Victoria,

Thanks. I hope your holidays were wonderful, too. Same goes for all the rest of you.

Happy New Year, everyone!

Baruch Hashem. Hoshia na.

Devorah Zealot Soodak www.psychout.typepad.com/ the zealot lives!

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Hi Victoria,

My unconventional dosages of regular Keppra are still keeping the secondarily generalized tonic-clonic seizures in check during the about monthly clusters of stronger partial of seizures (about 28 months now since a definite tonic-clonic).

Ecstatic seizures remain much better than bland and/or fear aura limited seizures (bouts of synesthesia are very quickly cloying with the bland aura). I've honed my Pavlovian conditioning schedules down to where the post-ictal undesirable Limbic emotion after-effects of ecstatic seizures are easily minimized, though it doesn't influence the ictus of the seizure, and the prodrome and pre-ictals are too vague to make much of a determination of any direct results from conditioning.

I'm more addicted to coffee than the desire for more ecstatic seizures (they're a bit too frequent already), but they make fairly good happenstance reinforcers for the romantic arts, and somewhat prevent both satiation and declination to extinction of operants with many works of art. Some of my concerns with the drawbacks of neurosurgery were increased by studies on the side-effects both changing the more vague aspects of personality and often damaging subjective perceptions of works of art. The ecstatic seizures might dominate more over situations needing snap-judgments based on more negative situations (the previously more frequent fear aura were much more powerful in overriding everything else in the instant), but in following rational rules over more than an instant, they don't interfere with any thought processes more than I would like. Besides, I've had such strong and frequent fear aura previously with deja vu, I'm still overly fascinated by "nihilistic dismal doctrines" of Siger's (of Brabant) eternal recurrence, and the evident impossibility of free will (reading the translation of Lowith's version of Nietzsche's Eternal Recurrence is tempting, but the $60 price stops my free will (then it might be in some stack already).

I was to see my doctor next week, but I just received a call from the clinic that this doctor "moved on" too, like all the others. More of the Medicaid/Medicare federal laws passed in 2005 become more effective in the next couple of months, and even the most optimistic reviews based on actual content reek of Lifeboat ethics, except for material wealth, with the most important human value being expressed in the weight of gold. The rich and the poor and the branches of government are all currently playing a "game of chicken" with each other, and we're all suppose to eat cake, but most often, there's no cake to cut with the knife. Here I'm at, worried about just my Keppra, while the finances of world domination are treated as mere whimsical play tokens. So much for a solid foundation regarded forevermore by challengers with all those otherwise useless knives.

After the local nonsensical hubbub two years ago in the USA about that "Stephen Hawking wouldn't have a chance in the U.K., where the National Health Service would say the life of this brilliant man, because of his physical handicaps, is essentially worthless," ( http://www.huffingtonpost.com/2009/08/12/stephen-hawking-ent... ), How is health care doing in the U.K., with the teetering worldy collapse of most of global "tax-free for the rich" Capitalism centered in the USA? I'm "disgruntled" with Medicaid again (the feds call 60% of Medicaid patients "serviced" the same as being 100%, with repeated iterations allowed till 0% equals 100% for any very unlucky group).

Tadzio

Kevala,

Why don't you start a forum on this subject. Then people will give you their feedback. I can't comment on that specific Yoga technique because I have no familiarity with it.

Baruch Hashem. Hoshia na.

Devorah Zealot Soodak www.psychout.typepad.com/ the zealot needs help!

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Victoria,

It's great to hear from you. I'm really sorry you're not feeling well. Neither am I, but if I didn't write, I'd die of loneliness. I am stuck in a toxic waste dump welfare motel from which I will be evicted tomorrow.

The ecstatic seizures are not worth the price. I haven't been having many. I've been having nocturnal TCs, Jacksonian seizures, and Hashem only knows what else. My 500mg Keppra Q6 hours is now supplemented by 1mg Klonopin Q8 hours. It's a rather unmanageable medication schedule and I'm still seizing, just not constantly.

The meds are making me really sick and weak as a kitten. I'm too sick to pack and too sick to make a reservation. I had to call the Police last night because I was too weak to walk to the station and ask them to write down names of places because I told them I couldn't remember them if they just told me.

I also told them I was too sick to pack and gave up half-way across the parking lot to the Staples to get packing boxes because I knew I was too weak to make it. They told me to call in the morning and they would get me a cab driver and let him/her know I needed help packing. I said I would tip appropriately. They were really nice about it.

I understand your reticence to accept your religious experiences as religion. Our upbringings and belief systems die hard. I was raised to be a faithful Atheist. I think the operative word here is Faith. It was not so hard to go from faithful Atheist to Faithful because I already had Faith.

I think my post is as rambling and disorganised as you think yours is. I, too, am having trouble on this site. The login isn't secure anymore and I hate to enter my password on a nonsecure connection. That's how people steal your money and your identity. I already get phone calls from porn lines with whom I supposedly have accounts. I wonder if that's why my phone bill is so high. I have to check that out.

I also fight the ecstatic seizures when I feel one coming on. They end in TCs for me now. It is terrible not to be able to fully enjoy a beautiful sunset or an extraordinary dawn or even a full moon. Or just the beauty of nature. There is one spot I go back to over and over again to take pictures of it in different light and with the changes brought by the seasons. I cannot linger too long.

Please drop a note when you can. I really miss hearing from you. I hope you try and read my blog. I feel like it is falling apart the same way I am. My search rankings are tanking and I don't know why. Someone is working very hard to make me disappear.

Oh well.

Baruch Hashem. Hoshia na.

Devorah Zealot Soodak http://psychout.typepad.com/ the zealot needs help!

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    Hello there , :).....(:

    What's this , it's coming to an end ? You are Kidding me ?  I do know one thing is for sure, I had made a "FEW" incredible friends. We've had our ups ands down throught the time of being here in this forum...I know I've kept my distance and have'nt been in touch much. Look at it my post is number 591 ... hmm !! that says something that we have in commen seizure wise and also known eachother very well over time. Let me tell you ,lastnight I took a walk for 3 miles and was considering the inevidable :( . I had been having a very hard time lately and very depressed. It takes alot to make me feel that way, I'm punching walls (keppra) trees, my hands  are in so much pain right now. I know I can consult with great friends such as my estatic friends. Z you would'nt think so ,but things have been tough and frustrating. I wish everyone the best, take care and God Bless!!!!

   Johnny !!!!!  

    I just wonder what tomorrow brings and move on and keep on smiling !! Somehow ...someway!!!

 I spent a long time undiagnosed. My reaction to the seizures is what affected my spirtuality. The seizures are still bullshit, but they put you at a level where you want to learn. I did most of my learning in between seizures. I really don't want a discussion on spirituality, especially dealing with this type of siezure. There isn't enough information on them and when there is it's all about analyzing the seizures.

 It's the only seizure type that get's analyzed.  Confusing? I wish reseachers would keep it simple and keep to the physical seizure. Everyone is different and everyone is going to have different seizures. There are people who have a tough time getting a diagnose or they don't go for help because they think they're crazy. It's pretty sad when you have to do your own research to figure out how it works.  

 Tadzio: There is nothing you can tell me about these seizures. I ran the gammet.  I had every type of CP. I was undiagnosed from 1978 to 1994. After 1994, I was on and off my medication because I'm thick headed. Finally in 2005 topamax put everything under control!!!!

Hi Zealot,

The photos you posted reminded me of some of the old motels I ended up in back in the late 1960's and the 1970's, except back then the buildings were a few decades younger and I was in much better physical condition. I was lucky enough not to win the Reverend Jim Jones Lottery off the streets to permanent colony.

Medi-Cal (Medicaid) must think that 19 months without a tonic-clonic is too long, because they just had "eTar" reject anymore Keppra for me when I made my walk to the pharmacy. The pharmacy wouldn't answer questions over the phone about whether if my refill was ready, they wouldn't consider refilling a prescription until two days before the bottle was empty, so I made the long walk just to be told no more Keppra. They told me I had to have an official State container for any tablets for 5 day periods if an "appeal" was accepted for consideration.

I don't know if the pharmacy is full of crap and just trying to push cheap Keppra substitutes (which they haven't otherwise offered either), or the State just makes fickle decisions whenever they want to lose people on Medicaid.

Have you been following all the news stories on Alzheimer's? It is as if all babby-boomers are going to be labeled with Alzheimer's so as to prevent medical spending on more immediate and critical/expensive health problems in the short-term. Then it will be like the old movie "Abandon Ship!" (1957), with Tyrone Power jettisoning the old and less healthy people to cover the challenges in the long-term.

I posted a forum on epilepsy-dot-com about refills, titled "Been TARRED with an AED and eTAR???" and the ADA, but no responses so far. "Binding Arbitration" probably makes the ADA another name-only law. Why accept life-boat ethics??? Maybe faith healers are right, because Medicaid is definitely wrong as masquerading as complete health care with only the last few pieces not butchered off remaining.

Feeling ecstatic with partials seizures of epilepsy must mean I'm in excellent health!

Lots of Love,

Tadzio

R.C.,

No apologies necessary. This forum is rather tangled. We make the effort to reply directly to each other's posts, but the format here is not condusive to that. One of us eventually caves and posts "up top."

We all understand far too well the joys of post-ictal torpor. I, too, experience the joy of watching myself seize from outside of my own body. That is the result of something known as a temporal-parietal dysjunction. It's the same thing people talk about in NDEs. Maybe szs are NDEs. Hmmmmm…

I am in a pre-peri-post ictal nonsomnolent state. My head hurts too much to think. I am sporting some lovely new osteomas from having bonked my head, Hashem only knows how. I don't even remember an aura or being near any hard surface. If I have the slightest inkling, I get myself into the safest position possible.

I am in excruciating pain, but dare not call for help. The last time I went to an ER for szs, they shoved me in psych, took my meds, told me I wasn't szing and shut the door to the room they shoved me in. They finally moved me to the med ER and instead of giving me IV fluids with Loarazepam or a seaparate Lorazepam drip, which is the proper thing to do, but requires more expertise, they gave me three shots of Lorazepam IV push. This is not good because you don't get stable blood levels. SO i was basically comatose for 12 to 16 hours and dehydrated and probablt hypoglycemic. I told them to give me normal G5.

When I was in trouble the next morning, the response was: But you were fine when you came in. Duh! And after 16 hours comatose with no fluids, I wasn't! I left AMA after they wouldn't let me take my meds Q6 hours like I needed to.

I don't think a University in the world would touch me, but thanks for the compliment. Thanks for looking at the blog. It can be a tough read. Some of it is harrowing and some of it is heavy duty geek. It's all me and all true. I couldn't make this stuff up if I tried.

It's funny. I can't write blog posts right now, but replying to a human being is different. It is more conversation than writing, so I can pick out one letter at a time if I'm "talking" to someone. If it's writing and organizing… my head hurts just thinking about it.

I'm stuck alone in a moldy motel room that is making me extremely ill, havinf multiple szs every day, and my JFS case mismanager thinks it's all OK. He won't get me off the no fill black list, tells me how much he's done for me, and I'm praying that I don't die alone in this motel room. He says he found me two apartments. The fact that I can't afford either one of them is meaningless to him. I could find a million apartments I can't afford. Some nice houses, too. Is he an idiot, or a nasty SOB, or both? I can't figure it out! Help like his has been much worse than no help at all.

I need to sleep. The pain is too much to take. I worry that a headache this bad for this long is a sign of serious trouble. Imve got "pins and needles" prickling all over. I'm scared and there's no one I can call for help.

I don't know how much more punishment my body can take. I'm also getting weird taste, smell, auditory, and some strage flashy visual aura stuff. I just don't want to end my life as a moron.

Baruch Hashem. May He show me the Light.

Devorah Zealot Soodak