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Struggling

Mon, 12/28/2015 - 13:04

My girlfriend was diagnosed with Epilepsy a few years ago. She has had issues for most of her life but they were always passed off as panic attacks. We have been together for 4 1/2 years. We both have been married and divorced. We have kids from our prior marriages. We have had a lot stressors just with our past lives and families alone. Her seizures really increased quite a bit in 2013 which prompted deeper investigation and an eventual diagnosis. She was put on meds and they have helped.

She has temporal lobe epilepsy. Her seizures are Simple Partial. She also has a lot of anxiety issues. She is able to work and gets her child to needed places. However when it comes to quality of life she really doesn't have much. We tried in the past to go places only to have to turn around because a spell starts and she wants to go home. She has had a few successes but she limits herself quite a bit. We really don't do anything. She tells me she is doing all she can and she is trying to make things better but she doesn't even listen to the doctors advice of changing medications. She'll have a few weeks where she'll have little auras but she works through and she thinks she doesn't have to change anything, but then she'll have a full spell (for what she has) and then she starts saying how she needs to do something different. She is mostly all talk.

I am the only one in her life that really has been supportive of her. Her own family doesn't really believe this what she has. However I am startiung to get down on the fact that this has been my present and will be my future. Basically nothing. Not experiencing life. Her meds make her really iritable but she denies that when I say it. However she says it when I get upset at her for talking not so nice to me. We just went to a doctor visit and he wants to change her meds to one that has a Blackbox warning. This was the med that they wanted to initially put her on and she refused because of this. The doctor (who is pretty well reknowned in the Epilepsy field) explained why it had the Blackbox warning. It had to do with the short period of the trial and the ramping up of dosage too quickly. He outright said if he had epilepsy he would to this med. She took the prescription but said she probably won't fill it.

She will tell me over and over she is doing all she can but she really hasn't done much. She doesn't do much for herself. She says she does. She writes lists of things she wants to do. Occasionally she'll do a little Yoga but then stops. I don't want to schedule any quick weekend getaways because I don't want to lose my money because she decides she can't do it.

I feel good about how supportive I have been but I am struggling that she really isn't doing much for herself or to try and get as close to seizure free as possible. Me... I would be trying all I can to have the best quality of life as possible. I feel bad but I didn't sign up for my life to just be this. I feel awful feeling this. BUt she is depressed and she won't really admit it. Sh isn't helping herself but she won't really admit. I don't know that I can stay in this. I really feel like crap saying that, but I don't know that I can continue.

I have no idea what she feels with having Epilepsy. I just know that she really isn't trying all she can for the best quality of life. I apologize for the rant, but I needed to hget this out somewhere.

 

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