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Epileptic's Man

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I apologise for the length of my first post and for a lot of the pointless content, I do tend to waffle :)

As my username suggests, I am the partner of an epileptic. Before I met her my only experience with epilepsy was with my cousin. She developed it as a small child and was on a lot of medication for it. Eventually she had brain surgery and was never the same again. Anybody who didn't know her before would assume she was born with a mental disorder, she is very vacant and dependant on other people. Her medication has been reduced, against the advice of the doctors, and since then there has been a slight improvement in her personality and awareness but alas not in her condition.

This has given me a lot of respect for a condition which before I hadn't even thought of as serious, I just thought somebody had a funny turn and that was it.

My girlfriend sufferes tonic-clonic seizures and has done since she was 11 years old. When I met her she had one every 7-10 days, since we've been together she's started looking after herself a bit more by eating better, drinking less alcohol, having less late nights and by getting regular exercise such as running or yoga. This has resulted in her having a seizure on 20th August, then 15th October then numerous headaches and other symptoms before having another seizure on the 7th December. So averaging one every 7-8 weeks which is a great improvement. She is currently taking 19 pills a day, but has been told if she continues to improve then they will look at reducing her meds.

I'm yet to see her have a seizure, but what frightens the hell out of me is what could happen in the future. I'm not one for sob stories but, like most people, have had my fair share of heartache. I've finally found a girl who is perfect for me in so many ways and some of the tragedies i've read about on here terrify me, I would hate to watch her deteriorate or worse. There's also the issue of having children, I dont even want to think about the possible complications there.

As I write this I wonder what my point is, I seem to be just thinking aloud. I guess I would like to know if there's anybody on here who is in the same or similar position to me. Or if there is anybody who suffers or lives with somebody who sufferes from the same as my girlfriend who can offer me any advice?

If you've managed to read all of this, then well done and thank you for your patience :)
 
hang in there...

I have written before, but they tell me I haven't been here long enough for the response to be sent. I am on the other side of the fence as the one with the seizures, but I do know that trying to understand and appreciate her condition is of utmost importance. She will feel less stress, and improve just by knowing you understand, and do not feel burdened or like an outcast by her side.
Best of luck to both of you!
Stacey
 
Hi E'sM, welcome to the forum. :hello:

I'm in a boat similar to yours, but much further down the river. I didn't think as much about it as you are apparently doing when I hopped aboard. :roflmao:

I think it's very encouraging that her seizure control improved as she made important lifestyle changes. If she really went all out, she might be able to realize even better control (perhaps even complete control).

I'd recommend she read the http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/. A good diet (see chart linked in my signature), vitamins/minerals, a good sleep regimen can make a dramatic difference. Cutting out caffeine and alcohol should also help. If she wants to kick it up a notch, she can try neurobehavioral therapy or EEG neurofeedback. :twocents:
 
Welcome to both of you

You have found a perfect place to be in CWE. And, you will discover caregiver and patients alike here. I am one of the patients. The builder of this home, Mr B, is a caregiver. His wife, Stace, is the patient.

There are lots of nooks and crannies in this house, please feel free to explore them. A Padded Room, even to vent in, if you need it.

Right now, I'm coming and going a bit as I've been doing some writing assignments, but will be back soon. Feel free to PM me if you want..I will answer them as fast as possible.

Take care!

Meetz
:rock:
 
Thank you both for your replies, it's always comforting to know there are other people in your situation. Of course, I knew that anyway, but it's good to hear from them :) You know what I mean :) I'll also be looking at your information when I get chance Bernard (am still in work at 8pm, supposed to be working on my university assignments :roflmao: ) and i'll also be contributing to your site, which i'm sure provides comfort to many people, as soon as I can afford.

Is there anybody here who sufferes from tonic-clonic seizures who has managed to settle down and bring up a family?
 
Um, yes

I did that. I will have to discuss it later as I have to take off for work in a few minutes.

But to make it short and sweet my 3 kids are grown now, and all in college. The youngest, 19, is special needs........high functioning autistic, partially deaf, and several other things mixed in. The other two are normal, save the hydantoinism fingernails/toenails on my eldest (Abby). Their mental functions are perfect.

More later. PM me if you want.

Meetz
:rock:
 
Hi and Welcome!

It's great to read a post where a partner wants to be a support for his loved one and really wants to educate himself. :agree:

I can offer you loads of advice (but I can't promise it's useful) ;) Love her, deal with each day as it comes, and realize there are probably going to be days for both of you when it all seems too overwhelming to handle. Any questions, fears, or confusion you have is totally normal. So ask us all you want!

Take care. -Julie
 
Welcome E-Man,
I am a caregiver to a now 17 yr old. She began having tonic clonic seizures when she was 14. Her seizures became much worse while taking medication. She is med free at the moment, by means of nutritional changes, supplements that support brain health, and neurofeedback. I am sure that Rebecca's could be controlled 100%, if she did not behave like a teenager occasionally.
 
Hi Epileptic Man,
Yes, I have suffered tonic/clonic seizures and have raised two children. One has already graduated from college and the other is graduating this weekend, Magna Cum Laude, I might add. He's the one who I thought years ago would never make it through elementary school!! They have both witnessed many seizures, but it has made them more sensitive and much stronger psychologically.

Cindy
 
Hi E man! :) Welcome to CWE. As you can see, a friendly group. :) As for me, I have tonic clonics. I'm married to a wonderful man, and currently pregnant. :) Sounds like your girlfriend is very lucky. :) and that she's starting to actually get some control over her seizures. Hmmmm....originally seizures every 2 weeks? By any chance were they ever near her time of the month? If so, one of her triggers might actually be hormonal. To help figure out what triggers her seizures, she could try keeping a journal and writing down everything she eats and drinks (when and how much), how much sleep she gets each night, as well as any stress she's under. She should also write down what she was doing just prior to her seizures (when she has them) and how long they last if she can. She may find after looking back, that there's certain things that seem to be triggering her seizures, and then she can try cutting those things out of her life.

As for you, I'd suggest taking a first aide course so that you'll know how to help her if she ever seizes around you. Also, ask her whether she wants you to call 911 or not. Many of us prefer not to have an ambulance called. Why? Because honestly, all it is is a $900 taxi to the ER just to be told that we should go see our doctors. Duh. however, if a seizure goes past 5 minutes long, or she has them back to back, call 911. She could be going into what we call status. Now....all that being said.....do seizures always get worse? No.....each person is different...and that's what makes epilepsy so difficult for the doctors. A med that works for me may not work for your girlfriend. Even though we have the same kind of seizures. Each brain is different. :) I went 20+ years with no seizures, and then they started up again. First once a month, then 2 times a month, then back down to once every 10 weeks. My body just got used to the med I was on. And yes, a body can become immune to a particular medication. I was on phenobarbital for 20+ years. Now I'm in the process of switching to Dilantin. My suggestion, ask her if you can go to her next neurologist appointment with her. Explain that you love her and that you have some questions for the doc so that if she ever does seize around you, you'll be able to help her in the best way possible. My hubby goes to all my neurologist and other doctor appt. with me. :) If you do stay with her, understand that there may be times when you have to driver her everywhere. :) Right now, that's my hubby. And be honest with the neurologist as to whether or not the two of you ever want to have kids. If you do, that may require her changing meds. Also, take into consideration that the doc may tell you that it would not be a good idea for her to get pregnant. Are you able to accept that? Are you willing to adopt or have a surrogate mother? Is SHE able to accept that? Anyway, I know I just threw a lot at you. I hope it helped. Feel free to PM me.

Also, feel free to vent in the padded room (Epilepsy can be frustrating), ask questions, or just chime in. Also, check out the epilepsy 101 thread in my signature. It has some good basic info. Hope this helped.
 
Hi! I also wanted to welcome you to the group. I've had E since my teens and have been happily married for over 10 years. Prior to that, my husband and I dated for 5 years. As Julie said, we have gone through some tough times on different occasions, but it's just part of life, and being with the one you love. I wish you both good luck.
Sincerely, Josie :)
 
My 24 year old son still lives with me due to a lot of medical problems, the seizures started this year. He has not seen me had one, but lives with the fear. He calls me constantly to make sure I am ok, not lost somewhere. I feel a lot of guilt that he is not able to have a carefree life like others his age. But he tells me its better for him to do what he has to and have me in his life. His father never was part of his life and then passed away 12 years ago, so I am his only parent.
 
Thanks for all the information and advice everyone, it's much appreciated. I haven't been able to take all of it in as yet, i'm still trying to complete this damn 3000 word assignment that has to be in tomorrow :(

But i'll be sure to read through everything properly as soon as I possibly can and reply to each of you.

skillefer, my girlfriend uses the contraceptive injection so doesn't have a time of the month. She is trying to manage her condition, but she could definitely be doing more, I need to play more of a part I think. It would be much easier if we were living together, that way i'd be able to make sure that only the right food was in the house and she wouldn't be tempted to have a drink like she currently is living with her borderline alcoholic housemate.

Regards the pregnancy issue, I have no idea yet whether I could accept not being able to have children with her. It is a massive concern for me at the moment because one day, once i've graduated at least, I would like to start a family. We've been taking it very slowly having both had a somewhat chequered past when it comes to relationships but it's been about six months now and we're at that stage where things are starting to get very serious. I'm starting to like her more and more and can feel myself falling for her, this in turn is scaring the living daylights out of me because i'm not sure i'm brave or strong enough to take on everything else. I'm deeply disappointed and ashamed of myself for that.
I'm just trying to think logically about it all now, before it gets to the stage where i'm not able to.
 
Welcome * You also are showing you are wise, as it is something to think about. Good and bad. I am the mom to 2 genetic E children (19 & 16) I worry about them and their partners in the future. All I can wish for you is what I wish for them. TO find someone they love and respect, that loves and respects them back. You seem like a great guy and I wish you both well.

I have a feeling she will do alot better with you around. Some how when you feel better, things get easier and are better. Im glad you are both happy.
joan*
 
Sorry it took a while to get back to you E-man..... :) Ahhhhh, so your girl is using depo provera......I used that too. The onlly negative thing for me, was that it took me a loooong time to get pregnant once I went off of it. Not that that's true of all cases, but for me, that's what happened. However, it is a good form of birth control, and definitely more reliable than the pill or the implant.
 
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