i'm new to this...

[sunflower323]

Hello....

I am here for my boyfriend. He has been coping with auras for as long as I can remember, but has only had one grand mal. After he had this he became unconscious and they did brain surgery. He know has multiple auras a day and terrible headaches. He has switch medications every month or so to try and get rid of them but nothing seems to work. He is now on dilantin, tegritol, and vimpat. I am hoping to hear if anyone has advice or suggestions on helping him. I feel so helpless all the time and is so draining, but then I feel terrible saying that when he is the one dealing with all this.

 

[JRuner]

Sunflower,

Welcome, The best thing you can do for your boyfriend is support him and you are doing that. There is a lot of collective knowledge here so search the forums and ask questions and please remember there are no stupid questions. Epilepsy and seizures in general affect the person with it and also all those who care about them.

Thank you so much for caring and supporting your boyfriend, you would be surprised how many people are non supportive for me its my mother and father yet my wife is over the top with her support!

John

 

[Nakamova]

Hi Sunflower, welcome to CWE.

It's great that you are so supportive for your guy! One thing you might do is keep a comprehensive seizure journal where you note down when the seizures or auras occur, along with a lot of other daily details -- info about meds/doses, meals, exercise, sleep patterns, etc. The idea is to see if there are any particular factors that might be triggering the seizures. They could be anything from fatigue, to food sensitivity, to lights, to stress. Some folks here at CWE have found that special diets like the MAD (modified Atkins) or a gluten-free one have helped with controlling seizures.

Another thing you and your boyfriend might want to look into is neurofeedback. It's a process where you re-train the brain through multiple sessions. It's not often covered by insurance, so that can be drawback, but otherwise it seems to be a very promising approach.

 

[Miss Choccy]

:e:

Hi Sunflower,

First of all - what an excellent name!!! Love it!!!

Like the others, have said it - its wonderful that you are so supportive to you boyfriend. Very sorry to hear that none of the drugs you boyfriend has tried is failing to helping to control his epilepsy/seizure condition. Hoping that it soon changes and that his epilepsy soon becomes controlled or at least more controllled!!!

Think the idea of the seizure journal - where you write down info such as food, sleep patterns, emotions, stress and many other things - detailed in post above - is an excellent idea. Hopefully this will help you and your boyfriend.

Please feel free to post again on any thing that concerns about your boyfriend's epilepsy or seizure-condtion!!! We are here to help. Also feel free to post on an positives you want to tell us about - we all love to hear about them!!!

Susan

Miss Choccy

:e:

 

[valeriedl]

My husband is very supportive of me, and I know sometimes he feels like there is nothing he can do, espically while I'm having the sez.

The only thing he can do is wait until I come out of it and then try to bring me back to normal. Alot of times when I have one I don't even know that I am having it so he gets me to sit down or get me somewhere that I won't hurt myself and just wait. I know you feel helpless but it's the only thing you can do. I'll usually have a horrible headache and he'll help me with that.

We do keep a jornal and keep track of every thing that went on during it and anything else that we might think that would be important that the neuro would need to know.

 

[sunflower323]

I have tried to have him keep track of what he eats, but he is adamant that his iet has nothing to do with how he feels. I am in the medical profession so this mind frame is so hard for me to accept because what you eat does have a huge impact in how you are feeling. He like gets irritated when I try and tell him to eat healthier or that how he eats plays a direct role in how he feels. Giving my input has put a huge strain on our relationship and it seems when ever I say X he does Y. He is constantly going off his meds saying they don't work when in actuality I don't think he is giving them enough time to work.

 

[Nakamova]

It can take a while to accept certain aspects of epilepsy, whether it's meds or lifestyle modifications. It may be that you have to back off for a bit and let your boyfriend realize things on his own. Is there any one he will listen to? Any third party that he will accept? His doctors should make clear that rapid cycling on and off of the AED meds can potentially make things much worse. (I'm a big fan of tapering on or off as slowly as possible, even slower than the standard recommendations.) Some of the meds affect mood, so if you've noticed that his emotions have become more extreme since going on one or another medication, that might be a factor to consider.