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My boyfriend has epilepsy...OUR STORY

The Story of Angelina & James....and epilepsy

 

Hi, my name is Angelina.  I am 23 years old.  I have a 4 yr old son Benjamin.  I met a guy named James (21 yrs old) in December of 2009.  The first night we met, he had come over to my place with one of his good friends that I knew.  We were all just hanging out, a little bit of drinking and playing Monopoly on my PS3.  James was very quiet the entire night, as I could tell he was a little bit tipsy and out of it.  Little to my knowledge, he was living with a serious medical condition and yes, even that first night, I noticed something different about him.  As the evening continued, after many laughs, I finally got James to move from his quiet statue like state into my kitchen to talk to me...trying to be a good host ;o)    

As we started what became a very long 'short convo', I noticed that something was different about this guy.  He was processing information very slowly.  I remember thinking that he just wasn't that interested in me...but he would respond to my simple questions with really thoughtful answers...it just took him longer than most people.  But that was fine with me...he seemed sweet.  We ended up cuddling up to a movie and we have never parted since. 

Okay, so no this is not some gushy romantic story...this is now my real true life.  In just 3 months, I grew to love James...and to hate the epilepsy.  I  don't really recall the first time he told me he had epilepsy.  I do however, remember waking up from my head on James' chest and seeing an actual real life seizure happening before me.  At that point, I was aware of the epilepsy, but not so aware of what to do.  As I rode in the ambulance, staring at my new boyfriend...my head finally caught up with my heart and I began asking myself millions of questions, like...why had I never asked James what to do if he had a seizure....or how often do they occur?? when do they occur??  And then came the hardest of all the questions asked...and my mother asked me this one -- 'Angelina, can you handle this responsibility for possibly the rest of your life?'  Wow....I had no idea...I knew that I cared about James, but I hadn't really considered what future we would have.  All I knew was that I was happier than ever and he treated me like a princess.  My 3 year old loved having him around and to be honest, I was yearning for a more complete life.

So here is James...a young man who was willing to commit and love and give so much.  I was caught so off guard by how giving and kind hearted he was.  We would sit there and just talk about how wierd this all felt...like we had known each other our entire lives.  It all came so natural.  But there was just one thing...as there always seems to be...the epilepsy became our trial.  No, not other girls, not being young and free, not going out and being a young man while I was young mom sitting in my house....no, our trial was epilepsy.  I began to mentally balance my needs and wants.  James met so many of my needs...fulfilled so many of my wants...you could literally see how happy we were to be together.  But in my heart, I began feeling a sadness and we shared in it.  I could feel his confusion when he would wake up in a hospital bed...but then he would look up at me with these sad, desperate eyes and just close them and go back into a deep sleep.  I could feel his vulnerability when he would reach down to find that he was completely naked underneath a very thin hospital gown.  I would just grab his hand and tell him I'm not going to leave his side.

Since December, I have witnessed over 20 seizures.  Most of which were in his sleep.  A few seizures have occured when he appeared to be conscious, but were between other seizures that were occurring back to back.  Until recently, I had never witnessed him having a seizure while awake.

Here is a brief summary of how James' became epileptic and what is going on with him personally now...

James was in a car accident in 2007, in which an ambulance hit the door his head was leaned up against.  The irony is crazy to me - he was hit by an ambulance that caused him to spend the next 3 years riding in them.  Just makes you sick inside.  Well, so they announced him dead on the scene.  However, he was revived.  I am no doctor, but I imagine the seizures were caused by the lack of oxygen and the head injury.  He was 18 at the time and he had no medical insurance.  And with the seizures happening frequently and even more frequently after being prescribed Dylantin, he was beginning to give up on life.  He couldn't work...he couldn't drive...he could barely remember anything that had happened and even the medication was causing the seizures to increase.  He was accepting that epilepsy had taken his quality of life and believed he would not live to see his late twenties.  Since 2007, he has had over 200 seizures...most of which are grand maal.

Since James and I have quickly entered this relationship, many people around me have questioned my future...our future.  How will James help support a life with Angelina?  How can Angelina take care of her child and a grown man?  What if the seizures never stop...can she handle this for the rest of her life?  I know all these questions are asked with concern and love for me.  But if anyone really truly believes I have not asked myself these questions a million times, then they are dillusional.  I am filled with questions...though I really have no true doubts.  With prayer and faith in God, James and I have been able to withstand even the most difficult situations and fears we both have.  

So that is little piece of our story...here is some positive things occuring in our lives right now...

* James is currently in a Legal Aide battle to gain state health insurance...I am in disbelief that they have denied him until now - they say he is not 'full-time disabled'

* He had applied for disability, but was continuously getting denied until we recently found out they had been applying him for the wrong disability...wow...so our prayers are that it finally goes thru this time around

Without medical coverage, James can't receive more extensive testing and has not been able to afford the medications they prescribe...our prayers about affordability were finally answered when they agreed to prescribe an alternative, carbamezapine, which is only $4 for 60 pills....now we just pray that is works.  He was prescribed this medication on March 15, 2010...he currently averages about 1 instance of the seizures (possibly multiple back to back) every 3 weeks.  So, the real test will be time...how long til the next one?  Hopefully never. 

I seriously quiver and feel an upside down feeling in my stomach every time I hear James make a strange noise or twitch and make any sudden movements.  I don't ever want to wake up in my sleep again to the seizures.  It isn't for selfish reasons...I can actually say that I don't panic and never have when the seizures occur.  Yea, they are kind of scary, but only because I never know if its just going to be one seizure or multiple...if this one if going to be the one that never stops....if I will go to sleep and wake up to him dead next to me.  I know that sounds so grim, but I guess that is what epilepsy is.  It is lifeless.

On the other hand, I have learned so much from this experience.  Life matters!  Hold onto to those you love and make sure they know you love them.  Give them hugs and kisses and time.  And if you are able, spend your precious free time sitting next to them when they are in the hospital.  I can't speak for anyone else, but when James wakes out of a seizure, he is looking for something familiar.  I remember bawling in a waiting room because I had just admitted him after he had a seizure in my car while I was driving.  I pleaded with them, 'he needs to just see me when he wakes up'....I didn't want to be in anyone's way...I just knew how much he needed the comfort of a familiar face...to know that he wasn't at the hospital alone.  I can't explain the hurt I feel everytime he lays helpless in those sterile rooms.  But you must stay strong.  As much as I cried in that waiting room, I never showed him a tear.  I told him that I will never give up as long as he doesn't.  Truth be known, he has a few times, but I kept pushing him.  We have made it this far...he is finally on meds....so now what???

 

I appreciate those of you who spent your valuable time reading our story...I am very undereducated about epilepsy and I am learning all the time.  But being ignorant cannot be an excuse anymore.  I want to know everything.  I want to know the diet he should be on....the activites he can do...other peoples' experience with carbamezapine (good and bad)....I also don't want him to feel as though he is unable to do anything for himself...how do I encourage him?  I need some experience from others with epilepsy as well as those who have loved ones with epilepsy.  This is so brand new and so different than the trials I have faced.  I know this has affected me on the outside looking in...I can't imagine what it is to have epilepsy.  I feel for all of you out there with this disorder!  Thanks again for just listening, even if you don't comment.  I needed to tell someone what I have been living with on my heart.

Angelina

Comments

Re: My boyfriend has epilepsy...OUR STORY

This is a heart-wrenching story, and although my epilepsy isn't nearly as bad as James's, I think anyone with epilepsy can empathize. It's so hard for those of us with E to understand what it's like for our family, and on the other hand, I think it's equally hard for our family members to understand what it's like for us. There is nothing that can compare to actual experience, but stories like this come close. Waking up in a hospital and either not knowing what happened, or knowing "oh shit not again"... are horrible feelings, and to know that someone is there waiting for you makes everything just a little bit better.

You should message me sometime, it would be nice to talk and share stories, but here are some things that might be interesting and relevant about me:

1) I am 21, and have had epilepsy since December of 2008. I had encephalitis (swelling of the brain, unknown cause) and we are pretty sure that's what caused it. I have simple partial seizures every day, and am really lucky that's all I have and I don't lose consciousness. I have had 5 tonic-clonic or grand mal seizures, the most recent being a month ago.

2) I live with my fiance, and he worries about me constantly. He's been with me since before everything started and stuck by me through everything, but I can definitely tell when he's getting nervous or I forget to call him in the morning; he's always worrying.

3) I don't know what other drugs James has tried, but you said you wanted to know both good and bad of carbamezpine, and I had a bad reaction to it about 2 weeks after starting, I got sick, high fever and a rash that covered my whole body. Had to stop taking it. I've heard it works well for other people, but it didn't work for me.

 

Good luck!

Re: My boyfriend has epilepsy...OUR STORY

Hey, thank you so much for your response...very thoughtful!  And I so appreciate you reading the long story I wrote...just hard to put down in a few words I guess...I would love to talk to you more, I think hearing it from the other side, not just from my boyfriend who wants me to think everything is okay in his head, when I know it really isn't....please, send me a message or however u talk on this site!  I don't have a working comp right now, so I won't be on here much, but I will check back as soon as I can...thanks so much again

Re: My boyfriend has epilepsy...OUR STORY

you see at the main screen  on the right hand SEARCH bar you can type in a person profile name and find them that way :) you be able find them that way you can also join the chat room and talk to other people and get there views on there stories and medications you go all the way doin the main page at the bottom LEFTHAND SIDE u see word COMMUNITY in tht roll  and you see (chatroom)click it once and it will bring up another window and at that window you click on join room it will bring you into the chat room i must warn you sometime the room may empty or other times it full

Re: My boyfriend has epilepsy...OUR STORY

I cannot see any option in the left hand panel for chat rooms, i always come to this blog and found some interesting stories and other relative posts but today you have mentioned about chat room, this is really new and interesting to me. Please let me know exact URL for checking up those chat rooms.blogest 4

Re: My boyfriend has epilepsy...OUR STORY

i would like to talk to you more find me on the form

Re: My boyfriend has epilepsy...OUR STORY

hey...I am new to this site, so I am little confused how to reply and talk to other people...but yea I am thrilled to talk to anyone who can give me advice, just talk, tell me their story...whatever

Re: My boyfriend has epilepsy...OUR STORY

I have has E since for 10 years now and I feel for you both. He really is a lucky guy to have you in his life. My seizures happen mostly in my sleep as well. My neurologist prescribed carbamazepine capsules(carbatrol) to me when i was 20 and i was taking it for 8 years and I'm not totally convinced on its effectiveness. Remember that not everybody with E has the same story. Different people react to different meds and you really need to find out what works best for you. This is my experience with Carbamazepine.                                                                                                                                                  For the first few years it seemed to work well. I had 3 grand mals betweent the ages of 20-24. That was when i started having them more frequently, about 2 or 3 a year. My neuro just prescribed more of the medication instead of having any tests done but i was still having them every few months. I started getting really depressed and very frustrated because the meds had no apparent effect. I stopped taking my meds as prescribed and eventually stopped taking them altogether. That was when i went almost a year and a half without a seizure with no meds.  But when my E came back it did with a vengeance. I had 3 within a month one of which was really bad. It lasted almost 20 minutes and I could barely even walk for a few days. I started taking my meds again and it was back to having them every few months. Carb ahs been shown to have negative effects on bone strength so if he is taking it on a regular basis, he should be taking calcium and Vitamin D supplements.                                                                                                                                                          I started seeing a new neuro in March and she presribed a new med that has less long term side effects. I'm still having about the same amount of seizures as i was before. But it is hard to tell exactly how many i hae because they happen in my sleep. There are many things you can do to decrease the chances of having seizures but like i said before every person is different. Diet, Sleep, minimal alcohol and just having emotional support can help to reduce the amount of seizures. Good luck to you both and remember you guys are not alone.   

Re: My boyfriend has epilepsy...OUR STORY

I want to let you know you are a wonderful young lady and your boyfriend is blessed to have you in his life:). DO NOT give up - go to doctors, ask, ask, ask- UNTIL they will tell you something- maybe a VNS would be helpful. I am NOT a doctor, but have had epilepsy since I was 7 years old.  I am a teacher and am 53 years old now.  It has been hard but with medical advances, there is something for everyone.  BLESS you both and I pray for your strength:):):)

Re: My boyfriend has epilepsy...OUR STORY

same thoughts. God Bless you both!!!

Scott Allerdice
Software Engineer
mobile application development

Re: My boyfriend has epilepsy...OUR STORY

Your boyfriend is so lucky to have you.  I was actually in tears when I read your story. I have epilepsy for 17 years now and I wish all of my boyfriends have been half of understanding. In fact I have had one even call me "the fish flop" Although I hate to inform you carbamezpine doesn't work well. I know it didn't work well for me. Not even it's brand name is the best meds out there. I thank god I have insurance, my medicine alone is more than my income a month. I hope you and your boyfriend stay together for a very long time.

carbamezapine (Tegretol) and other drugs

Wow. What a story! I'm glad carbamezapine is working well for your boyfriend. I took Tegretol (the brand name of carbamezapine) for several years. The really short story: Since I was diagnosed 30 years ago, I've had thousands of seizures, been through seven different
drugs (Zarontin, Phenobarbitol, Lamictal, Depakote, Tegretol, Lamictal, and Keppra), and lost my driver's license. Since drugs weren't a long-term solution, I decided to go natural. I'm a Shaklee distributor and went with what I knew--Shaklee's Vivix. I've been seizure- and side effect-free for over two years now! Since it's worked so well for me, I'm now on a mission to help as many people as possible. I set up a facebook fan page about epilepsy and Vivix: http://www.facebook.com/pages/Control-your-epilepsy-naturally/1722234261.... You can watch a video of my story there.

 

Re: My boyfriend has epilepsy...OUR STORY

First I want to commend you on how strong you are keep up the good work and keep on using the power of prayer. Angelina I know where your coming from I was 26 when I was diagnosed with epilepsy and I was also a newlywed at the time. It just came out of now where I had such major emotional issues just like you I questioned my relationship with my new husband. "How was he going to feel?" "Can he handle a life with someone with epilepsy?" "In time is he going to leave me?" I was scared at the time I even give him the option of divorce so he can go and find someone else. But he didnt and everyday I am so thankful that God has brought someone so precious in my life. The same thoughts you have everytime James had a seizure were also the same thoughts going through his mind. Yes, its going to be scary everytime and yes, your always going to wonder when the next seizure will hit your going to wonder a whole lot. But what helped me and my husband was education. We went to support groups and talked dont let know one else determine your relationship James didnt ask for it no ask to be epileptic. When you go and see a neuro ask as many questions as you can. If James felt like I did tell him its not his fault. Tell James to forgive himself and to forgive the world around and most of all tell James to stop being mad at God. This is how I felt I was mad at the world I was mad at myself and I was mad at God. Epilepsy is more than something physical its also very very emotional. After awhile I forgive myself, I forgive the world and I stop being mad at God and started being a whole lot thankful.

Re: My boyfriend has epilepsy...OUR STORY

Have you all considered the ketogenic diet for him?  You can read about it on this site and ask your doctor about it.  It is pretty strict, he is going to have to go off of all (or just about all) sorts of carbs and sugars, and sometimes the person's breath isn't pleasant when they are on the ketogenic diet.  Some people have great results by doing this diet.  It might be something you want to consider.

Re: My boyfriend has epilepsy...OUR STORY

I empathize with this story! My fiancee woke me up in May groaning and starting having a seizure. I don't know how other seizures look, but once it has stopped he is blue and looks like he is not going to wake up. Still, after 8 months everytime I hear a loud noise I jump to see where he is. This morning he dropped his Keppra between the mattress and the bed frame and when he got it from the mattress I thought he had fallen off the bed and was seizing. Once I saw he was ok, I started sobbing. It's very emotional for both of us. He is so young...I wish there was a support group in our area. I've looked, but cannot find anything:(