Dating someone with epilepsy - do you have advice for me?

[N Sperlo]

Hey AW.

I think it's great you're taking the time here to learn to be the best for your guy as you can.

My wife had known about my epilepsy since we started dating. It was six years, four living together, before she had ever seen me have a seizure. This was possibly, but probably not my first tonic-clonic seizure. The worst part was waking up to my wife scared and crying. Clearly she couldn't control that, but it hurt the most. I think you're already doing what you need to be. Just be there to support him and not let the epilepsy bother you.

Keep it up.

 

[AW1220]

Thank you. So far it's been going well.
How has talking to her about it gone? Talks with my boyfriend have been slow as I'm trying not to push him. I just wait for him to bring it up.

 

[acshuman]

Dating

AW,
You are doing the right things!! Your BF is going to see how much you care, and because of that care he is going to feel VERY comfortable with you. This is going to make him feel as though he CAN tell you things that he considers very private. When he sees this you will become a very important part of his life!

ACsHuman:twocents:

 

[gymrat827]

It is embarrassing and/or unsettling to have someone observe a seizure. They your body do something you cannot control. I've felt this way even when even my mom has observed a seizure and we are very close, so never think that your boyfriend is questioning your relationship if it happens he wants to take a break from some aspects of your relationship. Be there to support him, and to give him room when he needs it.

spot on advice.

sometimes he may ask for help, others me may not want it. its tough being in a spot when you really need it, but do not want it all the time.

also just make sure he isnt on Keppra. He may have some mood swings that are rough/tough and he doesnt mean to be that way to you.......it just comes out that way. He'll regret nasty or mean things he does afterwards, but they will come out in the heat of the moment.

Just trying to tell you a bit of what my wifes gone threw.



GL girl, glad your coming to a site like this to be prepared for things that could come ahead.


Hats off to you:banana:

 

[Hunter Dave]

I know that when I was having seizures , I felt all alone , no friends , nothing but people are stupid when young . After I got healthy and the seizures stopped and I built up my Self Esteem and Confidence I never looked back . That being said , being there for someone with Epilepsy will mean the world to them because even if they don't act like they feel alone or afraid they do and it comes back sometime with each seizure sometimes . You are a Blessing to them , and you Will be Blessed for this .

 

[AW1220]

I can't thank everyone enough for taking the time to give me advice and insight. It means so much to have a community like this. : )

 

[Hunter Dave]

We are all glad that you're here . Keep us posted .

 

[N Sperlo]

How has talking to her about it gone? Talks with my boyfriend have been slow as I'm trying not to push him. I just wait for him to bring it up.

The line of communication is 100% open in our relationship. We are both comfortable enough with my epilepsy (and her health issues :roflmao: ) that we don't have to worry about upsetting each other. Then again, we will be married five years this year. Also my seizures are completely controlled right now, so that drops the stress level as well...

You're the only one here who knows your man, so deal with things as you feel comfortable. ;-)

 

[aimeerhiannon]

My boyfriend also has epilepsy. He started having seizures about 2 years ago though managed it poorly. We've only been dating since the start of the year, but he has had six tonic-clonic seizures in that time (that we know of, and who knows how many or how frequently before hand), with the most recent on the 5th of this month.
He was embarrassed about the first one and apologised, but I made it clear that it's not a big deal, in the sense that it's beyond his control if he does have a seizure. It won't make me walk away and I will do what I can to make sure he's healthy. He's been to the ER twice since then, and he gets grumpy if I call an ambulance because of the cost, but I just can't get him up, down the stairs and in the car to drive him the short distance to the hospital by myself.
We're learning together and I think he's thankful I take it so seriously as I have been able to tell the doctors exactly what has happened, and I'm trying to find a new GP that will take it seriously and I will be chasing up his referral to the neurologist this week. We do talk about it a lot, and sometimes I get really sick of talking about it, but he wouldn't have a clue otherwise.

 

[acshuman]

Dealing With a BF or GF Who Has E!

A person who has E can have a set of feelings that others may feel is very wierd! The big thing is YOU have to respect their way of thinking. If they don't want to be taken to the hospital when they have a seizure, DON"T call an ambulance. You need to learn whether or not it is necessary yourself. If you can learn how to handle your 'friend' during a seizure, you are going to build up trust much faster than if you call an ambulance because you don't feel capable of handling the situation. It could actually be that calling an ambulance could cause a loss of trust in the person who calls for the ambulance.
I know from experience that I don't need an ambulance when I have a seizure.
The biggest problem for me when an ambulance IS called is the cost to me. I have gotten bills even if I have refused to be taken to the ER. The ambulance company still wanted to be paid for responding to where the seizure occurred. They didn't want the full amount, but I felt it was still asking for too much!
Try to think of ALL of the possibilities before calling an ambulance. Don't rush into making that choice, because it may NOT be the correct choice according to your 'friend'.onder:

ACsHuman:twocents:

 

[gymrat827]

A person who has E can have a set of feelings that others may feel is very wierd! The big thing is YOU have to respect their way of thinking. If they don't want to be taken to the hospital when they have a seizure, DON"T call an ambulance. You need to learn whether or not it is necessary yourself. If you can learn how to handle your 'friend' during a seizure, you are going to build up trust much faster than if you call an ambulance because you don't feel capable of handling the situation. It could actually be that calling an ambulance could cause a loss of trust in the person who calls for the ambulance.
I know from experience that I don't need an ambulance when I have a seizure.
The biggest problem for me when an ambulance IS called is the cost to me. I have gotten bills even if I have refused to be taken to the ER. The ambulance company still wanted to be paid for responding to where the seizure occurred. They didn't want the full amount, but I felt it was still asking for too much!
Try to think of ALL of the possibilities before calling an ambulance. Don't rush into making that choice, because it may NOT be the correct choice according to your 'friend'.onder:

ACsHuman:twocents:

not proud, but ive gotten into phyiscal battles with the paramedic's & police.


many, many times.

 

[acshuman]

Physical Encounters

The only time that I have had a physical confrontation with a public official was 42 years ago. I was attending college and I had gone out on a Friday night with some friends. We had just left a bar in a small town. While I was walking down the sidewalk I had an Absence seizure. I stopped in my tracks and was staring straight ahead, according to one of my friends. The local sheriff was driving down that street at the same time and he saw me standing there appearing to him to be 'spaced out'. He stopped his car, ran over to me and started yelling commands to me, Well, because I was unable to respond because of the seizure, he called in his 'backup'. He had four deputies throw me to the ground and 'cuff' me. When my friends saw this, they ran over to the sheriff and told him that I was NOT on drugs, I was having a seizure. He had his deputies remove the 'cuffs' from my wrists and let me stand up. The problem was that he was swearing at me the entire time because he was NOT going to get credit for an arrest! He spun away from me and walked back to his cruiser. My friends said that they could see steam coming from his ears while he was walking away, because he was so 'pissed off with me'.:clap:
If this is what we can expect from supposedly 'highly trained' cops, what can we expect from untrained people?
I keep in contact with the Police Chief here in the town(5500pop) that I live in. I call him whenever I learn about some new facts about E. If any of his officers ever have any questions about E he just sends them to my house and I try to explain to them what they may have a question about.
I definitely know that every cop on the force knows where my house is located!:clap:

ACsHuman:twocents:

 

[gymrat827]

The only time that I have had a physical confrontation with a public official was 42 years ago. I was attending college and I had gone out on a Friday night with some friends. We had just left a bar in a small town. While I was walking down the sidewalk I had an Absence seizure. I stopped in my tracks and was staring straight ahead, according to one of my friends. The local sheriff was driving down that street at the same time and he saw me standing there appearing to him to be 'spaced out'. He stopped his car, ran over to me and started yelling commands to me, Well, because I was unable to respond because of the seizure, he called in his 'backup'. He had four deputies throw me to the ground and 'cuff' me. When my friends saw this, they ran over to the sheriff and told him that I was NOT on drugs, I was having a seizure. He had his deputies remove the 'cuffs' from my wrists and let me stand up. The problem was that he was swearing at me the entire time because he was NOT going to get credit for an arrest! He spun away from me and walked back to his cruiser. My friends said that they could see steam coming from his ears while he was walking away, because he was so 'pissed off with me'.:clap:
If this is what we can expect from supposedly 'highly trained' cops, what can we expect from untrained people?
I keep in contact with the Police Chief here in the town(5500pop) that I live in. I call him whenever I learn about some new facts about E. If any of his officers ever have any questions about E he just sends them to my house and I try to explain to them what they may have a question about.
I definitely know that every cop on the force knows where my house is located!:clap:

ACsHuman:twocents:

I have been tased......shot by the gun that zaps you by a woman cop.

 

[valeriedl]

I've had epilepsy for 13 years, had my first seizure when I was 27. The guy I'd been with saw me have my first seizure a grandmal. I ended up in the hospital for over a month because they couldn't get the seizure to stop. He left me about a month after I came out of the hospital because he didn't want to deal with everything he had to do.

I started dating my now husband a year after that. I told him right from the start I had epilepsy and what my seizures were like. I had my first seizure, a border line grandmal, in front of him about a month after that. He really didn't know what to do so he called my parents and they told him. They said that if I didn't come out of it in 5 minutes to call them back and we'd go to the ER. Well I did end up in the ER and my parents thought for sure he was going to break up with me because he saw what I was like. He told my mom he wasn't going anywhere because I was great.

He started going to my neuro visits with me after he saw me have that seizure because he wanted to learn as much as he could. It took years to figure out what meds worked best to help control my seizures, I'm still having them though. He saw what all the side effects were of all the different meds I went through and was able to answer questions that the neuro asked because I couldn't. He also asked questions because he wanted to find out if the things that were happening were normal or not.

I have seizures in public and he has to do things to help and keep me safe. I had one recently in the grocery store where I just sat down in the check out line and just wouldn't move. He had a heck of a time paying for the groceries, getting me off the floor, hanging on to me so I didn't wonder off while he pushed the cart out to the car then getting me in the car and strapping my seat belt on. Luckily I was out of the seizure by the time we got home so he didn't have to try to get me up the stairs into the house.

I can go on and on about the pubic seizures but we always get a laugh about what I did during them.

Sometimes I think that my seizures are worse on him than they are for me. I'm blacked out but he sees everything that happens. A good bit of the time I didn't even know I'd had a seizure, he'd tell me that I did.

 

[Cetacean]

Hello, everyone!
I have been dating my boyfriend for about 6 months. He told me before our first actual date that he lives with epilepsy. This morning at 5am I woke up to him having a nocturnal grand mal seizure. This was my first time witnessing it. It startled me at first since it woke me from a sound sleep, but once I realized what was happening, I stayed calm and moved stuff away from him. I let him finish and once he came to I tried my best to show him it was OK and that I accepted it as a normal thing in an attempt to lessen his embarrassment as much as possible. (He had recently told me having a seizure in front of me is something he "never wants to do to" me.)
I started researching all over the Internet to find more information so I can be the best supporter I can be for him. I was hoping that any of you would be kind enough to give me some advice about how to be a great supporter to him. What is something you think I absolutely need to know? If you live with epilepsy, what would you appreciate or need from your supporter? If you are a supporter, what do you do to help your loved one?
I appreciate any advice you can offer me.

Please understand that he may have hidden seizures besides the obvious grand mal seizures, and that in any case both the seizures themselves and the post-ictal confusion can cause lapses in attention and irritability. Please don't think him disdainful if you find this going on. He is trapped inside.
The behavioral side effects of my seizures have contributed handsomely to the mess of my family and social life.
Thank you for being the sort of person who proactively seeks understanding as a foundation for your love. The wisdom and compassion you show warms my heart.

 

[acshuman]

Having Someone to Speak With About Your Seizures

AW1220 is doing something that most people who have E need. She is trying to find a way to become the type of person who 'is always there' when her BF needs someone to talk to.
This can be extremely important for many people(LIKE US) who have E. We all need people who understand us and care enough to provide this 'luxury' to us!:twocents:

ACsHuman:hugs:

 

[AW1220]

Thank you all! I really appreciate your kind words and insight. I am so thankful for this community!