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Seizure Disorder

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[28 Apr 2016|10:17am]

[ mood | i aM GaER'S CURiOUSiTY ]

I know this is a controversal topic, but it's come up more and more lately, and I would like the group's feed back.

I'm talking, of course, about cannabis.

As someone who takes at least half a dozen pills of one stripe or another, it has long been the goal of every neurologist I've seen to reduce that number.  Increasingly, I come across anecdotes regarding cannabis' beneficial effects on those with mental/brain disorders.  I don't pretend to fully know the chemistry involved--and as I understand it, neither do scientists--but based on many of the stories I've seen & read, I can't help but think this might be a viable option for me.

What's the concensus?

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dunno why [11 Mar 2011|10:56pm]

[ mood | blank ]

It's been just over 2 years since I was diagnosed with Epilepsy.  In that time I've only had about a dozen Grand Mal seizures.  (some days I wonder if maybe I have petite ones too but not sure of what would actually be categorized as one)  With no warning signs and not knowing what triggers the seizures it's hard to feel comfortable going any where or doing anything outside of the house.  Some days it makes it hard to go to work, especially since I do construction.  I'm scared one day I'll have a seizure at work and that will end my career once and for all.  (As it is, I probably should have stayed home yesterday since I woke up feeling kind of off, but convinced myself that nothing would happen.  Not 1/2 an hour into work I slipped and fell hard on my back.  What I didn't & couldn't tell any one is that I'm pretty sure I blanked out for a split second before I fell.)
Part of some of what I have been going through that I've tried to explain to my Neurologist & family, I think makes me sound a bit crazy.  I already have a hard enough time getting words out in the right order or at all some times.  Trying to describe something that is more of a feeling or sensation that really has no good description other than to experience it?  How do you do it.  How do you tell some one that there are moments where you feel out of sync with the world around you.  Like you've suddenly taken a step back and everything dims and becomes hollow yet louder and you're body just seems to buzz for a few seconds and then everything is normal again.  Or that suddenly your hearing in one ear drops away and this noise like a thousand radios playing all at once slams at you and your body suddenly buzzes & you feel it slip away as you lose control of your body but don't go unconscious?

I still don't really understand any of this stuff that's going on.  I don't have anyone to really talk to that understands or can relate, especially not at my age.  Nor have I really come to terms with this either actually.  I honestly am not ready to accept that this is going to be my life from now on.  I feel like it has robbed me of a lot of things I like to do.  The meds I'm on make some difference I guess.

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Hi [24 Feb 2011|03:41am]

Hi - my name is Bev and my 16 year old son Michael was diagnosed with epilepsy only a couple of months ago.  He had his first seizure a week after his 16th birthday. It came completely out of the blue. I heard this odd noise coming from his room, like a weird snoring sound, went in to investigate and found him lying there, drooling, eyes rolled back and looking lifeless. I was terrified.  The ambulance came and took him to the local hospital, where he had a CT scan. They said it was normal.
His next one  was a month later, off to hospital again but this time they arranged for a EEG, which showed abnormal brain activity and he was put on Epilem (500mg once a day). He had another seizure (this time, in the swimming pool), and his medication was increased to two a day. Since then, he's had two more seizures.
I don't know what to do. His medication is obviously not working. His next neurologist appointment is not until April, and they won't give him an earlier appointment.
And Michael - he is so blase about it all. I really have to nag him to take his medication. He refuses to wear a medic alert bracelet. He has to catch a train to college every day and I'm so scared he will have a seizure there or on the train. He also has to spend time at home on his own (I work), and I am petrified he will have one when he is all alone with nobody to help him.
And what happens if he does have a seizure when nobody is there? Will he die? Nobody has explained anything to me, the neurologist didn't want to talk to me or answer my questions, he just wanted to talk to Michael. I feel like I'm lost and I feel I am powerless to protect my son.
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hi [10 Feb 2011|02:47am]

 i have a seizure disorder too. I've had it mostly all my life. My last seizure wasn't too long ago. Which sucks about it i cant do anything about it and i cant play any sports that i love. I've had lots of strokes when i was younger. I had seizures all the time when i was little and i still do now. I cant do anything that i love doing because of my seizures.  I cant drive yet cause of my seizures. i have memory problems i think its from the seizures.  My first seizure was when i was a month old. I'm 18 years old now. So If you have anything in common with me. Let me know 
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Tramadol [06 Jun 2010|06:31pm]

[ mood | calm ]

Hey there! This is my first post on here. I took some Tramadol about a month ago and had two grand mal seizures about a half hour after taking the Tramadol. Has anyone else has this experience with Tramadol? I'm just curious.

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bodyache.. [21 Mar 2010|11:29pm]

I've been a member of this group for quite some time. I am amazed at how many people suffer from this illness. I haven't had a grand mal seizure in 10 years. There are times when I think I might be having one, but the symptoms go away. Anyways the point in this post is to ask, members of this community, if they have experienced bodyaches or is it a symptom of something else
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[14 Oct 2009|01:25am]

so today i witnessed my very close (intimate) friend have a seizure. i have never been so completely terrified in my life. i know it was a breakthrough seizure, his second; he and i drank heavily last night and he vomited, so i'm fairly sure this and lack of sleep triggered it. his last seizure was about a year ago. anyway. scary scary scary. i don't know what kind of epilepsy he has but i've been reading on it all night and i'm pretty sure it was a clonic-tonic seizure. so, fast-forward to the ER, there for about an hour and half, he gets discharged, something to eat and rests most of the evening. he just went to bed (we live in dorms) about an hour ago and i'm just making myself anxious about him... i want to be assured he will be alright tonight while he sleeps. is there ever anything that could happen while sleeping after a seizure? i apologize if this is a silly question, i'm feeling rather silly but also just frazzled and emotionally distraught.
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Introduction [11 Oct 2009|08:30pm]

Hi, everyone. I just joined LJ a couple of days ago, and this group a few seconds ago. I'm so glad that this journal is on LJ because I've been having problems with muscle jerks, seizures, whatever it is that I'm having. A few months ago, I was taking a nap when I suddenly jerked up into a sitting position. I have no idea what caused it; one moment I was napping, another moment I was sitting up. Several other things have happened in the past few months, so now I have another appointment with the neurologist this coming Friday because I was told that the results of the EEG I had back in June were abnormal--something to do with the delta waves, I'm not sure.

Has anyone ever been through this (stupid question, considering what the topic of this journal is, but I'm not sure how to ask it any other way)?
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[10 Sep 2009|07:28pm]


I joined this group because my daughter has seizures . She is ten and had a stroke at birth. Her seizures are poorly controlled with medicine, she still has random seizures and a lot of night time seizure activity. She has subclinical, simple and complex partials, absence episodes, and tonic clonic. The subclinical and absence occur the most.

I have begun to worry about her independence as she gets older. I am terrified that she would get hurt during a seizure, and that she is so vulnerable after one, when she is so out of it. So, I was wondering how some of you handled being a teenager, getting a job, what you do to ensure your safety, how you deal with the dangers involved. Any insight is appreciated.

Thank you.
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I have a question. [28 Aug 2009|08:00pm]

I hope it's okay to ask questions here. I've been without insurance, and now that I ifnally have it, my appointment with my neuro isn't until 10 or so days from now. And I can't afford to go to the doctors in LA for awhile. Before, like two years ago (I suck with time) when I had insurance, I was on Keppra 750mg twice a day. I had been on loads more, but I finally got down to just that and was seizure free. I also have Lupus and Scleroderma (auto-immune diseases) and an arachnoid cyst in my left temporal lobe. I can't think of all the proper names for the seizures right now as I'm back on seizure medicine and my poor brain is quite tired and gets confused easily...and I have a horrid memory, but basically I had the kinds of seizures where I stared into space, drop stuff, or fell. I never convulsed, except for the myoclonic jerks.

Now, here recently, before I got insurance again.... I started getting an electric shock feeling in my head, mostly as I fell asleep, and right after that I'd jerk pretty bad. I was concsious though. And then, one day, I was so tired from having taken the benadryl, that I laid down in my room and I can't remember fully. I know I was thinking about getting up, but whether I tried or not, I do not know. I felt the jolt in my head and I shook for a much longer time, in my arms mostly. Lately, I've been having a lot of deja vu. I've had this before and just ignored it. I never knew that was apart of seizures until recently. I'm back on Keppra (but the generic) 250 a day. Actually, I cut the pill in half so its 125 twice a day. Anyway, does anyone else get a sense of deja vu a lot? It can range from twice a day to 10 times a day. I don't know if it's all seizures of it I'm just so stressed out and tired and my day is routine so maybe it just confuses me? IDK. I just know it hasn't gotten any better. I've stopped have the electric jolt feeling since I stopped taking benadryl, and I haven't had any myoclonic jerks at night. I mean, my arms have jerked a little upon falling asleep but I don't get that feeling in my head and I think its just normal sleep movement. I don't get that weird feeling from it.

Anyway, since I have anxiety issues, this whole deja vu being seizures is scaring me. I mean, if I'm having seizures THAT often, that certainly can't be good. Is the arachnoid cyst moving? Is the Lupus attacking my brain? Does anyone else have this problem? And I know you can't diagnose me, but do you think it's (anxiety speaking here) like a major cause for concern? That my brain is going to go kaplooey?
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Adult onset seizures...at 34?? [27 Aug 2009|03:20pm]

[ mood | confused ]

New to Epilepsy. I am 35 years old, and had my first seizure in June, my second one in August and I thought I had a 3rd one while I was sleeping, but not sure since I don't know when I get the damn things. This is all very aggravating. I can't drive for 6 months and I have 3 children. I have been having to depend on other people to bring me here or there, and my husband has to work AND do things that I used to do (go to bank, shop, etc.) It is very depressing but I try not to let it show. I am scared. Very scared. I am here by myself during the day and the images of my kids coming home from school and finding me on the floor w/ blood oozing from my head is not a pretty one. I just wish shit in my life would go right for once. People usually feel sorry for me. My 10 year old daughter died on 2-25-07 in a 4-wheeler accident, I was already very depressed from that. Who wouldn't be right? And then I just start having seizures all of a sudden and my kids need their mom to be healthy....My neck and shoulder are already messed up from a roll over accident in 2005, so I see a doctor for that as well. I used to be terrified of doctors when I was younger, now it has become a part of my life, and I wish it wasn't. I just started medication for seizures in the beginning of August [Trileptal,sp??], I guess if I have another seizure we all know the meds aren't working to well right? Well I can't say I am glad to be here, because I am not. But I would like to get to know other adults or whomever in the same situation or, are on the same medication as me. I find that I am very tired during the day, but I sleep well at night which is a plus since I wasn't sleeping at all before the medication. The neurologist said to report back to them in 2 weeks if I am still have side effects, my body just may have to get used to it since I just started it.....Anyway glad to have found this group. Hope to get to know some of you here.


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New here [22 Jun 2009|06:05pm]

[ mood | restless ]

Hey Everybody,

I'm Stephanie, and I'm new here, and new to the whole world of seizures. I'd never had one before (that I know of) until Apr 20th this year, when i had a full on grand mal in front of my house. There were no apparent triggers, other than that I'd a had a few drinks the night before, not a lot, but more than usual for me. I was moving some light weight furniture from my car into the house when it happened. The last thing I remember was feeling dizzy and steadying myself against my car, and next thing I knew, the paramedics were over me. A neighbor saw me next to my car with my arms at waving around at right angles in front of me, and then I dropped. I fractured my nose on the way down, and landed wedged between my car and the curb, and managed to give myself some serious road rash on the left side of my face, along with various bruises, and a banged up knee. The neighbor got my roommates, who managed to keep me from hurting myself any worse. They say I seized for about a minute or two. I don't remember anything. My memory is very spotty until I got to the ER, where they ran a CT scan, x rays, and blood work. The next morning, they ran an EEG, and MRI. Everything came back normal, but the EEG, which showed abnormalities on the left side of my brain. They put me on a very low dose of (generic) Keppra (750 mg daily) and sent me home, with a follow up appointment with a neurologist about 5 weeks later.

Even on the low dose of Keppra, I had a lot of side effects and mood swings, so my neuro is taking me off that, and stepping me on to Lamictal instead. I'm taking both for now, while I get up to full dosage on Lamictal. She's ordered a 48 hour home Video EEG for July 13-15. I'll be wearing a monitor belt with a camera on me. I work at home, taking inbound calls on a laptop and sit at my desk for 10 hours a shift. The nurse who scheduled my VEEG said that ordinarily I wouldn't be able to work with my head wrapped up like a q-tip, but in my case it would be fine, since I'm home, and sitting still. I'm trying to decide if I should just work through it, or if I should talk to my boss about having the time off.

I lost my driver's license for 90 days, and have about a month left until I can hopefully get it back. Part of me really hopes I never have another one. The other part of me hopes that if there's something to find, that it shows up on the VEEG. I don't have a diagnosis yet, of course, but I'm looking at at least 2 years on meds according to my neurologist.  

Any words of wisdom, similar experiences, or what to expect with the VEEG are appreciated, as well as opinions on whether or not to try to work during the VEEG.


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Breakthrough [27 Mar 2009|12:32am]

[ mood | nervous ]

Wednesday morning while I was at my Mother-In-Laws house doing laundry my Fiance had a Gran Mal Seizure and fell down the stairs! He was rushed to the hospital where he was unconsious for almost 24 hours! Amazingly no broken bones of head injury. He is being kept for a few days for good measure.

There was no warning except for the roar he lets out. He was on the way to change our Son. What if he had been carrying him or worse the baby! He hasn't had a major seizure since Oct. last year! We thought this was going to be the year he would be free. I still haven't cried yet, because I have to be strong for the children. I am a bundle of frazeled nerves though. I can't even sleep in our bed right now. I am staying on the couch. He is so bruised I can't even hug him. I want to cry so much.

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Hurting [06 Mar 2009|12:19am]

[ mood | depressed ]

I live with a wonderful man who suffers from epileptic seizures. He has had them since he was two. We have two younger children and an older one from my previous marriage. Our youngest is his by blood and I am so scared she will go through the pain he is. he has Idiopathic seizures so we don't know where they come from ever. he has to eat right, stay dehydrated, keep his salt level up(from the Trileptol), get good sleep(may have sleep apnea), and stay unstressed(like that ever happens). Bright lights and strobing trigger them too.

Since I've been with him he has had three Tonic_clonics which scared the hell out of me. Mostly it is partial seizures he has, which are very painful and exhaust him. This leads to depression and mood swings as well as anger problems. He is on several drugs: Keppra, Lamictal, Lexapro(depression), Colonapin(mood stabilizer), and the trileptol mentioned above. He takes Excedrin Tension for the headaches that accompany the seizures.

I love him so much and plan to marry him no matter what. It just hurts that I have to watch him suffer and can do nothing but hold his hand. I have no one to talk to about this and it builds inside till I end up crying to sleep. I am always on edge waiting for the next one. Please if anyone can help me with words of advice or just a *shoulder* to cry on I would appreciate it very much.

My Love-No Day But TodayCollapse )

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Please see my main LJ account. [01 Mar 2009|03:19pm]

From today on forward I will no longer be using this account.
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meds? [22 Oct 2008|03:12pm]

[ mood | curious ]

So.......experiences with Topamax or the generic, anyone?


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Seizure Salad [20 Oct 2008|09:14am]

[ mood | hopeful ]

So.......anyone in CA know what the deal is if you have seizures where you are CONSCIOUS the whole time and can stop what you are doing, etc and issues w/the DMV...?
I know what the issues are re:lapse in consciousness.....
Any help would be appreciated.

I'm starting to REALLY appreciate and love you guys. I feel like you're all I've got for....this kind of support.
No one else knows what to do or how to handle it and I can't tell my mother that they've come back (I'm 30, but she's my best friend), because she'll worry like crazy.

Please help and tell me nice things. Good things. I know it'll be ok, but really? Will it? Am I going to die super early because my brain is fucked up? Am I going to lose my memory or ability to do academic work because my brain keeps hating on me?
I'm scared about doing the Medication Mambo again. It made me suicidal, and I'm actually approaching some good feelings/space in my life & self for the first time in ages........ :(


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lamotrigine vs lamictal [04 Aug 2008|08:10pm]

I have been on Lamictal for a few years. It has been the only drug to not give me horrific side effects.  When I picked up my prescription today, i was surprised to look in the bottle and find lamotrigine (generic Lamictal) instead.  The generic is all I qualify for.  i am apprehensive to try it due to my reaction to generics in the past.

Any experiences or hearsay?

Thank you!
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just a re-introduction [22 Jul 2008|05:10pm]

[ mood | cheerful ]

 hello all,I cannot remember if I have actualy posted here before,Ive been a member for like 7 months but I havnt said much mostly because I was unsure of the nature of my condition.

it has been figured out some time ago....

Dr.has found 2 foci in my brain.frontal midline(3rd eye I assume!weird huh?)and right temporal.I take keppra 500mg 2x a day and it worx well,like 85% of the time.

I used to work for the railroad as a train electrician but had to resighn because of this so I recently got a job as a security job that I'll start in 2 weeks.I am confident that things are on the upswing and my attitude is mostly good,outlook positive.

occasionaly I have a seizure in my sleep or when exhausted,if I miss my pill,It will always get me,my chemestry is very delicate.also I have a few questions for the group:

1.anyone know if it is possible for a 28yr old to "outgrow" epilepsy?
2.do I have frontal and temporal lobe epilepsy..I need to ask my Dr. what the official title realy would be called
3.is anybody here from connecticut?if so,does anybody know of any events or groups or any social activity around here related to the subject?
4.How is everybody feeling today and what could be done to make it better?maybe I could make you laugh?

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headaches [04 Jun 2008|12:16pm]

[ mood | hopeful ]

Anyone ever get weird headaches that *only* hurt behind one eye & that basic side of the head...?
I have a feeling that they are neurologically related, but can't be sure....Is this a migraine? I don't have the symptoms that I read about (nausea, light sensitivity), but it's quite painful and occasionally pins'n'needles behind my left eyeball, going back into my head on that side, and this isn't the first time I've had this.

Also, how often should one get MRI's? They're pricy, but I feel like since my seizures have returned after a LONG absence, I may want one? Just to make sure I don't have any tumors or am dying or something? Can they figure that out from that??

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