Troubled Adult with an Epileptic Parent

[grady]

Greetings Everyone,

I hope you'll forgive me in advance for what may seem like an incredibly self-centered discussion topic given that my challenges are nothing compared to those who actually have epilepsy and seizures. I hope that despite this thread, everyone will realize how very much I empathize with those suffering from epilepsy and applaud their courage!!

That said:
I am a 39 year old woman who grew up with a wonderful, resilient mom with grand mal and petti mal seizures resulting from infant enchepilitus. Due to the incredible wonders of science, my mom no longer has seizures - having gone through a partial, left-temporal lobectomy in 2000. With only a couple of incidence (perhaps three?), she's been seizure free ever since! ...Unfortunately, though, she's been riddled with almost every other health problem imaginable - breast cancer, uterian cysts, bladder complications, and now RA. Needless to say, my mom's resilience has faultered given these ever-continuing health problems. I worry for her future emotional and physical well-being, and try to advocate for her by seeking out new clinical RA trials in which she might be able to participate.

On to the more self-cetered side of this post: Ever since I can remember, I have suffered from emotional problems (panic attacks, depression, and a sense of overwhelming guilt). Although I'm certainly genetically prone to the depression, I suspect that the panic attacks and guilt that I continue to feel are at least partially explained by my early experiences with my mom. My father, a wonderful man, was a a workaholic in my early childhood. Consequently, he was not around too terribly much, and my mother and I basically took care of one another. ...There have been a couple of extremely traumatic experiences I've had with my mom a grand mal seizure she had when I was about 4 or 5 during which she lost consciousness on one of those old gas, heating grates on the floor, laid there for who knows how long, and suffered third degree burns up and down her thighs, and later a grand and then petit mal seizure that lasted for almost 13 minutes in a NYC brownstone in which I was moving in (no phone available to call for help, no neighbors I knew of, etc..).

To the point: Are there any other children of epileptic parents out there who continue to struggle with the possible emotional effects of their caregiver's seizures? Anyone who has any tips on how to overcome these early traumas? I've seen therapist upon therapist w/out luck and am hopeful that in hearing from someone else's experiences, I might be able to better understand my own difficulties.

To parents w/epilepsy raising young children: Please note, this is not a condemnation, nor is it a message suggesting that your child/children will suffer psychological difficulties due to your seizures. Growing up with my mother has made me a much more emphathetic person; watching her courage has provided me with great strength and belief in the human spirit. I suspect that given my genetic make-up, though, coupled with these early traumas, I'm simply a bit stuck and am simply trying to better understand how to move on.

I would truly appreciate anyone's willingness to share his or her own experiences with me, discuss your strategies for moving past the guilt of such helplessness, etc..

Thanks in advance for sharing your stories with me. Although I'm an agnostic, if there is a God, I hope that she or he blesses you for your courage and strength in battling this potentially debilitating disease!

Best Wishes,
Grady

[Nakamova]

Hi Grady, welcome to CWE!

I appreciate your sensitivity in approaching this topic, and I'm glad you've come here for advice and support. We do have a number of caregivers as members, and perhaps they will chime in with their perspectives.

I don't know what medications (if any) or therapies you've tried to help cope with the PTSD you're experiencing, but it sounds like they haven't done the trick. You might want to consider neurofeedback. Not only has it helped people with seizure disorders, but it has also has shown promise in treating PTSD, depression, anxiety, and ADD. Unfortunately it's only rarely covered by insurance, and it may or may not be available in your location. You can read a bit about neurofeedback here EEG Neurofeedback and I also recommend the book "A Symphony in the Brain."

You might also find comfort in a group therapy setting, perhaps something similar to Al-Anon, which is designed for family members of someone who has suffered from an illness or addiction. A therapist would be able to point you in the right direction, if you think that might help.

It sounds like you are a great supporter and advocate for your mom. A chronic illness -- whether your own, or that of someone close to you -- can easily absorb all your available time and energy, so make sure to find ways to take care of yourself as well.

Best,
Nakamova

[grady]

Hi Nakamova,

Thanks for your thoughtful reply! I truly felt ridiculous placing it on the blog to begin with, given that I am a healthy individual. ...I'll definitely look into the book you mentioned, as well as neurofeedback.

I try to be a sensitive and supportive daughter/friend to my mom, but I'm afraid that she may well have given up the "fight." I imagine that after struggling with chronic health issues for so very long, you reach a breaking point. ...I'm no longer sure how to reach and help her. ...Like Epilepsy, there's no cure for RA, and she simply must live with the pain. I will continue researching options for her, though, and do the same for myself.

I wish you all the best with your own battles. Please let me know if I can pass along any information that may be of use to you (the doctors' names who eventually helped my mom w/surgery, etc..).

Thanks again,
Grady

[tase37]

Hi!
Sorry to hear about your mothers health issues.. there are lots of great people on this site..my situation is different to yours..I too am "healthy" but my baby started having seizures when she was 2 days old..I know how you are feeling when you watch someone "suffer" and there really isn't anything what you can do I am presently on antidepressives..and I see a psykiatrist every now and then to talk about the feelings that just seem to pop up every now and then..I don't think it matters are you young or old..it's always heartbreaking to watch your loved one have a seizure and I don't think you ever completely get over it..but in time you learn to understand it better and except it!
Wish you lots of luck..