Epileptics unite!'s topics - tribe.net

Tailbone injury...????

2007-11-06T06:16:41Z

I am curious, did any of you have an injury to your tailbone or lower spine preceeding the onset of epilepsy? Even if it was a few years before I would like to know.

posted in Epileptics unite! - 0 replies

Lamictal and antidepressants

2007-07-07T23:54:46Z

Hi everyone. I've been thinking of taking an antidepressant again. I was on paxil until 2 years ago when i thought i didn't need it anymore. Well within the last few months, i've "noticed" my mood has been becoming depressed again. There are, at times, when i feel happy, but not great (which is understandable since many AED's are used to control bipolar disorder). But my depressive symptoms, i believe, are affecting my life more and more. So, I think i'm gonna start back up on paxil cr 25. The last thing i want to do is to put more drugs into my system, nor do i want to feel nothing. I would appreciate some of your opinions; pros and cons. (and furthermore, i'm taking lamictal 200mg 3 x day..is anyone also taking that much?)
Thank you

posted in Epileptics unite! - 1 reply

These damn seizures I have - HELP!!

2007-07-05T17:14:02Z

I'm new here and i'm not that good at posting but here goes, here is my story and I need some help.

I'm a black male from the San Francisco Bay Area and about 2 years ago in a Janurary while sleep early in the morning at about 8am or so I had a grand-mal seizure and awoke in the hospital being restrained by hospital staff and my girlfriend. I was told about the seizure and that I started talking as I was being taken away in the truck to the hospital, none of which i remember. So here I am talking etc all the way to the hospital and remember none, that scares me. I refused meds. cause I thought it was a fluke and i'd be all good, that it be the first and the last. I was wrong. The very next Janurary, a year later, this year, I had yet another grand-mal. I cart myself back to the doc. and they put me thru a MRI etc. which shows a lil scare of sorts near the front right, if you wanna call it that. Then I remembered a acident I had about 6 years ago while showing off at my daughter's birthday. So making excuses I told myself I'd be OK if they were once a year but they are coming more often now. The next one after Janurary came at maybe the end or March and then they were coming every other month until last week in which i see they coming every 2 weeks. I broke down and got the meds. the doc. prescribed to me which are Lamotrigine. He started me at just 25mg. for 2 weeks and then it increases by 25mg every 2 weeks till im at 200mg.

I was hoping yall could give me some of your thoughts on these seizures of mine. The reason im getting scared now is cause i hear you could die from seizures and also cause mine are from a injury i had years ago. I want to make sure im not bout to fall over. Also i wanted to know if the meds. im prescribed are going to interfere with the viagra i take for the movies i do. I really want to make sure im doing everythng right with it comes to these meds. and these seizures. please please please help me yall, my life is falling apart these days

posted in Epileptics unite! - 6 replies

glyconutrients & epilepsy

2007-07-05T17:04:52Z

Have you heard of glyconutrients for epilepsy? Here are some testimonies about how they have helped.

Asthma/Autism - Pamela Crosby

I want to tell you about how (glyconutrients) affected my life twice. First, my son was born with asthma. Basically he stopped breathing six hours after birth, and that began our life with asthma. He was an asthmatic child. The product was introduced to me for him when he was seven years old. He was on a lot of medication. At that point he was on the maximum dose of medication for a 16 year-old child. We had no place else to go. He wasn’t welcomed in school because he was too disruptive to the other children. He had a lot of allergies.

I gave him the product in May of 1999 and within fourteen days I seen a difference in him. Friends saw a difference in him. Within two months he was off all asthma medication. We had no more asthma medication. It’s amazing. To this day, it’s been 18 months. He hasn’t had an asthma attack. He, at 8 years old, for the very first time, climbed a tree, and I sat there crying because he was climbing his first tree. He learned to ride his bike at 8 years old. He hasn’t missed a day of school because of asthma.

So we had for 6 months in our house – I had three sons – we had a life of health. And then my oldest son who’s autistic went into a severe depression and we were on suicide watch, and the psychiatrist did everything. They put him on Luvox, Paxil, Prozac, and it wasn’t making him better. It was just making him go to the psychiatric unit. So I’d seen the success with Jordan, so we tried it with the oldest son, and he’s on the product.

He’s now in grade 12, going to school every day, out of his depression. He’s happy. He’s smiling. He’s communicating with us. He didn’t communicate with us before. He didn’t like to be touched. He didn’t want us to touch him. He didn’t want us anywhere around him, and we can touch him now, and we can talk to him and he’ll answer us back. He is making a friend at school, and it’s amazing.

Epilepsy - Ellie Sewert

I’d like to tell you first about my son who’s now 20 years old. He became epileptic at 11 years old. We went to the doctors right away with him and they tried some drugs and nothing helped and so we tried more drugs, and higher doses of drugs. Nothing worked. His seizures lasted up to about 6 minutes and it would take him about 24 hours to recover. We finally came to about the end of trying all the drugs after 7 years.

He had been on such high amounts that his bedroom smelled like chemicals, and we live on a hog farm and if he had worked in one of the rooms in the barn and had left, and my husband walked in after, he knew that Matt had been in that room just because he could smell the drugs. If you’re familiar with the side effects of anti-seizure drugs – dizziness, drowsiness, moods, behavior, emotions – and I quote from the last drug he was on – personality deterioration, and it also listed cancer as a side effect. We did notice he had all the side effects except for the cancer, thankfully. He is second oldest of seven children, and when there’s one if the family with personality deterioration, bad behavior, bad moods, it does not make a nice situation.

Well, when we came to the end of trying the things that the doctors had suggested, also he was not a candidate for surgery – the epilepsy was through his whole brain, so that was not an option. I had to look somewhere else and started flipping through the yellow pages, and we started looking into natural things. And Matt did start doing better.

We slowly weaned him off the drugs because we felt there was no sense him being on them. And I should mention the cost as well – we were spending over $6,000 a year on drugs just to see him get worse and poison him. (Glyconutrients) are cheap. And thankfully, last year in June, God sent (glyconutrients) our way. We liked the science that was presented to us, but it impressed it.

We thought we’ve got to get him on these products. The first week we had a much happier son. He was smiling more than we’d seen him smile in years. Within the first 12 months, his seizures were down to 4 to 5 minutes – or 3 minutes duration, with a 4 – 5 hour recovery time. He got the sparkle back in his eyes. He was happier. Things were improving in the home. He was much more pleasant and everybody was getting along better.

He decided he was going to go back to college. When he was on all the drugs, school was a disaster. All of his marks fell – he was failing courses. He did not get his grade 12 diploma. He went and did some tests to get into college as a mature student – did very well on them and he’s now doing very well in college, so we’re really happy about that. He had been out of school for 3 years. The last three months, his seizures have become so mild – he had one before school one day and he got up and went up to school and that never would have happened in the past.

So we’re really, really happy with his progress and I can’t wait to see what the next year is going to bring. And I’ve also been taking the products myself. I couldn’t be giving them to him and not using them myself. My hips have bothered me for about 10 years. They no longer bother me at all. I just to get colds that would drag on for 6 or 8 weeks – don’t get colds anymore. My husband uses the products – he’s always been a healthy guy, and a strong immune system, but he’s seen what kind of things are out there and he’s happy to keep his immune system strong.

My nine year old had asthma, and last winter is the first winter he could go through the whole winter able to breathe through his nose. He was not plugged up at all, even in August during ragweed season, he had no symptoms and that’s last year – August when he was only on the products for about a months. So that was good. Two of our sons did cross country last week, and use the (muscle recovery supplement) and (energy boost supplement) and had great results.

Granmal Seizures - Scott & Kimberley Boyle

About two and a half years ago our son suffered from a real low immune system and he wasn’t doing real well. But I’ll let my wife tell the story. She’s far better at it than me.

In April of ’97 our son experienced his first febrile seizure, and for those of you who aren’t aware of what that is, it’s generally a child who has to have a temperature of between 103 and 105 and they go into a seizure. They’re still conscious but they tremor, and it usually only lasts about 2 minutes. 2 – 5% of the infant population has this, and usually they outgrow it by the time they’re 6 years old.

Our son of course, we were told was atypical in that his seizures, he would completely quit breathing. And his threshold was only 102. If he was teething, he would immediately go to 102. If he was fighting a common cold he would go to 102. So it started when he was 8 months old and we’d lay him down in his crib at night and he was fine, and just has a weird sense and go check on him in the nursery, and he’d be totally gray.

And so, there was really any course of treatment. Drugs would probably stunt this growth and yadayada on that one, and so they just said, “you’re just going to have to deal with it.” So I said, “Let’s look into what we can do to make this better.”

We tried minerals, vitamins, herbs, all organic foods, juicing, raw, everything. Stuff you wouldn’t even smell, my son has drank. And at 11 months old, he had spinal meningitis, and he had a 105 temperatures for 4 days straight. If you’ve ever held a baby on your shoulder at 105 when the doctors are telling you it’s just a virus, and you’re only the mom, and you’re saying, “he’s deathly ill”, it burns your skin. And praise God it happened to be viral and not bacterial, but they just said, this is the course.

For whatever reason, your son just cannot fight these common viral and bacterias. He also had, which is very unusual, athlete’s foot – cracked, painful, oozing. No matter what we tried, his body could not fight anything, and I could give you a list of everything we tried. Nothing worked. The doctor – his pediatrician finally said, “Mom, you have to quit work.” And we had just bought our first little house, and I was in a children’s ministry at our church I dearly loved. But he came with me and we needed to start basically a cocoon program where I am just in the home with him for at least six months to hopefully allow him to get enough rest that his immune could then begin to respond to outside germs.

So we began to pray in earnest that God would send us an answer. And out of the blue, a dear angel friend of ours called me, in answer to our prayers, and said, “I’d like to show you an incredible new technology in a new area of business.” Well we desperately needed the financial help, but our life was Jonathan and I couldn’t focus and neither could my husband, on a business opportunity. And she said, “It’s in the area of health and nutrition, and I’d like to come over with a doctor friend of ours and show you this technology.”

And so I just knew God was sending an answer. However, when the doctor came and looked at my son, and he was typical, he was 18 months at this time, so we had dealt with this for almost a year, of every single month, him being sick for 2 weeks at least out of the month with seizures. He lived on children’s Advil. It was the only product we could give him to try and keep him from having a temperature, and one of his first words was ‘my meme’s’ – my medicine, which is pretty sad.

Anyway, when they came, he had green coming out of his eyes, coughing all night long. We either had him sleep with us or we set the alarm clock for every three hours for a new dose of medicine to make sure he was still breathing. When he came, he also had the athlete’s foot. He showed up children's phytonutrients, and I about laughed him out of my house, because you can’t tell me that these (phytonutrients) are going to heal my son. I said, “It’s a good thing you and I are friends doc, because I don’t know, this is pretty far fetched.” Because we had had many people with their programs in good hearts, trying to help us. And nothing had worked.

And so he said, “Give him two a day, and you’ll be calling me in a week.” And he said, “I would like you to put this gel – it was the Emprizone gel – on his little feet.” In three days, the green was gone from his eyes. In five days, the cough was very sporadic. He was sleeping – color was back. By the end of 7 days, we had a brand new baby boy who is like all 18-month-old boys should be – rowdy, happy, running all over the house. In two applications of (glyconutrient cream) – for 18 months we had tried to cure that athlete’s foot – he was healed in two applications.

And now, next Friday is his fourth birthday, and we’ve had no more hospitalizations, and he’s only seen his physician once for a checkup.

If you need any more info let me know.

Brenda Cooper
coopring05@aol.com

posted in Epileptics unite! - 3 replies

Last Stop - Spirituality

2006-11-23T00:57:03Z

In the last couple of years I have been coming to a place of considering the seizures to be part of some greater lesson.

Taking all the meds, tracking triggers, fighting the stress etc. is all happening, I'm not getting Chritian Scientist about it or anything, but when all the measures have been taken, and they still come, what else can I do?

My seizures are temporal lobe, they trigger panick and fear when the daytime ones happen that I don't lose consciousness in. I want to scream, grab at people, ask for help, anything to stop what feels like my sould being sucked out through my eyeballs into an abyss of timeless disembodiment. I've learned that this approach is not helpful but detrimental, so I keep my terror to myself, knowing it will pass.

Different prayers and chants have sometimes helped, if I can remember then at the time -

"One One One,
Ground yourself, strip yourself down
To blind loving silence
Stay there, until you can see
You are gazing at the light
With it's own ageless eyes"
Rumi

If we are only light, if we are all one - then where I go or am taken is irrelevant right? It's like a bootcamp program of enforced disattachment to reality.

"I am not my brain,
I am not my body"

Is something I find myself saying mid seizure too, which helps. I am more than these things, brain and body, memory and flesh. I have to beleive these things or there is nothing, as my grasp on life is so thin.

Reducing the fear, finding comfort to carry me through the dark is what I need. I have found, at the bottom of the barrel, letting go of a need to be a seperate individual intellect and relaxing into the universe, whatever that may be, grants me some comfort.

If life is a classroom, I'm in the advanced class.

What is your experience with seizures and spirituality? or thoughts?

posted in Epileptics unite! - 0 replies

Overwhelmed

2006-11-23T00:39:09Z

I am a 29 year old Kindergarten teacher who is 7 months pregnant, married to a wonderful man (28), and have a three year old daughter who is equally wonderful.

On December 23, 2005, my husband had his first seizure. It was terrifying, seemed to come from nowhere. It was a grand mal, and I took him to the ER. He was referred to a neurologist who found no cause for the seizure (they did a 24 hr. EEG and CAT scan), and pretty much dismissed it as a one time occurence. He didn't feel medication was warranted, warned us of the 6 months of no driving until seizure free, and sent us on our way.

The six months of being seizure free came and passed. The seizure seemed to be just a fluke, and we began to forget about it. I never thought it would happen again.

This past Friday, October 20, 2006 was an ordinary day. I noticed Matt was a little "off" - not really talkative. He said he was just really tired. We watched some TV, I played on the computer. Around 1 AM, we were still up, Matt watching TV in the recliner, me playing online games (in the same room), when I noticed Matt stretched the recliner way back. I thought he was just stretching his body, but then he began to seize. It was much worse than the first seizure. It lasted longer, much longer. He bit his tongue and began bleeding from his mouth. I moved anything that could harm him, and sat with him until it was over. When it was over, it took a very long time to recover. He couldn't speak, focus his eyes, or move for at least 30 minutes or longer. The first word he finally said was my name. I did not take him to the ER because there seemed to be no reason. They didn't do anything for him the last time. I stayed up all night keeping vigil over him.

The next day he said he knew he was about to seize (Friday night), that his Pepsi tasted funny (too sweet), and he saw two very bright lights in his right eye. All weekend, he has been awake a total of maybe an hour, and he seems to be physically unable to stay awake for long periods. I know he's exhausted. I've looked up grand mal seizure and sleeping, and it says exhaustion is normal, but it just seems to have gone on for a long time now.

He has nerve damage in his leg due to a back surgery for which he takes pain medication, Lyrica, and Cymbalta. He currently sees a pain management doctor. We don't have a general practitioner. We're trying to determine where to go from here as far as seeing doctors. Should we go back to the neurologist or discuss this with the pain doctor? Is this definitely going to happen again? Is he epileptic now? Just so many questions.

I don't have anyone IRL to talk to about this (Neither of our parents are understanding), and being pregnant, taking care of a three year old, and working full-time is so overwhelming. Matt is currently unemployed because of the nerve damage. Now, I don't know if the seizures are a part of our life or not.

I'm sorry to unload, but I needed a place to turn to. I'm not sure what anyone can even write in response to this...lol. I just needed to talk.

TIA.

posted in Epileptics unite! - 4 replies

Arms and Legs Shaking A couple of Days After a Seizure

2006-11-02T04:24:55Z

I just was wondering if maybe 2 or 3 days after a seizure if anybody else has trembling in there arms and legs it a problem for me and if not that what are somethings that happen to people after?

posted in Epileptics unite! - 0 replies

rash and lamictal?

2006-11-01T08:48:32Z

who has had the rash?
when did it start?
how did it start or look when it started?
how did it feel when it started?

posted in Epileptics unite! - 4 replies

being down

2006-10-27T21:27:32Z

You know you are down or depressed about things in your world when you start getting lazy about taking your meds and don't even give a damn if you have a siezure or not...My seizures are very much under control now for the first time in my life these past 2 years at age 41 (born with it) and I'm not upset at all currently about the epilepsy at all.

I'm just down about some other stuff in my life and I am VERY worried deep down that my current atate of 'I don't care' is going to come back to bite me in the butt.

*sigh*

posted in Epileptics unite! - 7 replies

Service dog

2006-10-08T18:45:18Z

Do any of you twitchy types have a seizure alert or response dog? Somehow my old dog seems to know when I'm gonna have an episode, or a full blown seizure. I know that this sort of thing is covered under the ADA act, but I was curious to know if anyone has had any problems taking your service dog to place where they don't allow pets. I've got her a service dog vest and I've got some cards about the ADA act. Thanks for the input.

posted in Epileptics unite! - 5 replies

complacency

2006-10-08T17:47:24Z

hi guys, just thought i'd right this, maybe it will make me feel better. I've got 3 weeks till i graduate. I've been working towards my m.a. in psychology; and hopefully, i'll get that piece of paper. it's just that i've been feeling so stressed out lately, and it's hard to deal with the little seizures. just the other day i was walking and had a petit mal, then fell flat on my face, broke off a tooth that went through my lip. i can live with that. but the seizures i get have become stranger and stranger. it's like moving through a world (when these seizures happen) that I can't even call surreal anymore. too fucked up, too strange, too frustrating. it's like wearing the ring in lord of the rings; being in a world of uncontrollable distorted reality.
It's really hard when the friends around you don't know the anguish. all they see is a "complacent" fella who just happens to have epilepsy. all they see is the effects of the medication. I wish i could scream.
-m

posted in Epileptics unite! - 2 replies

shakes and space outs are back...any advice?

2006-05-19T06:56:10Z

hey ive been getting better gradually with my seizures lessening but recently im starting to space out and lose focus again...ive also been shaking a lot more, sometimes for the whole day...anyone have any ideas why or had this too?...

posted in Epileptics unite! - 3 replies

emergency serious seizure lamictal question

2006-04-24T20:10:06Z

Hi all I haven't been around for a bit. Here goes:

My husband's cousin...HER daughter, age 12,has many ailments among which are seizures. For the past 20 days she was seizure free. (to the best of my understanding!)

As of the past day or so she had ONE 10 minute seizure and ONE 8 minute seizure. She was taken to the hospital.

Based on hearing i was successfully controlled on lamictal for the past year at 100mg 2X daily, so the cousin/mom had lamictal added to whatever med regime her daughter is on....

IS THERE ANY INFO AMONG ANY OF YOU WHO KNOWS OF A CHILD TAKING MORE THAN 200MG DAILY??? lIKE 400MG? OR MORE?

dOES ANYBODY KNOW OF WHAT MEDS IN THEIR EXPERIENCE AFFECT THE EFFECTIVENESS OF LAMICTAL????

Thanks for any help you all can give :)
(point of information- mom was told to contact me months ago and only now is asking cause her doctor in california where she lives said 'contact the cousin's wife/me cause the best result answers come from 'these' people!!!) ***DAMMED FOOLS PLAYING GOD WITH SEIZURE MEDS**** OYE

posted in Epileptics unite! - 6 replies

new flashy ads on tribe

2006-04-22T22:58:25Z

I just got an announcement on tribe of a 'make-over' of the website including more flash pop ads. I refreshed my screen and sure enough it is starting :(

I wrote a letter to them. i have written other letters before and gotten feedback relatively quickly regarding other questions so i am thinking....

EVERYBODY WRITE TO THEM!!!!

If we are nice and do it constructively AND bombard them with volume of e-mail requests to stop the flash...(I have no prob with 'stills') well...MAYBE they will realize how much attending business we give them.

Good luck cause i just had a week of seizure ills from my space so i am not happy at all...

posted in Epileptics unite! - 2 replies

USA involvement in Venezuela made me REALLY sick

2006-04-22T18:31:09Z

Aside from the horrible stress, they made medicines disappear- and anti-seizures were the first to go! When my meds were suddenly cut off in Jan 2003, I began having many daily partials, and sometimes I can't speak! I have been forced to stop my work tutoring children, and taken to the streets to fight off the invaders- nothing better than a good TL epilepsy to be a good military strategist! I've even been hanging around the governor's place to make sure he and the USA don't blast our state, ZUlia, which produces oil since before 1900.

BTW, the genes for TLEs were found recently at the U of Philly- those are the fever-caused seizures that give the weird feelings, and can produce extremely high IQs- and usually girls look like we are 18 by age 9! It has recently been stated that girls under 10 who get their period and look VERY much older need a neurological check-up/ but TLE rarely shows up on most types of imaging. Often, the high IQ types are too diffuse.

Vanessa from venezuela

posted in Epileptics unite! - 0 replies

overmedicated epileptic perverts

2006-04-22T14:46:09Z

new tribe. per request. http://tribes.tribe.net/overmedicatedepilepticperverts?r=10667

We've had seizures, brain injuries, surgeries, depression, ocd, ptsd, not enough sex, and wayyy too many pills.

So ... what's your excuse?

posted in Epileptics unite! - 3 replies

side effects

2006-04-03T22:16:54Z

i am new to this site and hoping for some advice from someone who has been through this same hell. i have a focus of the left temporal lobe. two years ago i spent 4 days in the hospital after having several grand mals. i had not had seizures since childhood. my neurologist back home was constantly tweaking my meds and after i moved to kansas last year my new doctor added depakote to the regime. i felt like i was losing my mind. my memory just crumbled and my husband saw a huge change in personality... basically i no longer had one, just a zombie. i was taking 400 mg of tegretol 2 x a day, depakote er 250 mg 1x a day, clorazapate 2x a day, butalbital 1x a day and prozac 2x a day. so months ago i tapered myself off it all because i would rather feel anything than nothing. and i stopped going to my new neurologist because he was a total arse who lacked an ounce of compassion. i have not had another grand mal, but i have small "spells" that worry me. could these be a precursor to something big? i would rather just live with the weird feelings than the mind numbing side effects but i worry.

posted in Epileptics unite! - 7 replies

trileptal

2005-11-10T20:37:09Z

Hello everyone. I've been on Tegretol for seven years. I've recently got some really good insurance (at last) with a prescription plan and am going to talk to my doctor about switching to trileptal. An old nuerologist of mine once suggested trileptal, but the tegretol is much cheaper. He said that trileptal has less side effects than tegretol. I also know that trileptal can really lower your sodium levels. Tegretol can hurt your liver really bad. Anyways, has anyone had any experiences, good or bad, with trileptal? I'm sick of tegretol, but it works. Comments are appreciated

posted in Epileptics unite! - 2 replies

Epilepsy conference in Portland, Or.

2005-11-08T01:11:08Z

Hey folks,
If you live in or around Portland, Or. there will be a conference to discuss new treatments in epilepsy. It's free of charge, but you have to register in order to go. Here's a link: http://www.providence.org/Oregon/Programs_and_Services/Brain/default.htm
Hope to maybe see some of you there.

posted in Epileptics unite! - 0 replies

Epilepsy Awareness Month

2005-11-03T22:48:41Z

http://www.outoftheshadows.com/ amy lee of evanescence is supporting, her brother has had three surgeries so far for it.
On a more humorous note:

YES I am aware I have epilepsy. *chuckle*

Actually I take it quite seriously and the Epilepsy Foundation back then the epilepsy society, they both merged, was an amazing help to me and my family and our ability to understand it in a time when we weren't using computers or internet 'yet'. There were no abilities to contact. No LJ communities. You were very much alone. Support groups were 'hidden'. Books were 'taboo' to ask for on the subject in the library.

That was in late 1970's....

The very first book I found on it was in my local library growing up and I actually hid it under my coat and walked with it instead of checking it out because I was so embarrassed. I walked for a long time and wondered at age 16yrs old HOW I was going to show it to my parents??? What would they say??? I desperately needed the information! it was the very first book I had ever found. The only free knowledge I had found on my own without being in a doctor's office or hospital.

When I finally had the guts to go home I waited and showed it at dinner. My parents were speechless. My mother was curious. My father...a hard thing to describe. My father even today is loving, supportive, giving, but in his thoughts he hopes it will disappear someday. It's a parents hope.

They asked where I got it and I told them about my trip to the library and I admitted taking it...
They never scolded me but instead finished dinner and went into their bedroom and closed the door and I heard them discussing it and their differences of opinion on whether or not I actually HAD the condition or not. THEN...mom and dad came out and it was dad who said to me...'your mother is going to call around and try to get you/us our own copy of the book.

It was a big moment. Recognition of the 'possibility' of a reality check on what I was going through.

Somewhere in my stuff I still have that very first book.

YUP I am AWARE.

posted in Epileptics unite! - 0 replies

Some help needed

2005-10-26T22:48:32Z

I seem to be having a major problem keeping my dilantin levels up. About two weeks ago I went to get my medication levels checked, and found out they were low. So I raised my dosage and just got my levels looked at again and they're still low! I've been on dilantin for a while now, so is there a possibility that I've developed a tolerance?

posted in Epileptics unite! - 4 replies

epilepsy and smoking

2005-10-24T05:09:31Z

hey guys, it's been a while. i just have a question that some of you might help answer. I'm a smoker, and i was just wondering if anyone has had a seizure, whether partial or non-generalized, while smoking? i'm seriously thinking of quitting and am gathering all the info i can.

thank you,
mmkn

posted in Epileptics unite! - 7 replies

deep thoughts about brain

2005-10-21T18:38:57Z

my thoughts----- the brain is an organ that translates electrical pulses from body.. generates thoughts and other processes for example-- when you burn your finger you do not think first then move hand the electric pulse is translated and you jump back quicker than the thought of ouch move hand another example everyone has experienced deja vu and people are allowed one seizure a year without being considered a seizure disorder is deja vu a slowing of what your eyes are seeing and what your brain is translating hmmm deep thoughts

posted in Epileptics unite! - 1 reply

my epilepsy card roflol

2005-09-03T06:46:11Z

some here prob remember in my previous post including stuff i haven't even said that I have had a really lousy year in my personal life. Among it was the fact that I haven't been to the neuro since sept 15 last yr with all that has happened. Well yesterday was my first appt. after having avoided doctors for a while. I got tired of the obgyn,reproduction specialist,dentist,gp,neuros,etc...needed a damned break.

WELL...

neurologist appointment was terrific
My epilepsy/neurology appt went amazingly well. It has been a very long time since a neurologist has said to me : 'you don't need to come back for six months...or sooner if you have any seizures or problems'....

I was SO worried about the appt that on the way there because I haven't been there since september 15th last year....SO,
Dov (husband) said to me on the way to the appt: .......

'what the doctor gonna do'??? 'take away your epilepsy card????' ....'you gonna be kicked out of the union'

*chuckle*

posted in Epileptics unite! - 2 replies

neurologist appointment first time in a year

2005-09-01T19:21:50Z

I am going to my neuro for the first time since last september. I am supposed to go every three months right now cause they just put me on lamictal february a year ago. It's been a pretty shitty year even though the lamictal has worked and I haven't had any seizures in over a year for the first time in my 41 years.

I stopped going cause i had what turned into a terrible horrible miscarriage on october 1st and then I tried to make my appts to see the neuro but both our timing sucked and after nov I stopped trying to reschedule.

I needed a break period from doctors. It was my second miscarriage , my first was fall of 2000...

It has taken a toll on my marriage and with my husband having been unemployed for 3 years now except for 'some' freelance infrequently...I am very much totally self-reliant and am grateful for having my job.

I took us off of the UFT's given GHI a year ago and now pay for empire blue cross blue sheild $500.00 per month to make sure I get the medical care epilepsy needs to make sure I keep up this no seizure part of my life.

SO...just from life experience at this point....I think I can say honestly....life sucks on occasion but then again it is up to me to take care of myself.

BUT...I am really scared to go see the neuro not because of the visit...he has helped me alot and i am grateful...I just don't want to go there and tell him my life of this past year and i will have to.

I need a friggin hug....

posted in Epileptics unite! - 2 replies

'restraint' kills epileptic - article

2005-08-25T07:12:57Z

http://www.epilepsyfoundation.org/aboutus/pressroom/pr20050713.cfm

posted in Epileptics unite! - 1 reply

My Space ick for epilepsy

2005-08-22T16:25:04Z

I started using 'my space' after constant askance by friends who have used it for a long time. I have used it since my b'day which was august 8th...

NO MORE...

The flashy flickering pop-up advertising has cause me great ill. The lamictal I have been taking since last year has done its miracle job and prevented any actualy seizures but the 'seizure warning effects' cannot be stopped. I am absolutely pissed.

I have several blocker type intensive programs on my computer my husband installed for my use against all this crap including,
Foxfire
Anidisable
Adblock - gotten through foxfire

Adblock makes it possible for you to block ads manualy but some just fight it and keep coming.
Anidisable gives you ability to shut off the flash flicker on icons and just show the image as a still pic.
Foxfire blocks most pop-ups.

IE is the worst offender of problems but now i would say my space is definitely up there.

Thank god tribe is only doing one or two ads and they are off to the side so not in your direct line of sight.

I am staying totally on tribe.

Bunch of dammed website advertising assholes.

sorry needed to rant a bit.

posted in Epileptics unite! - 1 reply

med interaction experience

2005-08-18T06:46:29Z

My doctor recently put me on Lopid for cholesterol and tryglicerides. I felt fine for a couple of weeks but then started feeling weaker and weaker, and dizzy, and just generally rotten. My speech was getting bad, and today my helper MADE me go to the doctor. It seems that Lopid can sometimes increase the effects of some medicines, diabetes medicines, blood pressure medicines, epilepsy medicines, depression medicines (all of which I am on.) So, essentially, I have been getting poisoned by too much medicine. The doctor was really nice, and found it really quickly. I get everything filled at one pharmacy, but this is only a reaction that can happen sometimes, so it isn't something they warn everybody about. Just though I would pass on my experience. If you are taking more than one med, especially more than one kind of med, and are feeling crappy for more than a few days (my blood sugar went down to 42 last night, very dangerous. and my blood pressure was way down 97/70 -- no wonder I was walking into stuff!) go get checked out for interactions. Don't be dumb like I was and keep thinking it is a "bug" and wait til someone makes you go to the doctor. I feel so much better now.

posted in Epileptics unite! - 10 replies

Ep and Diet

2005-08-17T20:13:09Z

Opening this topic for discussion. As for me, I am a caffeine junkie. Coffee in the AM and Pepsi all day long. I depend on caffeine to jump start me.
Well, actually caffeine and nicotine. Probably not a good idea, I wouldn't recommend it.

posted in Epileptics unite! - 14 replies

epileptic anger-adults playing god with chidren

2005-08-14T03:06:43Z

Why is it that people wait till the child is HAVING multiple long timedseizures to 'directly' contact me for help when they know I am taking the same medication and i had offered back when months and months ago to give direct account knowledge????? (I'm 41yrs old born with it myself)

Children do not have the same resiliency that adults do with seizures. I should know....I been there.

Not fucking fun. ........ADULTS ARE IDIOTS. ADULTS THINK THEY ARE GOD.

guess what???? if all you adults were so smart we wouldn't still be having these 'things' would we?????
so shut up and let us patients help each other with the damned poisons you think it's cool to feed us.

posted in Epileptics unite! - 1 reply

WebSite of Interest

2005-08-10T14:43:20Z

www.pillbot.com
Cheaper meds, maybe. Check it out.

posted in Epileptics unite! - 0 replies

is there anything you miss about not being medicated?

2005-08-08T23:44:33Z

i only recently went back on medication after 4 years of not taking anything...in the past four years i saw my seizures as visions - prophetic, terrifying, beautiful - and spent most of last year studying with shamans and sorcerers in china and africa who recognized this gift within me...being a part of that spiritual realm was maddening at times but felt like home to me.

anyhow, i came back into the country and the combined stresses of that time spiraled my epilepsy out of control and now i'm medicated again. i miss having my other sight, and i especially miss my dreams (tegretol has faded sleep into shades of gray). life is easier, but i feel like i'm wearing blinders now.

does anyone here have recent experience returning to medication? is there anything you miss about not being medicated? who here intends to eventually live a life without medication?

posted in Epileptics unite! - 10 replies

Do you...

2005-08-07T20:21:22Z

know any epileptics? I don't personally. I talk to a lot online, but I've never met any of them. This seems very odd to me. Anyone else here have this problem?
I'm thinking I should go find a group in my area so I can meet some. Any thoughts?

posted in Epileptics unite! - 4 replies

Trauma and Epilepsy

2005-08-07T18:12:24Z

I was recently diagnosed and boy was that a reief, I have always wondered what was going on with me. I have petit mal seizures and the Tegretol is working good so far.
My question is, has anyone else here been diagnosed with seizures that can be traced back to a traumatic childhood event? What triggered my seizures was the death of my dad when I was a kid.

posted in Epileptics unite! - 10 replies

Cause and effect

2005-08-05T19:06:55Z

My seizures seemed to lay dormant for short periods of time until triggered by something – do others have this experience? What are your triggers? What does that indicate to you?

posted in Epileptics unite! - 3 replies

epilepsy and demons

2005-08-05T05:24:43Z

I was wondering if any of you have talked to any christain types about this New Testament passage that describes epilepsy as caused by a "demon" and "evil spirit". When I ask if I have a demon, the Jehovah's Witnesses don't have an answer. It's a great way to get rid of them. A lot of my family have a sincere faith in Jesus, but none can explain this passage to me, they just get uncomfortable and shrug their shoulders. A guy once approached me on the street once to tell me how Jesus loves me and I asked him to rebuke the demon that causes my seizures. I showed him the passage, but all he could say is that it is Eve's fault that I have epilepsy. That bitch! Anyways, just wndering what others with epilepsy thought about the Bible's explanation. Thanks for your input

Luke 9:37-56

[37] The next day, when they came down from the mountain, a large crowd met him. [38] A man in the crowd called out, "Teacher, I beg you to look at my son, for he is my only child. [39] A spirit seizes him and he suddenly screams; it throws him into convulsions so that he foams at the mouth. It scarcely ever leaves him and is destroying him. [40] I begged your disciples to drive it out, but they could not."

[41] "O unbelieving and perverse generation," Jesus replied, "how long shall I stay with you and put up with you? Bring your son here."

[42] Even while the boy was coming, the demon threw him to the ground in a convulsion. But Jesus rebuked the evil spirit, healed the boy and gave him back to his father. [43] And they were all amazed at the greatness of God.

posted in Epileptics unite! - 6 replies

Paranormal Seizure activity Stories

2005-08-05T04:19:07Z

A few years back I had a partner who was a very rational, scientific fellow. A non believer of anything spiritual or flakey so to speak. He woke me up with quite a tale one morning. He was woken in the night by me having a tonic clonic in the bed. He looked at the foot of the bed and saw a ghost like image of me stading there watching my body. When then seizure ended a minute or so later, he saw this image reenter my body from the feet and I went to sleep.

Now what exactly do you do with this kind of information? A friend suggested I seek some out of body experince training so I could control it.

I told this new funky neurologist I just saw cause she seemed open and she said "thank you for telling me that, very interesting, you know, we really don't know a lot about this stuff."

Anyone else?

posted in Epileptics unite! - 12 replies

who ever said...

2005-08-04T07:37:58Z

who ever said it was gonna be easy...the one thing i pride is the freedom and the ability to control my own mind...but for those brief moments, few minutes, i've lost all that once comforted me so...
now i must put blind faith in medicine that hurts my organs, makes it impossible to concentrate on my art...my art..my life force...my radiation...

posted in Epileptics unite! - 5 replies

Keppra anyone?

2005-08-03T20:10:20Z

So Depakote made me fat and stupid, and Topamax made me psychotic. Now we're trying Keppra. Yes, I've read up on it (sounds like it can cause many of the same issues Tpomax did, such as depression & sucicidal tendencies but oh well we'll see how my personal pharmacology works with it.), but personal anecdotes are always useful (I wish someone had warned me about Topamax, since you can only take the fine print so far . . .) Anyone have any personal Keppra experiences to share?

posted in Epileptics unite! - 7 replies

mood swings

2005-08-03T14:50:10Z

Sooooo lots of different kinds of seizures effect mood, perception, perspective, and all other sorts of *fun* stuff. A lot of people would say I'm bi-polar2... which is like being bi-polar but much less extreme. I'm also an insomniac. I wonder if it's cause of seizures or cause that's just how it is. I think it's gotta be related some how. What do you think?

posted in Epileptics unite! - 8 replies

aed's and anti-depressants

2005-06-27T13:46:13Z

hey everyone, i have a thought and a question. about 3 months ago, i stopped taking paxil. i don't think my mood has changed much at first. but lately i've been feeling a little down. it might be from all the b.s. going on in my life (finals week, family, etc.) The person closest to me says i've seen depressed lately. i just need some advice. I'm currently on a high dose of aed, which alot of people who take them don't need anti-depressants. So, does anyone have experience with taking an aed and anti-depressants. Have you been on them then off them then on them....It's hard to 'relcalibrate your system when you're so used to the mind set of "should i take this for that?"

posted in Epileptics unite! - 3 replies

hello, i'm new here

2005-06-16T01:54:22Z

high guys, i'm so excited i found this tribe. sometimes it feels so lonely not letting you frustrations and feelings out because no one is there to understand how it really feels to have a seizure. although i have friends and family that help and understand me and my epilepsy (for which i am truely greateful and love them for that), it's not the same as expressing or talking about your frustrations, emotions, ideas, and experiences with people with epilepsy. PLEASE, don't get me wrong, this i hope this site is also for those people who don't have it but are here because they care for someone with it. support, i believe, can sometimes be the best medicine.
a bit about me. I was diagnosed with epilepsy at 12 years old. at first, i wasn't on any medications. weird because my father (and 3 older brothers) is an MD. then when i hit high school, it went away. but later in college, i began having gm, petite mals, and myoclonics. i started out wih dilantin, which helped a little. then tegretol, which helped a little, but then the dr. changed me to Depakote because he finally figured out it wasn't temporal lobe epilepsy. I have a type of epilepsy which is generalized. more specifically, JME or juvenile myoclonic epilepsy. the scary thing was that the depakote, which was supposed to help with this kind, actually made it worse. i had more seizures, but the worse thing about it was that i had frightening or terrifying episodes when there was nothing to be scared of.
PLEASE, don't get me wrong, Depakote is one of the best medicines out there for epilepsy, but that was just my own experience with it. when my parents took me to the hospital, they didn't know what to do with me so they sent me to the psyche ward, that is another story.
I am now on lamictal which has worked the best. it took me 8 (which included 2 years in the U of I college of pharmacy) years to get a BA and now i am in getting my MA in psychology. i also am a pharm tech, has worked in several pharmacys, and am now working in a residential mental health facility as a clinician handing out drugs to the people who live there. believe me, a lot of those drugs i have are very familiar.
Okay, enough about my biography, but as you can see, i have much ambivalence about western medicine as a whole.
Thank you for reading this and i am looking forward to hearing from you, all of you, all of us.

posted in Epileptics unite! - 7 replies

Melatonin

2005-06-15T07:07:57Z

anyone have experience or knowledge?
thanks

posted in Epileptics unite! - 1 reply

epilepsy and smoking

2005-06-15T05:05:59Z

i was just wondering, does anyone ever have a seizure (petit mal or myclonic) after smoking a cigarette? another question. has anyone ever quit smoking and had their seizures reduced dramatically. i know these are dumb questions (because-of course, anything can make them worse) but i was wondering if anyone had any thoughts on this subject.
Mien

posted in Epileptics unite! - 5 replies

fear comes full circle

2005-06-13T09:51:43Z

concentrating on the descingration of my body...i
am lead away from my reality...unfortunately
falling into illness and rendering your life doesnt
make a difference to any of the situations...it only
makes you submissive to the pity that peple offer
you and give you immediately...without even
knowing it people feel sorry for you and in return
you begin to hate yourself...taking blame for the
discrimination you face everyday every second of
the day becomes not only a second nature but it
remains a declaration of your existence... im
tormented by the simple facts of history...of
medical doctuments...what the majority rules
without consent... im convicted everyday for a
inability that i can only apologize for...i cant
change it... people will see the fits, the loss of
body and mind no matter what i say or do...people
live with the threat that theyll have to see it face to
face, they become alarmingly
confused...diassabled by their own factual
seperation..beyond the comfort of words, of
poetry, of music,family,some saying if i only ask
for help from god ill no longer display my
illness...the scriptures that whole heartingly claim
that if you have enough faith in the higher powers
you wouldnt have been born with this abnormality
but the same figure you disregard will no longer
give you burdens but will heal you...this will be
cured if only i believed...im fucking sick of
believing, of hoping because everytime it doesnt
pull through a part of me dies...im fuckin sick of
dissapointing myself... everyone connected to me
closely enough to know they deal with the fright
that comes from the moment of seeing it happen
and the simple fleash eating fact that they cant do
anything if it happens... you deal with the fear of
my misfortunes... i deal with the fear of my own
extinction...

posted in Epileptics unite! - 3 replies

Hey guys, what do you think?

2005-06-05T20:02:11Z

I'm sure everyone has seen a dramatization on TV regarding epilepsy, generally someone havinga tonic, and also a complete disregard for the person actually seizing, accompanied by a lack of knowledge about what to do when someone is cz-ing.

I'm thinkin that I would try to get the support of my local Epilepsy Foundation and take it to all the networks (there is more than one, right?) and see if we can educate the public on what to _actually_ do during a seizure.

thoughts?

posted in Epileptics unite! - 8 replies

tegretol

2005-05-31T18:14:37Z

Hi there! I'm new to this tribe, but not new to epilepsy. I've been on tegretol for almost seven years now. I really don't like taking it . I've been thinking about stopping, but I really, really don't want to have any more grand mals. Has anyone been on tegretol for years and then stopped? What happened to you? Thanks

posted in Epileptics unite! - 6 replies

Topamax info anyone?

2005-05-08T18:21:16Z

So, my doctor is switching me from Depakote to Topamax due my *hating* Depakote for all the usual reasons (weight gain, slowed thinking processes, etc.)

I've done a bit of readng on Topamax, and of course I'll do more, but anyone got personal anecdotes? It seems like a better drug, and I'm psyched to give it a try, but curious to hear anything that maybe the small print doesn't specify . . .

Thanks!

posted in Epileptics unite! - 7 replies

seizures

2005-04-06T00:52:41Z

i have had many different seizures my tonic clonic seizues or grand mal i can remember many things during these grand mal seizures but i have halucinated during one episode of grand mal seizures i still have solid memory of some of my grand mal seizures i recall the neurological test like reflex and see if tongue can stick out straight also strap to table in hospital and many more memories like no reflex of body and no control of arms and mouth when i am really deep in seizure most the time when asleep i know i am in seizure when i feel the pain of my tongue getting bit as if i lost control of tongue and mouth bite down real hard many memories doctors say i shouldnt remember am i the only one hmmmm??

posted in Epileptics unite! - 1 reply

Tapir hooves

2005-02-24T05:30:30Z

Tapir hooves hang for sale in a Peruvian shop. (Photo © Craig Downer)
In Peru, mountain tapirs are desired for their feet, which are used in traditional medicine to treat epilepsy and other diseases. The principle cause of their death has been to supply tapir parts to traditional native medicine shops or directly to the "brujos," or native healers.

got this from a recent article on ens news on peru. Has anyone heard of this remedy?

I ask because rcently I have begun using pau d'arco...the real stuff which I have to boil...and it has amazing powers for curing cancer, diabetes, all fungal and viral infections plus energizing.

The south american are pretty wise....just throwing it out there

posted in Epileptics unite! - 0 replies

Hi I'm new

2005-02-02T07:05:53Z

Hi, I just joined this tribe because I have a son who has epilepsy and I'm hoping to get some good help & advice. He had his first seizure when he was 7 and was on meds for about 3 years and when he wasn't having seizures any more I convinced the doctor to take him off of the meds. He was fine from about age 8 until 14 when it all started up again. We tried doing a combination of supplements and meds for a couple of years then went back to a traditional neurologist. He is now 24 and was seizure free for quite a long time, but last Spring when he started having a lot of stress at school and then his marriage broke up he started having lots more seizures again. The biggest problem I have with him is that he lives in Seattle and I live in the L.A. area and I can't help him out much. He hasn't been able to get himself together enough to go back to school and get a job. He can't drive and he is on the highest dose of dilantin allowed. I think this makes him very depressed and my husband and I can't afford to keep paying his rent and expenses. Does anyone know of any organizations that helps epileptics out with some of the more ordinary logistics of life like getting a job and getting transportation? He also has a little daughter and has to take the bus with her to Olympia visit her mom. He has his daughter most of the time so he can still be eligible for state health insurance. I think this is dangerous to be responsible for a 4year old when in his current condition. I'm at my wit's end here. Today his wife called me and told me he may be suicidal, he is so depressed. I'm sure the meds make depression much worse. Even if anyone knows a good doctor or clinic in the Seattle area that would help.

posted in Epileptics unite! - 8 replies

VNS surgery...maybe this is two topics in one...

2005-01-24T23:38:23Z

-the anti seizure medications have been up n down for me.im still on keppra and lamictal but my doctor has added an anti depressant / anti convulsant / anti anxiety / anti physchotic. my mind has been kinda fuzzy but i sleep better.so because of all of this i decided to have the VNS surgery.The surgery part was easy for me.After all i have 25 piercings and 9 tattoos.But beyond that once I got it activated my body had the worst reaction to it.i havent been the same since.i had it recently deactivated because my symptons wee getting worse and worse everyday.The doctors always tried to convince me to keep with it and stick it out but i couldnt.with the surgery n going to school and trying to live it was all too much for me.i literally couldnt see straight if i didnt get atleast 13 hours of sleep,i was constantly vomitting,ailing in pain, i was always crying, my stomach couldnt handle the acids along with the medicine and the stress.but after the deactivation i was completely back to normal.the quality of my life was getting better (as good as it can be).its been 3 weeks since deactivation n i feel great though i have to admit my body doesnt feel the same at all since the implant was turned on.i cant describe it but it feels as though i have lost feeling in my back and through out my body.i fell asleep during my last tattoo.i dunno if thats immunity or i cant feel stuff on the surface anymore.for gods sake this past tattoo is on my upper chest just below my collar bone.

-i know we all have gone through anxiety problems, attacks...lately i have been experiencing it all more than ever but now no one can tell at all...before it was obvious with my body language and my lack of eye contact, etc...ive never been part of a group other than this for my epilepsy cause i thought if i was really conscious of my epilepsy than it would instantly get worse...and now i have such a hard time even telling people that i have it...i cant even say it out loud...im very social so when i meet someone n we become closer friends n they open up i just cant open up, even though its the closest thing on my mind n on my heart...

advice?

posted in Epileptics unite! - 8 replies

space-outs

2005-01-23T21:12:09Z

Anyone else get this…sometimes just out of the blue for a minute or so, ill just lose concentration on whatever im doing and lose control of my motor skills. My arms etc become useless. If im talking to someone, ill fade out of the conversation and my sentence will fall apart as I say it. I can hear the other person speak but I cant answer or concentrate on them..

posted in Epileptics unite! - 4 replies

aura

2004-12-14T16:30:36Z

i'm kind of curious about the kinds of things people here experience as "aura" or pre-ictal events -- the kinds of things that warn a seizure's on its way, or can just be out there on their own sometimes.

i've been experiencing this weird sensation of a taste and feeling at the back of my throat lately. its weird. its pretty normal for me to experience little "blips" in my brain where words and patterns on the screen get all distorted and weird for a few seconds. on an eeg they show up as very small partial seizures. kind of annoying, though.

anyway, i'd love to hear about other people's experiences.

posted in Epileptics unite! - 8 replies

got arrested

2004-11-23T21:41:46Z

Hi everyone my name is James and I am the new guy. I will give a little back ground. I am 38 years old and have had epilepsy sine I was 17. I have grand mal seizures. recenlty had a breakthrough siezure my first in almost 4 years. I was driving to work and wrecke dmy car in my nieghborhood and the police arrested me for public intox and resisiting arrest. They dropped the public intox but left the rest because when the police got there I was in postickle( or however you spell it)and they grabbed me and they tell me I fought 6 of them off and of course they made sure I got my lumps before they took me jail. Now the prosecutor won't drop the charges but I am hoping the 1200.00 that I gave my lawyer will convince him I have a disorder because my medical records sure didn't. I also just started taking Trileptal can anyone tell me about it. Thanks for letting me vent, James

posted in Epileptics unite! - 2 replies

EEG photos

2004-10-28T07:00:14Z

Indeed, I photographed my EEG...
check it out here: http://www.livejournal.com/users/essenceofthemus/526423.html?mode=reply

Also here's 2 cartoons I've made on the subject:

http://img.photobucket.com/albums/v248/jenx1313/KatjainPaintEEGnoEGG.jpg

http://img.photobucket.com/albums/v248/jenx1313/Frankenstein2.jpg

posted in Epileptics unite! - 0 replies

Hallucintations and Lamictal

2004-10-26T11:37:57Z

I had seen this as a possible side-effect and of course have dismissed it as a possibility for me...

So guess what happen the past few days???

'Time' was not on my side...
Last night I was complaining to my husband that the TV clock was different from the NY1 channel on cable. it was an hour behind.
NY1 said 8pm. The tv clock and the bedside clock said 7pm. Or so I thought. I woke up this morning and saw the clock on NY1. It said 7:45am. The microwave said the same...the computers said the same. The bedside clock said the same.

NY1 and NBC said 8:45am...

My husband told me to get back into bed as I had woken up and gotten energeticlly out of control, did the dishes (Inever do them), showered, and yelled at him about a series of nightmares I had last night...He had to hold me and calm me down.. I was hysterical in a weird way. Crying, play punching him...hard. moving like a gerbil while he held me. I finally slept a little with him holding me.

He put it into words. I had had an hallucination. When I woke up after all that and a second time...all the clocks everywhere matched.

WHAT A WEEKEND. it is only saturday,,,,

posted in Epileptics unite! - 4 replies

headaches/migraines.

2004-10-20T18:24:48Z

my headaches are coming back really strong and i dont know why...what do you guys do when you get these?

posted in Epileptics unite! - 1 reply

acupuncture cures!

2004-09-25T09:57:19Z

I've just been over to the Acupuncture tribe where i posted a question whether acupuncture can help with epilepsy or would it cause seizures.

The resulting posts were an emphatic "Yes" acupuncture has been very effective in curing epilepsy.

You might want to take a trip over there and read what they say and talk to them more about it. The people who posted i consider trustworthy. See what you think and can find out.

posted in Epileptics unite! - 7 replies

Update on Lamictal

2004-09-25T09:45:02Z

I have been on it for a month 25mg and start this past week upping to 50mg. Here's my side effects. READY????

I have healthily lost 13lbs. I have my old energy back. I am not waking up groggy and difficult like I did on the depakote. AND...my sex drive is through the roof! My poor husband ;-)

He says I am the person he met 18 years ago :)

It is our belief that depakote has in addition to the epilepsy itself screwed around with my body chemistry and maybe perhaps in the past two to three years did not even controll me and was telling us just that through my temperment.

posted in Epileptics unite! - 1 reply

prescription drug programs

2004-04-19T03:36:19Z

i thought that some people might find this site useful:
http://www.helpingpatients.org/index.cfm

it is sort of a "clearinghouse" that has recently been set up to give patients better access to prescription drug programs run by drug manufacturers and others. these programs can provide among other things free or reduced price medications, so it may be worth a look.

posted in Epileptics unite! - 3 replies

cause 'n effect

2004-03-18T02:32:14Z

Hi I am new o this tribe. I do not have epilepsy but sometimes it seems i have aura's rising or am being 'taken' in ways that amount to the same without the seizure.I have been very interested in this subject and have two experiences with others i would like to share.

One was with a young highschool age woman in a group therapy who was epileptic who was very overprotected by her mother and who had only been dating black men and she wanted very much to find a white male who would be interested in her. She would have seizures over these emotional issues but when permission and acceptance was graanteed to her her seizures stopped , she also found a man.

The second was with a hugly overweight young man who lived next door to me and took a liking to me. He came over unanounced all the time and whenever i said no he of course had a seizure making me responsible. i tried to get him on a diet but he refused. i did notice that after he had a seizure he was much clearer although disturbed about what he went through. i wanted to get him off medication because I firmly believed the issue was psycological and had a lot if all to do with his father who metaphysically held a huge rock over his head keeing his mind in the dungeon and each time he would rise above it he would fear it and relapse.

Oh and i have a third issue which was a documentary on TV about a doctor removing some tissue from a young boys brain to further prevent any more seizures. The film recorded his interactions with his mother previous to the operation and I could tell just by watching and hearing his mother's voice as she called out his name that she was the very cause of the seizure. her voice was of an unpleasant and penetrating decible that found its mark in his brain and was so disturbing as it would be to any one inc myself. Taking out the tissue may help for a while. But the real issue again is the mother.

Another two cases in point. I lived in NYC in a Columbia U owned building with many profs there. Believe me it was a ship of fools but one teacher and his wife and two children boy and girl had something goin on. He always was in a rush and singing some classical music refrain to himself. He had a son who was obviously very bright and normal and a very jealous wife and a daughter who seemed as though she was retarded, very slow and expressionless and unresponsive. What i realized was that this daughter may have presented a threat to the wife who was already probably not getting enough attention and the other is that the man had a high pitched signal from him that could kill his daughter if she raised her mind. her survival depended upon keeping her mind down and tucked in to where these adulta could not reach her.

I was once at an ashram in upstate NY a young man was there with his son and his wife. The guru told him that he could kill his son with his vibration and that he ought to change it.

and another case. Also upstate NY but not in an ashram a talented musician divorced from his wife had a son with a brain tumor. He and his new girlfriend musicin were spending all their time and money on getting and finding help for his son. it was after i got offf the phone with him that i realized how sharply penetrating his mind was and that i actually had a sore spot in my head from his voice. Therefore i believe again that the father was and is the cause of his son's brain tumor. The tumor is like a callous and is a protective device .

There are more cases where the father is the cause of the sons illness or even wife's but it 's other illness than epilepsy. They all also "really care". The man who killed his wife went back to live with his 90 something mother who was severly hunched over. He coudnt understand why she would want to live either. And he had a terribly damaging effect on me.

They all also 'really care".

posted in Epileptics unite! - 15 replies

Lamictal Question

2004-03-09T06:52:32Z

The doctor is leaving it up to me and my husband. We want to try again to have a child. The first time around in fall of 2000 did not go as hoped.
I was kept on my Depakote at the time and lots of monitering. I have JME plus some extra seizures. So not taking meds is not truly an option.

Now I have been offered Lamictal. The idea being to increase the dosgae very very slowly and eventually lower the dosage of Depakote from the current 1000 mg. 2 times daily down to maybe 500 mg for the first four months or time it takes for the baby to form. Once the baby is formed the depakote would be brought back up and the Lamictal weaned off I think.

I am reading all the labels. And the doctor was very honest about some of the side-effects. What i need is to hear from the woman out there on some of these side -effects. And how did you do on it while on it? Are you still on it ?

One of the side -effects listed all over the place is a rash. It even goes so far to say you can die from the rash.

I just need some feedback. Thanks.

posted in Epileptics unite! - 10 replies

"spiral staircase'

2004-03-09T01:36:30Z

There was a woman being interviewed on NPR I forgot the talk show hosts name,,,a woman in philadelphia...interviewing this woman who wrote a book called "the Spiral Staircase...I was sorta half asleepso this is what i got out of it: the woman used to be a nun and gave it up. She was full of dred on entering the real world and had many strange experiences which were later diagnosed as temporl seizures. people would talk a out the god-like quality of seizures and she also alluded to to the russian novel "the Idiot" but she felt her seizures bordered on the demonic or the devil. she gave up all religion but later became a researcher of religioius text. In other words she doesnt believe in god but as she claimed a rabbi said she dose believe in the golden rule.
i wish i could remember what she said about her'dred' i guess of life. It might be posted on the NPR website...it was the program with Terri Gross...Fresh Air. As one who was also overprotected or who may be over sensitive or just tuned into the quieter gentler natural mode i could identify.

posted in Epileptics unite! - 0 replies

synaesthesia

2004-02-24T02:28:21Z

has anyone here ever heard of or experienced synaesthesia? if so, have you ever noticed a relationship between it and seizures?

(heres a hurriedly pulled up link on the subject if you haven't heard of it before: http://www.abc.net.au/catalyst/stories/s528838.htm)

posted in Epileptics unite! - 8 replies

Blame

2004-02-21T23:29:38Z

Has anybody ever been blamed for their seizures in the sense of using them against somebody? A partner, spouse, family member, friend? As a weapon, manipulation, whatever?

posted in Epileptics unite! - 10 replies

poem

2004-02-17T18:06:53Z

I wrote this poem... it goes with the gallery pic.

consciousness escapes
mind obliterates
muscles clench up like the petals of a flower at night
asleep in its cold bed til the sun rises
and they can slowly unfold
and embrace the rays
yet anticipating the time when once again
the world is surreal;
senses escape
mentality obliterates
like molten lava engulfing Pompeii
Flashes...
Disjointed...
Mental interference... buzzzzzz.
Cult of the seizure...
Capturing you in it's
warm tingly arms until you hit the floor
Once more unto that breach, my dear...
The bitten, bitter tongue of poetry
Clenched, Bleeding,
Pucker up and say,
(Nothing)
The rush of... the last of... past, present, fut...ility...

posted in Epileptics unite! - 1 reply

Newbie!

2004-02-16T13:46:28Z

Hi! I'm new...anyone heard of temporal lobe epilepsy? Was told I had it 12 years ago, was also diagnosed with bipolar at the same time. I should have been diagnosed a lot sooner but never was. I improved a lot with treatment. I've read the thread and I agree, there are so many overlaps and which came first, the chicken ot the egg. I've had the mood problems, perception distortions that you spoke of and mine is bipolar II also. i look forward to being here.

posted in Epileptics unite! - 7 replies

Work

2004-01-30T19:49:12Z

So what do you guys do for a living and how do you work around your seizures in regard to what you do? Have you had any work-related problems?

posted in Epileptics unite! - 4 replies

family planning

2004-01-24T06:40:31Z

I am on depakote which I was on when I was first pregnant in fall of 2000 and had miscarriage (not due to the meds)

What is the current alternative to this med during pregnancy?
Anybody know?

posted in Epileptics unite! - 2 replies

intro

2003-12-30T20:44:42Z

Wow, I'm surprised. I was starting to get worried that I was the only epileptic on this site!
I guess I'll introduce myself. My name is Isaiah and I've had epilepsy for about 7 years now. I had my first seizure when I was 19 after complications from brain surgery.
I can't remember how many seizures I've had, because I stopped counting. But I'm glad to say that I haven't had a seizure in about 5 months now.
So tell me about yourselves.

posted in Epileptics unite! - 10 replies

types of seizures, meds and accomodations

2003-12-27T21:12:54Z

What kinds of seizures do you guys have? How have your seizures and meds effected how you live your life? How have you adjusted and worked with your condition? (ie. work, school, driving, cooking, daily activities, safety)

posted in Epileptics unite! - 8 replies

pictures?

2003-12-09T19:28:49Z

I can't find any good pictures to post on our header. So if you think you've got anything cool that realates to the tribe, then by all means add then!

posted in Epileptics unite! - 2 replies

nerve stimulation for epileptics

2003-12-06T07:18:07Z

I just thought some of you might be interested in this:http://www.cafealex.com/html/VNS.htm
I can't afford it, but if you can you should have this done.

posted in Epileptics unite! - 0 replies

new tribe!

2003-12-06T06:51:58Z

Hi all,
I just wanted to let everyone know that I started up a tribe for people who suffer from panic attacks. Here's the link: http://PanicAttacks.tribe.net
Take care!

posted in Epileptics unite! - 0 replies

Hi?

2003-11-30T17:56:07Z

I joined tribe.net a couple weeks ago. I assume this is real new as a tribe cause it didn't catch my eye back then. Let's see...oh yes, I was born with it. Always have had seizures of varying types even though apparently the translation of the concept of 'controlled' is debatable. I just had a nocturnal seizure Friday night...me thinks. First nocturn one in years. Have many kinds but this one haven't had in a long time. My husband was away overnight so I'm putting the pieces to gether on my own cause nobody was here to say yes or no about seeing it. The doctors used to say I'd grow out of it. Ummm I'm 39 years old now. On the lighter note I do live an absolutely full normal life but I credit that training and acceptance to parents that allowed me to step out and be myself as much as possible. How's that for an intro to me ;-)

posted in Epileptics unite! - 1 reply