New Here

[Bri_Christine]

Hello, everyone.

I always feel so awkward writing new member threads but how else should I introduce myself? Anyway, My name is Bri && my boyfriend was diagnosed with epilepsy 3 years ago. They can't make up their mind on what he has and lately it's been crazy. The last two days he's been having nonstop auras, it's really starting to take it's toll on him. It's hard to tell him it's going to be okay, and remind him it's going to get harder before it gets easier but it will. I have so much hope that this will be okay soon.

I'm basically here to see if there are others out there who are caring for a significant other. Epilepsy effects everyone, friends and family.

 

[carlasmoore]

Hi Bri,
Welcome to this wonderful site. Sit down and stay a while and get familiar with all the resources available here.

I, too, have been having partial seizures uncontrollably for the last 3-4 days. I'm scared to death of the dark and usually stay up all night because I'm scared to close my eyes (and this coming from a 40 year old!). My seizures are caused by stress and sleep deprivation.

I have lost my job and we are financially stressed right now, which is feeding my seizures. no way to relieve stress in my life right now.

Hold on as things do get better. Sometimes you must take it one day at a time. I also do alot of praying!

Take care and welcome to our little "club",
Carla :rock:

 

[RobinN]

I care for a teen. She was diagnosed when she was 14. She is now 17 and we are finding greater control with each day. Nutritional changes has made the biggest improvement in her health.

I know many want to find out names and label their seizures. I have not been interested in labels, but the WHY factor. I continue to search, and am narrowing it down daily. Journals or calendars are extremely useful to keep accurate information that will help in finding what lowers the threshold. Changing nutrition, and adding supplements. For me knowing that my daughter was fine for 14 years, has made me work toward raising her threshold again to where she is controlled. It seems to be working. She remains med free.

It does effect each of us differently. Some what to sweep it under the carpet and forget that it is there. Others are marching for more research. Some are scared, while others build forums for people to share their stories. Hope has helped me to find answers for my daughter.

Your boyfriend is lucky to have you in his life. His parents sound pretty great too.

 

[epileric]

I feel awkward too at introductions but I find the people here to be very comfortable & welcoming. I have E myself but it's always nice when someone without seizures joins because they look out for someone who does. There's quite a few people here like that, I'm sure you'll meet them eventually.

Like carlasmoore said, make yourself comfy, check out all the nooks & crannies on this site & please accept a complimentary cup of coffee :cheers: (we also have herbal tea since caffeine can trigger seizures in some people).

 

[Bri_Christine]

haha thank you all for the nice warm welcome =)

My boyfriend has grand mal seizures, absense seizures and as of Saturday night, auras & partial seizures. His seizures are triggered by lack of sleep and stress and up until January of this year, they were pretty controlled but then the Keppra started causing more seizures. Since then it's been a rocky sorta road, he's been on Depakote, Topamax and now is in the process of going off Topamax and a mix of Depakote and something that starts with a Z that I can't remember the name of. The Topamax was horrible, it didn't stop a thing and just made his memory terrible, he can't play the piano, which is his "thing" its the thing that keeps him going, and he can't play. He broke down the other night to me, it was so sad =(

His doctor is hoping this Depakote mix is going to work, he wants Ryan to be able to go away to college instead of having to stay at home for a year or so, he just doesn't feel safe going to a college that's 40 minutes away and having a seizure and no one knowing what to do, or having one in the night and scaring a roommate.

It's been frustrating, but we're making the best of each day. He deals with things by laughter and jokes, and he's continuing to do so, even as it gets harder to deal with. I remind him constantly that he is my hero, I would never be able to deal the way he does, everyday. He's so strong, it's really admirable.

I know it's only a matter of time before they control his seizures, waiting is just the hardest part.

 

[Bernard]

Hi Bri, welcome to the forum. :hello:

I'm here on behalf of my wife. There are many members who are here on behalf of their child, friend, beau or spouse. We've also had members appear seeking to help/understand co-workers or some other acquaintance they see regularly. Make yourself at home here.

 

[Bri_Christine]

Thank you Bernard, I felt a little funny at first because I don't have epilepsy, but I'm so eager to learn more on behalf of my boyfriend. I want to do everything I can to make this so much easier for him.

 

[Nakamova]

Hi Bri --

You sound like a great support for your boyfriend. Transitioning on or off meds can be unusually stressful -- a combo of worrying about seizures happening during the transition, not knowing what side effects to expect, and hoping hoping hoping that the new meds will work.

The Z drug you mention might be Zonisamide (also known as Zonegran). I was on it for a short time, but found it problematic -- it is an appetite suppressant, and also in my case gave me a really acid stomach, so I couldn't eat properly. It messed with my bloods sugar and also my moods, and eventually caused a seizure. I'm not saying that will happen with your boyfriend, but it would be good for both of you to know what the potential side effects are of his meds, so you can be prepared. His doctor will provide info about that, and there is more info on the internet on this site that might be helpful too.

Best,
Nakamova

 

[Bri_Christine]

The Z drug you mention might be Zonisamide (also known as Zonegran). I was on it for a short time, but found it problematic -- it is an appetite suppressant, and also in my case gave me a really acid stomach, so I couldn't eat properly. It messed with my bloods sugar and also my moods, and eventually caused a seizure. I'm not saying that will happen with your boyfriend, but it would be good for both of you to know what the potential side effects are of his meds, so you can be prepared. His doctor will provide info about that, and there is more info on the internet on this site that might be helpful too.

It's not that one, it has a shorter name, something along the lines of Zonatin or something like that, I can't remember the right name, but it's something like that.

 

[RobinN]

Zarontin?

 

[Bri_Christine]

Yes ! that's it!