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New here, question about seizures and fianc?, please help!!
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amyrmca posted:
I'm new here and I'm looking for some advice. First and foremost please know that if I ever say anything wrong or that you think is meant meanly, I don't. I'm learning about epilepsy and seizures as I go so I haven't learned all the terminology and such yet. So please bear with me and know I don't mean any disrespect in any way. Here is a little back story. My fiancé and I have been together for 2 years. He has epilepsy and often has seizures, which doesn't make me love him any less. Over the last few years I have done everything I can to learn and educate myself. His mom isn't a lot of help to me as she just doesn't want to let him go even though swe are getting married in a few months. Ive been told by her countless times I'm the reason he has seizures and epilepsy, even though he was diagnosed in high school before we met. I've done everything to avoid stressing him out. I very rarely tell him how my day is unless it's been a good one. I walk on eggshells because I don't want him to have one. I do what I can to keep him from having one. His mom is of the mindset that no matter what happens to him it is my fault. He gets a paper cut and somehow she finds a way to blame me. He isn't close to her and never has been, his words not mine, and he has told me that she stresses him out and that basically I'm her scapegoat because she is losing control of him. He told me she is trying to scare and upset me so I will leave and she can be in control. Last night he had a seizure and the next thing I know it's my fault. I didn't do anything to my knowledge to cause this but yet she has somehow found a way to put it on me. So now I'm upset and wondering if I'm really to blame. I love him dearly and want to spend my life with him BUT I don't want to be with him if I'm causing it especially if I'm causing his pain. I didn't know that one person could cause seizures. I don't what to do. Please help!!
Reply
 
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saxofone1 responded:
Hi amy,

YOU ARE NOT THE CAUSE OF YOUR FIANCE'S SEIZURES!!!!!!

You have said nothing that is disrespect to the epilepsy community. For you to get on this site and search for help is a motion of love towards him.

Your fiance's mom sounds like she isn't ready to share him with another woman. I feel she is being selfish in that she blames you for his seizures. Totally stupid!!!! Possibly jealous that her son has found someone to love him(other than herself) who accepts his epilepsy as only a part of who he is.

Yes, stress can cause seizures. But to me, it sounds like the stress is not coming from you. My mom tended to hoover over me when all this started. She continued to do into my adult yrs. She drove me crazy!!! Afraid to leave me alone.

What questions to you have that we can help you with? What type of seizures is he having? Does he require medical attention following them? What meds is he currently taking? Has he ever lived away from his mom/family? There may also be a fear that she doesn't feel comfortable being away from him.

I ask these questions so that I know what you're looking for.

Check the resourses at this site, Amazon.com for reading material or the local Epilepsy Foundation if there is one near you. www. (efa.org. is the website.)

I have had epilepsy since '75. I had brain surgery in '02

Thank you for seeking help for the two of you. Ask away!!!
angie
 
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dancer86442 responded:
Hello Amy,

Welcome to Epland. ??? Are you on the Daily Strength site, also? Cuz, there is an Amy, I Think ;(, posting a similar story.

Amy, I agree w/ Angie! Sooo, keep talking to us. We are Here for You as friends/extended family. If you need to Vent??? Go Rite Ahead! More Questions? We can Help! Support? We are Here for You & Your Fiance! WHOHOO, another Great Person who accepts Epilepsy & wants to Learn More! Listen to your Fiance! His Mom is 1 of the reasons he is Stressed! Not You!!! Why? Cuz, you are treating him as a 'normal' person. Something his Mom can't/won't see. My 1st MIL thought I wasn't good enough for her son either. Years Later, after our Divorce, she told my Daughter that I was the Best Thing that ever Happened to her Son. She was apologizing for the way she treated me. HUGS!

Love Candi
 
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amyrmca replied to saxofone1's response:
Thank you. I'm his first real relationship so I don't think she has ever had to share him. I also think she is competing for him with me. She is very controlling and the whole family does what she says so now I'm in the picture and things have changed. She has done everything she can to drive a wedge between him and I and now her new tactic is to scare me. His family treats him like a child. He is 29 years old and they talk about him and to him as if he is a child. He is the oldest of the kids and his younger siblings tend to be treated better than him.

I have quite a lot of questions. He is having partial complex seizures and i've looked it up but I'm not sure I'm looking in the right spot because I'm not seeing a lot of info about it. He only has them at night when he is asleep. After he has a seizure he is really tired and doesn't remember much at all but seems ok or at least as well as could be expected. He is currently taking Tegretol for them and I'm not sure it's working. No he has never lived away from home and I think his mom likes it that way. She depends on him for a lot of things, almost as a second husband, the emotional support, fixing things around the house.

I looked it up but I'm not sure I'm looking in the right places as I'm not finding much info about it.

My number 1 concern is that although he is taking meds and the seizures don't last long they are becoming even more frequent. When he has one it only lasts a few minutes but now he is having one quite often. I'm concerned that they may start to last longer and become worse. Is that a possibility?

My next thing is, I'm not sure what I'm supposed to do to help him. As stupid as it sounds are there things I shouldn't do or say around him or do I treat him as I would another person.

Lastly, we are going on our honeymoon in August and we are going on a plane. Are there any things I need to be prepared for with him on the plane?

Thanks again.
 
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amyrmca replied to dancer86442's response:
Yes, Dancer/Candi, it is me on both. Lol. His mom is trying to scare me off and I know it. She has never had to share him and I don't think she likes it. At first she was just teeing to be mean to me and be controlling to me but I stopped it and now she is trying to scare me off by using his seizures. He has never really lived away from her and I think she is freaking out. His family treats him as a child. They act as if he is incapable of taking care of his self.

Are there any links that I can look up partial complex seizures at? I looked it up and didn't find much.

Yes his mom doesn't treat him as normal.

Thanks for the advice.

Amy
 
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Haylen_WebMD_Staff replied to amyrmca's response:
Hi Amy!

Here's info you were asking for:

Complex Partial Seizures

At the top of that page is a link to the Epilepsy Health Center where you can find a variety of information about diagnosis, treatment and living with Epilepsy.

(((hugs))) to you as you face this difficult time with your soon-to-be MIL. I hope she can recognize that you have his best interests at heart and are determined to be an informed partner.

Welcome and feel free to ask questions, seek support or vent!

Haylen
 
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saxofone1 replied to amyrmca's response:
Hi amy,

your fiance's mom sounds very insecure. The controlling side of her is afraid of losing someone who she feels should only depend/need/love her. Afraid of losing the live-in handyman. I don't think she is going to be able to put a wedge between you and your fiance unless that's what you two let happen. BTW, what's his name?

My seizure type was complex partial like his. My seizures occurred at all times. I would be crossing the street, talking on the phone, teaching, cooking, etc. I don't recall what happened during the seizure. It was simply lost time. There is no standard time table as to when to expect one. Fatigue(physical or emotional) is quite common following a seizure.

If his seizures are happening more frequently, it is probably time to check his med levels. The levels may no longer be at the theraputic level for him. It may be time for an increase. Once the body adjusts to a certain level(dosage) that level is no longer effective. We all go through such adjustments. This is not unusual. It may be time for a new med. Check with his doctor on this.

Yes, it is a possibility that the seizures could worsen. Mine certainly did over the years. Despite the seizures, I was able to work and live alone.

When you are with him during a seizure use the basic safety tips. DO NOT PUT ANYTHING IN HIS MOUTH, even if he starts to convult(grand mal). Keep the area around him clear so that if he starts to wander during the seizure he will be less likely to hurt himself by tripping/bumping into furniture or things on the floor. If he is holding anything, try to gently remove it from his hands. This will keep him from throwing things and inadvertantyly hitting you or anyone.

When you take a trip , carry all of his meds with you. Don't check them in with the baggage. Have a list of meds,allergies, emergency numbers, doctors on you at all times. Does he have a medic alert bracelet, (www.medicalert.org )? Does he have a pill box so that he can lay out the day before or a week's schedule of meds? Check the local drug stores or ask his doctor for one. Think about letting the flight attendants know of his epilepsy. It is appreciated by them and others.

Epilepsy is still a silent condition that many don't want to discuss. Sometimes family can be the hindrance of it. They live in more fear than the indi who lives with it daily. Still that mystic about it.

You have not asked any stupid questions. You want to know what to do/expect and you have the right to ask so keep those questions coming?

I hope this has helped in some way.

angie
 
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clarinet2 responded:
Amy,
Thank you for posting your discussion because you have every right in the world to learn about your fianc?'s seizure disorder and what to do and what not to do. I hope you can start going with him to his doctor's appointments with his Epileptologist hopefully he has one.
Going with to the doctor you will learn more and more about what Epilepsy is and what our seizures are. I agree with Angie that his mother is very insecure and selfish. She does not want to accept the fact that she is losing her child that she had to protect so much. It is time to speak with her face to face to tell her how much you love her son and how you want to help him live a "quote" normal life without being so protected.
His mother is not going to be around forever to take care of him and she needs to realize that you are a blessing to be in his life. You are asking questions to learn about the seizure disorder without hiding it great job!
There are so many disorders out there like diabetes which involve the person to take care of themselves, but also the loved ones around to help out. If the mother does not grow up and wake up to realize that you are not bringing on the seizures it sounds like maybe the stress from the way his family treated him and of course the excitement of getting married can add to this.
Take one day at a time and if this gets worse your family in-law need to wake up and realize this is the year 2012 not the 1800's.
My mother broke the ties fortunately when I was 22 years old to let me move out on my own even though I had been struggling with complex partial seizures since I was 11 years old. My father was not happy and the two of them had big fight about it, but I moved forward, out on my own continued to have seizures but felt freedom.
Let your mother-in-law and his family read our responses, because this could be destroying her son's life and yours. You both are in my prayers!
Dana
 
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saxofone1 replied to amyrmca's response:
Hi amy,

A few more thoughts...

When you go to the next appt with your fiance ask the doctor if he knows of any epilepsy support groups in the area. There may be one at a local hospital or library. Also, ask the doctor if any of his patients would be willing to chat with you about ep.

Talking with others can be the gateway to understanding and learning. You never know where you will find friends. You did find us.

Keep moving forward.
angie
 
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dancer86442 replied to amyrmca's response:
Amy,

As you can see, you are getting the same Opinion here as on DS. More Opinions from us & DRS is Good! I Do Hope our responses Help. Think about what has been said & do what you feel is rite, when the time is rite. So what if you & Mom are Battling? You are Winning!!!! Becuz, You are Learning More! They Ain't! Keep reading other Posts from people w/ Ep. You never know what else you may learn or when someone will need Your Input. Feel Free to jump in anytime w/ Questions, support or Updates. We are Listening. I hope you like it here. I Do! HUGS!

Love Candi
 
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amyrmca replied to Haylen_WebMD_Staff's response:
Thank you for the link. It helps me a great deal.
 
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hula_dancer73 responded:
Angie is right.

you are not the casue of his szs. The stress from it all is.

His mother needs to grow up and act like the adult she is not a selfish person who refuses to let any thing copme between her adn him.

I have had documented Complex Partial szs fpr 10 yrs now. my motther did not stop us from ge tting married. I got married young and had kids as well. we moved to Houma La to get away from everyting, then picked up and moved to PHX to be near her so my kids could spend time with her as I never got t ime with my grandparents.

THen my husband took a job in Hi and after my youngest daught er died from a rare form of Juvenile Myoclonic Epilepsy or JME, he thought it was best to move there anhway. That was before he got the job. We lived on Maui firs t not much there to do for kids, then he got a job offer in Honolulu so we moved to Oahu and live ih Honolulu. He is a pycian in Straub Hospital.

Both my kids have EP, like I said one died of a rarity and Gretchen is 16. both of us have a device called a VNS or Vagus Nerve Stimulator implant.

I am arep for VNS on teh island of Oahu.

IF you have questions about that I can help you. It may be an option for him. Check with his neruo about that.

As fpr traveling on a plane PLEASE go with him. Let the staff onteh plane know he has epilepsy.

We got married young becuase Jasyn wanted to pull me out from under an abusive father. My mother did NOT t ry and stop it.

any wya enoung of my chit chat.

hula_dancer

VNS REP
Oahu, HI--Honolulu
 
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BlazingTiger responded:
Hi Amy,
YOU ARE NOT THE CAUSE OF HIS SEIZURES.....
Under any circumstances. You fiance's mother is just using you for a scape goat. I thought this post looked familiar from DS. You said something in a response about someone in the family having a history of seizures. It seems that she has a hard time dealing with it & it is more convient for her to blame you instead of facing the problem head on. He doesn't need for her to create more drama. So she really needs to stop placing blame for her sons sake & deal with the real problem her sons seizures.

Jason


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