I am new to this. I was diagnosed with petit mal epilepsy at age 5. I had seizures until age 7. I had tried numerous meds. Either they didn't control my seizures or the side effects were horrible. I was swizure free until the early 90's. I was diagnosed with epilepsy in 2002 by an Army neuologist. my current neurologist did an EEG on June 30, 2004. it was abnormal and "potentially epileptogenic". She thought I might have Frontal Lobe Epilepsy. She tried me on Keppra, Carbatrol, and Dilantin. Again, the side effects were horrible. I asked her about VNS. She sent me to a seizure clinic. They told me that they wanted to see 3 seizures. The day I had my first seizure, the tech told me that the epuipment wasn't working properly. The next morning, the doc came in and said my EEG was normal and I had Psychogenic Non-epileptic Seizure Disorder and sent me home. Is it possible for epilepsy to just go away? Is it possible to have an abnormal EEG and NOT have epilepsy? She sent me to a psycologist who feels I DO have epilepsy. Can't find another doc in my area that is convered by my insurance that isn't part of my current doc's medical group. HELP!! What should I do??
I am so sorry that you have had so many problems! We know what it is like. MY son had an abnormal EEG at age 7 after a tonic clonic seixure and began treatment. We went to an epilepsy center and specialist for several long term EEGs and had mixed results, a misdiagnosis and they lied on reports. TOld us one thing to our face (epilepsy)< then told our neuro he had outgrown it, and hte report had a third version!
Yes, it is possible to have an abnormal EEG and not have epilepsy.....
it is also possible to have a normal EEG (usually not during a seizure) and have it still be epilepsy. On rare occasions the seizure focus is deep(in partial epilepsy not in generalized) and not show up on EEG...
I can just say to keep trying to document what goes on and keep looking for a nuero who will listen.
Was it your regular neuro who said it was nonepileptic? Sometimes this diagnosis is hard to get free from....it can be a true thing, but I think it is often a doctor's excuse for not knowing what is going on.
Hang in there Halo!
Yes, it is possible to have an abnormal EEG and not have epilepsy.....
it is also possible to have a normal EEG (usually not during a seizure) and have it still be epilepsy. On rare occasions the seizure focus is deep(in partial epilepsy not in generalized) and not show up on EEG...
I can just say to keep trying to document what goes on and keep looking for a nuero who will listen.
Was it your regular neuro who said it was nonepileptic? Sometimes this diagnosis is hard to get free from....it can be a true thing, but I think it is often a doctor's excuse for not knowing what is going on.
Hang in there Halo!
HALO,
To answer your question about it going away, it can stay dormant in your body and you may never have another seizure again. Believe me, I talk from 25yrs experience with this "seizure condition".
Your EEG could be showing seizure activity in the brain so as long as there is seizure activity, the Doc. will keep you on meds for insurance(also for your own safety)
This is one main reason why you should stay on your meds. even if you think it's gone unless told otherwise by your Doctor.
Is your Doc. aware of your side affects?
Do you still have your drivers licence?
It may take several different combinations of meds before the right "cocktail" of meds is found for you.
Randy (Ontario, Canada)
I was told by MY neuro that I have epilepsy. When I was sent to the seizure center (Froedert in Milwaukee, WI) they sent me home after seing only one seizure. The neuro there said that there was no abnormalities on my EEG and sent me home after telling me it was a typical seizure for me. (How would he know what a typical seizure is for me? He'd never seen one of my seizures, my wife wasn't there to tell him if it was, and he never showed me the video for me to try and tellhim if it was based on what my wife has described to me. In my research, I have discovered that typically the first seizure you have in a seizure center is NOT a typical seizure because you are not in your normal environment and that trying to induce a seizure will typically induce an abnormal seizure. Also, my neuro in her notes said that my 30 min EEG in June showed "During hyperventilation, frontally predominant high ampilatude theta activity" which she later went on to say was abnormal and "potentially epileptogenic". Also, she noted that she thought it might be Frontal Lobe epilepsy. Which I have discovered is very commonly misdiagnosed as non-epileptic seizures. She's now trying to pin the "seizures" on Post Traumatic Stress Disorder once she found out I was an Army Ranger for 9 years. Which military AND civilian docs have said I don't have. She contradicts herself consitently from visit to visit. There are no other neuros in my area that are covered by my insurance that aren't in her medical group. So, I'm afraid I'm not going to be able to get an unbiased 2nd opionon. I have been injured by the local hospital causing me to have surgery on my right shoulder in Sept when 15 male nurses, firefighters, police, and hospital security piled on top of me trying to restrain me when I was in the post ictal period after a seizure. I had become combative with a First Responder at the scene after my wife had told him repeatedly not to touch me until I could respind to my first name. I has sedatated once on the way to the hospital and then again at the hospital. THEN, I was sent to a mental Institution on a 72 hour mental hold where I was made to undress in front of a female staff member while she watched me take a shower, told that if I didn't behave that I would be put in a room I wouldn't like, told that if I didn't behave they would take my kids from me, I and my neuro were both told that if I had a seizure while I was there and accidentally damaged any property or inadvertantly hit someone I would be arrested and charges would be filed, AND they didn't have any meds for me and I wasn't allowed to take my own. I need help!!! I'm at a total loss as to what to do. Sorry to just completely vent on you folks like this. But, it just seemed to pour out of me. It's been a long time since I've been able to really talk about this. I had nightmares about being held down for weeks afterwards and I'm deathly afraid to go to ANY hospital now. Thanks for your kind words and your advice.
Halo, I am so sorry you have really been through the ringer! I do not blame you a bit for not wanting to go to any hospital. We have been through that with our son. There are so many cases of them misdiagnosing folks just like you and my son. Yes, frontal lobe is often misdiagnosed yet they keep insisting they are right. YOu should not have been sent home after just one seizure. yOU are totally right they should not TELL YOU that it is typical for you when they have not seen yours before....
WIll your regular neuro keep treating you? We ended up loosing ours since he could not believe that the center could be wrong. He kept saying "they are number on" except in my research they are never listed in the top 50 and I have found several folks who are in the same delemna of misdiagnosis....
We waited almost a year to go to a new place. Even then we had to go find one more, since the newest would test, but could not treat him, they have too many patients. SO it is very hard to keep going and hoping SOMEONE will listen...
I am so sorry that this has happened to you. I really do understand, even though we have been through it with a son and not myself personally....It all just stinks...
I would go back to your regular doc and explain what happened to you there and what you have written here says it well.
I REALLY hope you can find help!
HALO, 
Sounds like you're really being treated like sh--
Sounds like a good story for the media.Go Public with your story. Try to find an EPILEPTOLOGIST in your area. They specialize in seizure disorders only. You may have to be referred through your family Doctor. It also sounds to me that the medical centre that you went to did not research your situation properly and therefore you were probably mis diagnosed.
Tell him/her everything that you've stated in your post. Maybe even get him/her to speak to your wife about it. Were you overseas and did you see a lot of tragity? In other words can PTSD be justified? Maybe the abuse you took at the hospital triggered PTSD. Otherwise PTSD is a load of crap.
They threatened to take your kids away and/or press charges for any damage or injury you could cause to a staff member while having a seizure. 
At a hospital the staff should know what to do if a patient is having a seizure like clearing the area so they don't injure themself or others.
This is illegal and if what you're saying is true, I would definatley take this story to my congressman.(elected Government official for the state)
I worked for Veterans Affairs in Canada and I've seen a lot of PTSD cases in my office and I also attended lots of seminars about it so I know what can trigger an episode.
If you're medical insurance won't cover the cost, pay for the visit and send the receipt to yor insurer with a brief outline of what happened and threaten to go to the media if the situation isn't rectified.
Sorry, I can't offer any other advice but maybe Jen (Rocking4epilepsy) has some ideas, she's pretty good in this area.
Thanx for "venting", I do that too. 
Randy
Kayakmom,
My regular neuro will only keep treating my migraines. She refuses to go against the dx from the "Epilepsy Gods" at Froedert in Milwaukee, WI. Which is the epiliepsy center I was sent to. I have explained what happend there and she said the equipment must have been working since it recorded a normal brain wave. I asked her why my previous EEg was abnormal. She told me that drowsiness could be the cause for the abnormal activity. However, I wsn't sleep deprived. The abnormal activity was recorded during hyperventilation. These were her words in her notes. "Impression: Abnormal EEG. Frontally predominant high ampilitude theta activity seen during hyperventilation which is potentially epileptogenic."
Thank you for your support. I'm new to this forum. everyone here has just been incredible.
Shaun
My regular neuro will only keep treating my migraines. She refuses to go against the dx from the "Epilepsy Gods" at Froedert in Milwaukee, WI. Which is the epiliepsy center I was sent to. I have explained what happend there and she said the equipment must have been working since it recorded a normal brain wave. I asked her why my previous EEg was abnormal. She told me that drowsiness could be the cause for the abnormal activity. However, I wsn't sleep deprived. The abnormal activity was recorded during hyperventilation. These were her words in her notes. "Impression: Abnormal EEG. Frontally predominant high ampilitude theta activity seen during hyperventilation which is potentially epileptogenic."
Thank you for your support. I'm new to this forum. everyone here has just been incredible.
Shaun
Ranman,
Thanks! I hand't thought of going to the media. That's a really good idea. I am going to be filing a law suit against the hospital for injuring my shoulder. They completely separated the labrum (a cartiledge cup in the socket that keeps the ball from moving out of the socket and dislocating) from the top of my right shoulder to the bottom under my armpit. Which caused me to have surgery in September. I have told my neuro what happend at Froedert. She blew it off and basically she doesn't have enough self confidence to make her own dx and go against the "Epilepsy Gods".
Yes, I have been overseas. I have seen more horrifying things than probably 10 people see in a lifetime. I have seen the mass graves in Bosnia. I have operated in 12 different countries on 4 different continents. I was in Somalia. To this day I still can't watch Blackhawk Down the entire way through. So, I suppose PTSD "could" be justified. However, I have been examined by military docs and civilian docs and they all say that I don't have PTSD. My neuro is the one that started throwing PTSD around and in her notes she says that *I'M* the one that told her I have PTSD. Which is a complete and blatant LIE! She regularly contradicts herself from visit to visit.
The people that threatend to take my kids away were at the mental institution that I was sent to on a 72 hour mental hold for becoming cambative during the post ictal period. I had also been sedated TWICE. Which could have killed me actually. They also threatend to put me in a room I wouldn't like if I didn't behave. It was indicated to me privately by one of the staff members there that the ONLY reason I was there was because I am asian and not caucasian. I don't know if that's true or not. The only epileptologist in this area is the one that I saw at the epilepsy center. I saw here for about 10 minutes before I was admitted and taken upstairs for my monitoring. She also is an epileptologist who specializes in epilepsy in women. Not that she probably doesn't know about epilepsy in men too. It just adds to my mistrust of the center and their dx.
Thank you for your information and support!
Shaun
Thanks! I hand't thought of going to the media. That's a really good idea. I am going to be filing a law suit against the hospital for injuring my shoulder. They completely separated the labrum (a cartiledge cup in the socket that keeps the ball from moving out of the socket and dislocating) from the top of my right shoulder to the bottom under my armpit. Which caused me to have surgery in September. I have told my neuro what happend at Froedert. She blew it off and basically she doesn't have enough self confidence to make her own dx and go against the "Epilepsy Gods".
Yes, I have been overseas. I have seen more horrifying things than probably 10 people see in a lifetime. I have seen the mass graves in Bosnia. I have operated in 12 different countries on 4 different continents. I was in Somalia. To this day I still can't watch Blackhawk Down the entire way through. So, I suppose PTSD "could" be justified. However, I have been examined by military docs and civilian docs and they all say that I don't have PTSD. My neuro is the one that started throwing PTSD around and in her notes she says that *I'M* the one that told her I have PTSD. Which is a complete and blatant LIE! She regularly contradicts herself from visit to visit.
The people that threatend to take my kids away were at the mental institution that I was sent to on a 72 hour mental hold for becoming cambative during the post ictal period. I had also been sedated TWICE. Which could have killed me actually. They also threatend to put me in a room I wouldn't like if I didn't behave. It was indicated to me privately by one of the staff members there that the ONLY reason I was there was because I am asian and not caucasian. I don't know if that's true or not. The only epileptologist in this area is the one that I saw at the epilepsy center. I saw here for about 10 minutes before I was admitted and taken upstairs for my monitoring. She also is an epileptologist who specializes in epilepsy in women. Not that she probably doesn't know about epilepsy in men too. It just adds to my mistrust of the center and their dx.
Thank you for your information and support!
Shaun
Oh, my neuro stopped all AED's. I had to get my neurontin from my GP for what I can only describe as a growing pain gone very wrong in my left arm and leg. I also have a considerable weakness in my left arm and leg. The army Neuro dx'd me with epilepsy and a partial paralysis of the left face. Could this be the result of a mini stroke? If so, why wouldn't there be any sign of a stroke in any of the CT scans, MRI, or MRA that have been done?
Shaun
Shaun
SHAUN (HALO)
I'm interested to know the outcome of the lawsuit.
If you don't mind, would you keep me posted?
I wasn't aware that you were Asian. This is a serious violation of "The Human Rights Act". That just changes the "color" of the whole story and discredits the US Government. (it figures, the Bush Administration) Maybe the military didn't say it was PTSD so they couldn't be blamed. It sounds like another Government coverup.
This is 2004 and that behavior is just not acceptable, especially in the military.
I think you should go public with this.
Randy
Oh man, I am so sorry to read about what you've been through Shaun!
There is just no excuse for such a lack of patience and understanding. I really agree with Randy about going public with things, and definitely do keep us updated. Hopefully you can get proper treatment soon.
-Em
There is just no excuse for such a lack of patience and understanding. I really agree with Randy about going public with things, and definitely do keep us updated. Hopefully you can get proper treatment soon.
-Em
Randy, I've had civilian psychologists say that I don't have PTSD, too. The last one said I MAY have a touch of PTSD since I have nightmares sometimes. But, he said it wasn't enough to cause a seizure problem. It has nothing to do with the U.S. government or any kind of cover up conspiracy. PTSD is just flat out not an issue with me. Surprisingly enough considering all of the things I've seen and all of the Areas of Operation I've been in. To this day I still can't watch Blackhawk Down. I will definately keep everyone updated about the law suit. My wife has even emailed Montel Williams about what happend to me at the hospital and all. LOL Keeping my fingers crossed for proper treatment.
Shaun
Shaun
No one left behind!
1*
HALO,
Looks like you're making some progress.
If your story makes the Montel Williams show, let me know when it's going to be aired so I can watch.
Randy
Good luck with this and I hope Montel can help you. He is very in tune to all health issues due to his MS. I am crossing my fingers for you! Let us know how it turns out. Hope you are feeling a little better today. I do. Maybe cause it stopped raining :) Tracy
I hope Montel decides help. I'm really happy you're feeling better today Tracy. I am too. You were in my thoughts last night. Of course, since I haven't been able to go to sleep...I guess it still feels like night to me. My brain is cooking on all 8 cylinders and I kept my poor wife up all night with me writing my ideas down so my poor E-brain wouldn't forget them. I'm trying to get a concept down for a resort type place out west...hopefully in Colorado. I want to run camps for kids with epilepsy. Weekend retreats and week long retreats for all people with epilepsy. I found a place I really like that is for sale. Now all I have to do is find investors. HAHAHAHA! Wish me luck!
Shaun
Shaun
No one left behind!
1*
RLTW
Wow that sounds really fun and interesting. (The E Camp) That would be such a wonderful project. I don't know much about how to get something like that started but that is awsome. I hope you get some rest. Sleep is important especially when you aren't feeling so well. Thank you for the well wishes, I think that they helped. I hope you feel better. Tell you wife hello for us. Tracy :)
Epilepsy does what is called remitting, which means it either goes away adn stays gone (total remit), or goes away and comes out again later in life (partial remit), and petite mal epilepsy is known for that. IT can also come back as another seizure type or two.
Sometimes if seizures are really poorly controlled when they spontaneously remit, they will come out later in life as a result of some stressful thing or emotional thing. SOmetimes it can come out with a head injury.
That is sort of what happened with me. I have had it my whole life but had reflex epilepsy with Absence and myoclonics as a child and they stayed with me, and I had 3 concussions with the first one in 2001, and then a tree hit me on the head, and I was in a car accident in 2002, and then epilepsy came out more and more worse over time until it was throurolughly out of control adn I was taking 3 meds for it.
THe fact that the doc made an excuse when you did have a seizure about the equipment, I find hard to believe, he was using it as a cop-out. Then they never kept you in long-term for any length of time really needed to see a seizure occur. THey take you off your med after admission, and it usually takes about 2 days for that to work itself out of your system and then you will likely seize either by the 2nd eveneing or sometime on the 3rd day. I was kept in for 9 days and had 6 seizures that were recorded in a 9-days span, plus 52 auras, but they for some reason weren't counting them as seizures.
That particular unit I was in said that they like to see at least 2 seizures to be sure the same thing is taking place each time. Sometimes the EEG won't pick anything up, and that could be because the foci is too deep in the brain for them to pick up, so they resort to ones that can be inserted through the face by the ear adn go into the brain like that.
People who have NES, can also have epileptic seizures as well.
Nancy
31 years old--born with epilepsy--undiagnosed for over 25 years. Suffered bad abuse by dad causing repeated head injuries, 3 brain infections, 4 concussions, and shingles on the brain.
Initially diagnosed last April, and it was confirmed this March after a 9-day stay in the EMU.
Diagnosed with a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures.
I have epileptic aura, Simple Partial, Complex Partial and Secondarily Generalized Tonic-Clonic seizures (nocturnal), and a reflex epilepsy as well with Absence and Myoclonic seizures. Myoclonics do occur as regular seizures in me, not just as a result of photic responses.
I failed 7 other drugs.
I take Depakote-1000 mgs and Neurontin--3600 mgs
--TAKE WHAT YOU CAN DO AND DO YOUR BEST WITH IT!!!!
Sometimes if seizures are really poorly controlled when they spontaneously remit, they will come out later in life as a result of some stressful thing or emotional thing. SOmetimes it can come out with a head injury.
That is sort of what happened with me. I have had it my whole life but had reflex epilepsy with Absence and myoclonics as a child and they stayed with me, and I had 3 concussions with the first one in 2001, and then a tree hit me on the head, and I was in a car accident in 2002, and then epilepsy came out more and more worse over time until it was throurolughly out of control adn I was taking 3 meds for it.
THe fact that the doc made an excuse when you did have a seizure about the equipment, I find hard to believe, he was using it as a cop-out. Then they never kept you in long-term for any length of time really needed to see a seizure occur. THey take you off your med after admission, and it usually takes about 2 days for that to work itself out of your system and then you will likely seize either by the 2nd eveneing or sometime on the 3rd day. I was kept in for 9 days and had 6 seizures that were recorded in a 9-days span, plus 52 auras, but they for some reason weren't counting them as seizures.
That particular unit I was in said that they like to see at least 2 seizures to be sure the same thing is taking place each time. Sometimes the EEG won't pick anything up, and that could be because the foci is too deep in the brain for them to pick up, so they resort to ones that can be inserted through the face by the ear adn go into the brain like that.
People who have NES, can also have epileptic seizures as well.
Nancy
31 years old--born with epilepsy--undiagnosed for over 25 years. Suffered bad abuse by dad causing repeated head injuries, 3 brain infections, 4 concussions, and shingles on the brain.
Initially diagnosed last April, and it was confirmed this March after a 9-day stay in the EMU.
Diagnosed with a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures.
I have epileptic aura, Simple Partial, Complex Partial and Secondarily Generalized Tonic-Clonic seizures (nocturnal), and a reflex epilepsy as well with Absence and Myoclonic seizures. Myoclonics do occur as regular seizures in me, not just as a result of photic responses.
I failed 7 other drugs.
I take Depakote-1000 mgs and Neurontin--3600 mgs
--TAKE WHAT YOU CAN DO AND DO YOUR BEST WITH IT!!!!
Shaun (Halo),
I haven't heard from you in a while, are you still around? What's the latest update on your lawsuit against the Hospital?
Randy
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
I know how you feel about being diagnosed and such. I had my first seizure at the age of 8 in a clinic waiting room with my mom who is a nurse and has specialized in neurology. I wasn't diagnosed fully with Epilepsy until I was 15- I didn't have a seizure for 5 or 6 years and now I have one every six months or so which isn't too bad considering some people have them every day. The one problem I have with my Epilepsy is the convincing it took to get me fully diagnosed. Every test they have ever done on me has always been normal- I had tons of sleep-deprived EEGs, and an EEG right after having a seizure and they have all been normal. I have at MRIs and cat-scans and all different tests yet there is no abnormalities. My mom has witnessed almost every seizure I've had and varifies that they are totally Secondary Generalized tonic-clonic seizures, even people at the hospital, or clinic where i've had some of them said they were seizures but it took 7 years for me to truly diagnosed and actually treated. I just wish there was a reason why, I don't want something to be wrong with me but I wish there was something that the doctor's could point to and say- this is why you have seizures. So, I just wanted to say, I know how your feeling- I had one seizure and then went years without having one and now they're back! I guess all we can do is find a way to cope with them. GOOD LUCK HALO!
~Jessica
"Carry on. It is not easy. But it is what we have to do- only we do not have to do it alone."
"Carry on. It is not easy. But it is what we have to do- only we do not have to do it alone."
First seizure: 1993
Officially diagnosed: 1999
Type: Secondary Generalized Tonic-Clonic Seizures
Cause: Unkown, all tests are negative for abnormalities...
Meds: 750mg Keppra 2xday
Hi Jessica,
That just goes to show you that it stays with you your whole life but can stay dormant in your system and cad hit you at any time when you leaste expect it.
This is one main reason why you should stay on your meds. even if you think it's gone.
Randy
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day