MY girlfriend has epilepsy, please help me help her

[joshgale1]

I saw this site when researching epilepsy, i thought it might help me with everything going on.

My name is Josh, I'm 17 and doing A-levels in gloucestershire, England. 3 weeks ago my long term girlfriend (I'm not going to mention her name because she doesn't know I'm writing this and i want to respect her privacy) had a seizure in a pub in Hampshire, i didn't have the misfortune of witnessing this but i managed to catch up with her two days later, she was really bummed out about having a seizure and losing her ability to drive for at least a year, maybe even longer.

last Saturday me and Her (again, nameless) were baby sitting her brother. i was laid down next to her on her bed and we were just chilling out, like any teenager would. Out of the blue she went into a seizure, falling from her bed and hitting her head on the bedside table. Terrified and with no parents around i rang an ambulance. needless to say as soon as the paramedics had everything under control i went outside and cried like a little girl.

After seeing a neurologist was diagnosed with Juvenile myclonic epilepsy, her seizures where the result of alcohol. she has an MRI this thursday.

basically i just need some sort of advice on supporting my girlfriend, i'm doing a first aid course and i have an idea of raising money for Epilepsy action (a British epilepsy charity) by running in a local half marathon. But i have little knowledge of supporting someone with epilepsy emotionally. Any help would be great.

Cheers guys
xx

 

[RobinN]

Hi Josh - Welcome to CWE
Your girl is very lucky to have you. I would take a breath though and follow her cues as to how you can support her. I wouldn't treat her any different, but perhaps you both could take a red cross / CPR class together. This would give you a good jump off point to find out how she wants you to support her. She also might want to join you in the charities.

I hope if this was alcohol induced that she makes the best choice to not drink. Find ways to have fun without it. That would be one of the best ways to support her to say that you will remain alcohol free too. High blood alcohol can cause seizures. Nutritional choices can also cause high Plasma Ammonia levels..... very similar. So you might suggest she look online for dietary changes too.

 

[Crazy Monkey]

Emotional support

Hi Josh

Welcome to CWE!!!!

I live in Norwich and I have uncontrolled absence seizures (everyday), I am 30 years old and have had these since I was 10.

Emotional support from my side of the fence - (this is how it worked for me)
My ex BF knew that I had problems talking about my seizures so he never pushed me to talk about them, he knew I would when I felt comfortable (and I always did) I didn't want the seizures to be seen as a big deal in our relationship, he knew that I didn't want a fuss to be made about them as they can be embarrassing especially when out in public, he respected my privacy even though I shared everything with him, he offered me a lot of support and drove me about (on the back of his motorbike, yippeeee).

I basically didn't want to be treated any differently, you just need to be a little more alert then before the seizures reared their ugly heads.

It already sounds like you are doing an excellent job, you are being proactive in taking a first aid course, you have joined this forum to seek advice and you have remained by your girlfriends side to support her.

Keep up the good work

 

[Belinda5000]

Hello Josh,

Your Girlfriend is lucky you care and you want to find out about her epilepsy.
Treat her like you always would.Don't change because she now has epilepsy.
Learn what to do if she has a seizure,and if she wants to talks about her epilepsy listen.

It's not good for her to drink with the meds she takes.
Be there for her be supportive.
Like you R now.
Belinda

 

[GraceyFace]

hey josh,

awesome your supporting ur chik!!!so big ups for that. well im 20 but ive had epilepsy since i was 14, so i might hav a little understanding about the hardship wen ur a teen. in the begining wen ur learning about everything wen its all new, i think the biggest thing is that its just overwhelming. im sure there will be times wen ur girl wants a shoulder to cry on, someone to complain to about how unfair her situation is, to shout at- why, or even to ignore the topic completely.she will just want overall support. its a balance between a shoulder to cry on, but also she needs to recognise that being a victim wont get her anywhere. maybe tell her bout this site u found, let her know theres lots of ppl that she could ask questions to. like i kno bout giving the alcohol thing up, that sucked for me , still does sometimes. and ofcourse lots of hugs

hope it helped

 

[alivenwell]

Just be there for her. Your support is absolutely vital. A seizure can feel really scary and it can look pretty scary. As you observed, try to keep her from hurting herself. She's probably totally unaware of injury until after the seizure is over. Trust me...it really hurts afterward.

Anyway, think of her brain as a computer. A seizure is a reboot. Learn as much as possible about her particular type of seizure(s) so you can respond to her.

I've found a positive attitude, exercise and any stress busters very good methods of controlling my seizures. For me personally, I'm better off when I'm busy, and if I'm really busy, I tend to forget medications. I've set alarms on watches or cell phones as reminders to take the meds. It works for me. Physiological changes, illnesses can all be factors.

 

[dfwtexas]

Josh, she is very lucky to have a caring and supportive boyfriend. I am 48 and just started having seizures in January of this year. I didn't officially get diagnosed until I had the EEG in May. I was in denial until then, even though 2 doctors had told me they thought I was having seizures. There is so much to learn about seizures, everyone here is very knowledgeable and have personal experience either themselves or a loved one has it. But there are a lot of different seizures...once you know what type of seizure, then you have to learn what her triggers are (some triggers don't effect all..my seem affected by lack of sleep...some from stress, some from flashing/strobe lights) And it seems when I think I have figured out what causes it and what it feels like before it hits me...I have something out of the blue that doesn't fit the pattern.
I am still learning to tell people about it. I have written some very personal emails to friends who didn't know...letting them know what has really been going on with me. As of today, I haven't heard back from any of those friends...so you have to deal with strange behavior from some you thought were friends. Welcome to the site, I am sure it will be a world of wealth.

 

[Elaine H]

Hi There

Sorry to hear about your girlfriend, it sounds very similar to how it all happened to me when I was 23, I was actually in the middle of interviewing someone when my first seizure struck, I had no idea what it was, how it had happened, or what had caused it, but I would advise you both to do what I did, and am still doing, and that's learn as much as you can about it, and also read up on what to do and what not to do if you are with her when she has a Tonic Clonic or Grand Mal seizure, I've always said, it's not me that suffers with epilepsy, but the people around me! It must be very frightening to witnes, and especially if its a family member or a loved one.

Does she get any warning that it's going to happen, like I get a taste in my mouth, I'll get what's called Epigastric Rising, where it's almost like going over a humpback bridge, and your stomach goes all butterflies for a few seconds, then I sometimes get a strange smell, and I just feel sort of panic stricken, sometimes that's enough time for me to either tell someone, or to just make sure that I'm somewhere safe before the electricity in the brain goes to what's called Secondary Generalised seizure, that can lead to the big Tonic Clonic seizures. Alcohol can definately aggravate my epilepsy, but I still dring my red wine, gotta have some bad habits, that's the only one honestly!

Be as supportive as you can to your friend, I know I don't much like being on my own when I'm in what's affectionately become known as "wobbly mode" I like to be with people, I know a lot of people prefer to be alone, but the auras AKA Simple Partial seizures are so terrifying that I want people with me!

I hope that helps a bit, she'll probably have to have CAT, CT, MRI, EEG scans to try and find out what caused the epilepsy, if there is a structural problem with the brain, she may even be a candidate for surgery, I've just had my second lot of brain surgey in London back in June, still having seizures though sorry to say, but it has definately improved! You are right, she won't be able to drive for 12 months, it used to be 3 years, it's interesting talking to people around the world on this website, and in different parts of the USA they have different laws about the driving issue and epilepsy, you will find it a very helpful and informative website, I certainly have, there are some real diamonds on here!

Please let us know how she is getting on, and keep in touch won't you? You sound like a great friend!

Lotsalove

Elaine x

 

[Bernard]

Hi Josh, welcome to the forum. :hello:

After seeing a neurologist was diagnosed with Juvenile myclonic epilepsy, her seizures where the result of alcohol. she has an MRI this thursday.

Well, avoiding alcohol might be a good idea.

basically i just need some sort of advice on supporting my girlfriend, ...

Don't treat her any differently. Just offer love and support when she needs it. Educate yourself about it as much as you can. It may come in handy.

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

http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[skillefer]

Hi Josh! Welcome to CWE. Your girlfriend is lucky. The best thing you can do is to just treat her like you used to.....She hasn't changed..she still has the same feelings, quirks, and personality that you fell for. Epilepsy may mean that she has to make a couple of changes to her lifestyle, like getting a good nights sleep, or cutting back on caffeine, but she's still the same person. You wouldn't treat her differently if she was diagnosed with asthma or diabetes, so don't treat her differently because of the epilepsy. She's probably going to go through a bit of depression, and feeling like a freak, or fear that others will think of her as a freak...so be patient.

 

[Meetz1064]

Hi Josh

I wholeheartedly agree with the others. Your girl is lucky to have you. :woot: And Mr B gave you some wonderful links to use, too.


The advice to learn about E is the best advice possible. And DON'T let it scare you into treating her any differently. She's still the girl you like so much. Keep in mind that if she gets put on meds that the meds MAY give her some mood swings.......that's normal.

Take care, and please come back. You'll find all the support you need here. I promise.

Meetz

 

[brain]

Hopes Josh will outrun the EA's Fairies!

:cheers: Josh!

Glad to have you here at CWE! And I am
familiar with EA in UK!



Do you think you can outrun the EA's Fairies?



I just love watching the videos and pics of the
marathons in UK! I think it's tremendously sweet
of you to go out there and raise money and run
for the awareness and exposure!

Bernard has given you the head-start to get you
going with the links! However, people with Epilepsy
are just normal people with a medical condition,
the more you learn and know, the less you'll be
intimidated by it - for knowledge is power!

 

[Sandee]

Josh,

What a wonderful boyfriend she has! As an epileptic I find support is what is most needed from a spouse/boyfriend/friend. Just be there for her and let her know how much you care. This is a wonderful place to find knowledge, support and just vent. Maybe one day you will be able to mention this site to your girlfriend.

In Pennsylvania (USA) you lose your license for 6 months. I can't imagine a year. It's very hard to be dependant on others to get places. Just remember how hard it will be for her to be without her license. She may get upset with you because you will have to drive her places. I speak from experience. She is going through a difficult time. Again, you are to be commended for taking action.

Keep us posted.

Sandee

 

[stauph99]

Your girlfriend is very lucky to have you. I know that my husband was freaked out when I had my first grand mal seizure and he has tried to be very supportive. The worst part was driving. Luckily where I live it was only three months that I could not drive but it was still so hard and I know I was more on edge than I should have been but its very frustrating that you can’t go anywhere by yourself and have to depend on everyone else. You just need to be there for her and support her. Also try to be understanding when she’s upset or moody b/c of the situation. I think we get so frustrated sometimes b/c nobody really understands what we are going through. Again, it is wonderful that you are trying to help her. Good luck.

 

[Elaine H]

Hi Josh

I just wanted to know how your girlfriend is doing mate? I've just had a really nasty seizure here at home about an hour ago, and I have two nasty bruised eyes, and I've bitten my tongue on both sides, my fiance is just home from work, and boy was I ever pleased to see him!

I hope things are ok with your girlfriend, and that you are getting the support that you need, and that you have found this website helpful and informative. I am just going through problems with my current employer once again, and I have been told to stay at home until they decide wether I am safe to work there or not, I only hope your girlfriend doesn't go through all the crap that I have over the last 22 years!!

If you get the chance, please let me know how she is, I have been wondering about her. I look forward to hearing from you soon mate.

Best Wishes

Elaine x

 

[Sandee]

Elaine,

Oh my, sorry to hear about your seizures. Good thing you have your fiance to count on too.

Hope all works out well with you and your employer.

Josh, just be there to support your girlfriend. Sometime a hug and letting her know how much you care means more than all the medicine in the world.

Both of you will be in my thoughts. Keep us posted.

Best to all,
Sandee

 

[Elaine H]

Hi Guys

I am so sore this morning, I have sore wrists, elbows, and I feel like I've got two Lincolnshire sausages in the side of my mouth when I'm trying to talk!! I also hit my nose right on the very end and that hurts too, the eyes are red, but luckily haven't bruised, I contemplating going up the shop for a paper, but I don't want to scare any small children! My lovely step dad is coming over to see me later on, and I look forward to seeing him.

I hope you are all well, thanks for your kind words Sandee, and have a totally wicked weekend all!!

Cheers

Elaine x

 

[tinasmom]

Josh -
I agree with everyone else that she is lucky to have someone so understanding. I also would say that you just need to treat her the same as always. It is best to educate yourself so you can understand what she may be going through. It's so hard to watch someone you love have a seizure and feel so helpless. God bless you for being there for her.

 

[drarvindr]

Dear Josh,
Don't blame yourself for not knowing what to do. You did the best thing possible under the circumstances - you called for an ambulance. I had a seizure on a train once and my girlfriend couldn't do anything - she was so scared . And she's a doctor. Once the train stopped she called for an ambulance. When we see people we care about having a seizure , we are helpless. If this can happen to doctors , who are trained to know what to do , surely this can happen to you . It's a good idea to lay off the booze. If both of you give it up , you'll bond closer. If someone offers you a drink when you're together don't say "no , she can't" or look sheepishly at her for approval. Say" we've quit" or something that shows both of you have a commitment not to drink and not that you're doing it only for her ( even if you are). I think taking a CPR course is an excellent idea. There are some drugs that are to be given in case of an emergency . For my epilepsy it's clobazam ("Frisium"). My girlfriend carries a strip of the medication whenever we're together.Ask the neurololgist if there's some kind of drug you should have on you to give her immediately after a seizure if there's no one to help.Don't look at her like a time bomb about to go off. Nothing has changed except that she has to take medications. I think you'll both be fine