Im curious also-why do the docs think that psychogenic seizures most often are gran mal and occur with an audience?I personally keep all my wackiness away from my family and other than this forum,my epi doc and my psych doc I dont think I need to involve anyone else in this craziness.Yes,they tell me things that they see,but the details of what they dont are my own
'Psychogenic Seizures'
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elizzza811
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I'm more convinced than ever that my seizures are true seizures, and not non-epileptic or 'psychogenic' in nature...(see bold)...my eyes remain open...
http://www.epilepsyfoundation.org/epilepsyusa/newsbrief200606.cfm
Studies Offer Clues to Non-Epileptic Seizures
June 13, 2006
The results of three news studies published in the June edition of the journal Neurology reveal data about psychologically based seizures that may help clinicians to better treat and diagnose patients.
The first study showed that nearly 30 percent of individuals diagnosed with epilepsy actually have "psychogenic" seizures that are a result not of abnormal electrical activity in the brain but are rather of psychological origin. One differentiating characteristic is that, where people experiencing psychogenic seizures almost always close their eyes, those with epileptic seizures do not. People who do not have epilepsy tend not to respond to medications.
Researchers found that seniors (55 and over) tended to have psychogenic seizures as a result of health-related traumatic experiences related to aging, whereas younger people with psychogenic seizures were more likely to have experienced sexual abuse. And the third study also examined how different age groups and seizures. Observing individuals treated in emergency rooms for continuous seizures, known as "status epilepticus," that were unresponsive to medications. The study found that younger patients tended to have lower blood levels of creatine kinase, a muscle enzyme that normally rises after seizures.
The results of these studies may help physicians and people with seizures to better determine whether the seizures are psychogenic or epilepsy-related, and subsequently guide treatment decisions.
http://www.epilepsyfoundation.org/epilepsyusa/newsbrief200606.cfm
Studies Offer Clues to Non-Epileptic Seizures
June 13, 2006
The results of three news studies published in the June edition of the journal Neurology reveal data about psychologically based seizures that may help clinicians to better treat and diagnose patients.
The first study showed that nearly 30 percent of individuals diagnosed with epilepsy actually have "psychogenic" seizures that are a result not of abnormal electrical activity in the brain but are rather of psychological origin. One differentiating characteristic is that, where people experiencing psychogenic seizures almost always close their eyes, those with epileptic seizures do not. People who do not have epilepsy tend not to respond to medications.
Researchers found that seniors (55 and over) tended to have psychogenic seizures as a result of health-related traumatic experiences related to aging, whereas younger people with psychogenic seizures were more likely to have experienced sexual abuse. And the third study also examined how different age groups and seizures. Observing individuals treated in emergency rooms for continuous seizures, known as "status epilepticus," that were unresponsive to medications. The study found that younger patients tended to have lower blood levels of creatine kinase, a muscle enzyme that normally rises after seizures.
The results of these studies may help physicians and people with seizures to better determine whether the seizures are psychogenic or epilepsy-related, and subsequently guide treatment decisions.
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About 15 years ago, after my failed lobectomy, my epileptologist, asked me if there was any kind of abuse (sexual, physical, etc) in my childhood. There was no sexual, but plenty of verbal, psychological abuse. So in your case, Mel, I would think that your history could bring on epilepsy. IMO, the "experts" are still searching and discovering neurosciences every day. They use the word psychogenic because they really haven't found an answer yet, so as a doctor, they feel they need to come up with something.
Another interesting article about the definition of epileptic seizures:
http://onlinelibrary.wiley.com/doi/10.1111/j.0013-9580.2005.66104.x/full#ss2
Epileptic Seizures and Epilepsy: Definitions Proposed by the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE)
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People have said that my eyes roll up to the top of my head during a T/C seizure, so don't know about the eye thing. But this sentence irritates me:
Excuse me??!! My EEG's definitely did show abnormal electrical activity in the brain, but yet, why the hell did my brain NOT respond to the 11 medications, the lobectomy and now the VNS? Even the so called experts out there don't have an answer!!I cant believe all these flipping statistics!Although I did not have one of my true seizures during my veeg,I pushed the button during an odd event which showed epileptiforms on the eeg and YES-my eyes were closed!Because I was scared!Everything faded far away and my arms grew very long.When you are used to no memory of something and this happens and Im overemotional anyway--well,you get the picture.I also take offense to that phrase that no meds work.Havent I read continuously that meds often times DONT work?And why they say psychogenic are usually granmal and can be induced through deception during a veeg and are usually in presence of audience?My opinion and Im no doc but I believe that the misfiring of neurons may lead to other events that dont get proper recognition in the haste to jump on the psychogenic bandwagon
elizzza811
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I didn't mean to upset anybody here, and I'm not saying anybody's seizures here aren't real...I'm just learning myself, and that was one article I found. It peaked my interest because my eyes do remain open during my events.
I know my eyes rolled up and to the right in the ambulance during my last seizure. If I were having a tonic/clonic though, the paramedics would have noticed that...right? Then again, with this last seizure I kept having one right after another and I sort of blacked out?
Also, I remember reading somewhere that temporal lobe epilepsy (at least) doesn't always respond to meds.
I know my eyes rolled up and to the right in the ambulance during my last seizure. If I were having a tonic/clonic though, the paramedics would have noticed that...right? Then again, with this last seizure I kept having one right after another and I sort of blacked out?
Also, I remember reading somewhere that temporal lobe epilepsy (at least) doesn't always respond to meds.
PNES or BS????
How disheartening..my husband called from the hospital and said the neurologist specialist who has been so nice has suddenly turned into a very rude jerk a*s and was out right mean to him - and said that he has psychogenic non-epileptic seizures. He discontinued all meds and told him to see a psych.
I don't understand! This same doc said he had Myocronic seizures in his sleep (I have witnessed this for several years and didn't know they were a form of seizures). He also told us that he may have had psychogenic non-epileptic seizures due to stress, but that with psychogenic non-epileptic seizures people don't lose consciousness and soil themselves, or have Todd's paralysis. He had two seizures on vEEG, in front of nurses who saw him soil himself. Now he says he must have incontentence or bad dreams! Really????
Can someone advise if this doctor is rational or not? If so, that's fine...I'm just curious what you all think - please???
How disheartening..my husband called from the hospital and said the neurologist specialist who has been so nice has suddenly turned into a very rude jerk a*s and was out right mean to him - and said that he has psychogenic non-epileptic seizures. He discontinued all meds and told him to see a psych.
I don't understand! This same doc said he had Myocronic seizures in his sleep (I have witnessed this for several years and didn't know they were a form of seizures). He also told us that he may have had psychogenic non-epileptic seizures due to stress, but that with psychogenic non-epileptic seizures people don't lose consciousness and soil themselves, or have Todd's paralysis. He had two seizures on vEEG, in front of nurses who saw him soil himself. Now he says he must have incontentence or bad dreams! Really????
Can someone advise if this doctor is rational or not? If so, that's fine...I'm just curious what you all think - please???
elizzza811
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I agree...find another neurologist. Did he have a 72-hour EEG (or longer)?
My seizures didn't show up on a regular 45-minute EEG or a 24-hour EEG. Actually I'm not sure an actual seizure occurred on my 72-hour EEG, but enough abnormalities appeared to convince my neuro to diagnose me with epilepsy.
Also, I did lose bladder control during one of my seizures (before I knew they were seizures). In my opinion, if he soiled himself, it's a true seizure.
My seizures didn't show up on a regular 45-minute EEG or a 24-hour EEG. Actually I'm not sure an actual seizure occurred on my 72-hour EEG, but enough abnormalities appeared to convince my neuro to diagnose me with epilepsy.
Also, I did lose bladder control during one of my seizures (before I knew they were seizures). In my opinion, if he soiled himself, it's a true seizure.
PNES or BS
Thanks, everyone! Definately seeking another opinion for hubby. The rudeness from the doctor and the lack of help definately has him feeling very depressed, stressed, and helpless.
I can't find much info on PNES, but what little I have found would suggest that loss of consciousness and bowels/wetting is very rare for PNES. My thought is maybe he is having PNES but also has epilepsy.
elizzza811 - His first EEG was only for a few minutes. They used lights and breathing techniques to trigger a seizure. They said he had a small one...then later said everything was normal. This last time, they kept him overnight and his vEEG was about 36 hours.
Thanks for the support and advice everyone!
Thanks, everyone! Definately seeking another opinion for hubby. The rudeness from the doctor and the lack of help definately has him feeling very depressed, stressed, and helpless.
I can't find much info on PNES, but what little I have found would suggest that loss of consciousness and bowels/wetting is very rare for PNES. My thought is maybe he is having PNES but also has epilepsy.
elizzza811 - His first EEG was only for a few minutes. They used lights and breathing techniques to trigger a seizure. They said he had a small one...then later said everything was normal. This last time, they kept him overnight and his vEEG was about 36 hours.
Thanks for the support and advice everyone!
I don't either...
I don't believe in Psychogenic seizures either but only because I know our technology is making breakthroughs in what we see now in neuroscience.
I went for a year and a half having seizures 2-3 times a day lasting 20 min up to 8 hours and NO doctor could find anything wrong with me. I went to a Psychologist, Acupuncturists, homeopath, MD, had a CT, MRI, EEG, blood/hormone work up, dietitian, the guy that does blood sugar issues, I forget the title. The Psychologist said nothing was wrong with me there. The acupuncturist said it was because my body was ready for children. The homeopath wanted to do vitamin infusions even though my mineral levels are ok, they suggested I was pre-menopausal and that I had hypoglycemia. That my seizures were me going into insulin shock like diabetics experience. Someone even suggested I was posesed by demons and only GOD could help me. They all concluded basically there was NOTHING wrong mentally or physically.
Then I found biofeedback and went to a neurologist who has a DEEG. An EEG measures around 28 places in the brain while a DEEG measures 128 places. There are only 10 machines in the world. He saw my abnormal electrical activity in the first 3 minutes of our hour-long test. There is also now a connection between seizures and Bi-Polar disorder. The two sciences are starting to believe the mental illness is actually a low-level seizure disorder due to the fact that the treatment for Bi-Polar is and has been anti-seizure drugs.
I'm excited to see our world develop. We know very little and are progressing. Psychogenic seizures is the name they use when the seizure doesn't read on an EEG, just like mine, they assume it's subconscious trauma. Much of the psychology of this idea comes from Freud who while he was working with people with epilepsy also said it was subconscious trauma. This has shaped our mental health due to his daughters efforts to promote his ideas for corporate profit. In the end, the psycho babble was just babble, these people classed as "hysteria" patients then, mostly had epilepsy, which as we now know is physical... Interesting right?
I don't believe in Psychogenic seizures either but only because I know our technology is making breakthroughs in what we see now in neuroscience.
I went for a year and a half having seizures 2-3 times a day lasting 20 min up to 8 hours and NO doctor could find anything wrong with me. I went to a Psychologist, Acupuncturists, homeopath, MD, had a CT, MRI, EEG, blood/hormone work up, dietitian, the guy that does blood sugar issues, I forget the title. The Psychologist said nothing was wrong with me there. The acupuncturist said it was because my body was ready for children. The homeopath wanted to do vitamin infusions even though my mineral levels are ok, they suggested I was pre-menopausal and that I had hypoglycemia. That my seizures were me going into insulin shock like diabetics experience. Someone even suggested I was posesed by demons and only GOD could help me. They all concluded basically there was NOTHING wrong mentally or physically.
Then I found biofeedback and went to a neurologist who has a DEEG. An EEG measures around 28 places in the brain while a DEEG measures 128 places. There are only 10 machines in the world. He saw my abnormal electrical activity in the first 3 minutes of our hour-long test. There is also now a connection between seizures and Bi-Polar disorder. The two sciences are starting to believe the mental illness is actually a low-level seizure disorder due to the fact that the treatment for Bi-Polar is and has been anti-seizure drugs.
I'm excited to see our world develop. We know very little and are progressing. Psychogenic seizures is the name they use when the seizure doesn't read on an EEG, just like mine, they assume it's subconscious trauma. Much of the psychology of this idea comes from Freud who while he was working with people with epilepsy also said it was subconscious trauma. This has shaped our mental health due to his daughters efforts to promote his ideas for corporate profit. In the end, the psycho babble was just babble, these people classed as "hysteria" patients then, mostly had epilepsy, which as we now know is physical... Interesting right?
Autumn Breeze
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This is a great thread
We finally got video of one of my seizures. I'll be interested to see what the neurologist and my GP thinks. I've had two 'normal' EEG's and since I can only afford to see the GP right now, he consults with the neuro. But, the neuro thinks that my seizures are PNES, and I wanted to punch her when she insinuated that I do it for kicks.
We finally got video of one of my seizures. I'll be interested to see what the neurologist and my GP thinks. I've had two 'normal' EEG's and since I can only afford to see the GP right now, he consults with the neuro. But, the neuro thinks that my seizures are PNES, and I wanted to punch her when she insinuated that I do it for kicks.
Biofeedback
Yes, I've been doing biofeedback for about six months usually 2x a week. We saw some improvement right away and my LCSW who administers it sent me to the neurologist I have now who started me on Depakote. After many dosage adjustments and adding other meds to counteract side effects, my sezuires are at 2 a month usually lasting 20-45 minutes. I take 500mg 2x daily, doc says any more would induce side effects and we'd be going the wrong way. I'm taking Adderral to counteract the side effects and I take anti-anxiety drugs when one comes on to lesson the pain I get. It does help somewhat, but when I have them I'm floored at how excruciating it really is. I'm usually conscious until the pain escalates so far then it's in and out of blackout. I haven't really 'blacked-out' since they maxed me out on the Depakote thankfully. It's like I totally forget how horrible it is by the next day. It takes hours to come out of and I notice I don't feel 'normal' at all for over a week after. Can't remember what life was like before.
Anyways, to answer your question, yes, a HUGE improvement! I plan to continue therapy for another 1-1.5 years and hopefully come off the medications totally.
Yes, I've been doing biofeedback for about six months usually 2x a week. We saw some improvement right away and my LCSW who administers it sent me to the neurologist I have now who started me on Depakote. After many dosage adjustments and adding other meds to counteract side effects, my sezuires are at 2 a month usually lasting 20-45 minutes. I take 500mg 2x daily, doc says any more would induce side effects and we'd be going the wrong way. I'm taking Adderral to counteract the side effects and I take anti-anxiety drugs when one comes on to lesson the pain I get. It does help somewhat, but when I have them I'm floored at how excruciating it really is. I'm usually conscious until the pain escalates so far then it's in and out of blackout. I haven't really 'blacked-out' since they maxed me out on the Depakote thankfully. It's like I totally forget how horrible it is by the next day. It takes hours to come out of and I notice I don't feel 'normal' at all for over a week after. Can't remember what life was like before.
Anyways, to answer your question, yes, a HUGE improvement! I plan to continue therapy for another 1-1.5 years and hopefully come off the medications totally.
Something that continues to frustrate me is when people say, what caused it? Doctors specifically. My neurologists says that trauma of any kind can cause it at the time or much later, a car wreck, child abuse, ect. That it could be a predisposed thing or a genetic disorder. The onset could be out of the blue or during a time of stress. And he says, there is absolutely no way to know, at least for me. I quit asking why.
Autumn Breeze
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They fail to take into account that my biological father has proven epilepsy. His EEG's show 'the wave'. They're all caught up with mine reading 'normal' that they just "forget" that my daddy's an epileptic too. Yeah "Why are you so stressed out" is what someone actually asked at one appointment. "OH, I don't know, because people are trying to blame me for my seizures, as if I have control over it? Perhaps that has something to do with it."
Omg, I soooo relate to your frustration! Keep going, don't let them bother you. Just throw them in the bucket of idiots in your mind or whatever you have to do. I can not tell you how much independent research I had to do and how many doctors said stupid things to me, one suggested I sue the hospital who said my seizure was actually a psychotic break and drugged me so much I walked out in a blackout from their drugs! As if I have the energy to SUE a hospital. I would love to sue him, but the state protects him, he's a government employee regardless of what he suggests. I still find that disturbing. He was a psychologist who couldn't get a history on me since I was so sick and even told me no one had ever loved me in my entire life. It took a year to get the distress of this man in my face trying to convince me I'd be okay if I could just get over that no one cared about me... Just writing this here makes it seem surreal, a bad dream. Of course he never did know my history. I was seizing daily when I was seeing him and he couldn't understand what I was saying. No one could. Keep going, don't let them get you down. Here is another story for you: To get financial help I went to the state who sent me to a psychiatrist who laughed at me saying 'when you go into your spells, we don't know where you go, but the people there know you.' I was livid. They were still saying I was A-Okay. Now I'm more tolerant, I understand people are doing their best, some better than others, and we don't fit into nice little boxes that textbooks teach. I can laugh at some of this now. I've gained 20k in medical bills on my credit, and the state has paid about the same. It could have been so much easier, but it took time to find the right people. Hang in there!
Oh, and one more thing. I do not have epilepsy. I have abnormal electrical discharge throughout both hemispheres in the brain every 3 seconds that last .25-.5 seconds. This causes what looks like an epileptic seizure. It is still technically a seizure so I don't care what wave form it comes in. And, I just don't relate to ALL the epilepsy stuff... just to make it more confusing.