Epilepsy and Age

[Katie]

Hi all, I was wondering if anyone had answers to my questions.

I'm 24, I've had epilepsy since I was 10. I have JME and petit mals. It's very well controlled under 500mg Keppra XR, but I do have breakthroughs. I've had one grand mal at age 16.

My uncle is in his mid-60's, and was diagnosed with epilepsy a few years ago. Out of nowhere. No known injury, etc. He's the only one in my family who has epilepsy besides me.

It came on very suddenly late in life and is completely uncontrolled. He's been on multiple meds, had one brain surgery (I forget which) and that had no effect so he's now going on to VNS. He cannot be left alone because his grand mals are violent and he has injured himself already. It's very scary.

I want to know if my epilepsy has the likelihood of growing worse as I age. We're all very worried about him, thinking about SUDEP or a serious injury from a seizure. We are upset because he really can barely be left alone and can hardly do anything by himself anymore. He's become very depressed and it's entirely understandable.

And at the same time I have this fear that I might end up this way. What's going to happen to me? Will my meds work forever? Will my seizures get worse? Will I need surgery? And if they do get worse suddenly, will I be alone and get hurt or die?

I'm upset for him and worried for myself. I don't have a neurologist right now and is like to see one and talk to one but it's so hard to get in. And I like you guys better.

Thanks.

 

[Chaz1]

Katie, hello.

I am so sorry, this is real hard going. I can understand your worry...Epilepsy does not always progress, but sometimes it does. But you cannot allow yourself to be consumed but what might be. What is most important is seizure control. You should be under the guidance of a specialist, there are many good ones out there and if you don’t like one you keep moving until you find one you do like and are comfortable with.

This site is super informative about all types of seizures and some (please see past the word child as this site is suitable for all, Im 48 and my Son 27 has E).

http://www.theseeprogram.com/html/s_e_e__library.html

big hug..

 

[Nakamova]

Hi Katie --

I hope your uncle gets control of the seizures soon. Epilepsy is a lot to deal with at any age, but perhaps especially so when someone is older, more fragile and/or more sensitive to some kinds of loss of independence. A lot of people think that seizures occur most often in infants and very rarely in older adults, but studies indicate that seizure disorders actually increase in incidence and prevalence after age 60. That said, your uncle doesn't fall into all the high-risk categories for SUDEP, so try not to dwell too much on that possibility -- for you or for him.

There are so many different varieties of epilepsy out there, and accordingly, not a lot of ways to predict what will happen in any given individual. But it sounds like your uncle's epilepsy is of a different form than yours, and as Chaz says, don't let yourself get paralyzed by what might be. Take reasonable steps to live your life safely and happily now, stay alert to ways to be proactive and maintain seizure control, and don't let anxieties about the future prevent you from making the most of the present.

 

[MuayThaiFighter]

I'm sorry about your uncle and I can understand how you feel. I am your age, and i'm in the dark with my seizures. The people in my family that have seizures don't have the same situations I do. I wish I had better information but genetics don't seem to always determine how your seizures will turn out. I just hope that your seizures will always be well under control and im glad you are doing good now.

 

[Katie]

Thanks all. I try not to think about it too often, but I do hope that it's not how I end up. I'm also hoping that none of my other family members go through this as they get older. My uncle is the oldest of 5. My mom is the middle child. Time will tell. Luckily we are all very close. Even though only three of them live close together (my mom and two of her brothers - including the one with epilepsy) we are always there to take care of each other. I couldn't imagine it any other way. At least I know I have family to rely on. It's honestly probably been the biggest blessing not just with my epilepsy but with everything.

Thanks again all. Chaz, that website is very nice and informative. Thank you.