Community Forum

Ecstatic Seizures

 Hi

Has anyone experienced "ecstatic" seizures?  I've had a series of them recently, and they are amazing: totally outside the range of normal experience and by far the best experiences of my life!  I'm not religious or "spiritual" but recognise that they could be construed by others as deep and meaningful life changing events...evidence of the "divine" as opposed to neurological events. 

I've been told by my neurologist they are very rare and I've not been able to find out much about them/share experiences. 

Victoria

Hello all,  I'm adding this comment just over a month after the original post having realised that the thread is now incredibly confusing and there are some misunderstandings following what seem to be random postings.   You may want to follow the date order of the posts before making comments or coming to conclusions.   

Regards,

Victoria

Comments

Hi victoria.w,

Quite a few of my happy "ecstatic" partial complex seizures have returned, after about 25 years of being
very infrequent.

I had a lot of ecstatic seizures in my childhood and into my late twenties. Unpleasant seizures greatly
outnumbered them, but ecstatic ones were enough to be considered kissed by the gods, and the deja vu really
helped in my university classes. The strong emotions of the seizures seemed to be at battle with one
another as I was a helpless bystander, who slowly learned to ignore them whenever something mundane needed
to be done, like going to school or homework.

The works of Proust and Dostoevsky come the closest in exemplifying the deja vu, and strongly implying the
sensation of being kissed by the gods as an ecstatic aura, at times with disastrous consequences, but often
with brief instances of simple ignorant divinity.

The biggest problem I experienced from strong emotive seizures were that they succeeded each other in
sequences that were often inappropriate and unknowable to other individuals, and unforeseeable to me,
destroying any compatible intuition, and that while polite society tends to conceal strong emotions, my
ignoring my seizure's strong emotions in social interactions inadvertantly trained me to a very flat,
indifferent, external affect with strangers, with impish exceptions. Briefly feeling divine in very
threatening situations is also very dangerous!

 Thanks for the response.  I've actually done a bit of research to find out more, and strangely, I mirrored Dostoevsky's comment when writing about my first ecstatic seizure that occurred over 20 years ago: I wrote at the time it was worth 10 years of normal existence!  I always hankered after the experience but never thought I'd get a repeat: all my complex partial seizures before and after (except the last month or so) have been of the other kind "nightmarish".  I also get your "battle."  My first ecstatic seizure came hot on the heels of several really bad CP seizures - I couldn't seem to come out of them and then had the best experience of my life (until very recently).  I'll call it my "God" moment but won't go into details other than to say I fully understand why people become convinced that God exists.  Fast forward to the present: - it's still a battle as these unexpected ecstatic seizures come packaged with intense suicidal thoughts so I'm in a weird place, experiencing some of the best moments of my life and  the most depressing.  I’m glad to say the suicidal thoughts are receding now that I've reduced the dose of my anticonvulsants.  However, I appreciate I'm lucky in lots of ways.  For some, it's all bad, for me, I get to a place that most people can only "dream about" and perhaps it is "almost to die for".   My only problem immediately following these mind blowing experiences is that I have these weird evangelical urges to take to the streets like a religious maniac but there’s no conversion in sight!  I’m firmly in the neurological camp but respect the views of people who are religious.         

Victoria

 

 I've been reading the posts on the topic that you mentioned ,estatic seizures. I'm 35 years old and have temporal lobe epilepsy. My seizures are somewhat controlled . . .but not that great. I have had right temporal resection that mostly was a success for my tonic clonic szs. My left temporal still is damaged. This all came from Encephtylitis (viral) back in 02. I've experienced just about every type of seizure that there was...throughout all these years. But just recently back in February I had a status attack, that was smple part.-complex partial & tonic clonic. I was found face first in the carpet , blood all over my forehead then was picked up by an ambulance brought to a hospital , the attack lasted over 5 hours. The doctors gave me 11 mgs of ativan, but was still having small episodes for 2 days straight while under monitoring. It took me 5 days to finally realize where I was at and then they released me to go home. I usually remember alot about they way these seizures make me feal emotionally, physically and it drives me crazy! I try to explain  the way that i feel to my family,friends and DOCTOR . My memory is not that well from all the meds and operations and it seems like some of the only things I remember the best are the bad things that happen to me like seizures ,arguments and meaningless things. But as you ,Victoria and the other person describe these experiences hit the nail right on the head exactly how they make me feel. . .before ,during and after these seizures happen. Just last week I had a gastronomical stomach flu (24 hour virus) ,I could'nt stop throwing up and there was know way i was going to hold down next dose of meds ,so I went to the hospital emergency room. While I was sitting in the waiting room I kept going into these hallucinations,they felt like I was being kissed by the Gods,as you explain it. I felt overwelming sensations that felt like god was letting me know that he was right there next to me while I was seizing. He was telling me to not to be so mad all the time ,and that he was keeping an eye on me. I'm Roman Catholic ,but I don't pratice my faith alot . . .go to church. I take alot of meds 2000 mgs Keppra 2x day- 900 mgs Trileptal 2x day - .5 mgs klonopin @ bedtime and 20 mgs Lexapro(anti depressant). 

These medications got me a wreck sometimes ,I break down into tears sometimes fall on the ground and cant stop crying. I'm very easily aggitated ,say cruel things and even throw things in outrage , just all around depressed an emotional wreck. I noticed that one of you are from the UK and the other is from California. I smoke marijuana in the late afternoon ,later in the evening and just before bed. 1 to 1.5 grams daily. Its not legal where I live in Ohio,but it helps me cope with they way these meds got me depressed. altogether it helps me keep a smile on my face and I don't think I abuse it . My family does though ,all of the sudden that is? They are trying to blame my recent seizures and my attitude on my "HABIT".They always were aware of my smoking MJ and never gave me a problem about it before because I told them it helps me deal with these meds and I feel alot better ,emotionally and I just know I won't have a seizure when I'm smoking, I feel so relaxed and  mj has been proven to have anti-convulsant properties. But anyways thanks for the info you provided me with describing these seizures that you experience, that helps me alot better to know that I'm not alone when it comes to this complex life that we live . But if you want to chime in and leave your opinion my issue with my family and the marijuana use. My doctor told me when the state of Ohio passes the law for medical marijuana like 15 other states in the U.S. already have for people that have seizures due to epilepsy. Then he would give me a perscription. Because if marijuana was a seizure trigger he said I would be having alot more seizures than I do already. . . alot more!  

Hi Johnny,  I'm really sorry you're having a bad time and you are right - it is good to find out that you're not alone with these "crazy" experiences.  I'm probably not the best person to respond to your question but my thoughts for what they're worth....

It's difficult living with a condition that brings into sharp focus the tenuous nature of our existence, and one that can threaten our identity/sense of self.  Your family are almost certainly worried about you and are seeking easy explanations/solutions.  My understanding is that all drugs, pharmaceutical or not, have potential side-effects and finding what works or makes life bearable for the individual can be difficult.  If your doctor is Ok with it and says he would prescribe the drug if it were legal in your state, I assume his acceptance is based on scientific evidence and professional experience.  Finally, if it's available, seek help to address the anger, agitation, depression.  It's hard to admit we're vulnerable and acknowledge the anguish, fear and confusion that come with the condition.  (It's taken me years!)   On the other hand, if you think you're experiencing  side-effects from your medication then talk to your doctor again as he may be able to change the regime to reduce your side-effects.  

 

I've never joined one of these talk-back things before, but I feel compelled to join this one. I have had seizures and migraines since I was a child, but have never been diagnosed. I know from my own research that I have temporal lobe epilepsy and when I get really lucky, I get secondary limbic system involvement resulting in full TC seizures with a post ictal phase that lasts a week. This is truly the agony and the ecstasy! Have a seizure and find religion. Who would a' thunk it.

I have truly found G-d. I convinced a room full of psychiatrists that G-d was in the room and that I was talking to him and that I was neither psychotic nor grandiose. I was dying and had a near death experience that is the best thing I has ever happened to me in my life.

I speak to Him often and he came to me and touched me and gave me life. Yes I was seizing.

The down side of this is that I've had so much temporal lobe damage that I had to teach myself how to write again. I can't compensate very well for my dyslexia anymore. The list goes on. I also get the nightmarish seizures. I told a Dr. That the aura was like migraine, only more disgusting.

I take 1800mg of Trileptal a day (I am a 100lb female) and it still isn't enough. I have out of control asthma and my choice is use my inhaler now and seize later or don't breathe now and forget about later.

Back to the ecstasy. The human brain is hard wired for religion. Call it spirituality if you prefer. I refuse to believe that my experiences are merely a result of morphological changes in my brain due to the seizures or signals run amok. Every time a neuron fires there is a change in our brains. These signals can result in changes in gene expression that permanently alter our brains. what makes us sentient human beings is our minds, not our brains, and the relationship between the two is not understood. Every human experience can be said to be an artifact of our brains. Is that really what we want to reduce ourselves to?

May we all find peace of mind in our hyperactive brains

Zealot.

 Thanks Victoria ,for answering back and everyone that was apart of this discussion so far. I know I kind of got off the topic a little with my family issues(medical marijuana). That is a whole other topic that has been discussed before by alot of people already here in the forum. The best way I describe each of us is that we are like fingerprints or snowflakes, similar in some ways ,but no case is the same as the other. Especially when it comes to the seizures,some much of what you experience with each one is alot different than last (that I can remember anyways). 

 Zealot ,another person who I can use the term loosley , has been BLESSED ! I know that is to strongly put. While I have experienced these types of seizures tossed in the mix with other episodes too, it just seems that having these ecstatic seizures have been a mind blower ! Strangely as it may sound , I kind of enjoyed them in a sense ? Well mostly because I was having a real rough time with my meds ,and I don't want that to sound like an excuse,because they can give some depressing side effects, I find it odd that we both have the same dose of Trileptal 1800 mgs /day. I also take 4000 mgs of Keppra , just so you know. You also weigh only 100 lbs. , but I worry about you having those nightmarish seizures. I'm a patient at the the Cleveland Clinic ,which has an excellent team of doctors and nurses ,one of the best hospitals in the world. I remember having these nightmare seizures and my neurologist did not like me having those seizures. They were happening during my sleep around 5-7:00am and he increased my trileptal and introduced me to Klonopin. The Klonopin is kind of like ativant with a sleeping agent in it, its a .5mg pill that I take at bedtime. But don't be frusrated about the meds if they want to adjust the doses. Its for the better probably that you dont have the seizures,if I'm correct. 

  I find myself replying more to the forum lately, than ever ,which is not that much. This sight altogether has benefitted me in so many ways , just by reading current events , blogs, stories and gathering info for my having epilepsy. Meaning more than anything to me right now is finding people to talk to and understand where you coming from. My Phsyciatrist and my Neurologist want some of my family to come my next appt. and teach and talk about my disorder. Discuss everything from what its like to try bring them down to my level when it comes to meds and there side effects , seizures and there side effects and just alot of the stressful life and times that we have. I wish everyone the best and pray that complicated things can be avoided and may we stay healthy. 

Johnny   

Hello all, I hope I haven’t offended anyone with my disbelief: the “God” issue is such an emotive one and I really don’t want to cause offence but it is an interesting debate.For me, existing in the here and now is enough.  I find meaning in other people, not a “God” and I don’t think that reduces me as a person in any way.   Perhaps it’s unfortunate, but I can no more believe in God than I can believe in fairies or angels.  It’s not as if I haven’t given it considerable thought: I was brought up a Catholic (like you Johnny) and I spent several years from about the age of 8 grappling with this issue.  My position hasn’t changed.   I recognise the symbolism of my seizures, and yes, I too, in my first ecstatic seizure felt the presence of an omnipotent force, experienced the divine light, waves of energy, felt totally at peace, at one with the universe etc….and I may well have come to the conclusion that I’d undergone some “divine transfiguration” or been touched by God, but I did not.   My more recent ecstatic seizures, they too, are truly amazing.  They open up a “heavenly world” – a parallel universe where the beauty and intensity of the moment is indescribable and the concept of self and time become meaningless.  (There’s more I can say but I’ll keep it brief rather than struggle and fail to capture the experience.) As privileged as I am to have these experiences they have not led me to God. But as I stated in a previous post, I respect the opinions and beliefs of others (maybe I’m even a bit envious).  Ultimately, I don’t think the issue is that important as long as we all try to do right by people and treat each other with compassion, kindness and respect.  I think what we do, is far more important that what we believe.   Victoria….

 

Victoria,

I'm with you. How we live our lives is much more important than what we believe.

I think we've all had similar experiences, but how we interpret them is different. I have studied Bhuddism and practice Tai Chi, various Yoga technique and Bhuddist meditations and you are right: the most important thing is living in the here and now.

What all of these Eastern philophies share is a belief in a life force energy that infuses everyrhing in this universe. You don't have to call it G-d. We have been priveleged enough to see it although the price we pay is heavy.

It's better not to seizures, but my life would not be the same without them. I would miss my connection to the universe. I would miss my native ability to channel Chi or Prana Kundalini, whatever you want to call it.

We have a window into a world that mystics and Yogis and shamans devote tbeir lives to attain.

There's no such thing as a free lunch in this universe; it would violate the laws of physics. I cannot imagine having my life any other way.

Zealot

Hi Zealot,

Yours is a good post for me to read today; sometimes I feel totally screwed up and I've had a bad few days.  I can wax lyrical and use words to try and retain control or give the illusion of control, but I have days of immense confusion and sadness so while I agree with you up to a point, I can't help thinking that normality may be a better type of existence.  Other times, I'm totally with you!  I think "conflicted" is the word I'm looking for...

Victoria     

Victoria,

Glad I was able to help. Normal is easy, not better.

The meds are difficult to tolerate. I have advanced osteoporosis from the Trileptal, and a constant battle with hyponatremia. If you are not already getting it, you should ask your doctor for vitamin D supplentation. You should also ask for folic acid supplentation because most of these meds cause a deficit, which can result in mid-line birth defects as well as depression.

The permanent brain damage part is pretty ugly and surgery, even uglier, but I wouldn't change who I am, not even for a minute.

As much as I hate seizures and the way people shrink away from me as I were a leper if I have to tell them, I would miss the ecstatic seizures terribly.

I also had a very interesting experience. I was with two friends. One of them was feeling very bad about life and said she was damned because she had allowed herself to be possessed by Satan. My other friend quoted from Romans and told her all she had to was say "I repent." She did. Either my Bible quoting friend and I both had seizures at the same time with the same vision (he has no seizures) or what we both experienced was real. As she was saying the words, we shot each other a look. We had both felt two presences in the room and the evil one was sent back from whence he came. We were not expecting this. I am a Jew and we don't witness. This time I did.

Please don't get down on yourself. You are what you are. Just be the best you can be. Accept each moment for what it is. The past is gone and the future will never get here. As you already said, what matters is the here and now. Please try to get the most out of each moment.

I know that this easier said than done, especially for those of us with temporal lobe issues. If you fall down, just pick yourself up, dust yourself off, and keep on going.

My life is shambles right now, but I still keep on going. I just try to keep from making the same mistakes over and over again.

Zealot

Hi Zealot,

It's taken me a while to respond to your latest post.  Thanks for the kind words.  I am feeling better.  I must admit reading about your friend who thought she was damned/possessed saddened me and resurrected my negativity about religion; it was this type of reductionism -  good and evil - God and Satan - that made it impossible for me to take religion seriously.  Also I worry about the cut off point: in some parts of the world, epilepsy and mental illness are still associated with "demonic" possession and "exorcisms" carried out on bewildered children and adults.  Surely we shouldn't be buying into these beliefs/terminology? 

The problem for me, may be in the way the experience is expressed and possibly my Catholic childhood.   Early exposure to Catholicism has left me with negative views...

But as to the experience you described - I do believe  that there is potential to share extraordinary experiences...  

Johnny - just wondering how your "family" meeting went.  Has it helped?

and the person who kindly responded to my first query - just curious but are the posts a bit too far out for you?  Did your ecstatic seizures have religious or spiritual resonance?  

Regards to all

Victoria 

 

  

   Hi Victoria how have you been doing ...good I hope ! Well I've been hanging in there as good as I know how to anyway. It's good to hear from you ,you are one of the few people that I communicate with here. I just had a follow up visit with my neurologist yesterday, things went mostly well. Except I got to show my doctor's head nurse during a discussion that me ,my parents and her were having about issues of concern, I had emotional breakdown. We were sitting there talking about my issue with me being maxed out on meds and she was asking me ...what would you like to do if you could. I said maybe get a surgery and have that Neuropace Stimulator installed over my left temporalobe, so I could try to reduce these meds atleast in half. I told her that I'm tired of feeling miserable and being this angry all of the time. So we sat there ...well they sat there as I paced back and forth crying. I told them that I am willing to just reduce these meds since I've lost over 40lbs. in the past year,so I got them to lower my Trileptal 300mgs less on my bedtime dose. That was an adjustment that I just been wanting to do myself ,but it just not right to do that without telling someone, especially at the Cleveland Clinic.

  I still got another appt. Friday with my psychiatrist and some family members and I believe that's the meeting you were asking about. I just hope I can keep myself together and not have any breakdowns during this appt. Which is going to be tough with family that I've not been getting along with being there. If there is too much silence or tension in the air, it will be very tough! If it was'nt for you and being able talk about this issue with my family ,I would be alot more tense. I have neighbors that I can talk to and I told them how you have helped me by showing your concern with me. It helps a good amount ,just so you know that. After my appt. Friday , I'll let you know as soon as possible.

  Take care and talk to you soon

  Johnny

Hi Johnny - I can so identify with your "emotional breakdown".  Something similar happened to me about 3 months ago when I met with my neurologist and his two colleagues.  I normally keep my emotions under tight control but I was more honest than usual and I revealed stuff I hadn't talked about before.  Then I started crying and I was so embarrassed, mortified, and angry with myself for losing it!  I'm waiting for an appointment with a neuropsychiatrist who specialises in the psychiatric side-effects of anti-convulsants (following the suicidal thoughts) and I am really nervous about this: I've never seen one before.  Perhaps they'll think I'm crazy!  I went to my GP last week and told him I thought I was crazy, but he assured me I wasn't, and we ended up laughing - I cracked the jokes!  I felt a whole lot better.

Anti-convulsants, anti-depressants, drugs for anxiety, drugs for panic, drugs for pain, drugs that stop you feeling anything at all....you name it they can treat it, but I get the impression the more medication you take, the worse life gets (particularly the drugs that act on the brain)!  I've been lucky and managed to have a one drug rule (if you don't count painkillers)  but my seizures are not that bad so I can get away with it.  Not everyone is so lucky.  Take what you think helps, but renegotiate if they're not working for you.  You do need quality of life as well as seizure control.

Your family....why don't you have a word with your psychiatrist before the meeting and share your concerns/set some guidelines?   He or she should be able to manage the situation on your behalf and if it gets too much, use the "exit" strategy.  Why hang around if they're pissing you off - take a walk for 5-10 mins to compose yourself and then make a decison whether to return?  You have enough to contend with, without taking on their emotional baggage.  Sometimes family and epilepsy don't make for a healthy mix and it's not your fault.   Your neighbours sound like good people.  I recommend comedy DVDs or similar for Friday evening.  Thinking of you.  

Victoria. 

Hi Tadzio - I did mean you and I'm slightly confused by your latest randomly positioned post but I'm glad you've rejoined us.  Victoria.

Hi Victoria, My web-browser jumps around alot here, then, this website's protocol is more branched than others. I read your reply yesterday, but didn't make my response before I lost net connection. Why the edit? Controversy often flares with censorship here, and I have even been told that I should stick to an 8th grade level, but my wordiness provides some insulation from (or to??) people who might be easily shocked or wish to remain willingly unknowning and are easily discouraged by a different tide of ideas. It's somewhat like referring to the novel about Humbert Humbert by using Vladimir Nabokov as the insulation. LOL. Sometimes this is still too much, like Dostoevsky calling one of his most epileptic characters' novel a title translated abruptly to "The Idiot." Myshkin's epileptic divinity of an iurodivyi, countered with his long lasting TLE's frequent, but often minor, Asperger's-like social ineptitude too often voicing the truth, repeatedly muddles society's members in Dostoevsky's notebooks in regard to the work.

The abuse/exploitation of epileptics during seizures often seems to be politically-incorrect for discussion, except for occassional instances involving professional response abuse. (The pre-ictal, post-ictal, and interictal periods add to this). I think simple theft has only been mentioned a few times, maybe only once. While, one of my divine minor seizures occurred while regaining consciousness bathed with morning's early sunshine, buck naked amongst the other discards in a garbage dumpster, after apparently being pillaged by some opportunist(s). Then, maybe it was an act of simple fright or spite. But for me, it was an ecstatic resonance with divine iurodivyi.

Tadzio

Hello all,

Johnny - I'm glad your meeting went OK; it appears you were in the driving seat to a certain extent, which is always good BUT....this drug abilify - did I read that right?  Are they taking the mickey or what?  Switch the f to a t and you have ability = natural capability.  Oh I don't know.  If you were OK on the drug cocktail they have you on already it would be one thing, but you're obviously not, so they give you a drug to "cure" or "dampen" the side effects of other drugs or that's my reading of the situation from what you've told me already.  I have no idea whether the mix they have you on is reasonable or not.  Do you trust any of them?  If so, ask him/her whether they would take the same cocktail or let their son or daughter do so and if they look you in the eye and tell you yes, then perhaps....

Don't get me wrong - anti-depressants were a life line to me at certain stages of my life and when I discovered Lamotrigine it was if a switch went on in my brain that routed me to what I assume to be "normality": life suddenly became a whole lot easier; lots of disturbing and disruptive symptoms went away and I was really happy...but 18 months on and I'm experiencing brain mayhem again albeit with life affirming ecstatic seizures.  I suppose there are no easy answers. 

The price of your medication...I've read some posts on this site about people not being able to afford tests and medication and I find this so weird.  I just can't get my head around your health care system - to use an American expression - "it sucks".  The NHS is not perfect but it is pretty damn good in comparison.

Tadzio, 

Where do I begin?  Editing - well I'm a harsh critic, and slightly paranoid.  It suddenly occurred to me after posting my original response, that I had totally ignored the confessional part of your post and I thought I may have missed the point.  Perhaps I should have offered sympathy?   I love your esoteric style but I'm short on time (full time job, young son, various ambitions, competing demands) and I'm a great believer in compromise.  Come on, I've done a quick internet scan of Popper, Russell and Skinner  (and left Popper - the Open Society and Its Enemies on my bookshelf) but I still don't really get "Radical Behavourism".  Explain to me in simple terms why it does it for you....as I'm not convinced.  I think I mentioned in my pre-edited comment I'm impatient.   Pretend I'm an iurodivyi and I'll meet you half-way.   And is there any way you can cut and paste your post downwards so "natural" order is restored and there's access for any other lonely ecstatics out there in cyberspace?  If they're looking for enlightenment or to make sense of their experience - they will be very confused.  Am I asking too much?  Oh finally, I agree with your cynicism towards psychiatrists - but I've reached a stage of my life where desperation has taken over and I'm well and truely floundering in shit, when I'm not merging with the cosmos and falling in love with seagulls, clouds and flowers!  Worse still, I sometimes find myself looking for God out there, and I cry way too much.  Perhaps it's a female thing but the emotional intensity of the last few months - when I've been experiencing almost daily ecstatic seizures - is burning me out!

Zealot - are you OK?

.....Victoria

 

Hi Victoria,

Now I feel like I'm in a Jane Austen short-story. LOL. With my new brain damage I have to use GPS to make a round-trip more than a block from home, so I know Anthony Burgess isn't the only one that not only missed the boat, but also took the wrong train back home. Still, did he realize that feeling incapacitatingly great is just as bad as feeling incapacitatingly bad, when trying to live a daily mundane life?

Embracing Reagan's "Darkling Plain English," (so don't blame me if you stick your tongue on a frozen flagpole), subjective sensations from partial seizures can be pleasant and/or unpleasant. Haphazardly over my first 25 years of life, I learned to ignore mine. This comes at the high price of having emotionally flat affect. It also stops the learning of new informal inter-personal skills that involve affect. Play acting to fill the flatness is difficult. Ignoring the subjective sensations doesn't stop anything else involving the seizure. If a seizure halts my speech also, my speech is still halted despite my ignoring the subjective sensations. Ignoring subjective sensations can be dangerous. If I ignore the smell of smoke, I also ignore a possible unseen fire. I guess if I developed my partial seizures recently, and if I wanted results, and I wanted them now, I would look for things like at:

http://www3.interscience.wiley.com/cgi-bin/fulltext/119430454/PDFSTART

From B.F. Skinner's book "Beyond Freedom and Dignity," I used behaviourism to exploit the subjective sensations as cues and reinforcement in learning. I also discovered to reverse the chance conditioning from the subjective sensations. This was an intellectual boon in developing lengthy schedules of reinforcement that make the subjective sensations a simple step to more appropriate and useful positive reinforcers in learning new things. Using your own conditioned verbal behavior to condition more of your verbal behavior results in phenomena usually regarded as just thinking, but using seizures as a stepping stone, made it a great accommodation for me with disruptive seizures. This took time to develop, but once I got it, I made it thru university magna cum laude without any AEDs. Of course, my having epilepsy since early childhood, might have made it a lot more easy for me to do, like learning a foreign language without an accent is a lot easier to do in childhood than in adulthood.

Another posting, with other similar subject postings, was backtracked here at:

http://www.epilepsy.com/discussion/985312

This path only works when you're not signed on here, otherwise it defaults to the home page of epilepsy.com frequently. The most recent replies to a forum defaults to the top of the replies here at epilepsy.com, against "natural" order, and replies to replies also, which narrow down each step, artificially (LOL).

Some claims have been made that aversive conditioning itself can work at stopping seizures, but I don't believe it. The highly critical movie/book "A Clockwork Orange" darkly parodied it as the "Ludovico Technique."

Tadzio

Hi Tadzio, I'm still not sure I understand - stimulus, response...as for the simple step to more appropriate and useful positive reinforcers what can be more positive than the greatest highs I'm going to experience in life and therein lies my dilemma?  I'm also aware I'm bullshitting.  I know the ecstatic seizures are not good for me; I know I should buy the book you mentioned and spend time inside a quiet and dimly lit room contemplating theories and absorbing knowledge and try to avoid the natural world where I'm surrounded by triggers that reinforce the ecstatic experience;  but I'm scared if I take steps to try and stop the process I'll lose them forever.  Perhaps this is why I need to talk it through with someone from the "medical" world even though for me, this is a big leap of faith. 

I realise, ultimately, it's a form of madness that has to end.   A Jane Austen short story....I'm not sure I get that either: maybe I've blown too many braincells? 

PS My sense of direction is pretty crap too with the added drawback - I can convince myself on route, that I know where I'm going!  And the narrowing text thing is really irritating. 

Victoria

Hi Victoria,

I found one of my newer neuropsych books that calls what I think I'm half-way talking about as "competitive recruitment" using behaviourism, in "Behavioral aspects of epilepsy: principles and practice" By Steven C. Schachter, Gregory L. Holmes, Dorothée Kasteleijn-Nolst Trenité, 2008, in Chapter 30, pp. 245-252, chapter title Conditioning Mechanisms, Behavior Technology, and Contextual Behavior Therapy (JoAnne C. Dahl, Tobias L. Lundgren).  Toward the end, they get too soft psych, as though they're about to recommend Epileptic's Anonymous, LOL, but they list 50 references.  In the USA, google books has the chapter at (sometimes blocked?):

http://books.google.com/books?id=a6Ygv5_RKKsC&pg=PA245&lpg=PA245&dq=behaviorism+epilepsy&source=bl&ots=BRZTlKEWkD&sig=Le-jQZovYZBojD5oV9PLqCMrq70&hl=en&ei=SjHASpiAJ4jWtAOw2Z3pAg&sa=X&oi=book_result&ct=result&resnum=8#v=onepage&q=&f=false

I spent my popcorn money to buy the book last year, but it has a few new things, and it quotes Dostoevsky again!  Maybe you've already read it too.  I found their implied correlations as causal, between function and social skills, presumptive.  Operant, Pavlovian,  aversive, etc., conditionings weren't clarified.  Much about other aspects of epilepsy in the whole book.

Google books also listed "Acceptance and commitment therapy: contemporary theory research and practice" By John T. Blackledge, Frank Deane, Joseph Ciarrochi, 2009, with parts on epilepsy and competitive recruitment of brain cells in stopping/controlling seizures, around pages 130-149  (mostly the same).  It's less expensive, $30.00 USA at amazon.com, but much about things other than epilepsy whole book. 

Tadzio

This is my first post and I do not know where to start - I am unsure what forum my daughter's experiences would fall under and I would be very very grateful if someone could point me in the right direction.   3 months ago my 22 yr old daughter suffered a grand mal seizure - her first seizure - after a huge upset.  She has CP but is very high functioning - no previous problems.     She was put on Ativan and did not have any seizures for a month until her Keppra meds were upped to a therapeutic level - for the next 2 months she had just about every seizure under the sun and was seen by various neurologists/had a cat scan/two EEG's/MRI etc - nothing showed up.  Eventually she was sent home wearing a digitrace monitor for a 48 hr period - she had massive seizures whilst wearing it as it upset her so much - now we thought we were going to get somewhere...wrong.  Nothing showed on the monitor and so it is presumed that she has PNES (psychogenic non epileptic seizures) - she is being weaned slowly off of her meds and will start counselling shortly.    In the meantime she has improved - has not had a seizure in over a week and appears to be getting a handle on the fact that these seizures are caused by upset and most particularly with her girlfriend (who also has had to acknowledge that she needs help to deal with depression).    

 Now, here comes the strange part.....last week she had a period of intense concern and after a short sleep woke up to what can only be described as a changed soul - extremely intuitive and spiritual.   She has always been very in tune with peoples moods/problems but now these have taken on a whole new life.  She sees people's auras and accurately describes each persons colour (she has not done any research on peoples auras as she had always thought this to be "hippy dippy"!!).    Her descriptions so far have been 100% acurate and she also appears to know about traumas that have happened to people that she meets that have had far reaching effect and impact on their lives.  I think she feels that she has become a healer of some sort and says that she feels much more relaxed now - much happier.    My other daughter has been completely "freaked out" by her sister's change and feels that this is just part of her seizures and fears that her brain has been damaged.    

Has anyone heard of something like this?

Victoria,

Thanks for asking. The short answer is no.

ADVICE TO ALL OF YOU. STAY AWAY FROM PSYCH SETTINGS! THESE PEOPLE WOULD'T RECIGNISE A DIFFERENTIAL DIAGNOSIS IF IT HIT THEM ON THE HEAD!

Underlying medical conditions must be diagnosed and treated before a diagnosis of a psych disorder can be made.

Well, this rarely happens. Epilepsy is a rule out. Temporal lobe epilepsy, especially with secondary limbic system involvement, is a major rule out.

The post ictal phase of these seizures is often mistaken for psychosis. IT MOST DEFINITELY IS NOT!

What it is are dissociative symptoms. These are often mistaken for psychoses because ignorant professors are teaching their even more ignorant students that the DSM-IV-TR Axis I section only has three sections. The dirty "D" word does not exist.

Johnny, does your shrink talk to your neurologist? If he doesn't, it's time to ditch him and find a new witch doctor.

The "atypicals" as well as the much loathed phenothyazines have a high seizure risk. I had seizures every night after my dose of Quetiepine (Seroquel). Just what you need. You are right to question this polypharmacy. It's just bad, not to mention expensive. If the SSRIs aren't working for you (you're on one of the best) I don't have high hopes for the Aripiprazole (Abilify).

SSRIs make me manic, but they don't keep me from being depressed. I need dopamine for that and the folks that take such good care of us at the US FDA think it's another dirty "D" word. I take a huge (not huge enough) dose of Modafinil including an HS (bedtime) dose. I also have ADHD and various parasomnias, which is how I talked my docs into it.

Tadzio, am I beginning to sound like you?

I still feel the same way about organized religion as you and Victoria do; however, personal beliefs are quite different.

I, too, took refuge in psychology and philosophy. It is a "normal" symptom of the protracted post ictal phase of these types of seizures. We really quite an intellectual bunch. Just please don't talk Skinner to me. I started reading him at 15 and had to stop when I got to the part where he brags about putting his daughter in "the box." My heart still pounds and I feel like I'm going to lose my lunch just from thinking about it. Kind of like the "third cure." Abuse justified by dogma.

To the person who just joined us, welcome. I'm kind of suspicious about this DX. Some or even most of her seizures may be non-epileptic, but that doesn't mean that they are all psychogenic. And this last one you describe sounds exactly like what we're talking about here.

I've had these sorts of abilities since I was a child. I had no idea what they were. My brother, ever the skeptic, thought I had ESP. Practitioners of Asian disciplines devote lifetimes to attain these abilities. It is often referred to as the "sixth sense.". That certainly is what it feels like.

I also have a ghastly history of trauma. Ironically, the Oxcarbazepine (Trileptal) I take to control my seizures aggravates this. I have one very easy way to differentiate the psychogenic seizures from the others. I can make them stop. I use various Eastern breathing and relaxation techniques. Perhaps you should look into this for your daughter before she gets "shrunk" to nothing.

I hope I've been helpful. I apologize for my cynicism. It's been a long time coming.

On a happier note, last weekend was Rosh Ha Shonah. It's the Jewish New Year and I don' think I transliterated it correctly.

My best friend lives in Florida and she was worried about me spending the Holy Day alone. So was I.

Well, I did not spend the Holy Day(s) alone. I spent them with Hashem (G-d). I was truly blesses. My eyes well up with tears of joy as I write of it.

Religious experiences are not psychoses. Talking to G-d is also known as praying and I would like to know when that became a pathology.

I wish you all the best with your struggles. Please don't forget that you can and should seek a second opinion. We know ourselves better than any clinician who has spent a few hours with us.

To thine own self be true.

Zealot

   Zealot , Victoria and others

  Like a dummy, I was talked into trying the Abilify by my mother. I took a 10mg pill as the script advised at bedtime Sunday night (11:00pm). I know that I should have waited to talk to my Neurologist thats out of town, but to avoid an arguement with my folks ...which usually brings out the bad side-effects of my Keppra and Trileptal from extremely high doses ! To remind everyone 4000 mgs Keppra ,1500 mgs Trileptal , 20mgs Lexapro and .5mgs Klonopin daily between morning and night. I took the abilify and 4-5 hours later ,I wake up sick to my stomach ...stumbling down the hallway dizzier than ever , just get to the bathroom and threw-up twice. I wake my mother up and showed in the toilet the results of our " little agreement to avoid an arguement" and she felt horrible for me, that was obvious ! She got me to lay down, after I sat on the patio sweating  took a few puffs of my "medical grade marijuana (no joke it's medical) to calm down my stomach and calm me down altogether. She layed there with me until I was relaxed and done throwing up. I woke up and decided to call the Dr. (Neuro psychiatrist) that talked me into trying this Abilify and left him a message to call me. He finally called me back around 7:00pm. apologizing up one side and down the other for what had happened. He told me don't touch the Abilify anymore.

  This is probably leading to another topic of discussion that should be discussed elsewhere in the forum.  The Dr. said now this is out of the way and won't work for you , would you consider trying Marinol ( synthetic THC from marijuana in pill form ) ? He told me that he would like me to give it a try until marijuana is legal in the state we are in legalizes it . I asked him he would go to that extent to prove my point on how it benefits me like I had been telling him and many others in this country already. By jumping through those hoops to try getting the script for me is basically him agreeing with me how it helps me. Now my family is just shrugging there shoulders with his response to all of this. I told them Marinol is an expensive medication and chances are it would be "HIGHLY"  unlikely this could even happen. All that said and done ...would anyone here think that someone (Doctor) is trying to help prove my point by doing this or is he just waisting time? Until all of this is over I'm just going to continue about things the way things are. Does anyone know much about Marinol or even Satevex (Inhalant THC)? I wish I could understand all the info that has been gathered from these books that you all have been talking about , but my brain and its intellectual capabilties just is'nt  there to pick up on all the philosiphy and veiws on everything from these perspectives. Too many meds and operations , but one thing is for sure !!! These ecstatic seizures are no joke that we have , it's definitley an experience that leaves you with a whole different approach to what seizures can mean in a way to some of us. Just 5 minutes ago I called my pharmascist and told him about throwing up the Abilify and the Doctor trying to get me Marijuana synthetic form (marinol) He told me they can't even get that at the drug store but at the hospital or mail order possibly. He also made a suggestion that I agree with ...and that is keep smoking the Medical MJ just be patient ,lay low and your time will come for your perscription soon enough. Just be wise how you use it and don't abuse it. I also told him I would bring back the 29 Abilify I had left here and he said please do so. They have a return meds. you don't use and they give it back into the system to help people who can't afford these drugs. 

   To all ,take care , Johnny  

Hello all,

Just a very quick post until I have a bit more time.  Seriously, I am going to contact whoever runs this site and ask them to sort out the narrowing posts - we'll be disappearing soon into a line of single characters!  Victoria

Victoria,

I know some of these posts veer off topic, but it's hard not to talk about the price we pay for these seizures.

Tadzio, I don' know why your posts are all up at the top. I have a web feed set up for this forum and the comments are correctly sorted in reverse chronological order. I will try to contact our lovely Web Master and ask her to help us.

By the way, Victoria, my dyslexia got way out of control after the last spate of really bad seizures. I have VzNavigator installed on my Crackberry and it talks to me and shows me the map from a human's eye view and I still go the wrong way. It reminds me by politely telling me and asks if I want it to calculate a new route. I'd be lost without it. [Ha ha :)]

Johnny, I know that meds are really beyond the scope of this forum, but here goes:

The brain has built-in cannibinoid receptors. I won't get all medical/neuro physiological geek on you but I think there is one you should ask your new! MD about. It is used to treat Parkinson s as well as the depressed phase of bipolar disorder. It blocks excitatory neural transmission and increases dopamine output. The first will help the seizures and the second will make you less depressed. It's been around for awhile so it should not be too expensive. Good luck.

Was that No No Not for me? I'm not talking about the paranormal. I'm talking about spiritual beliefs. I choose to worship at the Throne of G-d, not some philosopher or behaviorist.

We don't just have medical condition. Our brains and therefore our minds are changed.

I have my beliefs and you have yours.

Live and let live.

Zealot

Hi Zealot,  great to see your spate of postings - I agree the thread is all over the place. This is a shame.  I've responded to the person who has taken offence.  Perhaps I'll post something at the top to suggest that people take time to read the posts in date order before commenting or passing judgement.  Are you feeling any better now? 

Hi Johnny, sorry to hear about your recent problems with the medication.  Nightmarish.  I think you're very wise to give the latest ones a  miss. 

Hi Tadzio - you OK?  I worry a bit when you go quiet...

Victoria

Hi Victoria,

I'm OK for me. I'm trying for a new MD to get more intermittent regular Keppra to stop tonic-clonics when I get a good warning. The width's about to disappear!! I thought I better mention here too about being very careful and concerned over any major change in "regular" seizure types and patterns. Many physical incidents, compounded with epilepsy, can result in great change in seizure characteristics/patterns/incidents, and can be a signal of great alarm, easily missed because of epilepsy always taking the blame, especially for transitory events. About 3 years ago, with one of my tonic-clonic seizure migraines, I waited way longer than normal for the severe migraine to leave, until after another cluster of seizures hit about a month later, and still, my migraine continued, until both sides of my body started to go numb. Then emergency was called, and ER said I had about 3 hours to live without emergency surgery for a frontal subdural hematoma.

Tadzio

Ah - I did wonder about the 3 hours to live tag and suspected it was based on a real event which is why  I like to check.  I also wanted to say all your posts have been really helpful even if it's taken me time to fathom out what some of them mean.   Oh just a thought, but correct me if I respond to someone and get it wrong - you're much better on the technical stuff.  I am seeking help re: altered seizures and depression/suicidal thoughts.  I've already met with my neurologist (who is decent and helpful) and he wants to work jointly with a close colleague to come up with a plan of action.  I am sussed enough now, to realise when I need to ask for help, although my natural inclination thus far has been to go it alone as much as possible.  I don't really like medical professionals having too much input into my life and it seems as if you feel the same way.  However, if they display compassion and understanding, it's easier to overcome my medic phobia.  Actually it's not a phobia as it's based on previous negative experiences and therefore not irrational...but I'm not sure what the correct term is.  Whatever it's called I know that far too people with epilepsy end up feeling the same way which is rather sad.  I hope you find the right MD.  Victoria.

Victoria,

I often have delayed responses. I read your post and it kept banging around in my head.

Fear conditioning. We would not survive as a species without it. Years of exposure therapy can come undone at an instant with a single negative outcome.

Fear conditioning is a complex ballet featuring the Amygdala. How it gets expressed depends on many factors. You are right. It is not paranoia. It is based in fact. There is nothing irrational about it. You stick your hand in the fire and you get burnt, well you'd have a serious problem if you weren't afraid to do it again.

There is considerable overlap in the symptoms of MDD and Anxiety Disorders, which include Phobias, OCD, PTSD, etc. And serotonin and norepinephrine are also involved in both. And guess what else! The amygdala and the hippocampus do a little pas de deux causing "reexperiencing," the newest politically correct word for flashbacks, déja vu, or (shudder) the dreaded "D" word dissociation. Is any of this starting to sound familiar?

Let's throw in some voltage-gated ion channels and if the seizures aren't flipping the breakers, then the meds, which partially block the channels are wreaking havoc on your feedback loops.

So please don't blame yourself. Don't let some shrink tell you that you need cognitive adjustment. What you need is to learn how to deal with a brain that is playing new tricks on you. If course, "It's all in your head.". That's where the seizure's are. Duh. Come to think of it, that's where all psych disorders are. It's all about fried circuits, what ever the cause. The best the docs can do is to find meds that help more than harm and teach us how to cope with the tricks our brains play on us.

What a nice fantasy. A world where docs help instead of blaming PXs for their own treatment failures.

The more I think about all of the mistreatment I've seen and experienced, the angrier I get. I'm talking about criminal behavior.

I am also feeling intense fear. If I let it get the better of me, there are too willing to "send someone over to your apartment to help. Give us your address.". I was born at night, but it wasn't last night. I'm not the only person I knew who was hauled off to the bin with a police escort because some stranger made a phone call. One woman I know was hauled out in handcuffs while suffering from the post ictal effects of a not quite ecstatic CP with 2ry TC limbic system involvement.

I am so petrified that I lose time on the days I have my clinic appointments. If I were spurting blood across the room, I would tear up a sheet and make my own compression bandage. I've already survived an incompetent paramedic missing the vein and punching into my brachial artery in a stationary vehicle, so what! I am so afraid that when people practically begged me to let them call for an ambulance, I was having a pretty bad seizure in public, I wasn't on the ground writhing or flailing, but it was bad; I don't remember much and I said no. Columbia Presbyterian shipped me up to the State bin once and I wasn't about to let that happen again. Paranoid? No. Scared half to death? Maybe so.

What does all this have to do with ecstatic seizures? It's the price we pay. That no free lunch thermodynamics thing. The dark side of the moon thing (yeah, Pink Floyd). The reminder that I'd better not try to induce another no matter how tempting it might be. I could probably do it with the yoga fire breathing technique. I think this causes hyperoxia and is used to induce a state said to be as one with the universe. It's like a spiritual orgasm. Sound familiar anyone? And this from the girl who found G-d there.
Like I said before, my life is in shambles. I am hurt, angry, traumatized, and scared out of my wits. U don't know how many of me came out and contributed to this post. I always get more symptomatic when traumatized and I also get really bad when I'm post-ictal, which I am right now. I don't know who cooked dinner, it sure as hell wasn't me.

And yet--I still wouldn't change who I am for a second. I'll take the good, the bad, and the ugly. The agony and the ecstasy. The boring and expensive life as mm-bah-humbug (sorry, you are a lovely person, but the only way I can keep track of names is by association and right now all I have is the index; I can't get to the file) and now I forget what I was trying to say.
Oh, yes. No regrets. It's a hard life, but it's mine. And I've experienced more in a single moment than most people have experienced in a lifetime. I can't change it and I don't want to.

We're really a good bunch here. I feel as if I've found "soul mates" for lack of a better term. Our ideologies may be different, but in essence we are the same. And we can look past seemingly mutually exclusive views and still find the common ground. It's a whole lot more than "let's agree to disagree."

I can't thank any of you enough for your concern and support.

Zealot, et alia

peace R.C.

  Hi not high

  I am barely hanging in there Having high fevers from flu kicked in several long gmals 

  so bruises, a concussion ,(the floor) I could say so much here I suppose

   I,m in that stage you all speak of earlier right now just floating around ,no balance, a 3rd grd memtality

  throw the flu on top of that and this is almost  the only time in   15 years that this has made me nervous.

  I laid awake for 2 nights this week ,completly gone  hallucinating, I have been straight for 15 yrs it is quite a rush.

  Instead of my typical rambling I was just going to say one thing,.more later when I AM smarter than a 3rd grader.

  I have told several neuro,s and used this line on this site  

  My use of LSD and other strong hallucigans has been a bonus in relating to the over all effect of these seizures.  

  I have had ovr a 1000 gmals most lasting over 20 min,s some as long as 30,35 mins and have gone "status" numerous times and not until fairly recently have they made me nervous in any way .

  I have read everyones diarys here and probably all the posts and compared to the way I have dealt with this for many yrs has been great  

  The euphoric feelings are so similar . I have been through  ptsd twice and as a hyper active person my adrenline levels have always been maxed out so when these seizures started they just made me mad more than anything  , but I understood them also they have switched sides of my brain several times .

  But that far out feeling that so many refer to I have experienced as boxer with severe concussions also lol .

  Frankly most of this scares me now a high fever with gmal szs I feel can kill me .  Rick 

 

 

 

 

Rick,

My G-d! Are you home alone?

If you can, get to your phone and get some help! Please!

Febrile seizures are a bitch. You don't need this on top of an already out of control disorder.

I cannot believe you actually read all of the posts, especially in your condition. Two sleepless nights could precipitate seizures.

I also got the flu a few months ago. I'm the person who was tbrown on my bed and left to die with a fever of 107F. I won't repeat the tale since you've obviously read it.

YES!!! THE FEVER CAN KILL YOU!!! I was almost completely paralyzed. I couldn't even talk. I have not been the same since. The damage is persistent and so diffuse that I can't even figure out what it is, let alone how to fix it

This stoic, I don"t need any help attitude probably accounts for your success as a boxer. The concussions you sustained probably account for epilepsy. I used to be like you and it got me a ticket to my first visit to the nut hatch. It's been a downhill slide from there

I was feeling very bad for myself. Nothing like a reality check to snap me back to my senses. You have it much tougher than I do.

I will pray for you. If I knew more about you, I'd get you an ambulance. Please post a reply. If you use the "Add New" control on the first page you can be sure it will be seen

Please let me know if you're still alive!

Zealot.

peace R.C.

  Hello

  YES i,M "FINE"  I knew I was jabbering to much as it was.

  All I meant to say in this thread was my experience with hallucugens and the similarities to the outer mind ,wow far out feelings so many are describing. 

  As for me I,m a little better it has been a LONNNNNGGGG week 

  I,m not alone thanks, I,m a single father of an exceptionally bright 11 yr old girl  that has witnessed a few dozen of these szs now .

 She is under strict orders NOT to call an ambulance and understands when to do so .

  I,m having long gmals in my sleep now a days 1 a week miniumum .most last 30 min. 

  Me and my d.d got h1 n1, the first hrs I got this the fever kicked in and it was clear I was not O.K.  I feel the fever was a trigger and set 2 maybe 3 gmals in one at 2a.m another at 6 a.m both 30 min. long, shew well that caused 9,10 hrs sleep then hunger confusion etc etc. a cpl days of pure hell .

  I have never been unable to care for myself in my life I,m only 46, very scary stuff.

  I,m rambling because I,m so out of focus.  I fully understand what you said about a "STOIC" attitude that is not where I,m at at all. lol  I,m on ssdi now and is actually how I ended up here from worrying about other folks problems andlet my self slip in a hole ?

  I was placed on ssdi in less that 90 days on first try ? so I I GUESS I was sick lol huh? that has been a real duh moment for me . I have been telling others for yrs now , it takes 8 full days to recover from "one" of these szs.  so three or four a month and with some of todays laws I can be liable if I hurt someone ? 

I did not mean to imply I read all this material at once lol lol 

 oh no about 4 yrs time but mainly over one summer when I broke my foot and was imobile . 

  Oh yes and to some degree you are right about concussions Just my life in general has led up to a lot of this .

   I now understand I have had "auras" all my life and possibly starting from being hit by a car as a 5 yr. old? 

   But that dejavu auras that we are talking about here (on topic) lol  I have experienced all of my life .

   To varying degrees some good,some GREAT, and different times bad.  I posted here to just simply say what I said about the enlightening feelings from dope and the ones you are talking about .

  Can be a lot of fun I suppose . I see all of this completly as just a bunch of loose receptors and brain cells .

  I appreciate the concern  I do feel a little better today very weak , 5th day, but yes here is proof the fever and seizures DO NOT go together. lol.  RIck 

 disclaimer.....I havelearned to type 8 times from memory loss some days I get it some I don,t . R.C.

Rick,

What a relief to hear from you. Fever and the brain don't mix. PERIOD. If you didn't have a seizure problem before a fever, you could end up with one after. The brain, being mostly fat (lipids) literally starts to melt.

We have a surprising amount in common. Taking care of others instead of myself is how I gained entry to the booby hatch. I also got my SSD within 90 days the first time and on a psych DX. Me disabled? Not.

I am now thanks to the people who are supposed to help.

I suffered the first head injury I can remember when I was six months old. I had what could be my first ecstatic "aura" at less than one year. I've had myoclonic seizures for as long as I can remember, mostly at night. I've woken up on the floor. I've bitten my tongue in my sleep. I've lost time and found that I was covered with bruises. I never knew what it was. I didn't have a clue until a very good resident told me they were seizures. Then I started reading. I still can't get a DX.

You have an extraordinary daughter. Do her a favor and take good care of yourself.

Please keep in touch and let us know how you are doing.

Zealot

Would this count as an ecstatic seizure? I lived next door to Army Navy Country Club as a Georgetown Law student in 2001. I applied to several federal internships in order to beef up my resume, and I woke up one night with a projection of three special air services guys and one Saudi Arabian man who reached over and choked me.

My seizures became worse and I was never notified by a federal agency or case officer. I was not hallucinating. I remember the incident being frightening and a waste of someone's life.

Is this a seizure?

I was also drugged twice with GHB and I think now someone might use it as a defense because I have a noticeable CNS tremor and seizures where I twist and wring my hands. I don't think it should be legal to say we needed to drug her with GHB for her own good, do you?

I think they might be trying to make it seem like I am mentally retarded so they are not charged with attempted murder with the GHB thing.

I'd like to think the first thing was just a hallucination but it seemed more like harassment.

I was unable to finish my JD and my epilepsy never presented a problem nor did my nervous system disorder.

peace R.C.   

 Hi not High!

   PSSSSTTT!!!! someones listening! Sorry have had a problem communicating for a while ! I can read it I can relate to it but then the process of re-writing it puts such a strain on my mind (right front) it actually hurts ,twitching, blinking, sweats, REAL pain ?????

 Try telling that one to neuro mmm? I try to write my thoughts down and twitch and float above my chair if I try real hard then? lol 

 Think I will keep some of that a secret for now . 

 Just a note to say PEACE to you all and let you understand that others are out there and do "feel" a lot of the things , I have recently read every word of this post and in all honesty have felt about 75% of it since child hood

 I experience partials now that are 45 sec. to about 2 min long that can best be described as orgasmic ? also a lot of the same feelings a person may get in the millisecond after you are electrocuted ,before it hurts. a lot of these feelings are also the same rush that is addicting from drug use or adrenaline rush .

  I also "feel" a lot of the hyper-sensitive I experience when in postictal phases during recovery from long g-mals would fit into what is being described as "ECSTATIC"

  Just my personal BUMP to say thanks  Rick Wichita Ks.

 "It's not the crazy people you worry about--It's the ones that don't know it" R.C.  

Hi Rick,

I share Zealot's concern about your condition and I'm sure many other people on this forum do to.  Have you contacted someone to help?  Let us know.  Follow your instincts...

Victoria

Victoria,

When your brain keeps frying itself and you take meds to stop it from frying itself, there's bound to be some fall out.

Seizures change our brains and eventually result in permanent damage. The meds can also result in irreversible changes.

Do not despair. Physiology is not destiny. I was depressed as hell and having suicidal thoughts because my thyroid levels are too low. I haven't had a thought like that in a long time. I reminded myself that it was my mind and my body playing tricks on me and even though I'm pretty incapacitated, I'm not unhappy and miserable anymore. I've identified the problem, accepted it for what it is. That doesn't mean that I'm not going to try to get my meds fixed, but fighting with the State of New York is not at the top of my "to do" list.
M
Meds help, but please be very careful. Polypharmacy is dangerous because most MDs don't know what they're doing. I've tried talking basic neurophys and biochem to my MDs and the results were not good. Make sure you ask about titration when starting a new med, cross titration when changing meds, and, this is critical, drug interactions. Go to rxlist.com. You can look up all your meds there and they have the complete prescribing information and patient.

Also, go to the "for professionals" part of this site. I was doing a google search and got a link to there and that's how I found this site. Lot's of really good stuff there and some of it should be comprehensible to an educated lay person.

Also, be really careful about what you are calling depression. Think carefully about what triggers the suicidal thoughts. You may be able to beat them.

Are you feeling guilty and worthless? Or are you anhedonic and avolitional. Just don't feel like doing anything any more. Nothing beings you pleasure anymore. Is your concentration worse than it usually is. Do you wake up early in the morning and can't get back to sleep or would you sleep 24/7 if given the chance. How is your appetite?

These answers are critical and if your MD doesn't ask you these questions run, don't walk out of his office. They are critical in making a proper choice of medication.

An SSRI will be useless if you are suffering from anhedonia, in fact it will make you feel worse. Bupropion and a couple of newer ones are weak DAT inhibitors, but they are also NET inhibitors and a substantial seizure risk. I take Modafinil, which is very expensive and I soon won't be able to afford it. Armodafinil is even better.

If you don't live in the US, Tianeptine (Stablon, I think, from Labatoire Servier [spelling?]) is an SSRE! This will elevate your DA levels and take care of the anhedonia and lack of volition. If it didn't have corn starch in it (allergy), I would be ordering it from Canada for myself!

I'm also thinking about Memantadine for myself. That's the one I told Johnny about (if he was able to find the post). Trileptal can cause depression. It is the med of choice for treating CPs, but as we know, everything has its price.

If you have the worthless, guilty kind of depression, well, you're in luck. Serotonin's the ticket and there are lots of SSRIs to choose from.

If you're also having concentrating, there are several SNRIs on the market. I don't remember how much of a seizure risk there is. Generally, anything that raises NE levels increase seizure risk. .

If you've got the whole shebang, that's tricky. Transdermal Selegiline, the EMSAM patch, is a very good med, but MAOIs are tricky. It is contraindicated with trileptal because it has three rings just like the tricyclics. That is bogus. The dosing is tricky because Oxcarbazepine raises the serum concentrations of selegiline by up to double. I used to use half a patch. This is also a No No, but when your MD is a hotshot research scientist, he makes the rules. It works very well; I just can't tolerate that much SE. It also has q gazillion med interactions. Because of the interaction with the Trileptal, you'd have to be careful with your diet, but that's a small price to pay for no more misery.

Do not under any circumstances take an atypical. I don't have a medical license, but from my own disasters, Johnny's disaster, and a plethora of others I have witnessed, it just seems like a bad idea.

I hope some of this helps. I am not an MD, but I started studying medicine on my own when I was 15.

You have to make up your mind. Educate yourself, advocate for yourself, and remember you can always change doctors.

And especially remember that meds are not the whole answer. How you cope with mind fucks this stuff gives us is ultimately the key to your survival.

Best of luck,

Zealot

Hi Zealot,

I'm British, well Welsh actually and I hale from a small valley town, a former mining community.  I've lived in England (mainly London) since I was 18 when I traded the valleys for university.  I didn't look back!  I now live on the South Coast, two minutes from the sea and although I travel 30 mins to work each day, my office there is a minute from the sea (hence the seagulls)...more about them later following a comment on another post! There may be some spelling differences in my posts, and I still can't get used to your date order.  For the first few weeks I thought lol meant lots of love:  I know you Americans are more in touch with your emotions than us Brits...  I have since realised and had confirmation that you use lol to mean laugh out loud.  Perhaps youngsters use it the same way over here too, and I'm showing my age!  Victoria

Hi Victoria,

I spent most of my childhood in an abandoned coal mining community.  Some of the old mines were still on fire, belching fascinating fumes, and great clouds of steam in the winter, though I always found the isolated thick brick-walled dynamite stores the most fascinating with it's coolnest in the hottest summers, warmth in the coldest winters, and a foot-thick iron vault door, begging for disaster, but then, youthful stupidity is also a blessing.  I can't read the forum postings on the last page anymore, but some of them copy to a word editor in a halfway readable format.  Maybe the website is blocking/closing comments to the forum now, then maybe it will go to four readable pages soon.  I hope so!! Lots of Love,

Tadzio