New - Epilepsy and Demonic Possession...or something of the sort
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UPDATED: Sat, 10/10/2009 - 5:55am
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victor...
Ecstatic Seizures
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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
By victor... at Thu, 08/27/2009 - 3:32am | 2130 views | 224 comments
Recent Comments on this Discussion
Hi Everyone,
I've been researching how Iago used the word "ecstasy" with Othello in the lines "Whilst you were here o'erwhelmed with your grief,--... A passion most unsuiting such a man,--... Cassio came hither: I shifted him away,... And laid good 'scuse upon your ecstasy;" (Act 4, Scene 1, lines 75-78, different punctuations with different editions), and the vast number of interpretations. (Hilaire Kallendorf included).
Victoria -- Was William Empson the Literary Critic who wrote the book you were thinking of? Or wrong book?
Zealot -- I just read in the New York Times that New York is probably going to follow California's philosophy of cutting medical services and Medicaid. Every state seems to claim to be spending the most, while pointing to other states as rationalizations for more Draconian cuts!!!
Especially with the emotional phenomena, I wonder of the differentiation between Temporal Lobe Epilepsy and Limbic System Epilepsy, whether they are the same, or a major confusing overlap is involved in the classifications.
Lots of Love,
Tadzio
Hi Tadzio,
Empson is the man! You are a veritable mine of information. I cannot even remember why I posed the question; perhaps to highlight the vagueness and uncertainity of meaning? I can't even remember if the book was enlightening - perhaps the title did it for me all those years ago. I may well seek it out if it's still in print.
Right - classifications, labels, diagnosis, tick box exercises, personality profiles, DSM1V, MMPI and DSM (not 100% sure about the last three but they are mentioned quite a lot) and I assume they're more of the same...ways of neatly categorising, reducing unique individuals into the not so unique. I like a definition I've found of category "any set of objects, concepts or expressions distinguished by others within some logical or linguistic theory by the intelligibility of a specific set of statements concerning them".
Was it Oscar Wilde who said, "consistency is the last refuge of the unimaginative"? I love this quote.
Lots of love,
Victoria
Hi Guys,
I remember with shock my social anthropology lecturer declaring that there are no certanties, no absolute truths ; only perceptions and the reality that flows from it.
This helps when I try to explain to the pompous ass that I feel no hunger. Nor thirst.
I am starting to build up a picture of myself. A picky eater, never interested in food like my fiends. But when I danced I felt more alive. I am looking for a dance teacher. I am tired. I keep falling asleep. My son's school has their prizegiving tonight. He will receive a prize and at the rate I am going I will not be able to attend. I am at my wits end. These bloody doctors. Dont they see our lives. Or are we the damn cash cows eternallyill
The DSM is a USA special. The rest of the world use the ISDM or some other 4 ltr acronym starting with I that I can't think of right now.
WTF is DSM and IDSM. And do I need to know it? I am all for being knowledgable but these doctors are supposed to know their shit so we can get on with life, right? I could not go to my son's prizegiving and he received a merit award for academics. I am furious!! I passed out before we left. Tonight my hubby is taking me to a open air concert. We hope. This freaking uncertainty.
Zealot, don't be angry at family. You did not choose them, and given the choice you probably would not. It is the randomness of life. Make your life as best you can and start by taking care of yourself. Some orders are very caring. Perhaps this environment will help you get on your feet. Use it as a temporary home. The best order for you to find like minded souls would be the Dominican Order. (Teachers, intellectuals , lecturers, musicians, tend to go there. ) I am not prescribing merely suggesting. But let the nuns take care of you if they are kind. You are in a good place then. And smile. And do your hair. And wear some lipstick. And look good for yourself.
My name means strength and courage in Greek, they say. Nah!
Hi Everyone
Maniac maBenzi,here. Thanks for the lead. Is the limbic system not part of the temporal lobe?
Guru Webmaster?
I love Othello. I write from free memory here. Can't find my copy anywhere. We think Iago only used the epilepsy as a ruse. Remember, seizures are very dramatic and they are on stage. Also Iago was driving the poor man to question the faithfulness of his beloved Desdemona. We see Othello fainting in shock. Iago is supposed to care of his master and mistress's well being and happiness.
He fainted...Why? He had a seizure....Oh! Cassio was no match for Iago. In fact the whole problem stems from Iago wanting the position Cassio got. And I don't buy the story that Desdemona took pity on Othello. She ran away from home and married him against her father's wishes. I think she wanted to beat the competition. Remember, Othello was a gordjis strapping General. Woohoo.
Ok that was to cheer Zealot up. How can you be homeless in the land of the free? With your disability? Ok you have got to think with that beautiful brain of yours. Mask the epilepsy. I do. Everyone else walks around with masks. Why should we declare our epilepsy to all and sundry? For what purpose. It is none of their business! You fainted, you don't feel good. Girl, learn to swoon. Bat those eyelids to get what you want. hide the smartness. Bring it out only when necessary. It is a man's world and they are not interested in sick women who are clever. Look the Beast of Unkindness firmly in the eye and take what YOU want. Ignore the wailing and keening. Learn charm. You can speak any language, bokkie, so learn charm. My mom can be just as wierd. I needed to ask my Dad something and she would not put him on the phone! As an agnostic I pray everyday...one turns primal!!!!
Take Care
Aluta Continua.
Tadzio,
The Times is a day late and a dollar short. The axe fell late last year and now that it is "public knowledge," it is only going to get worse.
City shelters are closing left and right. State "Psychiatric Centers" (snake pits) are literally starving the patients. They only dispense generic medications in spite of compelling medical need (in or out patient). Churches are closing or reducing the number of beds. The housing/shelter situation is much worse for women because there were fewer facilities and more of them have closed.
The accountants and lawyers are practicing medicine, quite ironically causing increases expenses over all. The situation is already desperate. I don't even want to imagine it becoming worse.
Its been many years since I have read or seen a production of Othello. I do remember that in Elizabeth an English to die meant to achieve orgasm and that to die in ecstasy made the intended meaning explicitly clear.
The theme of the play, that we are our own worst enemies and that we undo ourselves by our own lack of faith in ourselves (and G-d to those who believe) and allow ourselves to become blinded by our fear, has special relevance for me right now. It is a mighty struggle.
The Mission of Charity, the cloister in which I now "live," seem to be making a special effort to bring me into the fold. I go to Mass and the Sisters' Sunday Vespers because prayer is more powerful when many hearts and minds are conjoined. They have started reading from the Old Testament and following with a related Gospel from the New.
I know they are Missionaries and they believe this is part of their Divine Mission, but some of the implicit and explicit anti-semitism is painful to here. The Mother spoke to me and said how much she respected and took joy in the fact that I prayed with them. I told her, "This is a House of God and we all worship the same G-d."
She told me she was glad I felt that way, yet the pressure continues.
I received more help from the Catholic Church than I have gotten from any Jewish organization I have approached. This is very painful to me, but I will not allow it to shake my Faith. I was born and raised a Jew and I believe, not because I was forced to, but rather because my life experiences have brought me to this.
Jews do not believe in proselytizing. It is difficult to convert to the Jewish Faith. Live and let live.
There is a very close relationship between CPs and the Limbic System. CPs occur deep in the TLs and involve the LS. That's probably why they rarely show up on EEGs unless they turn into Focal szs and start moving. My TCs are from secondary LS involvement. The LS has connections to every part of the brain and the electric storms create new ones that can become permanent along with the TL damage.
The post ictal phases of these szs are a mother fucker. They last for a week. They are mistaken for Psychoses because of severe Dissociative phenomena. Direct connections between the Cerebral Cortex and the LS are responsible for many of the after effects, many of which through repetition become permanent. Been there, done that. This is both the voice of experience and research talking.
Over and out on that one. Too many painful memories. Seizing with a "normal" EEG because they can't see that far. PNES, you know. Or the highly insulting "Pseudo Seizures.". Or the insult propagated on this site: "Seizure Imitators."
Here's to fair weather inside of our Dural Membranes.
Lots of Love,
Devorah (Zealot)
Devorah/Zealot, your comments about the nuns trying to convert your "lost soul" and MaBenzi's spot-on commentary just made me chuckle. I guess they can't help themselves.
Ramakrishna once taught that if you picture a wheel with many spokes, that each religion is a spoke in the wheel, and yet they all lead to that one hub in the middle which ultimately is G-d. I truly believe each Path takes us to The Absolute, and each of us have our ways of believing/worshiping, thus different religions serve each of us differently. I fully believe a Krishna worshiper could listen to a Christian song, where the singer sings about Our Lord, and to the Krishna worshiper, "Our Lord" = Krishna, and he can listen to that song and feel special devotion and connection to Krishna. Or Lord Buddha for the Buddhist. Your pivot point is your Jewish faith, which is steeped in beauty, wisdom and mystery (a la the Qabbalah) and that can serve you well. But also sitting there with a group of people praying in a Catholic convent, where they energy must be very calm and uplifting, can serve you very well during these difficult times. Doesn't mean you have to convert. You meditate while you are there, absorb that energy, thank G-d for it, and then pray that Hashem will show you the next steps you need to take to get your life going in another way that doesn't have to include homelessness in the roster.
I am a Gnostic Christian, going to an Eastern Orthodox Church, and I do not at all believe in proselytizing, we do not believe in that. But - smile kindly on the nuns, as their intentions are good, and as MaBenzi said, nod your head with affection,while turning an eagle-eye on the direction of the all-important lunch line so you can get first helpings of the goods! :)
Keep us posted on how you're doing, you are utmost in my prayers.
--sparker
Thanks, Everyone,
I realized the most important lesson this morning, forgiving myself.
I just received an awful phone call from La Dueña saying she would throw out my things. I made it clear that I had paid the rent for the month and paid her a total of $480 deposit. She owes me money.
She is a liar, a cheat, a thief, is trying to get SSI benefits to which she is not entitled, and enables the sexual abuse of her grand daughter and, most likely, her own daughter before. She is a monstrous excuse for a human being.
I know "they are only things," but I am not a Bhuddist Siado or Master and the letting go is very painful to me for more than the obvious reasons. I will accept, but it will take time. I have very bad PTSD and this situation has both literally and figuratively "hit me right where I live." It is real-life "déja vu all over again." The flash backs haven't been too bad, but I have to be really careful about letting my mind wander.
I must "keep the faith." These adversities only strengthen my resolve. I have to trust myself and Hashem that whatever happens, I will endure, and somehow be the better for it.
Sparker, the Sunday evening Vespers, which they allow us to attend, are truly amazing. There is no Father, only the Mother and the Sisters. She is not Mother Superior.
They light candles and burn real incense. It is Frankincense, myrrh, and something else, maybe sandal wood. And they bring out a special golden symbol from a locked compartment in back of the altar. It is the symbol you mentioned. A smaller one in front and the larger behind, a wheel within a wheel. There is an open space in the middle, in which they place an object that has its own case also stored in the safe. My jaw dropped when I saw it.
I have been drawing pictures with variations of this symbol with no conscious knowledge of what it was. I think the object they place inside may be the inner case of a reliquery because it is handled with such reverence.
They light six bright candles on the alter, not the usual two tapers at each end of the alter. This is the order of Mother, now Saint Theresa, so this is not shocking. They are amazingly egalitarian, saying there is only room for one mother and she is Mary. They offer special prayers to her.
They are the real deal, they practice what they preach. That I respect. As much as I loathe the institution of the Catholic Church and consider Thomas of Aquino to be a Psychopath (I owned and read his complete works), I have to respect these women and what they do.
I am waiting for a phone call from my ICM before I turn into a pumpkin. No calls inside the cloistered walls. I am amazingly calm after a very difficult day.
MaBenzi, would that I could. I can bat my eye lashes as well as any Southern Belle. I can no sooner hide my intellect than I could hide an elephant. I can remember not to volunteer any information and only answer when asked, but it takes a great conscious effort. Smart women are still reviled by many.
If my damaged brain still serves me, the limbic system is part of our "old animal brain." Remember the Medulla anyone?
Another thing, the Bhudda is venerated as a wise man, not worshiped as a god. Bhuddists are not Idolators. They are Pantheists as they see the life energy, G-d's light, in everything.
Thank you all. Your concern, kindness, encouragement, support, wisdom, and intellectual rigor mean much to me.
Lots of Love,
Devorah (Zealot)
Listen up Girl. Take no notice of any conversion offences by the Nun Mafia. Find your space in Society. The land of the free? EGAD!! I am catholic born. My daughter is convent school raised. She is as cynical as hell. Take what you need, do not, I repeat, do not offend Mother Superior. There is a reason she has that title. See, being agnostic has its benefits. People go beserk about their religions, take offence left, right and centre and you say ....whatever. And when they try and convert, say yes, yes, true but what time is lunch today? Then point them to someone else who will listen to the bs. Your beliefs are private and must be respected. The Orders are shrinking because woman can work today for themselves. Your problem is taking care of yourself not theology.
Aluta Continua
Take Care
I owe everyone an apology. I have started breakthrough seizures. I constantly fall asleep and have huge anxiety attacks. My heart wants to jump out of my throat...obviously not a good situation. Can only be made worse by.....the freaking medical profession with the damn pompous ass doctors and their bloody groupie underlings. FUN AND FREAKING DAMN GAMES. YE GODS! As an agnostic I beseech the freaking Gods everyday. Intelligent and knowledgeable my aunt fanny. I take my 12 son year old with. Doc is talking about the fact that he can go chop, chop in my hippocampus. Said son who is admittedly a bit too knowledgeble for his age (useless at sport,see) proceeds to question the viability. Doc is taken aback...admits kid has a point. ???WTF!
MRI peeps say I MUST sign a money payment document, no whatever for say I. I pay cash. Even upfront. They refuse to help me, I start calling my lawyer, they tell me to come back with lawyer. I throw a vloermoer. Hubby comes to the rescue. Suddenly they are all coy and yes and freaking accomadating. I start calling my lawyer and they back down and apologise...my lawyer is a shark with impeccable manners. I needed the MRI...or did I? Where is the care and respect. I don't know what the bitches said to hubby but he is not his normal caring self. My sons (12 and 18) are the best though.
Zealot, how are you coping?? My 18 year old son drives me wherever I need to be and my little Brain researches for me and they deal with everyone for me while my stupid hubby is upset over what I dont know.
Hi MaBenzi - no apologies necessary. It's very easy to misunderstand posts...and I'm sure it wouldn't have happened if we'd all been in the same room talking together. I'm really sorry you're having breakthrough seizures and pleased you have a good lawyer to fight your corner. I have wondered if you were Ok in the last few weeks and I'm glad you've come back to us and that you feel you can share your worries. Your son sounds great...I too have a very intelligent son who doesn't like sport - he's nine and a source of constant delight. Perhaps your husband has been swayed by the doctors and thinks they know best? In my experience when men are worried they sometimes act of character and can seem uncaring even though they're not. Perhaps I should qualify that comment - some men?
I've been experiencing bouts of heavy duty anxiety in recent months: it's linked to my recent difficulties. However, as there's a delay in changing my meds (they need to do some more research about the best options) I've been prescribed Lorazepam to take as and when needed, and it's really helping. Have they suggested anything that may help you? Thinking of you.
Lots of love, Victoria
Thanks Victoria. Yes Hubby has been swayed by the pompous asses. I am who I am unfortrunately. No, I lie it has taken me years but I am quite comfy with who I am and how I deal with the world. Idiots are not going to change me. They went beserk with the prescibing of new meds. Keppra is their drug of choice. Can afford to bladdy pay for it thats why.
The change in condition is a result of a difficulty I was thrown. Undeservadly, and without provocation I found myself two freaking meters from jail or losing my possessions. They read me as a woman with e and kids and therefore vulnerable. I am not done with everyone yet. After telling Pompous ass that he said no, it has no bearing.
Our children are our salvation. Also I am doing volunteer work with kids. Hopefully the next generation will have more brains. This generation of docs don't. Hippocrates is crying I am sure.
Take care and be happy.
And if webmaster Big Pappa is reading this I hope you are protecting us from the crazy cyberstalkers. My sons DO NOT want me on this site at all. But where else do I get halfway decent knowledge of my wretched condition?
Hi Everyone,
Life on the brain damaged, epileptic, crazy person, mental defective side of the street isn't so easy for any of us.
The State gave me Sun Pharmaceutical generic poisonous carcinogenic Oxcarbazepine again and I have been having szs several times a day. All sorts. Thank Hashem no TCs of which I am aware and only minor myoclonus. Some nasty migraine-like headaches, but they are part of the szs because they don't last very long.
I also won't be able to pay for my meds next month because the State won't pay for them, neither will my insurance because they haven't provided them with the necessary justification. They tell me I have to pay the "co pay.". In this case that will be 100% of the hideously expensive Provigil and the difference between the very expensive Novartis Trileptal and some cheap generic.
I cannot find a lawyer. None will represent a "Psycho." My tale of woes continues, but I have no desire to rehash the details. Bellevue had scheduled a Neuro consult, but somehow, it never happened. I can't get a Neuro, let alone some arrogant surgeon who gets paid to slice and dice.
I don't know what the laws are in other countries, but in the USA you have to give "Informed Consent" before someone can drill holes in your head. (If you are a Psycho, most legal protections are gone and all medical symptoms "are all in your head.")
I do have to say that being homeless sucks. I don't even know how to get mail. I didn't get to vote. The really good shrink is a Fellow and doesn't yet have a practice. I am being forced to play Dr. I am going to have to figure out how to get meds from overseas and I'll probably have to cross-titrate the Provigil with grey market Amineptine. I can get a six month supply for $1600, much cheaper than the Provigil. I still don't know how I will pay for my meds, rent, food, insurance, etc.
I keep all of you in my thoughts and my prayers. I wish all of you better times than I am having.
Lots of Love,
Devorah (Zealot)
P.S. Tadzio - You are right about the inverse correlation between treatment and Zip Code. I was only referring to this particular "Drop In" Shelter and the people in it.
I also just realized that I left my meds on "my" bureau this AM. I can't go up to my room until 6:00. It's going to be bad. Please pray or think good thoughts for me.
BTW, our web master and epi help are both women. They also have sz brains. They are on our side. There are a few sz bashers on this site, but they don't last too long. Please tell your sons that you are safe here. This one of the few places to find up to date, unbiased information and people who understand what you are going through.
Devorah/Zealot -
So sorry to hear that what you had previously been going thru continues...Being that you are homeless, do you still have some sort of access to your Teacher? That is so important to have your spiritual pivot point in the midst of all this chaos - the veritable eye in the midst of the storm. So glad to hear that so far you have not had any TC's.
What is that saying in the Dhammapada - something to the effect of "The foolish and low-minded embrace their own negligence - The wise guard vigilance as they would a great jewel" - Remain vigilant and fight like hell to get the treatment you deserve.
Please keep us posted as to how you are doing, you are in my prayers!
--sparker
MaBenzi-
A shark with impeccable manners - that is the best kind of lawyer to have, truly. The most important acronym at the end of a lawyer's name is not whether he's a licensed attorney or what-have-you, undoubtedly it would be the acronym "SOB" (or in Spanish, "HP"). So glad you have a shark/SOB who is looking after you!!
Hang in there
--sparker
He is very effective. A slimy, sneaky plot was hatched against me recently and I would have lost everything. I put him to work there. People backfooting and being overaccomadating left, right and centre. To crown it all he discovered a counterlitigation. Yes! And our laws can be so not in the little man. woman or child's favour at the moment. Repossessions of goods is the name of the game. Medical litigation is extremely hard to acomplish.
MaBenzi,
Welcome to our world. It's not so easy over here. Thank Hashem or the Fates or your own forethought that you have a good lawyer.
DO NOT ALLOW ANYONE TO GO NEAR YOUR HYPPOCAMPUS!!!! You will end up reliving the same day over and over again because you will no longer be able to commit anything from short term to long term memory. You will live a life of jamais vu it never it's not happening again. Like the American movie "Groundhog Day."
Theses Drs are idiots! You need (obviously) new docs who will figure out what changed and how to fix it. Unless the szs are life threatening, no cutting! The Hippocampus is a critical part of the brain. Meds should be tried first. They also need to study the szs to figure out where they start and how they propagate.
You need to have a talk with your husband. In the USA talking to him without your permission is not legal. Of course, it happens all of the time. He needs to tell you what they told him and how he feels about it. It is your life, not his, that is at stake. Please tell him that whatever they told him is not worth risking your marriage.
Zealot
Thank you. I feel right at home actually. Pompous ass is suppossed to be the best. Sugested reducing the meds and hospitalising me and then videoing me having seizures. Barbaric. You have got to be freaking kidding i said. The last time that happened I had status epilepticus. My Dad was furious and threatened them. Physically. I was in intensive care and unconscious for 2 days. Actually Hippocrates would be apalled at the idiocy that followed his breakthrough revelation, circa 400BC.
My hubby is in sooooo much trouble with me. I am furious. If he wants me to have an op I want a face-lift, a tummy tuck and a new beau with a six pack ab. Hubby is the last of my problems...I will find another.
Last bore: apparently my cerebellum is shrinking? Can I walk in a straight line to show me your balance. Too easy, I say give me something more difficult. No, it is adequate, says pompous ass For Pete's sake I was a ballerina! They just don't listen to us, do they? My sons (12 and 18) are pulling through for me.
Take care
Hey there,
As I am going through these replies in this discussion, I feel so awful. I know I haven't been keeping in touch but this husband yours sounds exactly as you describe him. Your sons are there for you and they are in your corner. I'll be praying for you that this complicated situation is solved and you have a good group of friends here to keep talking to and getting this all off your chest. The depth , wisdom and knowledge that all of you have and been blessed with I'm always just flat out impressed. I hope you can relax and get the anxiety levels down for you. My last EEG proved to me that I have stress induced seizures, and that is something that don't need to be happening here, keep calm. I see what you mean that an EEG video is something barbaric as it would seem to many. Being 2 days unconsious is deffinately pushing it you are right.
In 2005 I was monitored with invasive depth electrodes sunk into my head and backed off my meds. It was 3:00 in the morning, had a horrible seizure managing to get out my bed. The nurses and techs came running in and unplugged me from the monitor just in time and went running down the hallway. If it wasn't for crew of construction workers on the floor working that caught me and held me down. Then I was tied up and they gave something in my arm immediately that put me to sleep. If I didn't have that EEG done I would have never known that I had damage in my left temporalobe as they were studying mostly the right before my resection surgery. That test was scary but it was a necessity for me. I hope that you find a good doctor that you can trust and get to solving this problem. I'm sorry that thing are so rough for you right now.
I'll be praying for you, God Bless and take care,
Love , Johnny
Johnny, I was so happy to see your note - when I don't see an entry from each of you after a number of days, I get a lump in my throat, and the prayer index goes waaaaay up. Makes all the sense in the world that stress is making your seizures that much more prominent, that certainly has been my trigger in the past. What are you trying to do to keep the stress levels down - have you tried meditation or anything like that? Tai Chi is very relaxing and beautiful as well. I think also knowing you have friends who have "been there" and know what you're going thru helps as well.
Take good care of yourself.
--sparker
Sparker , I have been using a new drug that is a mood stabilizer used to treat Bi-polar manic depressants also used for many reasons. My neuro-psychiatist had talked me into trying called Seroquel and has helped wonderfully. It has also been used in Gov. clinical trials and studies to help people quit MJ. It has'nt given me any problems with seizures either and lets me get rest now. Lately on top of all that I just found a side of me spiritually that I'm in touch with again.
When I was getting a video EEG in the beginning of Oct. , my sister called me in my room. Her and me have been going through some times not getting along. She called me to how i was doing and started arguing over the phone and the EEG techs. they saw spikes on the monitor and I clicked the button (seizure alert) the nurses came in and witnessed it. My sister has her abrasive ways to rub me the wrong way. I was'nt abscent or unconcious , but i was lightheaded and dizzy. Nothing generalized into something severe, but enough for me to hang up the phone and drop the conversation we were having. Most importantly situations like that I put behind me, look ahead and forget about as much I can. Like I said the seroquel has helped me concentrate to avoid stress and just relax. Remembering that I have friends who have been there helps too.
Too everyone here, take care and god bless , Johnny : )
Johnny, so glad you are in touch with your spiritual side again. Truly you made my day. We need that ecstasy in the middle of the agony and stress, that's for sure. That is what ultimately sustains us.
Your comment about your sister parallels nicely with what Zealot was saying about giving up anger. Not letting people get to you, not allowing them even a milisecond of your energy and time if they are not a positive impact in your life. Life is too precious, and your life is all about finding yourself, healing yourself as best you can, and getting in touch with that higher energy that feeds you during the bumps and cracks in the road that we each endure. And of course, the lesson how stress does indeed produce seizure activity. You already knew that, but you had a machine hooked up to you to prove the point even further. The Seroquel sounds like a godsend, so glad you have found that to be a good medication.
Take care, blessings to you!
--sparker
Johnnie,
I'm so glad you're feeling better and learning your triggers. Seroquel users are divided into two camps: "Thank G-d for Seroquel" or "It's one of the worst meds I've ever taken." We are all different. I'm glad it is working for you. I think stress is a major trigger for all of us.
Piker,
Welcome. Ecstasy is a great experience. Be careful not to abuse your gift lest you pay heavily for it. Do not seek it out. It will come to you.
Everyone,
There was an evening and there was a morning, another day. I thank Him for it. I have been meditating and doing Tai Chi. It is a good way to use all of that ecstatic energy. I am using it to heal my wounded body as well as my spirit.
I think the emotional and physical stress are contributing to my more than daily seizures. That and the poisonous generic. Another obstacle to overcome.
I am letting go of my anger. It is poisonous. What's done is done. I cannot change it. All I can change is myself and how I respond to what life brings me.
May all of you find peace and tranquility in your lives.
Devorah (Zealot)
Sorry Johnny and I really dont mean to stress anyone out here. Stress is bad for anyone with a chronic medical condition. Which is what we have. Unfortunately, I am a bit of a drama queen as well and very ascerbic when frightened and terrified. The guys called me Acid Tongue at University. The law students gave me the nickname.
Your experience with the EEG was shocking. Glad you survived. The other problem is I am the worst patient ever. Can you imagine me in that situation.? I am a person with responsibilities and some respect. I hate the way it is taken away from me by the pompous asses and groupies when I go to hospital. I will be fine. They wont listen to the fact that I have lost my hunger instinct. I am never hungry, I eat by the clock or am reminded. Not good for seizure controll to not be adequately nourished, yes? They dont know enough as far as I am concerned to make any decision on invasive surgery in my case.
Take care of yourself and relax
God knows what! As a man who has necessarily, and by choice, made epileptic seizures a part of his life for the past 40 years, I can see how this philosophy just might have some weight. I mean, step back all ye folks (even doctors). Just how far have we come in determining what causes this neurological upset in our bodies and souls? Maybe it's there for a reason. Maybe someday we'll all be told why. And no, I'm not a southern preacher. But I know one thing that my dependable once-a-month seizure does for me. It gets me to re-evaluate my life as it is, as well as become very grateful for all I do have. I even begin once again to do something quite simple. I look about me on the street and begin to notice all of the humans with far more challenging physical walls than mine. No, I do not look forward to seizures, but I sure take them in stride. Or should I say "... in stride after I've gotten my bearings back!"
Hi George R,
My dependable once-a-month seizure clusters, which now lead to frequent secondary tonic-clonics, got me a lot of ribbing in adolescence, and early adulthood, for it being "that time of the month." I was wondering if the social joking with periodic seizures is very common. One theologian pronounced my ocassional priapic seizures during the clusters as the Father's curse, and I didn't know what the guy was talking in a rave about, until a couple decades later when I read the book "The Poisoned Embrace," by Lawrence Osborne, and the written 'scientific account' (anti-Semitic myth) of the male menses, recorded by Thomas de Cantimpre in the thirteenth century.
Tadzio
Tadzio,
Great to see you back. It's the same old story; why let the truth interfere with ignorance and bigotry?
We have a new post at the end of page 3. The only reason I found it is because I set up an RSS feed from this node. It is easy to do. I think this man is in trouble and contacted epi_help and the webmaster with the link.
http://my.epilepsy.com/node/985093#comment-1024033
I also set up bookmarks for pages 2 & 3 to make getting around easier.
Johnny, are you OK? We haven't heard from you in a while.
I also made a mistake about a med even though I had my pharm book open on my lap. It is amantadine (Symmetrel). It is used to treat Parkinsons and Influenza Type A on label and off label for depression. There is a slight seizure risk, but consider the population. For me it's going to be Plan B or C because I won't be able to pay for my meds. I'm even thinking about L-dopa or getting grey-market tianeptine. I still need a shrink and a neur because NYS is only making me sicker.
I really hope I haven't offended anyone. I felt really hurt by what felt like personal attacks. I did not flag the latest comments; I don't know who did. I have taken my own advice (and that of others) and will not respond.
Right now I am over emotional from the seizures that I've been having (or not according to the witch docs who refuse to do any meaningful tests [$$$]) and depressed as h (hypothyroid) and totally traumatized by abuse by NYS (the clinic).
Then I found that post I mentioned. Nothing like a good reality check, just like George said. Rick could be dying alone. I am neither. Kinda' hard to feel sorry for myself now.
Please take good care of yourselves. Please don't tempt fate by trying to induce seizures. Once you're kindled, you're going to have to figure out how to make them stop. It is a constant battle. The feeling of control is illusary. I can't even figure out, "Is it real or is it Memorex?" any more.
Muddled and Befuddled,
Zealot
George,
What you say is very interesting. I have been having these experiences for as long as I can remember.
My first ecstatic memory is from less than one year of age. It was one of those perfect late spring, early summer days when the sun is warm ,and the air is cool, and the sky an incredible shade of inky blue.
My mothered had wheeled me in my carriage (pram) to a park right on the Hudson River with a spectacular view of the Palisades. I remember sitting up in my carriage, clad in little more than my diaper, craning my neck to take in the entire view.
Then it happened. That awe and wonderment. The rapturous appreciation of the beauty of that moment. It is a wonderful memory, one that will never leave me unless it gets fried out of my brain.
I don't know why I have been given this gift. For me, the price has been heavy and brain damage increasingly severe, not so much from the condition itself, but from medical care that has ranged from negligent to criminal.
We don't know much about the brain, let alone epilepsy. The more I read, the more I find is what epilepsy is not. A bunch of self-contradictory hooey.
We can accept what is or we can make ourselves miserable by fighting it. It's like the first law of Thermodynamics, "What is, is.". And we all know, you can't fight the Laws of Physics.
May you recover your bearings as quickly as possible so you may continue on your journey into the unknown.
Zealot
I am always interested to see that others have these experiences. I have had many TLE's since I was diagnosed 2.5 yrs ago - and definitely they are what I would call ecstatic, beautiful, totally apart from this world. Only a few of them have turned into full-blown tonic clonics - it has taken all the will I have to "push away" the tonic clonic when it tries to take over. So the only "danger" feeling I have is just that fear that the TLE may start morphing into a tonic clonic, especially when the TLE's occur at work. I cannot make the TLE happen, it happens when and where it wants. It may stop for 4 or 5 weeks, and then start up mysteriously and happen many times each day for days on end. MY TLE's are considered to be cataminial, but the cycle of TLE's don't always correspond at the same times as my periods. So... not sure why that is.
I believe that at some point in the future, and it probably will be the far, far future, we may discover that TLE's may actually be a physical effect of a higher cause, and at times a physical cause producing a higher effect. And that both sides are very real. If any of you who have TLE's have a history of meditation and spiritual pursuits, as I do for many years, perhaps you have had the same sense of this.
My greatest respects and prayers to all of you - take care.
Hi Sparker,
I've been mulling over your post and the responses for a while....
Ecstatic seizures...the physical effect of a higher cause? Well my rational mind says no...but during the seizures there is an overwhelming sense of a higher "force" or "cause". Afterwards the rational mind takes over and labels it...seizure, abnormal and my anguished self plummets into darkness. I hate it. I find myself changing as a person, becoming detached, remote, isolated. I crave solitude; I crave the meditative state (having had no interest in such pursuits previously); I crave the seizures. Now, I can sit for hours on a cliff top staring out to sea, mesmerised by the beauty of the universe, waiting for the ecstatic seizures and they occur frequently. Sometimes I feel totally calm and at peace during and after as the experience lingers, but then something terrible and immensely sad descends and covers me like a shroud. I struggle to make sense of my experience.
I think if it continued, eventually I would be driven mad by my personal mix of ecstatic seizures, suicidal impulses/depression. But perhaps it does make sense in a weird way - death being the ultimate merging with the cosmos.
I'm off to see two neuros this week so they can sort me out (lol). This time Tadzio, I do mean laugh out loud!
I wanted to say to everyone, I was worried when I posed my original question - about offending people who do believe in God and percieve the experiences differently; about not being taken seriously or being left in splendid isolation. However, I'm glad I did as everyone's contributions are helping me through a very confusing period of my life so thanks to all. I have lots more to say on the death, epilepsy and fear triangle but will save that for another post.
Lots of love,
Victoria
Victoria, I am thrilled that you posted your original post. Look at the responses!! There are people who definitely understand how you feel. As I have reiterated - I don't know if it is a physical cause producing a spiritual effect, a spiritual cause producing a physical effect. But unless a neuro has gone thru this himself/herself and has walked (floated? lol) a mile in our shoes, s/he won't understand and won't even try.
I am deeply involved in my Church - very deeply. There are Churches that embrace those things beyond the physical and fully acknowledge them. I attend a Gnostic Church, and I have also been meditating since I was in my early 20's (i.e. 20 years ago). You can also read of leaders in other religions who passed thru amazing phases during their spiritual awakening - the devotional Hindu leader from the late 19th century, Ramakrishna, was famous in his earlier years for having very strange and profound experiences of a spiritual nature, and his body suffered from the "voltage" he received from his awakening. In his case, I'd say it was probably 100% spiritual cause in his case. Plug a 440-volt source of energy into a 110-volt outlet, and the outlet will be fried. Seem familiar? :)
There are many views in spiritual literature that the real, true, full life is beyond this physical life, and that this physical life is only transitory in order to "reap what we have sown" (i.e. karma), but that the full life is beyond this body. Hindu literature, Buddhist literature, even Gnostic Christian literature. So we are getting a taste of what is beyond this physical life, at times in small sips (TLE), at other times like a fire hydrant in our open mouths (tonic clonic!) I think that is why we crave the TLE's to happen again. It literally is a gift from beyond, and I think we *know* it is something special, for that reason we long for it. It's a touch of the miraculous.
Dont let the depression/suicidal thoughts pull you down. There is a universal law of rhythm, in which one extreme swing of the pendulum in one direction will then lead to an opposite swing. That to me is where meditation is so crucial - to find that calm, that middle point. Being happy to the point of jumping up and down like a loon is about as useless as being deeply, profoundly depressed. The extremes touch each other at that point because nothing can be achieved in either extreme state. But being at that lovely midpoint of peace, of floating in an ocean of something so lovely and seemingly endless in it's beauty - call it God, call it The Absolute, call it Love (to me it's all 3, as God=The Absolute=Love)- that is the goal to me. If I didn't meditate, I don't know where I would be...truly. Remember, there is no light without shadow. The brighter the light, the darker the shadow lurking nearby. But is it worth it to take the chance to advance more and more and be a part of that light, even if the shadow hisses at you from time to time? Oh my goodness, yes!
Express yourself! We all do, right? And I am a newbie to this thread. I may have offended many people with my post, I certainly hope not...
PS - I had my last round of TLE's up until last Monday, I think I had them daily for 3 weeks straight up until then... none since then... *sigh*. Only those of us who go thru this can understand such a reaction. A friend of mine who is not epileptic said the other day, in amazement, "I never thought I would hear of anyone wanting a seizure to come!!" And not judgmentally at all, she meant it with tremendous wonder and in a very positive manner. I had auras all day, but didn't hear the telltale "voice" saying the telltale "phrase" that I always hear. So I guess the aura may be the TLE (mini-TLE!), but to me it's not the full blown TLE without the "voice"/"phrase". Whatever right?? LOL I'll shut up now. ;)
Victoria,
I have been thinking about your last several posts on this topic. To me, it appears your struggle is to find meaning. I was able to find meaning long before I found Hashem (G-d).
There is nothing wrong with solitude; in fact, there is much to recommend it. When I have had the opportunity, I have spent hours lying on my back in a woodsy meadow, feeling the grass beneath me, listening to the birds and the bugs, and the wind rustling through distant trees; by the sea smelling the cool, damp, salt air, feeling the sting of it on my skin and the taste of it on my tongue, with the sound of the surf providing the loveliest of rhythmic accompaniments...I am waxing rhapsodic as I relive these experiences.
There doesn't have to be a meaning for any of this, at least in human terms. You exist; therefore, you are part of this universe. Like a star. Like a speck of cosmic dust. By definition, because the universe is defined as all that exists.
I know that ecstasy can be a rough ride. Especially the letdown. Crash landing. I've gone down in flames, what I call my "crash and burn" or my "flame out." Kind of like a meteorite when its fiery flight is abruptly terminated at the moment of impact.
The trick is finding meaning in the rest if it. Surround yourself with beauty. If you can, plant a garden. Put beautiful vases of flowers in each room. I couldn't afford the real thing very often so I slowly put together lovely bouquets of silk ones hunted down wherever I could find high quality at a low price.
Find the beauty wherever you can. I look like a tourist in my native city because I walk craning my neck to appreciate the beauty of buildings that wear their adornments like a King wears a crown. Find the living things. I cannot tell you the pleasure I got from hearing one cricket in one tree. I went out of my way to hear him every evening.
Do little things. Smile at a child if you make eye contact. I know you Brits tend to be stiff upper lip and all, but we Yanks are not as demonstrative as legend has it. Smile at an adult. They may give you that why the h--l are you smiling at me look, but when they look down or away, they will always look back to double check. Smile. Most people will give you a smile in return. Now two people will have a better day. That is meaningful.
In fact, just smiling is good for you. If you smile, you will feel better. There are feedback loops. If you can't muster a whole smile, try a "half smile.". Think Mona Lisa. It works. It usually turns into a whole one.
Please stop labeling your ecstatic state as pathological. The state is not pathological; the cause of it may be. You can't even be sure of that. These states can be achieved via other means.
STOP JUDGING YOURSELF. You have epilepsy. That sucks. A big one. Rational mind does not judge! You are judging yourself harshly because you have a disease. Would you do that to someone else? I think not. So please, don't do it to yourself.
This sort of illogic is propagated ny docs who have set themselves up as priests. Without their ministrations, you are damned. They tell you that you are a sick person. You are not a sick person. You are a healthy person who has become ill. They attach you to your illness in the same manner in which first Augustine of Hippo and then Thomas of Aquino attached humanity to Original Sin.
Don't let them do this to you.
Enjoy the ecstasy. There's nothing wrong with feeling good. Everything is not lost (ha ha Augustine).
Aim for a soft landing. You can get better at it. Every day existence is neither meaningless, nor "hum drum," nor drab. You just have to work a little harder to find beauty when in a "normal" state. It's even there when you feel so overwhelmed that you feel like offing yourself.
Make yourself a mantra. What ever you need to keep yourself going. For awhile, mine was, "Even a sea slug has the right to exist." I don't need it anymore. I've said it so many times now that I believe it. It has become part of me.
Cliche: Stop and smell the roses. Get the most out of each moment because the moment is really all we ever have. Even when we've fallen from the frying pan into the fire, there's something still to be had. Life. That's a big thing.
What happens after we leave this corporeal existence? No one knows for certain. You only get a one way ticket. Enjoy what you have while you have it.
By most people's standards, my life is pretty bad right now. But I'm alive. I have food and clean water. I have a safe place to sleep. There's a whole lot of people in this world who don't.
I hope some of this helps. I've been where you are. Its extremely difficult. I can be ecstatic and sobbing with grief at the same time. Overload. Maybe that's the price we pay for using more than the proverbial 10% of our brains.
Relax and enjoy the journey. The wide smooth paths as well as the narrow rocky precipices. There is beauty in all of them.
Lots of love,
Zealot
Zealot - you're wise and you're right: I'm desperate to make sense of the experience, to find meaning, to understand... and I can't so I'm incredibly frustrated and pissed off. And do I judge myself harshly? Again you're spot on: I do but I didn't think it was obvious to anyone else. I suppose it all stems back to control, and the fact I hate not being in control as it makes me feel weak and vulnerable. I can see this is problematic for someone with seizures! I've had this mad idea for many years that I should be able to make the epilepsy go away - mind over matter and so on and so forth. How absurd is that? I'm laughing as I'm typing. (Help, I need to see a shrink!)
I will try and follow your advice and aim for the soft landing. I am deeply appreciative of lots of things in my life - but I think the ecstatic episodes have thrown me totally off balance, into meltdown and you're right I do need to chill. Sea slug mantra? Now that's pretty unique by anyone's standards, but again, it made me smile that you chose a sea slug...
Thank you.
Victoria
Victoria,
Your smile made me smile. Thanks. I really needed it.
The issue of control is a big one. I had to be at death's door to realize that sometimes there is much more strength in letting go. Our attachments make us weak. The struggle to maintain the illusion of control and a façade of invulnerability saps our strength making us less in control and increasing our vulnerability.
This is a Bhuddist concept. Since Bhuddism is an atheistic (or pantheistic) religion (or philosophy) and the Bhudda is venerated, not worshipped, you shouldn't have a problem with this. If you can find some "real" Bhuddists with whom you can study (not "Bhuddism Lite" for Westerners), give it a go.
The same goes for the books. There are some really good ones amongst all the trash. One of the best is a beautiful little book written and illustrated by a Russian man for his son. I can't think of the name (TC amnesia).
I am having a huge issue of control. Something that isn't my problem so I can't fix it. Unfortunately, it involves a three year old, whom I love dearly, who is being badly abused by a family who do not love him and actually do not even have legally established custodial rights.
I rent a room from these people so there is no way I can avoid seeing or hearing the evil. Unfortunately, I have already spoken and risk losing my shelter. It is too painful to describe. How do I let go of my attachment to this child? How do I sit by and watch every law of human decency (and for me, the laws of Hashem/Elohim) be violated?
I have to make myself understand that my interference may actually be making his life more difficult. I think I need to seek counsel from one of the wisest men I have ever met, a Theravada Bhuddist Siado (I don't know how to spell it, it is a Burmese word that means Venerable).
Sitting and being powerless to stop the train wreck is making me sick. These people know they have something to hide. I cannot look them in the eye. I have hardly eaten because I have to go to the kitchen to cook. I will make myself sick, which I cannot afford. How can I let this go? I have to, for both my sake and the child's.
All I can do is pray, trust that He will do what is right, and seek the counsel of those wiser and/or more objective than I.
It is a mighty struggle. You don't pray, so please think good thoughts for me. I don't think that they are all that different.
Go with grace,
Zealot
Hi Zealot
The 3 year old you're worried about - sounds dreadful and yes, it's an awful situation as you're in a precarious position. I assume you have the American equivalent of Social Services and you've contacted them? Why is your concern making his situation worse? As they're mistreating the child, surely you're right to "interfere". Obviously I don't know the details but my instinct would be to keep raising your concerns or ask others who may be aware of the situation, but not in the middle of it, to do so. I know it's easy for me to say this, but perhaps you're where you are, precisely because you are the type of person who won't stand by and let a 3 year suffer at the hands of cruel and callous "carers". Please tell me to butt out if I'm misreading the situation. You do have my good thoughts (lots of them) and the child too.
Victoria
Victoria,
The situation is complicated. There is a birth mother out there, somewhere. I doubt the father's name is on the birth certificate.
He lives with his father (who does love him), his grand parents (if they love the boy they have a strange way of showing it), his aunt who is extremely irresponsible, and his aunt's daughter who is cared for by the grand parents.
All this in an apartment with four bedrooms, of which two are rented out.
If I hear the words, "¡Dásele pa-pau!" one more time... Translated from the Dominican-American it means, "Give him ___________!" (insert preferred mode of administration of corporal punishment). The last that I saw in time to prevent! was the boy being told to remove his pants and his underpants and a leather belt with studs (rivet side out, thank Hashem). The boys father is loathe to do it, but his parents and grandfather keep pressuring him to do it.
The boys father, I'm sure, has not legally adopted the boy or legally established paternity with DNA tests. These people "fly under the radar." There is a sense of proprietary ownership of male children.
The boy keeps begging his grandmother "!No me golpe!" (Please don't hit me!") The poor boy told me that he was in pain because his father left him. I had to explain that his father went to work and would return later.
His step mother, the only mother he has ever known, just left because she had to protect herself and her own son. She would have taken both boys, but she knows she can't. So the poor boy lost his dearly beloved brother, too.
Child Protective Services are pretty bad here. It's a tough call, which is worse than the other. I've been in contact with my best friend who used to be a Social Worker and she is contacting people she knows. She's going to be upset with me if I don't call the Siado. No one can better advise me than he.
This has more to do with trauma brain than seizure brain, but there is a close connection. I'll have to hunt down the paper again, but epileptiform activity has been observed in during dissociative episodes. It is also known that flash backs are kindled in the same way as seizures. The VA published a study showing that low dose gabapentin was useful in preventing flash backs (the flip side of déja vu).
And it's all TL. Hmmmmmm...
I'm in tears as I write this. I've spoken with the boy's father, which helped, but he is weak and being pressured by his family. I spoke to grandma today and told her that all I wanted was to see everyone happy and I tried to explain his behavior and begged her to be patient with him.
They fight about him constantly. He hears this. If he gets a little toy as a gift, she takes it from him. This is way too close to what I went through as a child, so it's killing me. Plus she doesn't want anyone to eat Russian caramel. I have a Russian last name. This is just insulting!
How did I make his life more difficult? I told them the child was so frightened that he was hiding. What did they do? They found him hiding in the bathroom, so they started locking it. Nice, huh?
Your take on the situation is correct. I can't make myself homeless. I can't just do nothing. But I do have to detach. It's not my problem. I am allowing it to become a problem for myself. BUT I CAN'T FIX IT BECAUSE IT'S NOT MY PROBLEM!!!
You are quite right about one thing. My life would not be the sorry pickle it has become if I simply looked the other way. And yes. Maybe I'm here because there's a little boy who needs help. Ironically, I got the room because within minutes of my arrival, there were children on all sides, tugging at my skirts and talking to me. Latina women don't like to rent to "husband stealing home wreckers."
My Hebrew name is Devorah. She was both a prophet and a warrior. I just don't want to end up like Jeanne D'Arc.
Thanks for your good thoughts and encouraging words.
Lots of love :-),
Devorah
P.S. Now you can see why I chose Zealot.
Devorah is a wonderful name.
My goodness, Zealot, how agonizing to have to experience that, knowing the awful suffering going on... and then questioning what is your dharma in the situation, how far do you need to go in taking any more action, what are the potential repercussions.
In the midst of darkness, sometimes there is a glimmer of light that can emerge and flower into a full radiance. So in the midst of your darkness, I wanted to mention that after reading your posts, and knowing your belief in G-d, have you ever studied Qabbalah? That to me is the most profound of all the spiritual teachings I have come across. And I don't mean Madonna - style Qabbalah (the singer Madonna, not the Virgin!! lol) In all seriousness. There are so many beautiful, beautiful nuances in all of the world's religions, at the core of their teachings - sometimes the core of the teachings get muddied over time by well meaning purveyors of the original teachings over time. But none compares in terms of depth and breadth and immensity as Qabbalah. I think every peeling back of a layer brings you into a new, higher dimension of learning. My brain (down here and "up there") can only capture so much of it, I catch more about it thru intuition than pure reason. Are you also aware that in ancient times, one of the ways for teachers of The Way hid many, many Qabbalistic symbols in, of all things, the Tarot? The Marseilles Tarot has a great deal of Qabbalistic symbolism.
I will pray for that poor, poor child. I am not there listening, but I feel your agony. However, in the midst of that pain, I wanted to send you a lasso of Light, of sorts... :)
Be well. (PS the name Devorah is lovely, but so is Zealot!)
-- sparker
Victoria and Sparker,
Thanks for the good thoughts and prayers. The story is still unfolding. Mami and the little one are back in the house temporarily and Papi seems to be "stepping up to the plate." I think I heard him loudly announce, "¡Me mueve!" (I'm moving!) All I can do is pray (and quietly say a few things to the right people).
I had a very strange experience last night. I am going to have to be careful because as amazing as it was, I don't want a repeat.
I use a lot of essential oils for medicinal purposes, insect repellents, insecticides, personal hygiene, antimicrobials, etc., etc. You get the picture. You really have to know what you're doing because they are potent and not just "ooh, this one smells nice."
I was out grocery shopping and I was due for my meds (Q8 schedule). I needed more essential oils so I did a little "sniffing around." I usually don't because they're too strong to smell so you have to dilute them first. I saw some oil of wintergreen, which along with oil of clove, used to be sold in supermarkets for tooth and gum pain. I was curious because of my childhood memories and the fact that I used to love Wint-O-Green Lifesavers. So I opened the tester and waved it under my nose and took a small whiff...
...and all Hell broke loose. Everything just went kind of whooz-z-z-zh... I smartened up and thought, "Whoa--what the hell just happened? Then I wolfed down my meds. It was a "little nasty" CP, but I made it home with about 40 Lbs of groceries, so I thought I was OK.
It had been a very difficult day and I was quite over wrought. I checked out my RSS feed and saw that there were several new posts. I wanted to reply, so I went to the site and was reading through the posts. Then I reread one of mine. The ultimate (literally) ecstatic experience and I lit up with at least 4400 volts.
I felt like a human torch with the energy flowing from the earth through all of the Chakras and up to the heavens. I didn't want it to stop. Then my right side started to shake. I knew I had to stop, but how?
Tai Chi! So I took my hands and started changing the energy flow. I took my hands and gathered a beautiful ball of golden, almost pure white light from just over my head. I was lying down so I just started moving the energy down over my body. I could feel the intense heat as I started bringing it back down over each Chakra. It was getting more and more intense because the energy was still flowing up from the earth and was meeting itself as I pushed it back down like when a flow tide meets the ocean bound current in a swiftly flowing river. I lingered over my heart and kept moving it down until I got to the bottom Chakra where the energy was entering my body.
Then........KABOOM! It happened! The "spiritual orgasm" turned into a physical orgasm of incredible intensity. I couldn't make it stop. I was lying on my bed, fully clothed, had not touched any part of my body with my hands and what the hay? I actually had to touch my body to push the energy out of myself. Then it subsided.
I have never heard of anything like this before, but I do know that to those who practice Red Kundalini or the not quite pure White Kundalini, achieving orgasm is a desired objective. In White Kundalini anything overtly sexual is to be avoided.
Just writing this has got some energy flowing, but fortunately it's a pleasantly warm (well maybe a little hot) 220. It's more than 110, but I have it under control.
This is why I am afraid to meditate. I start feeling that electricity and I open the circuit or flip the breaker, whatever it takes. As great as it feels, this girl really doesn't want to fry.
Sparker, you mentioned a voice. Just make sure you don't ever mention it to a stink. Oops, I meant shrink. I'm really curious, because I have lots of voices, but right now we're not yelling at each other and we have other ways to communicate. So it's been nice and quiet. I'm not nuts; I have DID (MPD to those not in the US). I'm going to have to start paying attention to see if it gets noisier during a sz, but I'm so used to the noise that I only notice it if there is an abrupt change.
These voices arise from dissociative processes and that's the TL special. I wonder how many Post Ictal "Psychoses" have to do with something like this.
Take care everyone.
Lots of love,
Zealot
Zealot - I sure hope that guy moves out finally. What a nightmare. For the boy of course, the mom (I would imagine) and you as well.
I would say the only danger with the experience you had (the spiritual morphing into the physical) is not that it is "bad", since it is something natural cretainly. But that it can also indicate possibly that the energy flowing upward (kundalini - ida/pingala/ sushumna) may be tempted to move downward instead. Which can only present physical effects that are un-pleasant (unlike yours - ha!), but actually painful and even physically dangerous. I would have to say that as someone who has had both types of 'explosions', to me the spiritual ones are more powerful than the physical. Because the physical is grounded, heavy - voluptuously ecstatic in a heady sense. But the spiritual ones are limitless because they merge with something that is not limited (and by limited I mean not physical). Again - not bad, but limited. And not a judgment on you at all, please know that. I just wouldn't want any ounce of your Path to be diverged in a tangent that is not going up and up and up. If that makes sense. Be very VERY VEEEEERY careful with Kundalini. It is like latent nuclear energy stored in that chakra, and needs to be handled with the utmost care, otherwise you could set off a reaction that could have difficula and very delicate consequences. Hopefully you have someone guiding you, someone who has "been there", who is assisting you with that. From my own experience, if you do feel energy releasing from the base chakra, it's always best to go upward with it. In fact, best probably to focus on the heart chakra upward. In fact, I would humbly suggest that if you feel that energy in your crown chakra (Kether) again, the beautiful mirror to that kingly chakra is the heart (Tiphareth) - G-d is Love, so what better place to take that illumined energy and have it shine in both places? Right? :)
The voice thing during my CP's is peculiar. It actually started back in '04, long before I had my first tonic clonic (which was in '07). My beloved Teacher suddenly fell ill, and I think the shock of that, the utter shock of that possibility, did something to my inner being. That is all I can figure, because there was no head injury, no change in the hormones I take (bc pills). It's the same phrase every time, and is in a dialect I have never heard before, if it means something. It is something phonetic like"Aldis aldisplis hausless walling..." and keeps going in other syllables that I can never quite recall. When it happens, I can say it out loud. But later I don't remembre it all that well. It is about 10 or 12 syllables long, and when I start to hear it, EVERYTHING becomes that phrase. If someone is saying to me, "Hey, would ya like to go out and get some dinner?" I hear the phrase as if it was coming out of their mouths, like they are saying, "Alsi aldispllis hausless walling?". If I am talking at that moment, whatever I was saying becomes that phrase to my hearing - i.e. if I was saying, "Boy there is a great movie that just got released at the theater..." suddenly I hear coming out of my mouth, "Aldis aldispllis hausless walling." But I am not saying it, and they arenot saying it, it just seems like I am (or they are). If there is a jackhammer outside pounding the pavement, I hear the phrase in the rat-a-tat-tat of the jackhammer, which is so bizarre. It is really a fascinating thing. Imagine me at work, in midsentence talking business, and suddenly this CP starts. I have to keep talking, hoping to G-d that I am still making sense, because I cannot hear nor think of what I was actually saying, because that phrase usurps and overrides *everything*. My neuro told me that if the phrase changed, that is when he would send me to a psychiatrist (if the phrase gave me winning lotto numbers I bet he'd change his mind, LOL).
Regarding your close call - I often feel that these CP's are like teetering on the edge of a precipice, but learning how not to fall off the cliff entirely. It's a tightrope. Utterly on the edge of danger, but also on the edge of something beyond and ethereally beautiful. And worth teeting on the rope!
I better run, gotta go run an errand. I hope you and Victoria are well.
--sparker
Sparker,
Papi has moved, but he can't take the boy. He comes to visit every day after work, but then leaves to be with his pregnant wife and younger son.
He was almost going to stay when I told him what was going on, but I advised him against it. I know that sounds strange, but if he stays here, his family here will suck the life out of him. I told him there are a lot of lives at risk here and the stakes are very high. I told him has to think of himself first because if he goes down, so will his whole family. Basically, it's damned if you do and damned if you don't. He can't stay here and neither can the boy. He needs to find a safe place for the boy until he can take him.
He came back this evening. He looks very unhappy. He is holed up in his room, not doing much of anything. I hope he hasn't come back, because he is the family scapegoat of his generation; therefore, so is his family, because they are of him.
It gets worse. I can't even tell the rest except that his absolutely selfish and irresponsible sister came home late drunk as a skunk last week and had a man with her. She staggers in rather noisily. Once awoken, I got up to go to the loo. I heard the unmistakable sounds of sex emanating from the living room where she has been sleeping with her 11 year old daughter. I sure hope the girl wasn't there. Now I know where her hypersexualized behaviors are coming from. She's gone from an A student to ditching school and cussing like a sailor. It is painful to watch.
La Dueña never says anything quietly. She is a screaming harridan. She also never says anything directly to me. She screams her complaints to someone else at the top of her lungs. I can't stand it. This is what I grew up with. The _itch is so much like my mother it is frightening. TRAUMA BRAIN, HERE WE COME!!!
The reason I moved the energy back down was to push it out of my body. I couldn't let it keep flowing because I was starting to fry. I used Tai Chi because in Tai Chi you control and reverse the flow of the energy, even passing it from person to person or concentrating it in the center of a group of people. 4400 volts is way to hot to handle.
I had to short the circuit because I couldn't find the off switch and it didn't seem to matter that I'd blown every fuse. The "base" chakra is what it is. The energy will not flow if there is a blocked chakra. It doesn't matter if the flow is top down or bottom up. 4400 volts is way to much. This flow started as a CP. It's not like I'd tried to induce one.
I am going to see the Siado on Sunday. I told him that I am having trouble meditating because I light up like a human torch even though I don't want to. I need to meditate. It used to keep me calm and grounded. I also told him that I need his counsel about my "home" situation. I wanted to walk out and never come back this evening. I have no place to go.
Do not let your neuro mention you and shrink in the same sentence. If the voice changes, so what!? Maybe the szs are different. I know exactly what you mean about the voice almost becoming the sz. I've had szs like that. I always assumed that it was a voice on the PA or music playing and it felt like it was "controlling" the sz.
I even remember when I was little and had a very high fever, I would hear this story on the radio about a picnic on the grass with a red-checked oil cloth and the ants would come and crawl all over everything and start biting us and all of the sudden we were in the middle of a concrete highway and a Mac truck was barreling down the highway and we would get run over and the concrete would crumble and there was this weird crumbling noise and my stomach felt like it was crumbling and I had this weird taste in my mouth and then I would pass out.
Where was my mom?
Back to the weird sz. I stay away from any meditative techniques that are designed to produce dissociative states. Btw, that's what your "voice" is. CP = altered consciousness. NOT PSYCHOSIS!!! In fact, szs are a rule out. To bad these neuro(tic)s and stinks don't know word one about a proper differential dx. Just make sure you do. You are epileptic, not psychotic. I would discus(s/t) this with her/him and if you don't like what you hear, CHANGE DOCTORS!!!
Sometimes it feels like I get the ecstasy without a sz. I know the first time I moved my Kundalini from the earth up through the lotus blossom and merged with the universe, I was not seizing. Or so I thought. It sure didn't feel like it. It was a state I had induced by doing an exercise designed for that purpose. It was a complete surprise to me because I had no idea what it was. All I knew was it must have been special because the guy who led the exercise was mad and wouldn't tell me what it was. So I found out. Maybe the ecstasy without the sz is like the aura without the migraine. I used to get those, too.
This is way too much for me. Victoria, I hope you're feeling better about the "real" world. It's tough to stay grounded when your head is way over the rainbow.
Best of the best to all of my fellow "diehards.". Hope all is going well and look forward to hearing from you soon.
Lots of love,
Zealot, Devorah, et alia
Hey Zealot-
I know without any doubt that my "voice" is not psychosis. I have heard voices for years (not a lot) but when I did, they always forewarned me of things, and they came true. So what a "stink" (as you so humorously term it) says is psychosis, I call divine guidance. My neuro supplies me with my meds, and anything beyond that to me is "blah blah blah" because he doesn't understand the other aspects of what I (we) are going thru. Don't get me wrong, he is a wonderful, wonderful man, a kind man. But someone either gets/ understands this or they don't.
I am glad to hear you are studying with a Siado. When we are dealing with these finer (and potentially dangerous) energies, guidance is truly a necessity (as well as a blessing). As my Teacher has so wisely put it, you can use a knife to cut bread and feed someone, or you can kill with it. So the energy can be illuminating, or it can devastating. And with the guidance of a Teacher, a real Teacher, you can be sure that your path is set (provided you do your Work on your end, of course!)
Has anyone in this group ever thought of having a Facebook Group? Perhaps calling it "Ecstatic TLE CP's" or something - where we can post how we are, post quotes from spiritual sources and/or epileptic info, etc? Not necessarily away from this site, but in addition to this site. Perhaps there are some more personal bits of info that we might want to share that we wouldn't want everyone and their Mum to see, or if we wanted to exchange email addresses or pictures what have you... what do you think?? I'd be happy to start the group. Let me know what you think...
I STARTED THE FACEBOOK GROUP!!
The Facebook Group is called "Ecstatic TLE CP's"
Let me know if you want to join. If you aren't on Facebook yet, it's super easy to join and free (I sound like an infomercial LOL)
It's the type of Facebook group where people ask to join, and then the admin (me just because I started the group) let's 'em in. So once you ask you to join, I'll let you in to the madness/otherwordliness/and other "esses" :o}
Hi Sparker,
Not a huge fan of facebook - I had an account which I used for all of two weeks or so...but who knows? How do you access the group? Has everyone migrated there already?
Victoria
Hey Everyone,
How's everyone been doing? I know you probably been wondering if I am OK, I have'nt had to much to complain about.That last spell was only 4 weeks ago and was a scary cluster of seizures...being status seizures and swallowing a whole pint of my blood. I've been getting plenty of sleep lately, since the seroquel got an increase. On top of that the Vimpat helps me get some rest now and those two meds combined compensate for the habit that I quit. As far as the seizures go ...they have not been an issue too much lately. Well I still have, which will never come to an end, is my simple-partials. They still continue on a daily basis and since my last stay in Video EEG those have got much more intense. As long as I stay conscious when they happen, will always remind me of a visit to the dentist with novicane and laughing gas. I'll tell you what... the Vimpat is a powerful medication, it takes 6 weeks to get to the full dose the Dr. will have for me. About 1 hour after I take it my head is spinning! That's after my morning dose and especially after my night dose. There is not much to do but sit down because I get sooo intoxicated, I don't think it's wise to be on my feet. I still have to 2 more weeks of increases until I reach the full dose.
For the first time in 22 years , I have'nt been smoking the MJ. I thought it would be real tough but the seroquel and me having a bad memory probably contributed to the quitting and made it much easier for me too. I threw out everything in my reach that had to do with MJ and called alot of people that helped me get it....just told myself , it was time give it up. I'm no hippocrate though to people who need it or those who just flat out enjoy it either. It has been 1 month since I used it last and don't feel the need for it. So far so GOOD for Johnny!!! I have been curious to see how everything has been with all of you...but lost in a recovery period that I needed to take. Full of information that I try to help others with as much as I can , lifting spirits of others as well as mine too. Facebook is something I've never signed up to and I don't know when and if I ever will.
Everyone take care, let me know how things are going.
Johnny
Johnny that is awesome that you are not smoking MJ for so long - congratulations! At the very least to see how you feel without it, And also to prove to yourself that you can stop it, if you feel that is the best thing for you. You needed that recovery time, obviously, glad you took it. I was worried about you, so glad you are well.
Take care! --sparker
Hi Johnny - yes I was wondering how you were getting on and glad that you're riding through the drug changes. Hopefully the side effects of the new drug will wear off as your body adjusts. I've already posted about my recent experiences so I won't repeat myself, but life is OK. I'm feeling more mellow than a few weeks ago and now have a mild anti anxiety drug to help me through the next few weeks while they decide what to do with my other medication. I took one earlier today and felt very chilled all day! Anyway my "one drug" preferred option is out of the window but I'm not complaining. And Well Done You! Lots of love
Victoria
Hi Victoria, so glad to hear from you!! I opened a Facebook page maybe 2 months back, and it sat there unused. Then one Saturday I started putting photos, and friends started coming out of the woodworks with accounts, and truly it is almost addictive! At the very least, even if you feel like you don't have much to say each day, you can give words of encouragement, put a quote from a favorite song or poem, etc. It's a way to help others, spread joy, understanding, etc - at least that is how I like to look at it.
I haven't heard hide nor hair from anyone in this group - I saw Tadzio on another post/forum, but haven't seen the others - I hope they are doing okay. When people drop off like that, you hope they're just having fun and staying busy, but considering what we have, it could another attack. I prefer to think positive (and say a prayer on the side as well).
If you already have a Facebook account, then once you log in, you click on the little groups icon at the bottom of your screen (kind of bottom-left, the Application section). Then in the Search for Groups field towards the top of the screen, type in "Ecstatic TLE CP Seizures". That should connect you, then you can join. Or if you want to send me your email address, I can send you an invite. That should work too and would probably be more direct.
I found a similar group on Facebook, but nobody has posted to it since June. I posted a note, but no response so far. So I think starting our own could be interesting.
How have you been - are you feeling well?
-- sparker
Hi Sparker
I am feeling OK. I had an appointment with my neuro and a separate one with his colleague a neuropsychiatrist the week before last. The neuropsychiatrist specialises in epilepsy and the adverse effects of anti-convulsants which I think probably makes a huge difference with respect to assessment/understanding. I was worried beforehand especially after all the comments on the site but she was lovely and really easy to talk to.
So they're now working on a solution.....but want to gather some old medical records, do further tests, and are exercising caution while they do so, as the recent reduction in my drug led to more seizures and not just the ecstatic ones! I do now have a mild anti anxiety drug - and just the thought of it makes me less anxious. I'm not into drugs in a big way, so will take them very occasionally just to take the edge off when I need to do so.
The reason I feel better, is that I was honest and open about the ecstatic seizures to her, (the neuropsychiatrist) including the fact that they've taken over my life, and I talked about the strong desire to experience them and I didn't feel embarrassed or foolish. For me, this is all quite new: I've always been incredibly uptight and selective in terms of what I reveal. Now I don't care. I think I've reached the point where I've stopped giving myself a hard time, and stopped being afraid of doctors. I suppose I'm quite lucky in a way, as I feel supported by a group of them, instead of alienated. The NP said if I disagreed with anything she wrote in correspondence or if she had misinterpreted anything I said she would alter her letters: I've never had a doctor offer to do that before! Anyway - so far, so good. She asked me at the end of the session what outcome I was looking for? So I think for a few moments....sigh deeply and say "well I suppose I need to get back to normal". I told my neurologist in a previous session - that my ideal scenario would be to get rid of the sh*t and leave me with the ecstatic seizures. Unfortunately, I know it doesn't work like that!
PS quote from her first letter to my neuro - and GP - ".... cognitive function appeared to be grossly intact." The way doctors use language is very interesting! It's almost subversive! But then, I'm not opposed to a bit of subversion myself.
Tadzio - this one is for you...is there a book out there called "seven" shades of ambiguity? I seem to recall a Literary Criticism book with that title, but perhaps I imagined this?
And for everyone else I hope all is well.