Seizures vs NES

TH. Night apparently I called EMS I was told I'd had a 6 min seizure in the ambulance. Then more in the ER. I'd been given Valium, ativan, and Dilantin. The neurologist, who was on call, said to me the next day that what he saw didn't "look" like seizures to him, and therefore he didn't believe that I had seizures. NO EEG was Done, apparently I was confused, disoriented, agitated,ect. and they couldn't get it done(?)I dont remember. for the last few weeks I have been feeling like I'm drowning and I wake up to me thrashing around, in my dream I am trying to get out of the water. I am thinking this is what the neuro saw that night(?) but I can't be certain I don't remember anything. Now my neurologist REFUSES to order an EEG although I did have what HE personally has told me is seizures 3 times since I've been home.

HX: Female pt w/diagnosed history of possible seizure events,past meds:Neurontin, Depakote, Keppra.
symptoms relieved with Keppra as monotherapy. Past recollection of possible seizure: I had a really bad spell of disorientaton/confusion and feeling very strange, later woke to paramedics surrounding me. They all said I'd had a seizure. I didn't go to the hospital. I got a ride home, went to bed. That night I felt the same way and went to the hospital. I was told there that my EEG, MRI, CT were clear and that most likely I'd had a seizure earlier in the day. I had a infection, sleep deprived, not eating right then started my period beyond being stressed to death.

[CCF-Neuro-M.D.-SH]

Please keep in mind that I am unable to diagnose you since I am unalbe to examine you, this forum is for educational purposes only. First of all the situation and symptoms you describe are typical of a person with epilepsy. You deserve a very intense workup to determine the cause of your seizures.  This includes a special MRI (thin cuts through the temporal lobes, hippocampal volume calculation), EEG, metabolic lab tests and in some cases PET scanning and /or genetic testing.  Many patients WITH epilepsy have normal EEGs at the time they are done, and they are only abnormal during a seizure.  Therefore, in cases of refractory epilepsy the standard of care is to admit patients for a prolonged EEG 2-7 days(in an Epilepsy Monitoring Unit) to capture 1-3 of your seizures on EEG.  If your seizure is without EEG change, this may be because they do not have sensitive enough evaluation (ie sphenoidal (cheek) electrodes,etc).  Psychogenic seizures are only a diagnosis of exclusion after an extensive workup, and most patients with Non epileptic seizures "pseudo-seizures" also have real seizures. There are certain clues that indicate a seizure may be non-epileptic such as hx of sexual abuse/extreme psychosocial stress, long dramatic seizures (greater that 10 minutes with eyes closed, criss-cross arm movements and pelvic thrusting). However ALL patients deserve EEG data and a complete seizure work up. No one should be dimissed without data. There are many doctors and even neurologists that do not recognize the subtle nature of seizures and that "partial seizures" can be very dangerous/life threatening.  I am sorry that you have encountered some problems in your seizure workup.    I reccomend that you travel to a comprehensive epilepsy center and be evaluated by an epilepsy specialist.  FYI: aggitation and strange activity is common after a seizure and should not arouse concern, but would indicate that you should not be alone when you are at risk for having a seizure.  For your own safety and the safety of others, you should not drive, operate heavy machinery or bathe/swim alone.  I hope this has been helpful.

[IMPO2004]

Thank you, you pretty much just confirmed what I'd already known. I think after one EEG ruling out E after this Dr doesn't even do a workup doesn't make sense.  I have not been under a lot of stress lately and there is nothing to suggest that the episodes were not seizures. I ran into and spoke to one of the medics he said it most definately was a seizure that he saw. I just want truthful honest answers.

[jan]

You were primed for one with all you described.  I have had several normal EEG's and was hoping to get released next visit. However, at the last visit he told me he is suspicious of them just being to deep to register on the EEG.  

If you would like to visit a friendly forum for those with E, here is the link:

http://brain.hastypastry.net/forums/forumdisplay.php?f=133

[jan]

I just wanted to let you know that I got a message the forum is down at the moment.  They are working on something.  So, if you have tried and couldn't get it, give it a try later.

[swoozie girl]

About four weeks ago, I experienced a seizure for the first time. Before it happened, I wasn't "feeling right" and became increasingly aggitated, had trouble seeing or focusing and then began to cry uncontrollably. I never "wet" myself though. The person that found me said I foamed at the mouth was in and out of consicousness then finally seized. I don't remember. I do remember having another "seizure" on the ambulance, in the ER and then later that night in my hospital room. My right arm would start to shake then my fingers would curl in and my arm would cross up to my chin. At the same time my right foot would posture.Oh, & I would begin to sob like a blubbering idiot for no apparent reason! Since this happened I have not had another "seizure" but my right foot will posture several times a day making it difficult to stand or walk. My hand shakes or twitches occasionally & I am easily aggitated, distracted & unfocused. I find it hard to get through my day. All my tests came back "normal" I am a 34 yr old mother of four and scared constantly. The neurologist here gave me a bottle of xanax said to take 2 a day and relax! HELLO!
Is he kidding? Both feet are so cold constantly they feel like pins & needles are poking them. Everything I have read says this is not epilepsy(thank God!) So what could it be & should I ask for other tests? I am heading into Houston at the end of the week to see another neurologist. I know this was a long post but I've never done it before & I'm not talking to anyone about this here because I don't want to seem like a whiny-butt...

[jan]

Unfortunately, the site I gave a link to is having some serious problems.  But keep checking it out, because you will get so many ideas and suggestions from the people there.

Did you get an EEG?  Did the event take place during the EEG?  If not, you can't be too sure it isn't E(pilepsy).  Even with a normal EEG it doesn't mean you don't have E.  

If it's not E, they may say it's conversion disorder or NES (non epileptic seizure).  From what I read these are from stress and are psychological and can be dealt with thru counseling.

Sorry, I can't tell you more.

With me it hasn't been easy either, so I was referred to an epileptologist.  They are neuros who only deal with E.  I think that might be something for you to consider doing.

( http://w3.ouhsc.edu/neuro/division/cope/tologist.htm  The link tells what an epileptologist is.)

[Philip33]

Make sure you tell the neurologist that you are taking the drug you mentioned.  I had the same cold feet problem after they gave me Dilantin; I was  constantly rinsing my feet in hot water in the bathtub; but, the saddest part was after being released from the hospital when I broke out in a fever and a bad rash. You might be allergic to meds too.

Its been 6 months next week since my last seizure; these couple of days I've been feeling like I might have another one; so I rest alot.  They called it "Adult Onset Seizure" for me.  Its no comfort when the docs can't tell me what caused it

My biggest fear is closing a business down because they have to stop everything and call 911 for me.  

Well, I'm sorry for the long post.

I wish you all luck.

[jan]

Hi,  

Do everything you can to possibly prevent a seizure, like resting and sleeping, try to avoid stress, avoid any triggers you know,etc.

Do you go status everytime?  If not, why do they keep calling 911?  If you are just having a seizure tell them it isn't necessary and what they should do for you.

Do you see an epileptologist?  If not, maybe you should consider seeing one, too.

I hope you get past this feeling w/o having a seizure.

Keep checking that site too, it's a good one.  I know they are working feverishly to get it back up.

[jan]

Here is another forum for E.  I haven't been in this one, but it's probably a good one seeing it's on the EFA website.

https://www.efa.org/forums/index.cfm?NoCookies=Yes

[kvanlew]

I had epilepsy, well I dnt knw if you technically no longer have epilepsy once you are diagnosed but I had my first seizure when I was ten. A grand mahl that I belive lasted 15 to 20 minutes. Five or six grand mahls followed and migraines to this day. I was put on tegretol and remained on it for a little over 4 years. When I was 18 I had what looked like a seizure I was staring for almost an hour, occasional twitching. Two trips to ER later in a day, I was sent home and told to relax and go to my neurologist if they continued and they didn't. Now I am 25, 26 in a week and spent 3 days in the hospital last week for "seizures" that couldn't be explained. The first I passed out in my hallway while getting ready for work. After waking from 2 my boyfriend called 911 when the third became violent as he said. I continued in the ER and in hospital even when a dilantin bolus was given twice. I was told there was such a thing as " stress seizures", now what I'm learning is a pseudo seizure. I have been under stress, I lost my mother tragically last year, just started a new job I'm not happy with, and dealing with other issues as well. My family opened up to a resident in the icu and told him that I had been under stress and asked if that could be triggering the "episodes" as some of the drs called it. From there on it was like they looked at me differently, I almost felt as if they thght what I was going thru wasn't real. My neurologist came to see me the day I was released, I broke down in hysterics and told him that I had in fact been feeling depressed, anxious, and now petrified now knowing what was happening to me. All blood test were negative as well as mri and ct scan. An eeg was to be done outpatient but I was told that they were sure it would be negative I'm not sure why. So I was sent home on dilantin( which still makes me dizzy, spacey, and not right) zoloft and xanax. I am scared of going anywhere, I am feeling anxiety all day long, hit with headaches four or five times a day, and a few days didn't get out of bed.  Everyone is telling me get up get out your ok. I don't feel that way and I am scared. Does anyone knw if its possible for epileptics to have these pseudo seizures? Why am I still having them on dilantin? If my EEG is normal am I crazy?? I need answers, please.