I am right with him to take care, when he is at school I am more restless.. any ph call from his school, I literally freak out for moments until I hear that he is safe. LOL...
Hope you feel better.
Take care,
Amy
 
My opinion stays though. Don't stay because you feel like you have to. But , no matter what you decide to do ,be honest and keep in contact. It would be good to learn more and be close. But be strong. And things will work out the way they are suppose to. Teresa
 
You are already his hero

I was 20 when I began my seizures and my wife has been my hero more than a couple of times over the last 26 years.
By you sticking by him, you are already his hero. It is apparent that you want to help him and stay with him. That support will be vital for him while he makes the adjustments to this challenge.
Some important points:
1. As stated by others, make sure you are seeing a quality specialist with epilepsy experience. In my early years, I was treated mostly by my family doctor and probably had more issues than were necessary.
2. Though I am obviously not an expert, my personal experience has been that having developed E later in life, my children have had no problems at all. They are all in their 20s now with no signs of E.
3. Prepare yourself for some possible side effects of the medications. Some can really alter people's moods. Just ride it out and remember the one you love is still there. If the meds cause stress, help him find appropriate ways to vent. It is not always easy, but I have gotten pretty good at channeling any anger away from those I love. Just remember that sometimes it might be the meds talking.
4. This is not a roadblock for him, only a bump in the road. He can still live a full life even with the E. I have completed two college degrees since my E started and have had a fairly successful career. There is even a US congressman who has E.

BEST WISHES FOR BOTH OF YOU
 
If you don't want to lose him I say go to a class together. This sight is good, i have a son with it, I have it, my brother , If you want to really stick with it go for it. As far as sleeping in the same room PM me maybe we can talk. I know it feels weird at first.But I have had guys question me about that. My prayers are with you girl.
 
Thank you everyone for your help. Things are getting a little easier, the only problem I am having is the fear of being alone with him. He lives with 3 roommates and I have my own place and it makes him really upset that we never stay at my house anymore. Although I know what to do in case it happens again, I still feel so scared of being alone if it does happen again. Another question of mine is, being that he has his seizures only while playing video games; even on meds, could that be the only time he will have seizures or will it happen anytime, anywhere? He has not yet had one in his sleep but will he??
 
Have you ever thought about going to the neurologist office with your boyfriend? my husband has some trouble understanding so i take him with me so he can ask the neurologist questions...

love
angel
 
Prprin5e55 said:
... Another question of mine is, being that he has his seizures only while playing video games; even on meds, could that be the only time he will have seizures or will it happen anytime, anywhere? He has not yet had one in his sleep but will he??
Click to expand...

I answered your other post, but the answers are:

yes, yes and maybe. He may only ever have seizures while playing video games, he might start having siezures at other times (including during his sleep).

Seizure patterns can (but don't necessarily always do) change over time.
 
Another thing you might consider is to take a Red Cross preparedness class. It teaches you what to do in any emergency. Just think... the life you save might not be your boyfriends, but it might be someone you don't even know. You could ask them questions about what to do in an emergency. Then again... there is always 911. EMTs are some of the best people on this earth.
 
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