Hello everyone, first time visitor (living with girlfriend with Epilepsy)

[JahLion]

Hello everyone,

I just signed up, thought I would introduce myself.

I have a girlfriend who sufferers Epilepsy. We are both 31 years old living in Melbourne, Australia. We have recently moved in together into a house.

I know this question probably gets raised many times, and perhaps somebody can direct me to the appropriate thread. My reason for joining this forum to find some support from other spouses who also live with a partner with Epilepsy. I'm not even sure if I'm writing this in the right forum section, but anyway.

I would love to find out the best advice, methods and ways to support my girlfriend. Aside from the Epilepsy, she suffers depression and anxiety, not wanting to leave the house, disconnected herself socially, and reduced sex drive.

A little brief history, she is 31 years old, and was diagnosed at the age of 15. She is currently taking Topamax to control the seizures.

Thank you in advance to each and everyone. I'm really finding it hard to cope emotionally, but I love her so much and just need to know ways of supporting her, and helping myself.

 

[Fedup]

Hi JahLion

Right this moment it sounds like you are having a hard time, but in fairness so is your girlfriend and being there with her is a lot of support, you have to try and stick it out also you might want to look at the side effects Topmax have this could be a lot of your problem, some side effects are Unusual sensations, such as burning or tingling (paresthesias) ,Dizziness,Fatigue,Drowsiness,Mental and physical slowing or delays,
Nervousness,Upper respiratory infection,Coordination problems, Weight loss and
Loss of appetite, these are just some side effects so maybe they need changing if so you and your girlfriend need to talk with your GP and neurologist, take note of everthing and bring it with you. By being there with her you are being supportive, yes you need support as well and at cwe we will try helping you. its not easy.

 

[Chaz1]

JahLion

She is very lucky to have you on her side.

This site was set up by Bernard, his wife Stacy has E (if that’s not love, then I don’t know what is).

Strong meds the E group and the better you understand her meds the better you can help your partner.

After a seizure there is a recovery period and for each individual it will be different (after a T/C my Son can forget anything that happened the whole day, can be up and moving and even working but it’s a blank) would be great if you could try see patterns and work to understand these and what you can do to help….

Have you read any books about epilepsy?
http://www.coping-with-epilepsy.com/forums/f40/

Does she see a counselor/therapist? Use any alternatives /supplements in conjunction wit her meds?
http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments
http://www.coping-with-epilepsy.com/forums/f32/

I also do not have E, my Son of 26 does and we never ever stop looking for safe alternatives in conjunction with meds. This site and the wonderful people sharing their journeys have helped us cope and give hope…much hope...

Most important, please do not give so much that you forget yourself, because if you do that, being the carer only can become a burden over time, so be honest with each other and talk about it ALL….both how she feels but also how YOU feel to…

Warm welcome to CWE.

 

[JahLion]

Thank you Chaz1.

I just had a look at the list of recommended reading. Just ordered 2 books now through those recommendations, so I really appreciate all the helpful advice.

I'm so happy I found this great community, and already feel like I'm breathing some air in here.

Thanks again everyone.

 

[Chaz1]

JahLion

That’s great!

I have seen my Son struggle in relationships (they ended) because his partner did not truly understand E, its way more than take the med and get on with it…

Taking true time to understand all that’s going on for your partner you will be much better equipped to know when to help, call for help, let her rest, give support and loving or plain leave her alone or knowing when to tell her doctors something (A seizure diary is a MUST, u coudl write in it to) she may not see herself.

I have looked at literally 100s of thousands of web pages to learn more about E. My Son just did not have it in him (1st learn to live with the E diagnose, then living and coping with E and the meds) if he hits rock bottom we always have some SAFE alternatives ready to try and 90% he goes along with it…..keeps us ALL positive. My Son is also in therapy and is undergoing Neurotherapy/bio feedback (= brain training). There are so many alternatives to explore..

Education and knowledge will help you both immensely…

Keep coming back - we need you too

 

[Nakamova]

Hi JahLion, welcome to CWE!

We don't have a specific "caregivers forum" here, but you should feel free to post any questions or concerns you have -- you'll find plenty of good advice and support (as Chaz1 has already demonstrated!)

Some of the things your girlfriend may be experiencing could be related to the Topomax. There are other medications out there to try, so you might suggest she discuss options with her neurologist. If she feels comfortable, you might ask if you can go with her when she see the doctor so you can get a better sense of what any issues might be.

Is your girlfriend also being treated for her depression and anxiety? If not, then it might be worth seeking our counseling to see if it can make a difference. There's a strong co-occurrence of epilepsy and depression -- but it's not easy to tell which came first, or if medications or social pressures are playing a role. A therapist/counselor may be able to help you both find ways to cope better. Likewise, her low libido could be related to the meds/seizures, but it could also be a secondary effect of her depression, or there could be entirely separate hormonal issues that might need addressing. Her regular doctor should be kept in the loop on this.

It's great to be proactive when dealing with epilepsy. Getting more information can be key, so it's fantastic that you are interested in getting up to speed in order to help your girlfriend. One place to start at CWE is here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Best,
Nakamova

 

[valeriedl]

I've had epilepsy for 9 years and started dating my now husband 8 years ago, we moved in together 7 years ago. After a few months into the relationship he started coming to my neuro visits with me so I guess you could say that we pretty much learned about epilepsy together. He takes me to every neuro visit and it's good because he's able to tell the dr about things that are going on with me that I don't realize are. He asks alot of questions and can answer a good bit of them too.

I had my first seizure with him about a month after we started dating and ended up in the ER. My family thought for sure he was going to leave me because npw he knew what he was going to have to deal with if he kept me around, but he didn't.

I don't know how long the two of you have been together in general but did she have these problems before the two of you moved in together? I'm assuming that can't drive so no she has to rely on you to take on more responsibilty for her than you did when you were living apart. This could be something that is causing her to be upset and be causing the other issues too. Sometimes one thing leads to another.

I know that I feel like I'm weighing my husband down alot sometimes. He works a full time job at a mill, and it's not a desk job. He has to be there at 5 am and usually get's home around 3. I know he'd just love to come home and sit in the chair and relax but there's alot of times that he has to take me to a dr visit, grocery store and other little things that I'd beable to do myself if I could drive. If I have a pescription to pick up he has to go out of his way on his drive home from work to go to the pharmacy to get it.

He takes me to every neuro visit and has to call off when he does it, but he insists on this, and it makes me happy. It will make me mad however because if I didn't have epilepsy then he wouldn't be missing a days pay. I can't work either. I do get Social Security and some other money, not a whole lot all together, but most of the bills get paid for out of his pay check. If I could work then money wouldn't be so tight.

Just give her as much support as you can.

The day after a seizure he'll call me from work just to check on me and see how I'm doing.

The meds that I'm on make me very tired. I have to take a nap in the after noon and the day after a seizure I usually sleep all day long. I always wait for him to say something to me like 'All you do is sleep!' but I never hear this. But if I'm not sleeping then he actually wonders why I'm not and will sometimes even tell me to go take my nap. If I go a few days in a row without getting my nap I may end up having a seizure and he always worrys about that if I don't get my sleep.

I usually don't know when a seizure is coming on but 9 times out of 10 he can tell. He'll tell me to go sit down because he doesn't want me to get hurt. I usually have a horrible headache after one too and just fall asleep for hours. He'll get me a bag of ice to put on my head and just let me go.

Stupid little things like that can make a big difference to someone. He's there to help and I know it.

Try to learn as much about epilepsy. The more you know about it could help you understand what she's going through. This is a good place to ask questions and get answers. You'll even find that you'll beable to answer some of the questions that are asked too.

 

[tinathesingergirl]

JahLion,
Welcome to CWE! I hear you on the Topamax issue. I am on the tompamax combined with keppra myself and when i was first on it no sex drive at all! Being a married woman it drove my husband nuts. It seroiusly drove it right out of me. My seizures are related to my cycle so i found that for me once i got on the right birth control method that helped a lot.... I am currently on the nueva ring keeps my cycle on track. I have been seizure free for about 6 1/2 months now which is the longest i have been without a t/c in 4 years or a med adjust I have been on this about a year now. It works for us quite well. She might want to ask her OB/GYN about it or her GP if it available in Australia. Worked great for the sex drive thing for me i think this is due in part becasue it is not a pill that you take it is a vaginal ring that you insert and wear for 3 weeks so the hormone is released more steadily and more localized. Well that is my theroy i dont know if that is an actual medical fact or not.

Tina