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Neurology (Expert Forum)
Seizures vs NES
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Seizures vs NES
by IMPO2004, Jul 12, 2006 12:00AM
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.
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.
Doctor's Answer
by CCF-Neuro-M.D.-SH, Jul 13, 2006 12:00AM
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.
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
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...
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.)
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.
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.
https://www.efa.org/forums/index.cfm?NoCookies=Yes