struggling with newly diagnosed epilepsy at 30

kategraym

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in june i totalled a car and woke up covered in glass and blood. apparently i had a massive seizure while driving and crashed into a parked vehicle (thank god, no one was in it). today i officially got my epilepsy diagnosis, which took some more testing because it apparently has a weird presentation and i'm just not doing well. it's hurting my entire life. my career. it's compromised everything. the drug (keppra 1000mg/2 times a day, the only dose that's helped) has some weird side effects and i'm already really prone to depression.

i work on a tv show and we shot a seizure scene last week and i just couldn't deal. i'm hoping that by registering here someone can talk to me about this because i can't explain how seizures feel and while i'm in therapy, i feel like no one truly understands.
 

Nakamova

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Hey kategraym, welcome to CWE!

You've come to the right place, people here "get it." Epilepsy sucks all the time, no doubt about it, but I think there's a certain kind of despair that can take hold when the diagnosis is brand new. The uncertainty about the future, about the meds, about the side effects, about whether you can drive, etc. can make it extra-hard to get a handle on things.

But it gets easier, at least it did for me. When my seizures arrived (out of the blue when I was 35) I was dealing with the end of a ten-year relationship, and looking for a new apartment. (I had the seizure in the realtor's office.) The timing couldn't have been worse: All of sudden I couldn't drive, I couldn't pack or lift things for the move because my back hurt so much, I was staggering around because the dose of my meds was too high. I was going to be living alone. And I had bad insurance, which didn't quite cover the ER visits, the tests, the neuro, the meds...

Two things helped me through that first rocky patch: 1. Asking for help (something I wasn't good at before) and 2. Asking a lot of questions. Finding CWE really helped -- I learned a lot about epilepsy and, maybe more importantly, about people with epilepsy. CWE members showed me that an epilepsy diagnosis wasn't the end of the world. I hope you can find your way to that perspective too.

In the meantime, this is a great place to vent! Go for it!

Best,
Nak

BTW, is Keppra the only med you've tried? If so, eventually you might want to talk to your neuro about trying something that is less likely to mess with your moods.
 
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kategraym

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thank you. two of my friends made me seek a therapist shortly after my first seizure in june and before my subsequent one. but yeah. asking for help is hard. and it's hard to explain what it feels like to people who haven't had a seizure before. i was having what i now know were partial seizures since last december, but i assumed they were anxiety attacks and ignored them. that's what i had right before i blacked out.

i've always been someone who is sort of a lone wolf who has lots of acquaintances. this has been a bizarre learning curve in who is and is not an actual friend. this has just been very difficult, especially with my job, where i normally work 90 hours a week and have been reduced to 45.
 

Nakamova

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Some of your acquaintances may be freaked out by epilepsy (a lot of folks are). I've found myself explaining over and over again all the different kinds of seizures, and also what someone should do if they see a person having a seizure. There's a lot of misinformation out there. I didn't know this stuff before I had my seizures, so I don't expect others to either.

I will sometimes compare epilepsy to asthma or diabetes -- a chronic disorder that can be serious and requires medication and vigilance, but doesn't define the person who has it. Or I'll call it a "seizure disorder" instead of epilepsy, since that's less stigmatized.

It's hard to have your job change so dramatically (90 hours a week is crazy! Even 45 can be a lot.). But clearly you have skills and experience that will benefit you if down the line you want to find a different line of work. Hang in there! Make sure to give yourself time to heal. And make sure to give yourself credit for the work you're already doing to cope and be proactive about your health.

You might find this thread helpful:
https://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
 

Cint

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Nakamova said:
Some of your acquaintances may be freaked out by epilepsy (a lot of folks are).
When I had my first tonic/clonic seizure, I was visiting my parents and, yes, they were definitely freaked out. I had been having CP before and the stupid dr. said I was hypoglycemic so he put me on something for that. Of course this happened way back in 1980 and I was 23 years young.

Nakamova said:
I will sometimes compare epilepsy to asthma or diabetes -- a chronic disorder that can be serious and requires medication and vigilance, but doesn't define the person who has it. Or I'll call it a "seizure disorder" instead of epilepsy, since that's less stigmatized.
I also have Diabetes now, so I do not let Epilepsy nor Type 1 Diabetes define me, although I have to take insulin shots AND AEDs. Plus an anti-depressant. And I don't mind telling folks that I have epilepsy. It is what it is, as my son always tells me.

Nakamova said:
It's hard to have your job change so dramatically (90 hours a week is crazy! Even 45 can be a lot.). But clearly you have skills and experience that will benefit you if down the line you want to find a different line of work. Hang in there! Make sure to give yourself time to heal. And make sure to give yourself credit for the work you're already doing to cope and be proactive about your health.
When I first started having seizures, I was working in the airline industry. I wanted to fly around the world and see lots of sights. Plus I married a pilot. Then I started having those seizures and had to stop my "dream" job. I haven't had a good job since because of my seizure history. But I have raised two children.

Hang in there and things will eventually settle. Tell your dr. if the Keppra keeps you depressed because that is a side-effect of this drug. There are many other AEDs you can try.
 

Porkette

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Hi Kategraym,

Welcome to CWE! I've had to deal with epilepsy for 47 yrs. and I had 2 brain surgeries to help reduce my seizures. Just like you I tried Keppra and the drug made me very angry and it increased my seizures.
Over the yrs. I have found that a lot of my family and friends wouldn't accept me anymore do to my seizures so I made it a point to teach them about it and it made a big difference.
My advice to you is to see an Epileptologist which is a Dr. that specializes in epilepsy. Along with that ask the Dr. to do a DNA test on you where they will draw blood and get some salvia from your mouth. All of that is sent to the lab where they can see the amount of enzymes in a persons liver along with seeing their body chemistry by looking at all of this the Dr. will be able to find the best seizure med for you with the least side effect. I had to have this done after trying over 10 different seizure meds and the DNA test showed I was drug resistant to all seizure meds out on the market now.
What surprised me is all the famous people in the world who have had epilepsy like Elton John, Prince, Einstien, Edgar Allen Poe and many more people.
I got a job working in special Education and some of the students have neurology problems or seizures. I've been very open with them about my epilepsy along with the staff I work with and now each yr. I teach about epilepsy and I've even been asked to speak at a college a couple of times.

Just be sure to get enough sleep and don't get stressed out these are 2 of the main things that can trigger seizures. Also hormonal change can sometimes effect some people so you may want to keep a calendar and write down any time you have a seizure along with the time of seizure you had, by doing this the Dr. may see a pattern in your seizures. Don't let the epilepsy get the best of you. Many people still lead a normal every day life. I wish you the best of luck and May God Bless You!

Sue
 

kategraym

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Hi Kategraym,

Welcome to CWE! I've had to deal with epilepsy for 47 yrs. and I had 2 brain surgeries to help reduce my seizures. Just like you I tried Keppra and the drug made me very angry and it increased my seizures.
Over the yrs. I have found that a lot of my family and friends wouldn't accept me anymore do to my seizures so I made it a point to teach them about it and it made a big difference.
My advice to you is to see an Epileptologist which is a Dr. that specializes in epilepsy. Along with that ask the Dr. to do a DNA test on you where they will draw blood and get some salvia from your mouth. All of that is sent to the lab where they can see the amount of enzymes in a persons liver along with seeing their body chemistry by looking at all of this the Dr. will be able to find the best seizure med for you with the least side effect. I had to have this done after trying over 10 different seizure meds and the DNA test showed I was drug resistant to all seizure meds out on the market now.
What surprised me is all the famous people in the world who have had epilepsy like Elton John, Prince, Einstien, Edgar Allen Poe and many more people.
I got a job working in special Education and some of the students have neurology problems or seizures. I've been very open with them about my epilepsy along with the staff I work with and now each yr. I teach about epilepsy and I've even been asked to speak at a college a couple of times.

Just be sure to get enough sleep and don't get stressed out these are 2 of the main things that can trigger seizures. Also hormonal change can sometimes effect some people so you may want to keep a calendar and write down any time you have a seizure along with the time of seizure you had, by doing this the Dr. may see a pattern in your seizures. Don't let the epilepsy get the best of you. Many people still lead a normal every day life. I wish you the best of luck and May God Bless You!

Sue

Thank you, I appreciate all the your replies. Lack of sleep is what my current doctor thinks triggered it because of my work hours. I was working 16-19 hour days with sometimes as little as 6 hours of turnaround. That's why I'm reducing, but it's very frustrating because my career is really hour dependent. Working in film isn't even a little bit part time, especially with my job.

I do have a lot of support at work, but film jobs vary year to year. It's hard feeling too weak to do what used to come so naturally.

My Neuro is referring me to an Epileptologist, so hopefully I can explore that entire concept.

Thank you again.
 

Loopy Lou

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I had my first tonic clonic seizure in my early 20s, i'd just got my driving license and had saved up for lessons, then had to surrender it to the DVLA. I get a free bus pass though, so that's something!

I pretty much ignored my first seizure as i was living in rural ireland at the time away from my family, it was only after i had one after moving back to england i decided to get it looked into. Like you, i'd been working 90 hour weeks, and i think that tipped me over the edge. Eventually i had to cut down my work hours til i was only doing 16 and then ended up having to give up. I did end up going back to university though and was really proud of getting my bachelors.

I'm still trying to find the right medication to completely control it. Have been seeing an epilepsy specialist recently and he thinks there's a good chance that i've had epilepsy since i was a child, in the form of absences and partial seizures, which i also still get.

It can be frustrating. There's not only the epilepsy to deal with, i find that dealing with side effects can be difficult for both us and families, for example ones that make you snappy, or tired, or depressed. Sometimes even those close to us don't fully understand, but it's important to educate other people as we go along.

When i was first diagnosed (literally the day after), i remember having a team meeting at work and they were talking about "brainstorming" ideas, to which someone of course said "you can't say that, it's offensive to people with epilepsy!" and everyone turned to look at me. I was like "Don't ask me, i've only had it one day" :roflmao:

It can be hard to adjust to less working time, which of course means less money, but you have to take your health into account. You've made quite the career for yourself there, but there's always the option of changing your field slightly, it's worth thinking about.

Sorry, this was rather longer than i meant it to be! Welcome to the site anyway, we're a friendly bunch here :)
 

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Hello & welcome to the site. I've hade epilepsy since childhood--but ,the seizures weren't diagnosed/ recognized until 1987. I suddenly had 3 or 4 Tonic Clonic seizures, and then during one of the EEGs, my doctor realized that the weird feelings I complained of were Simple Partials. About 20 years ago, I began Complex Partial, too. I haven't had any more Tonic Clonics.
When I only had SPs, life wasn't too bad. They didn't seem to occur too often. I learned to drive, but when an SP occurred right before my final behind the wheel practice, I decided not to risk driving. The CPs have caused me to injure myself many times. I've burned myself (2nd & 3rd degree) at least 8 times. I stopped trying to work a few years after college because of the CPs--one nearly caused me to fall onto the train tracks.
Despite trying every AED available for the types of seizures I get, I still average 1-3 breakthrough seizures /month. Currently, I'm on 400mg/day Topamax, 300mg/Zonegran, & 1mg/day Folic acid.
 
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malfeasant67

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Hi kategraym,

I haven't been on here that long, but I do quite a bit of research and I read about "what's wrong with me" not only on here, but on epilepsy.com and other sites. I love coming here, because it takes all kinds. We are sort of a strange family; we are bonded by this inexplicable THING that we can't control, even with medication. (I think that is what is the most frustrating part: not being able to control it.) I suffered my first seizure at 20; I'm 51 now. I have lost my license, have been in accidents, have been to the hospital countless times, and thankfully no one else has gotten hurt in the process. I have taken dozens of different medications, taken dozens of different tests....and I still have yet to figure out what works 'the best' for me. Just know this: we DO understand. We DO sympathize. WE GET IT. Your frustration is shared by all of us.
Continue with your therapy, and be ACTIVE IN YOUR HEALTH CARE! You got this :)
 

kategraym

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Does everyone else feel like... overwhelming anger? I feel like sometimes it hits me that my life was fine a year ago and I got to be 30 and then suddenly I am so enraged. My entire life changed. I can't tell if it's just a side effect of keppra or if it's just post seizure me.

how do you deal with the anger? that is the thing that is hardest for me at this point. especially because in my line of work.... well.. it's all even more complicated.

I appreciate all the replies. very much.
 

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Hi kategraym,

When I was on Keppra it gave me a very hot temper and I got off the drug within a month. I understand it's hard to adjust to the change in your life but I found listening to music and writing short stories and poems helped me get rid of my feelings. Today I work with kids who have learning or emotional problems so I can see how we can connect as I look back into my past as a kid. I wish you the best of luck and May God Bless You!

Sue
 

Loopy Lou

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Keppra can cause anger (well known as Kepprage), but your situation will also do that to you. There's many times over the last 10 years or so where i've got angry or upset over feeling like i'm missing out, and that my 20s were pretty much wasted. It can be a mixture of both.

I didn't get anger on Keppra, but i do on my new drug Briviact. That was kind of an all consuming "i hate everyone and everything" anger though, making me snappy at the slightest thing, although it did lessen a bit as i got used to the dosage, now i just have much less patience than i did before. Since then i've been taking it very slowly at increasing the dosage to give my body time to get used to it.

Talk to your neurologist about it if you can, and see what their thoughts on it are. It's a confusing and often frightening time, and getting used to your new diagnosis and all the things you didn't have to think about before but now do can take its toll.
 

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Keppra is known for causing anger issues, & was one of the meds I couldn't use--it caused such severe cramps that I was doubled over. Anger hasn't been an issue for me with any other drug I have used.
 

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Does everyone else feel like... overwhelming anger? I feel like sometimes it hits me that my life was fine a year ago and I got to be 30 and then suddenly I am so enraged. My entire life changed. I can't tell if it's just a side effect of keppra or if it's just post seizure me.

how do you deal with the anger? that is the thing that is hardest for me at this point. especially because in my line of work.... well.. it's all even more complicated.

I appreciate all the replies. very much.
IMO, it isn't just the Keppra, although anger IS a side effect for that drug, as well as many other AEDs.
My ENTIRE life changed, too, years ago when I was diagnosed with E (I was 22 yrs. of age and starting my adult life). I have Temporal Lobe Epilepsy, stemming from my Left temporal lobe, brain surgery. There is a link between mood disorders and TLE.

I went to a neuropsychiatrist to help me with the mood disorder/anger/depression that I had long before starting Keppra.

Here is a great website that answers lots of questions on this issue.

https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior
 
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kategraym

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I've been told my entire life I have ADHD, and I have always had weird drug reactions. Alcohol is an upper, caffeine or cocaine was a downer. Maybe this is why I respond to Keppra this way? I don't know.

Will definitely be asking my doc next appointment now that I know the rage thing isn't just me.
 

Porkette

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Hi kategraym,

You mentioned how you are tired a lot. You may want to ask your Dr. to do a sleep study on you. I had one done along with an e.e.g. at the same time and the Dr. found I was having seizures in my sleep about 2 hrs. before I got up in the morning. I was then put on vimpat and thank goodness those seizures stopped. Take note if you feel really tired in the morning when you get up and if you do you may want to mention this to your Dr. and get the test done. I wish you the best of luck and May God Bless You!

Sue
 

Sabbo

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In my case, family--my husband, especially--often tell me to sleep more (I average 6-6.5 hours) hoping that it will prevent seizures. I constantly explain that I'm a deep sleeper, & can't force myself to sleep more. Once asleep, I wake up within 6.5 hours, even without an alarm. Sometimes, I actually sleep less than 6 hours due to how deeply I slept.
 
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Cint

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You mentioned how you are tired a lot...........
Take note if you feel really tired in the morning when you get up
Her dr. already said it was due to lack of sleep...... that would make anyone tired, and thus, bring on seizures.

Porkette said:
and if you do you may want to mention this to your Dr. and get the test done.
Sue
I don't see a need for this test. Like I've said before, some of the meds can make one extremely tired.
 

kategraym

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I think at this point my biggest issue is anxiety, which is making my insomnia worse. I'm in therapy for it and I'm trying new things. But it's really hard.

And I'm coming up on the time when I might be able to start driving again, but I'm really afraid to drive again even though it would make my life infinitely easier. I'm just afraid to.
 
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