Epilepsy out of the blue..anyone else?

[Nakamova]

Yes, several folks here have tried neurofeedback. I'd like to try it myself, even though my seizures are controlled at this point. Unfortunately, it's not covered by most insurance, and practitioners trained in the epilepsy protocols can be hard to find.

Here are some CWE threads about it:
http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/
http://www.coping-with-epilepsy.com/forums/f20/qeeg-neurofeedback-19452/
http://www.coping-with-epilepsy.com/forums/f20/neurofeedback-therapy-11466/
http://www.coping-with-epilepsy.com/forums/f32/neurofeedback-rebeccas-story-2733/

 

[jeffrey wilson]

First sz was at age 21. Have had it ever since and am now 55. Like you I also thought that most people were born with this.

 

[screaminghelix]

First seizure when I was 13, not diagnosed until I was @34. I have also found out that exposure to lead or lead paint can also cause the onset of epilepsy.

 

[Laura]

Mine came out of the blue too, they think it was a delayed reaction to an accident that I had a few years previously were I sustained a head injury. You sound like you cope really well

 

[Wobblez]

I got stuck in the birth canal and deprived of oxygen before an emergency ceaser, but I also had a febrile convulsion when I was about 3, so the docs aren't sure what the cause is. I grew out of my epilepsy and although looking back I realise I still had auras and a very occasional partial, I went 10 years with no medication and no problems. I started uni in 2010 and had a lot of stress in my personal life and I've been on medication and having seizures ever since. Apparently spontaneous remission is quite common? Its the upside to spontaneous beginnings!

 

[Nicole]

Mine started 2 years ago.. no trama. How long did it take most of you to get your diagnosis? And who diagnosed you? I'm seeing a neuro at the end of June.

 

[Janus]

Wobblez; Mine are lots like your history. Motorcycle accident (coma etc.) in 1986. For about 16 years after I had complex partials. Docs sometimes called them Petit-MALs intermittently and I lived with "blanking out" periodically and no meds at all. Trying to monitor this and treat it has led to much more seizures. They turned into T/C in the last few years and i have been on a wild goose chase for me of finding the right med that will not cause more seizures (some do that to me) and only have tolerable side effects. For example I have High blood pressure and meds for that now too because of other meds.

 

[shonafrances]

The connection to lupus is very interesting and I am now keen to look into it as I have suffered joint pains since my teens that have been dismissed by GPs as never come back arthritic from tests, depression, anxiety, fatigue and possible seizures. My Granny had lupus (I was little so can't remember much about it) and Auto immune illness is very common in my family. I worry though if I go to my GP and ask for a test or referral they will think I am a full on hypochondriac (if they don't already!)

 

[rakowskidp]

Our son had his first tonic-clonic last December at age 13. In one sense, it was totally out of the blue.

He was diagnosed with autism at 2.5 years old (or thereabouts - my memory is fuzzy on this detail), so there could be a connection there (and it appears that research backs me up on this point - there is a significant rate of co-morbidity between epilepsy and autism). I suspect he's been having very short absence seizures for quite a few years, but I didn't recognize them as such, because they look a lot like the types of sensory avoidance strategies that are common to individuals on the autism spectrum.

My wife was in labor with him for a long time, though there was nothing else about the delivery that was particularly noteworthy.

So, yeah, I guess his diagnosis was "out of the blue," but it's hard to say so definitively.

 

[girlwithadog]

I'm 26 and just got diagnosed about 3 or 4 weeks ago.

But I may not be as new as my diagnosis. I've had blackout spells, fainting etc since I can remember. But they were never diagnosed as epilepsy. One bad thing about moving so much was that I could never keep my medical record up to date so no one was able to put the pieces together. My neuro thinks though that I've had them since a car accident when I was 5. But I've hit my head pretty bad twice since that time. At one point I was headbutted by a horse and needed 8 stitches on my brow bone and the next time was mid blackout where I fell and hit my head on the bathroom counter and ended up with an inverted concussion. Strange thing all three head injuries were on the same side of the head (right side, where my migraines typically start at). I dont know if we will ever know just how much the epilepsy contributed to my blackouts as a young child. I spent the last 12 years in and out of therapy with them convinced I had multiple personality disorder until a few weeks ago where it was confirmed it's seizures. Spent most of my life thinking it was psychological when in fact it's medical.

It's only a guess that my head injuries caused the seizures. But I have no clue why they have gotten worse over the last few years and turned into full blown seizures, unless it's drom being untreated for so many years.

You're doing great though if you keep away from the self pitty. It has eaten away at me since August 2011 and only lately have I been able to let go of it a little.

Hang in there, keep being strong, but don't be afraid to admit to yourself or anyone else just how hard it is to accept and how hard of a life change it is.

 

[mamasita]

Fiancé’s came out of the blue as well. November of 2012. Infection associated with the bout of pneumonia he had. He started to have really bad headaches, and was the type to never have headaches. Now, drug resistant left temporal lobe E. He has been in Hospital (neurological ward) in British Columbia for 2 1/2 months. They are now talking surgery.
Taking it day by day.