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Barely dealing. [10 Nov 2014|12:56am]
emilyfindlay
[ mood | worthless ]

Hey, so i'm really new to this and I don't actually think anyone is my friend on this so i guess it can't be read by anyone, right? Doesn't bother me either way!

I'm from Australia, and I have just, somehow, managed to complete high school, as in COMPLETELY finished it.
This year has been the hardest one yet!
Earlier in the year, I managed to get knocked out while playing basketball. There was no real complications except for when i started having seizures a few weeks later.
My family and I were baffled as to what was going on, and of course assumed it was because of my head injury.

Because, school-wise, this was such an important year for me, my doctor and family wanted to control this ASAP.
It took multiple tests and specialist appointments to work out i had a form of rare epilepsy that occurs as a cross of the way my brain matured and genetics (even though noone in my family has ever had a seizure). Of course my schooling year was affected dramatically, and will significantly affect my ATAR (end of year score).
im quite an introvert, so i decided to write a blog behind closed doors. i dont even talk to my parents about it, because i just act as though it doesnt affect me, but it does.
And i can't deal with it much longer.

I just want advice if people can read this on how to go about making things easier.. because i dont understand how im meant to deal with this!

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Am I alone? [26 Mar 2013|08:03pm]

becki_lu_lu4
[ mood | okay ]

Am I the only one who wakes up in the morning struggling to move because the medicine I am on is making me so tiered? Does anyone else have tonic clonic seizures 1-2 times a month?

Recently I experienced having some partial fits, which were very scary. The only way I can describe them is that I was almost fully awake, but I had no control over my own body what so ever, It felt like my whole body was tensing up from head to toe. At times It would also feel like my face was being grabbed by something and it would feel as if it was shrivling up, smaller and smaller.
Eventually I came out of the seizure, but I then began to gag a lot which soon turned into a lot of throwing up.
My mum took me to the local GP, who then sent me into hospital, as these fits were not the kind I normally had. During my time at hospital, I had more Partial Seizures and more gagging, more orahs and all I could taste in my mouth was blood, from the mouth ulsers.

I am taking keppra (levetiracetam) twice a day 1000mg and zonisamide 200mg at night only.
I tend to experience a lot more tieredness than my friends, this is noticed by them being able to make it to 5am at parties and me only being able to make 3am. It has also been noticed by the amount of time I spend laying in in the mornings and taking naps.
I sometimes struggle to concentrate at college due to being too tiered and this has a massive impact on my education, and it always has. Throughout primary and secondry school.

Does anyone else experience worser fits when they have a temperature? As in the past, when I have had a really bad temperature, I have been known to have more than one fit during that time of being ill. Sometimes 7 in one day.

It would be amazing to hear from anyone, who is going through some of or all of what I am going through. Because I have met so many other epileptics, but none of them seem to have the same type to me. Am I just the only one?

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Trileptal to Keppra; side effects and worsening seziures [13 Sep 2010|12:38am]

heterotopic
Hi, I hope I am posting at the right forum/group.

I've recently been diagnosed with complex partial seizure disorder. All these years I've been 'seeing' people come closer, their outlines illumined in light. And then I get a really bad feeling afterwards (closest feeling I can relate it with is extreme homesickness). This June, this has increased significantly, which alarmed me. I went to a psychiatrist who, after several sessions, referred me to a neurologist. Hence the diagnosis.

I started taking Trileptal (300mg cut into two, taken twice a day) but after an MRI (with dye) I got allergies, so my neurologist didn't want to risk it, and changed my medicine into Keppra and upped my dose (300 mg twice a day). I was responding well to Trileptal--the seizures were completely gone, and after a few days, my body was adjusting to the sleepiness and fatigue, which were my primary side effects.

According to my neuro Keppra doesn't have side effects, but it's actually worse. I sleep all day, I feel tired and a bit feverish. I also have poor balance, the world/reality seems to recede far back, making me feel like I'm not part of the world. I also get headaches, am dizzy, can barely eat, and worse, I've been having the seziures 3 to 4 times a day (I only started taking Keppra friday; today's sunday). I asked my doc about it yesterday and he made me cut the pill into half (so back to the same dosage of Trileptal), and it's still the same.

Should I give the medicine a chance and keep taking it, even if the seizures are really bothersome, not to mention the side effects? I'm supposed to be back to my neuro after a month (which is when the side effects will hopefully get better, I think), so I'm wondering if I should just hold out. Right now I feel as if I'm about to fall off my chair though, that's how bad the balance is. I also feel shaky.

Thanks for any help.
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Related? Unrelated? [12 Jul 2010|08:57pm]

choirgrrl
I generally have simple and complex partial seizures that occur in the left region of my brain. I am currently taking 800mg daily of Tegretol, and have had very little issues with side effects- although the medication does not fully control my seizures.

Just over the last few days I have been feeling an irritating urge to cry, basically over nothing. It wells up in my chest and throat off and on throughout the day, even when I feel happy (although the urge to cry is not a happy one, if that makes any sense).

Is this related to my epilepsy in any way, or is it something else? All I'm curious about is if anyone else gets these feelings, or if anyone knows of this being connected. Thanks in advance.
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Question... [19 Mar 2009|07:39am]

choirgrrl
I am about to start that process of being weaned off of Keppra XR. I am waiting for insurance approval for the next medication, so it may be a week or more before the process actually begins, and I have never been weaned off of a seizure medication before. I have no idea what to expect, and am afraid of having seizures again.
To everyone who has been weaned off of this drug, I beg for your stories! I want to hear everything, just as a base idea of what might happen to me. (And also so I have a little something to explain to my boss as to what might occur)
I am still taking 900mg of Tegretol, so it may or may not be as intense as I am expecting. Either way, I'd like to be a little prepared.

Thanks in advance!
x-posted to epileptics 
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Americans with Disabilities Act Amendments Act [11 Sep 2008|09:09pm]

kittyn_moon
Dear Friends,

We are extremely happy to report that today the US Senate unanimously
passed the Americans with Disabilities Act Amendments Act.

The bill corrects court decisions which claims that a person with a
chronic condition cannot utilize the ADA as a defense
when one loses his or her job because of their condition.

The House passed a nearly-identical version of the bill on June 25,
2008. The House must now pass the Senate version of the bill before
it is sent to President Bush for his signature.

"I am pleased that the Senate has...passed the ADA Amendments
Act," said House Majority Leader Steny Hoyer. "This bill
will once again make America a world leader on a central test of human
rights. I expect the House to pass this bill next week, and that the
President will sign it."
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I welcome all suggestions! [09 Sep 2008|10:38am]

choirgrrl
[ mood | worried ]

I have catamential epilepsy, and I also have no insurance- which is really where my question begins.
I am currently taking Tegretol, 200m doses 4 times a day. When I first began taking the meds, everything was fine. Over the last 2 years (of basically getting refills with occasional levels checks VIA emergency) the seizures have been coming back.
As it stands now, I am not only having seizures once a month on schedule, but am also discovering the one day is spreading into 3 but am also getting seizures on days like today (when I awoke to one, and also had another a few hours later- NOT on schedule).
Seeing a doctor right now is out of the question, as I am on a limited income where my husband basically takes care of everything and I work part-time. We are just above the line for assistance, although I am currently going through the system to apply for SSI.

My question is for all of us who suffer temporal lobe/partial/catamenial seizures. Are any of you ladies experiencing menopause, and can you fill me in on how this affects your episodes? (The people at the Epilepsy Center think this may be the problem) Has anyone had a uterine ablation, and if so, how did this affect your hormone levels? Did hot flashes start a few years after?

I was told not to quit taking my meds, but I really don't feel like they are working. Any advice on past experiences with people weaning themselves off? How is this done? It was also mentioned that even though I am having breakthrough seizures, the meds may be working and stopping half of what I really am experiencing. Any thoughts?

ANY suggestions, links, stories, et cetera, would really help me right now. And thank you in advance to everyone who responds!

x-posted to epileptics 

4 comments|post comment

ADA Epilepsy [23 Jun 2008|10:37am]

kittyn_moon
Dear Advocate,

Please remember to join disability advocates from across the country for the National Call-in Day on Tuesday, June 24th to support the ADA Amendments Act of 2008. We need your help to make sure the bill becomes law.

The ADA Amendments Act will expand protections under the Americans with Disabilities Act and reverse judicial decisions that permit job discrimination against people with epilepsy. The bill is strongly supported by the Foundation as well as experts in the disability community, business and employer groups, Members of Congress, and congressional staff.

We now need your help! Our goal is to have the ADA Amendments Act passed by the entire House of Representatives with no amendments. You can help by calling Rep. Virgil H. Goode, Jr. on Tuesday, June 24 with the following message:

"I am calling, as a person affected by epilepsy, to express my strong support for the ADA Amendments Act of 2008. This bill would protect people like me and is supported by the disability and business communities. I urge Rep. Virgil H. Goode, Jr. vote in favor of the bill without any amendments and without a motion to recommit!

You can reach Rep. Virgil H. Goode, Jr. at (202) 225-4711 or (540) 484-1254.

Additional background information is available below.

Thank you for joining in this national effort to pass the ADA Amendements Act and protect people with epilepsy from employment discrimination!

Background:

The Americans with Disabilities Act has transformed the nation since its enactment in 1990. The ADA was intended to protect people with disabilities from discrimination at work and in public life.

Unfortunately, court decisions over the last decade have excluded individuals who should have been covered under the ADA. These judicial restrictions block people with conditions such as epilepsy, diabetes, multiple sclerosis, cancer, heart disease and bipolar disorder from seeking protections against employment discrimination under the ADA.

The ADA Amendments Act of 2008 will re-establish these protections. This legislation is supported by over 40 national disability organizations - including the Epilepsy Foundation - and many key business associations such as the U.S. Chamber of Commerce, the National Association of Manufacturers, the Society for Human Resource Management, and the HR Policy Association.

The ADA Amendments Act of 2008 will:

* Amend the current Americans with Disabilities Act so that the effects of "mitigating measures" such as anti-epileptic drugs (AEDs), could not be used in determining whether an individual is disabled.

* Makes it clear that Congress intended the ADA's coverage to be broad, to cover anyone who faces unfair discrimination because of a disability.

* Clarifies the current requirement that an impairment substantially limits a major life activity in order to be considered a disability. The legislation provides a reasonable standard that will give clarity to employers and access to protections from unlawful discrimination for people with disabilities.
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EEG - weird experiences - thoughts if it was seizure? [02 Jun 2008|12:38pm]

kittyn_moon
I have been having weird episodes with memory loss, ringing in my ears, problems with words, and strange smell/taste problems and headaches afterwards. I have had migraines, still do - more so with the episodes. The headache after the episode is in the base of my skull area.

The neuro does not really know if it is migraines or seizures, so I had my EEG at UVA yesterday.

Wow, the EEG really sucked. It was very disorientating and my head was splitting afterwards. I still feel icky today. The strobing lights really made my eyes twitch and I had trouble keeping them closed for the test. The strobe light created some very interesting patterns and hallucinations, though.

I really hate waiting for the results. They would not tell me a thing.
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EEG - [31 May 2008|09:24pm]

kittyn_moon
I have been having weird episodes with memory loss, ringing in my ears, problems with words, and strange smell/taste problems and headaches afterwards. I have had migraines, still do - more so with the episodes. The headache after the episode is in the base of my skull area.

The neuro does not really know if it is migraines or seizures, so I had my EEG at UVA yesterday.

Wow, the EEG really sucked. It was very disorientating and my head was splitting afterwards. I still feel icky today. The strobing lights really made my eyes twitch and I had trouble keeping them closed for the test. The strobe light created some very interesting patterns and hallucinations, though.

I really hate waiting for the results. They would not tell me a thing.
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Does anyone else here wish they could club doctors with bats? [31 May 2008|10:40am]

choirgrrl
[ mood | thoughtful ]

So, I've been on Tegretol for about 3 years now? Something like that. The entire last year I have not had insurance, and trying to get any help- let alone my precious prescription- has been worse than trying to eat my own head. (Not that I would, although during siezure times I sure wish I could just to make it stop!) I realize the body builds a tolerance to the medication (damn body) and I am currenly up to 800mg a day, and still having seizures once a month. Considering I only weigh 115, this seems to be a lot, so upping the dosage would probably be out of the question. (Then again, I'm not an MD, what do I know, right?) Anyway, I recently called our state Epilepsy Foundation and was given a WONDERFUL information packet that explained more than any doctor ever has. I was told some people never quite become epilepsy-free, and that I may just be one of these lucky few. Great.

My questions are these:

1. Does anyone here have catamenial epilepsy? Can a hysterectomy resolve the seizure activity all-together, or is this just wishful thinking?

2. Can I receive disability for epilepsy? I'm sure I can, but does anyone think I will be approved for 1 day of activity every month? If I apply will they take away my driver's liscence right away?

Any and all help would be greatly appreciated. Hope everyone is feeling well!

(x-posted to epileptics)

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Insomnia? [14 Mar 2008|12:35pm]

elhalfling
[ mood | annoyed ]

I was just wondering if anyone else who is on medication for seizures also suffers from insomnia. I've always had a difficult time sleeping, but since I've been on medication, it has gotten much worse. For example, I go to bed at around midnight, but cannot fall asleep until two. When I do fall asleep, I wake up an hour later, take another half hour to fall back asleep, sleep for an hour and the cycle repeats itself until I wake up at around 6:30 AM the next morning.

I was under the impression that seizure medication was supposed to cause drowsiness, not insomnia.

Does anyone else suffer from insomnia also? If so, what do you do for it? Any help or insight would be appreciated.

Thanks!

Cross posted to seizuredisorder and epileptics.

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[23 Dec 2007|02:00pm]

quicksilver555
[ mood | chipper ]

hello all,I am new to this community.I posted a my long story in brain_fuzzy

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Hello everybody [23 Dec 2007|01:53pm]

quicksilver555
[ mood | chipper ]

 Hello all,I am new to this community and am here to learn what I can about TLE.I suspect I may have this after almost 20 years of ?oddness? I suppose.I posted a very long story in brain_fuzzy   comments are always welcome as I have many questions

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[04 Feb 2007|10:04pm]

choirgrrl

I am currently taking 800mg daily of Tegretol for temporal lobe seizures. They used to come every month, right with my menstrual cycle. Then came the medication, and the seizures ceased.That is, until recently.The last 3 months I have had 1 day at the beginning of each month where not even the medication seems to be helping. The seizures are just as bad as they used to be, although some of the side symptoms (the metallic taste in my mouth, etc.) seem to be lessened.I am afraid. Does this mean I am building up a tolerance to my medication? Does this mean I need a NEW medication? Does this mean the days will keep building up as the months pass, and before I know it I'll be back in bed for a week?Also, I currently have no insurance. (Or money, for that matter.) Does anyone know where to go for help with these matters?

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LJ Ate My First Draft, So This Is Quick And To The Point [08 Jan 2007|11:44pm]

choirgrrl
I currently take 800mg of Tegretol, and have been seizure free aside from a random episode or two that I blame on my own missed doses of medication.
However, I have been religiously taking meds and found myself day before yesterday stuck in bed having seizures all day. (I had over 20!)
Anyone else have random epsiodes out of nowhere like this? Is this normal? Any suggestions as to what may have caused this, as well as how to prevent it from happening again?
2 comments|post comment

Anyone out there taking Keppra? [04 Dec 2006|12:38pm]

jcortese
I'll try to keep this brief -- hah.

I'm a recent diagnosis for TLE -- have had "things" since I was about 7 or 8, and have all the attendant oddities as well: extreme language and mathematical ability, rotten memory, emotional lability, synaesthesia, extremely good visual data modeling ability, left-handedness with a hooked hand, and occasional odd scents. I'm 40 at the moment.

Spells involve the standard: hyperreality, overwhelming deja vu, waking dreamlike state, occasional blackouts.

Since beginning to take toprol (a beta blocker) for Marfan Syndrome, I haven't had any of these serious, full-on spells but do have some occasional trippiness and what I can only call feelings of depersonalization. It's been a VERY long time, a few years, since I've had a full-on spell.

I have just made appointments for my MRI and a sleep-deprived EEG, but the neurologist has already put me on Keppra, and I'm not at all fond of the idea of going on a medication when I haven't had a spell for an age, and when I don't feel as if I have enough information yet to feel justified in taking another medication. The doctor told me that if I do have another spell, he's required by law to inform the state of California and the DMV, which could cause me to lose my job as I work 35 miles away from where I live and must drive two snarly freeways over an hour each way to get there.

Again though, I've been spell-free for years and I don't care to start sucking down some annoying new thing that may make me feel freaky, sleepy, or otherwise screwed up.

Is there anyone else out there who is currently taking Keppra? What have your experiences been with it so far? If you felt drowsy or easily irked while you were on it, how long did it take before it started to level off and go away, or did it? Any other advice about this?
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Recent Activity [12 Jul 2006|11:37am]

choirgrrl
Missed a few doses of my Tegretol about a week or so ago, and yesterday was a complete mess! I had had a bit to drink the night before (4 shots of brandy to be exact) and thought upon waking that perhaps I was still drunk. It was an odd thought, considering more than 9 hours had passes, but what else are you going to think? I tried walking to the bathroom and could not walk straight. Sitting on the john, it seemed as though I myself, and not the room, were spinning. I made it back to the room the same way i had made it out, and went back to sleep. I woke up about 2 hours later feeling incredibly nauseous. *ugh* I hate that feeling more than anything in the world! I brought a trash bag into the room with me and finally vomited after some time of moaning to myself. It was clear, as though all of the soda I had consumed the night before had already digested. I again tried to sleep, waking up after another hour or so... and then the seizure hit me. I stayed in bed most of the day, having seizures appx. every hour or two. My entire body was heavy, my head felt like shit, and walking still took a bit of effort. My boyfriend said my skin was very pale, and my eyes were repeatedly dilating, each one independently from the other. (i.e. one would be big, and the other small)  By the end of the evening my appetite began to return, and the "air in my head" sensation was almost gone. I again returned to bed. Today I feel a bit better. My stomach feels heavy, as though I had just eaten a tub of lard, but not too much else feels out of sync. I am so afraid of having a major seizure, as the dogs have not left my side since I got out of bed. (My friend's dog woke me up by clawing at my door, which she NEVER does) I need to go to the store and don't think I should.

Any thoughts on the alcohol/seizure connection? Is there any at all? I used to drink far more than this NIGHTLY and have stopped for some time, although I did have a few shots of brandy the last few nights, meaning that was not my first night "off the wagon." The dizziness? Was that my TLE acting up, or remnants of the booze? Anyone had any cases similar to this? (cross posted in my own journal.)
2 comments|post comment

smoking... [24 Jun 2006|08:59am]

rechenzeit
Are cigarettes bad for epilepsy?  (this is crossposted again, sorry for the bother)
3 comments|post comment

A Happy Introduction (I AM NOT ALONE!!) [22 Jun 2006|07:47pm]

choirgrrl
Hello, everyone. I am 26, recently diagnosed as having Temporal Lobe Epilepsy just over the last year and 1/2. I am so excited to have found this community!!
My seizures began (at least from what I strongly remember) in '99, at a Penn and Teller show, of all things. I recall getting very sleepy during the show, and thought I would go to sleep. The next thing I knew my ex-husband was waking me up, asking me to put my glasses back on. (I had sprung up, he says, threw them off my face, and went limp.) We decided to leave immediately, and I had great difficulty walking, needing a human crutch, as well as speaking, for my tongue had gone numb. I thought it was due to the fact that I had not eaten all day, and didn't think too much more about it.
As the years passed, strange things began to happen. Out of the blue, I would be feeling fine, and suddenly have short spells where I was aware of my surroundings, but could not move or speak. They usually passed quickly, and I would feel fine once they were done, so I shrugged them off as vitamin deficiencies or hot flashes or whatever. I didn't even tell anyone until I noticed a pattern to their arrival.
Before I knew it, every month I was having one day of being, "sick," as I had labeled it. Then, as time passed, it became two days, then three... all usually centering around the time of my period. The spells were SERIOUSLY beginning to affect my work and social life (most thought I was on drugs) but the different doctors I had seen could not find anything wrong with me, or would simply raise their eyebrows at my explanations of how I was feeling. 


It wasn't until I was literally laid up for a week at a time that I realized I could not just "live" with this "sickness" any longer. Something was seriously wrong, and I had to get it checked out. Again to the doctors, again with the eyebrows. Then, I had a grand mal seizure at work. One minute I was in the bathroom, leaning over the sink, cursing my messed-up brain, then next I awoke in an ambulance on a stretcher, en route to the local ER.
Long story short, and many many tests later, I got a diagnosis, and a prescription for Tegretol. I have been doing fairly well on it, although recently it seems that I have been having more TL seizures than I should. I am uncertain if it is my dosage (which I have been trying my damndest to get on a regular schedule) or if it is time to get on a new RX. 
I had surgery on my inner ear (I had a hole in some old scar tissue) thinking it would calm things down. It didn't. I got my tubes tied, and my uterus cauterized, thinking it would calm things down. It didn't. I recently had my last 2 wisdom teeth pulled, thinking- maybe- it would cut the seizures back. They seem to have gotten worse.
I am personally so sick of dealing with this that part of me does not even care any more. Half of me wants to work and be normal, and the other half is so sick of worrying about Dr. payments and money for RX's that I'm considering filing for social security and becoming a burden to the system.
I just don't know what else to do, and trying to get assistance of any kind is like pulling teeth.
Any suggestions? Any personal tales that might help? Anything HERBAL that anyone knows of? (doubt it)
Thanks again for having this forum here. I would have done a cartwheel had I known how once I saw it!
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