is it epilepsy or not?

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!

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, 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

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

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

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.

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

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 :)

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

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

Hi guys,

GREAT topic, here, and good answers.

I just have one problem with Jess's seizure type is, because you don't just have it by it'self.

They need to do long term monitoring with her, so that they can catch where the activity starts, due to the fact that Secondarily Generalized TCs HAVE to evolve from either a Simple Partial or Complex Partial seizure.

There is no two ways about it. It is secondary to another type of partial seizure, and when the SGTC is the only thing that is seen by naked-eye, all the other symptoms for the SPS or CPS have evolves so fast that all you wind up seeing is the TC part of it.

I can guarentee you that for a fact.

I have a form of TLE called Mesial Temporal Lobe Epilepsy Syndrome, and I have epileptic auras, SPS, CPS, and SGTCs. They have differentiated the two in me, by that long-term monitoring, because I had both typs of convulsive seizures in there. The symptoms of each are the same, but one hits both sides of the brain from on-set, while the other one is secondary from a focus that starts spreading to other places, and they can catch that with VEEG.

I also have JAE or Juvenile Absence Epilepsy, another syndrome that is a life long thing with a genetic trait, and that is where I have the Absences and Primary Generalized TCs.

The Myoclonics I was born with.

The last Primary Generalized TC I had was one week ago today. The last partial seizure I had was on the 23 of December.

I just had to have my Depakote levels increased so now I take 1250mgs of that.

I also take 3600 mgs of Neurontin daily and have for 2 years. She may have to have a VEEG done in order to correctly diagnoses this, so that they can get you on the right meds.

My epilepsy was diagnosed 30.5 years to late, and has messed up my whole life. Sometimes a undiagnoses or a mis diagnoses can lead to further problems with seizure down the road.

I coudn't finish med school which I was 10 months away from doing 5 years ago, and had to go into something else with all the coursework I already had taken. I was studying to be a neuro, and had all my rotations in the local EMU, and I LOVED IT!! I though it was fun to be with those people, and cheer them up, visit with them, and still study.

Now I am one of THEM, and have seen it on both sides now, which is kind of interesting, because the last thing I wanted to be was diagnosed with epilepsy. I was scared of seizures all the way through grade school, and had nightmares for two weeks everytime either one of my two friends had them. My little friend and locker partner, whose name was Shelley had some variant of petite mal and SPS. My friend Christopher had TCs that were out of control, so the whole class got to watch his, and it was just gross.

Nancy

Now it makes sense.

I have SGTCs that come off both SPS or CPS. I got to be one of the lucky ones who got all three types of seizures in that disorder. Some people only have one, some have two, and even rarer some have them all.

I can never get or have ANYTHING that is normal. It always has to be something different.

Like we are taught in medical school WHen you hear thundering hoofs think HORSES NOT ZEBRAS. That jsut means to look for and treat everything that is common, before you start playing around with ruling out the uncommon things, because occasionally you will hear hoofs and it will be a zebra. They just want you to use your head is all.

I am not sure how many of you actually have more than ONE Epiletic syndrome. I have two of them together, which is how I got so many types of seizures.

THe MTLES carries the epileptic auras, SPS, CPS, and SGTCs.

That is a syndrome caused by outside occurances, like all the years of abuse, concussions, broken jaws, brain infections, and scarring. It is a sub-type of TLE.

Then there is my JAE Juvenile Absence Epilepsy, and that carries with is Absence (main seizure type), and GTCs. Same family as JME.

It is inherited and will never go away, neither will the TLE, because it occured after 25 years old.

Then I have the Myoclonics I was born with. My birth mom did stupid things while carrying me. She smoked like a chimney, drank like a sailor, did pot, and some harder drug, and I was born going through drug withdrawal having Myoclonic seizures. The JAE didn't kick in until about 13 years old. But we still never figured out what was causing me to be sick, and I couldn't describe it, because I didn't know how to.

So, I have 6 types all together.

I hate it, I really do, even if I have a big mouth on here, with my medical school knowledge, that I will never get to use anywhere, because I was 10 months away from getting my MD 5 years ago, and had to drop out due to my own health, and couldn't complete it, so I got a degree in Health Care Services. I did that with active and obvious seizures, so don't give up, those of you who are in college or high school, because it can be done, I did it, and under the gun, by some harrassing teachers. I did get about 14 accomodations to help me succeed. I got Bs the last 3 years of school, and I got Bs and Cs in med school, and that is a tough program to get into.

My rotations were done through an EMU since I was studying to be a neuro, and once in a while, they had me in the neuro-trauma unit with those patients.

DON'T LOSE HOPE, YOU CAN ACHEIVE ANYTHING YOU WANT, IF YOU JUST TELL YOURSELF YOU CAN AND BELIEVE IN YOURSELF!!!

Enough of this nonsense, because now this is starting to go nowhere.

Nancy