Hello!

[Koda1021]

Hi Everyone!
I'm so excited to have found this site and forum!! My name is Alexandra, and I am newly diagnosed with epilepsy.

About three weeks ago, a Saturday...I was feeling a bit under the weather (bad cold). I did some working from home in the morning, was on a conference call, minor stuff. Mid-day, I decided to lie down on the couch and take a nap. My mother (who lives with me) was also on the couch watching a movie. I fall asleep, and the next thing I know, I start to "come to" and realize there are people around me (strangers). I'm out of it, but starting to realize my mother is sobbing, and I start to think "what on earth is going on...who are these people?" I didn't know my name, the day of the week, the year, didn't recognize my mother...nothing. Eventually, I started to become more lucid, and I realize the people are EMTs and they tell me I'd had a seizure (I'd also become incontent during the seizure).

They take me to the hospital, and there, they hook me up to an IV of Dilantin. My mother explains (by this point, I'm more lucid) that I'd had what turned out to be a grand mal seizure...full seizing, foaming at the mouth. They do a CT scan, give me a prescription for Dilantin, and tell me to follow up with a neurologist. I was lucky, in that my GP got me in right away for an MRI, and an appointment with a friend from medical school who is an excellent neurologist (I like her alot). From the MRI, they discover I have subependymal heterotopia, which is evidently what is causing the seizures. In talking with the neurologist, we realize that I'd probably had a couple more seizures, due to the fact that I'd awakened a few times late last year/early this year in the night, having wet the bed, and was too embarassed to say anything (so I washed my night clothes and didn't say anything to my mother), so I was given the epilepsy diagnosis. I just had a sleep-deprived EEG yesterday, so no results yet from that.

I'm terrified, I won't lie. It's only been about 3 weeks, and not all of it has fully sunk in. I'm 40, so this was definitely a shock to me. I'm three months from graduating with honors with a double degree in Accounting/Management, and just got a huge promotion and pay raise, with a lot of work expectations. I'm trying to keep it together, but I'm just scared. My neurologist took me off the Dilantin right away, and weaned me into generic Keppra. So far so good, but I do get tired and nauseous with it.

To make matters worse, it seems that people are so ambivalent (at work). My director hired a new manager just a few weeks ago, and she was in charge when I wound up in the hospital (director was on vacation). Her response to my email about what had happened was "sorry to hear it..oh, by the way, I need you to do this..this..and this." Today, my director mentioned an off-site meeting this manager is going to run, and when I questioned the hours (I get in to work at 7:30 and usually leave at 4 so I can take my evening dose)...she (the manager) said "oh, there will be food there!" What?? Who said anything about needing food? They want me to stay 2 hours over my normal time, and when I pointed out that I needed to take my medication at 4, my director seemed rather rude in saying "well, I don't see any reason why you can't take your pill!" I want to scream, because I feel like they want me to somehow just "get over it" and get back to work!

Sorry for the long post, I was just so excited to find this forum. I have felt alone and terrified for 3 weeks, not really sure how to proceed, and at least I don't feel as alone!

Alex

 

[epileric]

Welcome to the site Alexandra

Sorry to hear about your seizures. I can only imagine what you're going through. I was born with mine & I actually think that's easier because it's just what's normal for me. There are a lot of people on this site though that have gone through the adjustment period when discovering their seizures.

I do feel for how you're being treated at work. Something I've learned is that I"m usually treated one of a few ways. Either I get the "get over it" attitude like you did or they tend to terminate the job/friendship- though they all swear it's not because of the seizures but what I find the worst is when people get overly helpful with excessive sympathy and a perception that I'm somewhat helpless. As much as work might seem like a pain, I personally would much rather be treated as though I'm still capable over the other 2 options. It is also possible that they just don't know how you wish to be treated so they try to act like all's normal.

There is a lot on this site about Keppra too. It is known for the Kepprage anger that many people get. I know when I was on it I wasn't just angry at small things but extremely emotional. If you do have that problem too, Vitamine B6 is supposed to help.

Meanwhile, make yourself at home. The people here are really supportive & there's a lot of great reference material here.

 

[huskymom]

Hi Alexandra!

Welcome to the site! I am so happy for you that you found us. Nothing is worse than feeling like you have no one to talk to, and no one who understands.

I was 45 when I had my first seizure. Mine occur mostly at night while I am asleep, so I wake up feeling like I have been hit by a truck and confused. Sometimes even in a "puddle". My family have been very supportive as well as my work. If I need the day off to recover, they have no problem with it. I guess it helps that my boss has a wife who had a brain injury not long ago and has some of the same issues.

I have been on Keppra for about 3 years (with a mixture of other things) and found when I first started it, I had the same problems as you. Hang in there. After two weeks or so those went away for me and have had no real problems since. My seizures have not been controlled, but they are at a level that I can deal with.

Hopefully you can get control soon. In the mean time, hang tight and try not to let other people stress you out.

 

[Koda1021]

Thanks so much for the kind words, I already feel better knowing I'm not alone. It is amazing how little people understand about the illness, which is probably why (some) can be so crass about it. Initially, when I was being weaned off the Dilatin onto the Keppra, I was in a funk, and explained to co-workers how I had "rages" that were quite upsetting to me. One of the managers (who seems most insensitive) actually said to me "oh, I understand..my ex-husband was an alcoholic and used to have seizures and rages." I was SO furious, because it seemed to imply that I somehow (lifestyle) had brought this upon myself! I politely said "I was born with this, and this is not something I did to myself!" But she never got it.
My seizures seem to be at night mostly, so I never know when I've had one.

I do have one question...do you go to the neurologist when you think you've had one at night, or do you just get used to the "feeling"? Being so new to the diagnosis, I don't know if when I think I've had a seizure I need to follow up with my doctor or not, so forgive my somewhat uninformed questions!
But thank you so much, I'm glad to have found this forum!

 

[Nakamova]

Hi Alex, welcome!

In answer to your question: Now that you've been diagnosed, if you have a seizure, or suspect you've had one, you don't necessarily need to see the neurologist or go to an ER unless you've gotten injured during it. But it's a good idea to call the neurologist to talk about whether your medication might need adjusting. If you can, try keeping a seizure diary where you track any seizure activity including anything that feels like it might have been a seizure. It's also a good place to note anything that might be a medication side effect as well. Even though your seizures are the result of a congenital brain malformation, there may be triggers that contribute to when a seizure happens, so a diary might help identify these as well. (Triggers can be a variety of physical, physiological, or emotional stressors -- things like dehydration, fatigue, hormones, etc).

It might be worth getting some kind of letter from your neurologist that you can show to folks at work to explain what your seizure disorder entails. People are often more likely to respond to something "official." Dealing with the ignorance of others is no fun, but it's always worth a try to see if you can educate those with open minds.

By the way, congratulations on your double major!

Best,
Nakamova

 

[ddr1166]

Hi Alexandra! Welcome to the site. This has helped up TREMENDOUSLY in the last month or so.

Here's our story: husband had first seizure ever this last January, and he's 45. He's had two since. This has REALLY freaked us out - both me (who witnessed the first one, so I can relate to your mom's concerns), and him of course - like you. It's like - what the heck is going on? He has been really frustrated because of the inability to drive. Over time (once the seizures are controlled) and esp. if you have auras, the driving will return.

It's all very new territory - to us, too. One thing we have learned is that while you may not need to see the Neuro each time, like Naka mentioned - please keep a diary and try to note any triggers (stress, lack of sleep, low blood sugar being "biggies" for some folks). So sorry to hear about your job. Not sure how I'd handle that. You'll know over time, since you know who you work with.

The other thing we realized is that it's all about getting the seizures under control to improve quality of life. That may sound obvious, but to do that, many times you have to adjust dosages on your medications and try different ones - depending on your situation. It requires patience (and I'm not a patient person).

In our case, for example, husband had grand mal, and was started out on 1000 mg Keppra XR/day. Had a breakthrough seizure. Increased Keppra dosage to 1500 mg/day. Had another breakthrough seizure (much less severe). Increased his meds to 2000 mg/day. It's important to let the Neuro know - if only so he/she documents it and wants to increase your meds to find the "perfect" cocktail, so to speak.

That being said, there are lots of "non-drug" therapies out there. So after you adjust a bit mentally to all this, they are worth checking out. For example, in our case, since husband takes Keppra, he's on a B6 vitamin that's supposed to help. There's also some great diets that appear to work for some, and neurofeedback therapies. But each person's situation is different. There is no road map for this disease, I'm finding out.

The best thing is to have support of others in the same situation. This is by far the best site we've found!!

Hang in there and please don't get discouraged. Take it one day at a time and don't futurize. We're having a hard time dealing with others' perceptions, too, (not work related, though). Basically, people need to be educated so they understand.

Good luck and keep us posted. D in Dallas

 

[Endless]

Hi, Koda,

Welcome to the forum!

Gosh... first TC at 40. I'm imagining that has turned your life upside down. The meds aren't a picnic, either. <<<hug>>>

I'm so sorry you have an insensitive manager. Employers' attitudes are a big topic of conversation in here. Do you live in the U.S? If so, what size company do you work for? If in the U.S. and if a big company, the ADA laws are in your favor. Your doctor can help you write job restrictions and it's the company's obligation to show how it would be unreasonable to accomodate you. Otherwise they have to.

Most people don't understand how sleepy our medications make us. Or mad, or whatever yours do to you. (We're all different!) They think it's like popping an antibiotic with a little mac and cheese to prevent nausea. They just have no frame of reference. It's your choice whether you tell her or not.

What and whom to tell is another big topic of conversation in here. People usually don't respond well to hearing someone has epilepsy. Most just don't understand. Or don't want to.

Hang in there.

 

[Ann T.]

Welcome, Welcome, Alexandra! :-D

I'm in agreement with Endless ;-). If the company who employs you is large & says, "WE'RE an exception to the ADA." Then tell them, "You were supposed to be following the ADA 20 years ago..." You may come across a few gaping mouths, but tell them that it's impolite to stare & drool.

 

[Meetz1064]

OH, Ann

I LOVE your comeback. LOLOL. It's GREAT.

G'morning, Alexandra, it's nice to meet you. Well it sucks a hill o'beans having your first seizure at the age of 40. I'm like Epileric--I was born with mine. So, I've known nothing different. But, I'm also like you in that my E (all 4 types) is nocturnal.

I've done the pick and choose routine of whom I've told about my E--but my employers---mmmm, they knew. And, it was made clear that they needed to abide by the ADA. And they did. Surprisingly, I gave them little to worry about, the only things at issue were the EEGs I had to have on a more frequent basis in the last few years.

As Nakamova suggested, a seizure diary would be a great idea. All sorts of things can be the triggers for your seizures--lack of sleep, photosensitivity, foods, hormone imbalances, and more.

Glad to hear that the Keppra is working well for you so far. I'm one of those that it does not work well for.

On those days that you may have to work over, you may want to consider carrying a little pill case with an extra dose in it. I've done that for years. I actually carry a whole day's worth of pills with me........when I'm subbing I have several different times that I take pills at, so they're all in there, and I take them when needed.

I wish you luck, and welcome to CWE. Hopefully Buckeye or Arvind will remember the coffee. I burnt it again this morning--it was only decaf though.

Mr B has a wonderful house party going here, so kick your feet up and relax. Make plenty of friends, and check out all the nooks and crannies. Robin's our nutrition guru and Arvind's our rising doctor. The Kitchen and Library are full of information, and the Padded Room is great for venting when you need to.

Me, I'm a little off my rocker at times, but that keeps things lively, I think. LOL. :roflmao::roflmao:

Take care,

Meetz
:rock:

 

[Ann T.]

Hey, Meetz!

Happy to know I can keep things lively here at CWE, too. ;-) I wanted to ask where you purchased your pill case? I carry a day's worth of meds, plus my emergency 'melt in my mouth' klonopin for clusters in the smallest pill bottle my pharmacist had. It's small, yet gets in my way when I need to fish around in my purse for change. Thank you for the pillbox info, Meetz. Take care & keep us laughing! ~Ann

 

[RobinN]

Welcome Alexandra -
I am going to share a bit of information that I learned after my daughter had been on the E merry-go-round for a while. Everyone has a seizure threshold. Your's and my daughter's threshold for some reason has been lowered. There are ways to raise it, but you need to find what is triggering yours.

Working with my daughters nutrition has helped her seizure control dramatically. She is not taking meds and is 4 months seizure free at this time. When I didn't know that food sensitivities could cause seizures, she was having six a month.

 

[Meetz1064]

About

the nutrition--Robin's right. There is a tie to it, and I'm also one of the people to prove that. I went on the GARD diet a few years ago, and some of the issues that I was having at the time--seizure and migraine wise--lessened dramatically or went away. Now that I've been diagnosed as a celiac patient, where the diet is even stricter, I'm still finding I have really good control. Even with TONS of stress going on in my life right now.

@ Ann: As for the pillboxes--I actually get these cute little plastic things for the whole day that just manage to fit all of my days' meds in them from, of all places, Wal Mart. They also have (or did) some cute, tiny little ones, for when you don't need quite so many. I have a thing for bright colors like orange, purple, blue and green (darker shades) and have gotten them there over the years. They're only a couple of bucks--maybe less. The little gold ones have some neat designs, and are a bit more expensive..........maybe a buck or two more, that's it.

 

[Ann T.]

Meetz!

Thank you much for the pillbox info. I'll do my research & see what I can find.