Barely dealing.

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?

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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    okay okay
leave

Trileptal to Keppra; side effects and worsening seziures

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.
Zim

Related? Unrelated?

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.
Zim

Question...

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 
kittyn moon

Americans with Disabilities Act Amendments Act

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."
Zim

I welcome all suggestions!

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 
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astral

ADA Epilepsy

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.
astral

EEG - weird experiences - thoughts if it was seizure?

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.
astral

EEG -

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.