Husband has epilepsy...Please help

[ANGS1113]

Hi I am new here, hoping to get insight and advice from other people that can relate to my situation. My husband has his 1st grand mal in 2009 at 31 yrs old. The grand mal's continued and he was diagnosed with epilepsy in March 2010. We have a four year old son. It has been a constant struggle as to date we have been unable to control the seizures with meds and he is not a candidate for any of the surgeries. Recently my husband started having non epileptic episodes that happen daily at times numerous times a day. There are certain things my husband has been told to do that could affect his condition in a positive way and I find myself struggling daily because he doesn't do these things... When he starts having episodes he constantly fights me when I ask him to sit down so he doesn't fall etc...Please help, how do I get him to fight the disease instead of feed it?

[Nakamova]

Hi ANGS113 --

Any chance your husband could try neurofeedback? It can sometimes help in situations where meds have failed. Drawbacks are that 20 to 40 sessions are required and is rarely covered by insurance. Plusses are that there are no known side effects, and the effect is lasting after the treatment concludes (unlike with meds). Neurofeedback can also often help with attention, memory, and mood. More info is here: EEG Neurofeedback

In the meantime, it may be tough to get your husband to change his behavior right away -- often if you have a seizure disorder, you cling to the things that make you feel "normal" and independent, and resist modifications that make you feel like the seizures are winning. I realize this can be hard on you. It may take time for you husband to decide to take these proactive steps -- and it may need to be his decision rather than yours. Any chance you could get help from a third party in backing you up -- can his neurologist provide the extra encouragement?

lastly, are you positive that the daytime seizures are non-epileptic? That can a very difficult diagnosis to make -- the absence of EEG evidence is not necessarily a confirmation that the seizures are non-epileptic nature. if they are non-epileptic, counseling is often one recommended therapy. Is this something your husband's doctor has discussed with him or with you?

Best,
Nakamova

[ANGS1113]

We have not tried neurofeedback, I will have to look more into that. My husband is one of the most stubborn people in the world lol. I have had a room full of people at a support group back me up and that still isn't enough. I suppose it is a work in progress, for everyone.

The neurologist is not positive about the non-epileptic episodes but that is the conclusion he has drawn after three portable eeg's, video eeg, and regular eeg showing no epileptic activity. They also have not been controlled despite several medications. He sees a counselor weekly and a psychologist who specializes in epileptics once a month.
Thank you for your insight

[PAUL72]

sorry to hear about your husband, my wife is in a simular situation with uncontrolled seizures.We also have a daughter who's 9 now.I understand what your both going through.For us we've worked through many of the drugs suitable for complex partial epilepsy, we've had many up's and down's.
Paul
Derby (uk)

[KelVarQ]

Hi Angs,

Your husband sounds like me and you sound like my husband when I was first diagnosed. I'm sorry to hear this and I know this may not help but part of the problem, at least for me, was I felt fine when I wasn't seizing and had no memory of when I seized so in my mind I was fine. No matter how much my husband would tell me I wasn't it didn't matter because I FELT FINE. Needless to say I wasn't fine and my seizures became more frequent and I started breaking bones. So it took a long time and some cracked ribs and broken shoulder for me to realize that I wasn't fine. Meds had stopped working long before and I had the temp lobe surgery. Was seizure free for 4 years and today I now have nocturnal complex partials.

Today I've opted to do the Gluten Free Diet and I can tell you that I'm having a lot of success with it. I went from seizing every night to maybe 2 a month and usually it's because I accidentally had something with gluten or my menstrual cycle is starting or I skipped out on the vitamins. So perhaps you might consider the Gluten Free diet as well as the neurofeedback. I love the Gluten Free diet for helping control my seizures and it has me feeling better than I ever did, which is just an added a bonus. Good luck and remind your husband not to wait until he's FORCED to do something different because it's usually never good.

[RobinN]

Welcome Angs,
I see others have suggested nutrition a approach. It is the one thing that has made a difference in my daughters seizure activity. She is 11 months seizure free, and is not taking any meds now.

I can't recommend alternative approaches enough. My daughters seizure activity actually increased on the four meds she tried. Many are now saying that with improvement in nutrition many modern illnesses / disorders might be eliminated.

Sure is worth a try in my opinion. Be supportive and do it with him.

[ANGS1113]

Thank you very much for your support and advice. I am working with my husband to start eating anything at all at this point. He says he has no appetite and that is one of the issues we are having he takes 25 pills a day, doesn't eat, and drinks mountain dew all day. It is a terrible combination for his seizures, in my opinion. Slowly I have faith we will get this together one day. He is on zonegran and that med is a appetite suppresant but he still needs to eat. I am thinking of talking to the neurologist and taking him off of all the meds and starting fresh as it seems the more meds he is taking the sicker he is getting.

[Nakamova]

Zonegran was a real problem for me, in terms of loss of appetite and the reuslting stomach irritation. Not getting enough to eat also affected my mood -- it made me cranky and low. I agree that it's a good idea to discuss a change with your husband's doctor.