My son Jacob was diagnosed with epilepsy when he was 9 years old, he is now 16. His story has been a nightmare. We have been to 4 different Nuero's, at 3 different hospitals, in three different states. We have been told he has epilesy, he doesn't have epilesy. He has seizures, doesn't have seizures. I have been accused of causing anxieties in my son that led to non-epileptic events, (seizures not showing up on the EEG, along with seizures that did show up on the EEG during a long term monitoring stay). So I can feel your pain as I read through these comments.  We are currently seeing a Nuero at Mayo, very good people to work with. They have diagnosed Jacob with Intractable Epilepsy, with some non-epileptic events. So he has both types. Although the Nuero we just left from Milwaukee finally called in another research Nuero to consult on Jacob's events; his conclusion; these are all seizures.  I'm having these videos and EEG's sent to Mayo as we speak. The one thing I have learned through this journey so far is not to give up, and if you are unhappy with the course of treatment with your current doctor, move on. Get yourself to a good research hospital or clinic for the latest cutting edge treatments, and awareness for this condition. Our local hospitals don't have a clue on what to do for people with this level of complexity.  And don't even get me started on the lack of understanding in the school system!  I'll leave that for another discussion.  Best of luck to all of you out there with this health issue.  Keep on those doctors out there, we need more research and treatments!

Hello,

My name is Corrie and I also experience this dilemma. I was recently diagnosed, about 10 weeks ago. My first EEG was abnormal but after having no luck with the meds I was referred to an Epilepsy unit. They did not pull me off my meds, and I had attacks that did not show abnormal brain activity. They told me I do not have epilepsy..so now I have 2 doctors telling me different things. The second dr wants me to see a shrink as he fells its depression and Anxiety. My primary Nuero says Epileptics can have Psuedo siezures as a result of diagnosis or a side affect of meds. Hope this helps..Im right there with ya. :)

Our 15 year old daughter was diagnosed with NES. She suffered a concussion Sept.2008. Had headaches following but then 2 weeks later, about 20 minutes after a Tdap vaccine, she fell unconscious for 90 minutes. Subsequent episodes of unconsciousness have occurred ever since. About half of them involve seizure activity. Most of the time she has a warning: sudden nausea & dizziness; other times she falls flat on her face. 1 to 8 times per week. Sometimes 3 per day. Usual LOC is 5 minutes, sometimes more. Lots of ambulance rides & admissions. But all tests came back normal: EEG, V-EEG, ECG, cardiac event monitor, endocrine, cardiac, sleep clinic, MRI & CT. Her symptoms are similar to epilepsy, almost all of them from this epilepsy.com web site. Triggers can be similar too. She was otherwise super healthy. Emotionally & physically healthy. We were told that psychotherapy was only treatment. One year of counselling hasn't stopped them. No psychological trauma pre-empted them. Home is loving & stable. She has supportive friends. But not knowing what is causing this is extremely frustrating & stressful for all of us. Even tried SSRI for 10 months; no change.  We recently took her to a naturopath who suggested a good immune system boosting diet - just started that 2 weeks ago. She has less NES if she gets at least 9 hours of sleep at night. Counselling to cope with the embarrassment & frustration of having seizures everywhere she goes. Still plays sports. She was a great student but now has difficulties concentrating. Has frequent nausea & tiredness. If she has 2 or more NES per day she is so tired she comes home to sleep before returning to school. Lots of education on our part to the high school staff. And lots of prayers for our understanding & acceptance of a very difficult, life-altering condition. Keep researching everyone. I see someone mentioned POTS; we thought that too until the cardiac event monitor showed normal. My husband & I still research on the internet every day. We were told one year ago that we might never find out the cause - but we didn't accept it then. I thought there had to be a reason & we have kept digging & digging & digging. But we're exhausted & we still don't know. The brain is an incredible amazing organ, and there is just so much we still don't know. But if we don't know why some people get epilepsy, it stands to reason that we might not know why some people get NES. Not everyone falls into the norm. Our own conclusion is that for our daughter, a concussion coupled with a vaccine, occurring in her vulnerable hormonal 14 year old body, has triggered NES. Oops - this is getting too long. Best wishes to all people with NES.

Hi jessica

I was diagnosed as having epilepsy when I was 12 years old (I'm now 31) and have recently spent 2 weeks in ICU as I was having so many seizures & was in "status epilepticus" and they couldn't control my seizures, even though they had me on numerous IV drugs - however, I've just moved and so hadn't been to a neurologist here. In hospital, I had an EEG done and it came back clear so was told my seizures were psychogenic & I was not an epileptic.  That hit me hard as a colleague was given teh info as I wasn't conscious enough to accept the info and so she spread the news that it was "all in my head" and "attention seeking" and because I was suffering from "psychological issues".  When I had recovered from the post ictal memory loss and confusion, I phoned my previous neurologist to clarify this new diagnosis.  Apparently, you can have 10 different EEG's and 9 of them could come back clear but the 1 could show epileptic brain patterns and therefore you are epileptic.  I've had a few in my life and they've all come back saying I am epileptic, except this last one. Therefore, what I'm saying is that you may or may not be - there are various thigs which cause epilepsy or epileptic - like symptoms.  However, EEG's aren't always accurate. Good luck getting an accurate diagnosis and therefore getting the correct treatment.  I know that hypoglycaemia can definately aggravate seizures, so the ketogenic diet, or something with reasonable amounts of your good fats can be very beneficial.

I can totally relate to all of your stories.  For years now I've been bounced around and told ten different versions for from ten different doctors.  I'm fed up too. 

Mind you.  I've only ever had two small 15 minute long EEGs and no real trials on AEGs and I'm Canadian where they have a real problem with treating women fairly.  I've been really sick on and off for the last ten years and I'm just getting my first MRI in three months from now.  (I'm so scared and happy at the same time that I just can't explain it). 

 I'm sure i'm just nuts, but my problems are so physical in nature that I really want to have some more diagnositic testing done. 

If were you guys, I would also insist on having your hormones checked out-- men aswell.  Cortisol, aldosteron, parathyroid, testosterone, estrogene, prolactin levels all have huge impacts on our bodies.  My dad had many psychiatric problems for years and then, OOOOPS!!!, the doctors noticed he was missing a hormone.  He was totally fine after two shots.

sigh.  Mediicine is an irrititating business isn't it.

my fiance had what appeared to be a stroke following a fall in late january 2007, in february on valentines day he started having what appeared to be mild clonic-tonic seizures. he started having just a few each day then he started having partial GM's as well adding to the full gm's, then he developed petit mal seizures too. they did every test they could do and then some, all tests came back normal, all of them. so they thought it was psychological and tried him on psych meds, only made the seizures worse. In addition with each seizure he loses another chunk of memory, at first just minutes, then hours, now he loses days, and his short term memory is greatly affected too. he was into extreme sports, now he is in a wheel chair, can't even move himself because his left side is toast, he has had two more apparent strokes one in may 07 and one in feb 08, again all tests, mri, cat, eeg, blood, everything shows no injuries no abnormalities. now he just keals over into a massive GM with posturing, trying to turn his body intoa pretzel, the wrong directions, loss of bladder and bowel, he stops breathing, and is post dictal for hours and losing whole days of memory. in Jan 08 they put him on klonopin, which lowered the number of seizures from 50-60 a day to 10-20, at least half of which are the worst kind. My kids and I tag team him to keep him from hurting himself, and we have the bruises to prove it. He tried to kill himself in late Dec and early Jan, he had had enough. He and we have no life but waiting for the next one. He is either in his wheelchair, or bed, mostly bed, and we have exhausted all medical knowledge in the stateof alaska. They want us to take him to Ca to Loma Linda but i don't see the point, it is obvious that the seizures and stroke like symptoms are comming from somewhere other than his brain, but they even ran cancer tests, all negative, so far they found three hernias, all from the seizures, a cyst on his right kidney and a couple bulging disks in his lower back, but with no nerve inpingement. We are at our wits end, and we have almost lost him twice due to stopping breathing during a seizure.                                                                 But and this strange and reinforces my thinking that he has a nerve inpingement, but in his neck, not his lower back. he had a very severe synchopy proceeded GM with all the trimmings, and when he fell he struck his basal skull and upper neck on our shoe rack, before I could get to him, he had been seizing for about 45 seconds while his neck was still on the shoe rack at greater than a 90 degree angle, I of course had to move him, a little ways to ensure his airway adn get him off the rack so his neck was able to be stabilized, i know it ws risky, but necessary in this case to prevent even grater injury to his neck from continuing to seize on the rack, he was transported tothe ER, which ahad told us months ago not to come back unless he had worsening or new symptoms because there was nothing they could or would do for him, all they did was an mri of his head and neck, which came back normal, as usual and sent him home, no c collar, no pain meds or nothing. Two days later he was back as per his doc, and they gave him the horse collar and sent him home nothing else. What is unusual is that teh day after the injury, he had only 9 seizures, seven mild fm's and two bad ones, 7 the next day, only one bad one, 4 the next day no bad ones, 1 the next day very mild, and none yeaterday, no seizures at all. Today as well he has had none, and it is 11 am here. Also, he can now wheel himself around in his chair, he still weak on the left side but can use it better than he has in a year, he is even walking a little better, though he still lurches like dr frankensteins assistant on all the old monster movies, he says, "just call me igor" it is nice to see him joke it has been so long. His doctor doesn't even know about the new developments as she is on vacation until friday, I am going to ask for a detailed MRI of his whole neck and basal skull, there has got to be a nerve blockage or bulging disk, somethig to explain why he is getting better after the fall, remember it was a fall that started all this in the first place, could the doctors have been missing the real cause all this time, even with several mri's and cat scans? I apologize for talking so much but I havn't had anyone to bounce this off of and the doctors won't listen, i have been officially labled a trouble maker. The only thing is is that his memory has shown no improvement at all and he is in a great deal of pain. he has pain radiating from the injury site through both shoulders and down his spine, but no tingling or lossof sensation periferally, so that is good.