struggling with newly diagnosed epilepsy at 30

[Army Vet]

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.

Hi kategraym,

I started having my seizures (complex partials) when I was 24 (back in 2009) and I am about to turn 34 and I still don't have them under control. When I first started having them, I got them under control within 6 months and started driving again. However, 4 years later they came back and I still don't have them under control and that's after having a VNS put in. Come June, I will have gone 5 years without being able to drive.

Trust me. I definitely feel your pain AND anger and have gotten depressed many times (ie is it EVER going to STOP?!?!). I had my life all planned out and was going to finally be able to be independent and get away from my parents, yet here I still am at 33 years old. I was in the military and going to college and was going to be in civil engineering construction.

Nope. Now I have to worry about medical bills and how to get from different places without being able to drive. Changing careers. Having side effects from both the medications and the seizures (ie memory loss; drowsiness etc). Being confused and overwhelmed of what's going on and what is going to happen next.

Meanwhile, everyone else you know continues on with their lives. It's like, "HEY! DON'T FORGET ABOUT ME!!"

Point being, as someone who has dealt with it from his mid 20s to his mid 30s (and still ongoing), I totally understand your pain/anger and would say that it is reasonable to feel unhappy. Especially since our condition is so complicated and we don't even know what's causing it and when/if we will have another episode.

 

[kategraym]

Hi kategraym,

I started having my seizures (complex partials) when I was 24 (back in 2009) and I am about to turn 34 and I still don't have them under control. When I first started having them, I got them under control within 6 months and started driving again. However, 4 years later they came back and I still don't have them under control and that's after having a VNS put in. Come June, I will have gone 5 years without being able to drive.

Trust me. I definitely feel your pain AND anger and have gotten depressed many times (ie is it EVER going to STOP?!?!). I had my life all planned out and was going to finally be able to be independent and get away from my parents, yet here I still am at 33 years old. I was in the military and going to college and was going to be in civil engineering construction.

Nope. Now I have to worry about medical bills and how to get from different places without being able to drive. Changing careers. Having side effects from both the medications and the seizures (ie memory loss; drowsiness etc). Being confused and overwhelmed of what's going on and what is going to happen next.

Meanwhile, everyone else you know continues on with their lives. It's like, "HEY! DON'T FORGET ABOUT ME!!"

Point being, as someone who has dealt with it from his mid 20s to his mid 30s (and still ongoing), I totally understand your pain/anger and would say that it is reasonable to feel unhappy. Especially since our condition is so complicated and we don't even know what's causing it and when/if we will have another episode.

Does the anger ever have reprieve? I’m in therapy. I’ve had issues with depression for a long time. I feel like i just want to be better and i get so mad because nothing is the same. My job isn’t even the same. If I’m five seconds late they get worried it’s because I’ve had a seizure. It comes from a place of love. I know that. But. Like. FFFF that. I am angry I wasn’t diagnosed as a child because I should’ve been.

That said, I have had so many experiences I likely wouldn’t have if I’d been diagnosed properly. It’s such a catch 22. But. That’s all rational. The anger I feel overwhelms me and it isn’t rational. Does it ever fade?

 

[C0urt]

i guess amnesia helped me, i had so little of before to compare it to, everything was new so i was really starting over, so there was nothing to be mad about, i might as well be happy to be alive, and be happy for another day, and when you read some of the horror stories on here it quickly becomes obvious it could always be worse, so i might as well be happy about that, and be happy there are no curling irons in my life shit

 

[Army Vet]

Does the anger ever have reprieve? I’m in therapy. I’ve had issues with depression for a long time. I feel like i just want to be better and i get so mad because nothing is the same. My job isn’t even the same. If I’m five seconds late they get worried it’s because I’ve had a seizure. It comes from a place of love. I know that. But. Like. FFFF that. I am angry I wasn’t diagnosed as a child because I should’ve been.

That said, I have had so many experiences I likely wouldn’t have if I’d been diagnosed properly. It’s such a catch 22. But. That’s all rational. The anger I feel overwhelms me and it isn’t rational. Does it ever fade?

That I don't know (ie if it will ever fade). Depends on if you will accept what you typed just above, "It comes from a place of love." Wouldn't it hurt just as much, if not more, if they DIDN'T check on you and then you were to have an episode and then they just left you there?

That's the hardest part to all of this. Accepting that you have a problem in which you had no responsibility in creating and there also seems like there is nothing that can be done about it (ie WHAT CAN I DO ABOUT IT?!?!) Meanwhile, everyone (that loves you) is being overprotective and treating you like a kid like you have to hold their hand to cross the street etc.

What. You're saying I'm not good enough (ie mature) to cross the street by myself?!?! C'mon!! It can really hurt one's self-esteem. That's what has been driving me crazy for the last few years. I can't drive or anything fun, but I'm stuck at the house all day, every day doing responsible chores (ie laundry, dishes, trash, pets, my dad's caregiver, going grocery shopping with my mom etc). However, I'm working on changing that...

 

[C0urt]

yeah the over protective bit gets old quickly. sometimes you have to be proactive and just do stuff remind people you are an adult

 

[Jun]

Hi Kate,

Welcome to the CWE forum!

Im sorry to hear about your epilepsy diagnosis. Its not an easy pill to swallow, thats for sure. I hope you are okay from your accident though...that must have been scary!

What you are going through and how you are feeling are totally relatable to many people of here, including myself.

For me, I had my first seizure when I was in grade 9, beginning of high school (around the age of 14), and now Im turning 34 this year. It was a hard pill to swallow back then, and its still hard to deal with. Its derailed how I've had to think and do life....driving, career, relationships (friends, family, those you love), taking care of your mind and body first.....epilepsy makes you have to deal with everything. Epilepsy and the hardships that you may have to go through are dynamic

As you mentioned that sleep deprivation may be a trigger, there are also many other triggers. For example, caffeine I try to stay away from...mainly coffee, blinking lights, especially strobe lights, not skipping meals (maintaining blood glucose), and the list can go on.

Since epilepsy is something that affects the brain, as well as the anti-epileptic drugs that go along with it, it can affect many areas of your life.

The fact is, everyone reacts differently to different medications, so Im sure many people on here will tell you NOT to follow the same path just because the symptoms are the same, but that said, CWE is a place of much knowledge and a big support for what your experiencing.

t is well known that Keppra has certain side effects called "Keppra rage", which may be affecting your behaviour. Obviously I can't speak for your health, but for many, treating epilepsy is not really a cure. In many cases, there's no magic pill that gets rid of seizures all together, and also, the anti-epileptic drugs (AED's) usually come with various side effects, depending on which one you take...for example, for me, the Frissium (Onfi/Clobazam) that I take makes me drowsy.

The story can go on, but Im not here to scare you.

This forum is here to support you though, thats for sure.
The good days, the bad days, the days you just feel to complaining to someone....you will find like minded people on here.

Please feel free to reply and I will do my best to support and give any knowledge/experience that I have!

Take care

 

[kategraym]

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

I have temporal lobe epilepsy too. I also have adhd. i've been diagnosed adhd for a long long long time. I've been off my meds for a while, I never liked taking them. But, I'm now so far into Keppra usage that I'm wondering if I should be on them again. My depression is getting worse and worse. I'm anxious all the time. I'm back to full time work, and i'm back to 85 hour weeks. It's really just not going well. I'm afraid all the time. I don't get why this happened to me, and it's making me just depressed as hell. And, as was mentioned before by others, my friends HAVE had weird reactions to what is happening. Disclosing it to first aid at work has even been hard. I think I'm really struggling and I can't tell what is happening anymore.

Does anyone have adhd AND epilepsy? I think my adhd meds would help some of my mood issues, but I'm afraid to even try now that I'm finally back to driving. I've also had 2 partials in the last month... or anxiety attacks, I can't tell. But. I'm worried. Any advice, I'lI take it.

 

[kategraym]

Hi Kate,

Welcome to the CWE forum!

Im sorry to hear about your epilepsy diagnosis. Its not an easy pill to swallow, thats for sure. I hope you are okay from your accident though...that must have been scary!

What you are going through and how you are feeling are totally relatable to many people of here, including myself.

For me, I had my first seizure when I was in grade 9, beginning of high school (around the age of 14), and now Im turning 34 this year. It was a hard pill to swallow back then, and its still hard to deal with. Its derailed how I've had to think and do life....driving, career, relationships (friends, family, those you love), taking care of your mind and body first.....epilepsy makes you have to deal with everything. Epilepsy and the hardships that you may have to go through are dynamic

As you mentioned that sleep deprivation may be a trigger, there are also many other triggers. For example, caffeine I try to stay away from...mainly coffee, blinking lights, especially strobe lights, not skipping meals (maintaining blood glucose), and the list can go on.

Since epilepsy is something that affects the brain, as well as the anti-epileptic drugs that go along with it, it can affect many areas of your life.

The fact is, everyone reacts differently to different medications, so Im sure many people on here will tell you NOT to follow the same path just because the symptoms are the same, but that said, CWE is a place of much knowledge and a big support for what your experiencing.

t is well known that Keppra has certain side effects called "Keppra rage", which may be affecting your behaviour. Obviously I can't speak for your health, but for many, treating epilepsy is not really a cure. In many cases, there's no magic pill that gets rid of seizures all together, and also, the anti-epileptic drugs (AED's) usually come with various side effects, depending on which one you take...for example, for me, the Frissium (Onfi/Clobazam) that I take makes me drowsy.

The story can go on, but Im not here to scare you.

This forum is here to support you though, thats for sure.
The good days, the bad days, the days you just feel to complaining to someone....you will find like minded people on here.

Please feel free to reply and I will do my best to support and give any knowledge/experience that I have!

Take care

I'm terrible at remembering to eat. It's even worse when i'm tired. My eating habits are really bad. I didn't realize how much it can effect this. I know it impacts my depression, but I didn't realize it also impacts this.

 

[Sabbo]

Hello & welcome to the CWE. Ive had had epilepsy since childhood. I only had simple partial seizures until about 20 years, when I began having complex partials, too. It wasn't diagnosed until I was in my teens, after I had some tonic clinics. Thankfully, I haven't had any more of those. Currently I'm taking 400mg each of Topiramate & Zonisamide, but I still average 1-3 breakthroughs/month. I have tried every AED out there.

 

[kategraym]

I've never been good at remembering to eat, or at sleeping. I've been an insomniac since I was small. I've never been good at eating consistently. I always thought both were related to my adhd, because when I took those meds for like six months (I had a phase where I was going 90 hours without sleep because of death of a loved one) I seemed to sleep more and I felt more regulated in terms of food. Now, I still find myself hungry but like it doesn't matter the same way. Like I can ignore it. My parents always thought I was hypoglycaemic. But I just don't get it. I need to be more regulated because my depression is out of control. I've been self harming. I have very bad thoughts. Even my therapist wants me to get back on adhd meds or on an antidepressant, but i've had awful reactions to antidepressants, which I believe is related to having adhd.

 

[Fedup]

kategraym

Welcome to C.W.E. you have found a family who actually understand and have gone through all you are going through. The anger is probably the Keppra but it is probably a little of "why me" as well. Living with epilepsy is a challenge and so is the first time you get told it. The anxiety and lack of sleep has a lot to do with accepting you have epilepsy and understanding epilepsy, neither of which is easy (that is just my opinion, I am no doctor)

Its good that you are coming up on the time you can drive again it will definitely make your life easier but you are wise weighing up if it is safe for you or not and not just you but others as well. That is probably the hardest part of life coming to accept what we can or cannot do, what is safe for us to do against what we want to do. Nothing about any part of this is easy but you will realise this is your life and your to live, epilepsy does not decide what you do or the person you are, these are your decisions in life and nobody can make them for you or make you accept or understand epilepsy this has got to be your choice. Always remember this is your life and yours to live and enjoy, I have had epilepsy all my life, I have got married to a beautiful Lady, epilepsy did not decide I was in love or if I could get married, I try to enjoy life, ok I have a problem, an annoying one, I have epilepsy and I look after it so now I enjoy myself the best I can, just like everybody here and like you will do as well.

 

[Loopy Lou]

Until i read this thread, i didn't realise there were so many people like me who were diagnosed later in life. It's good to know there's other people who know what it's like, you don't often get that feeling in offline life.

 

[kategraym]

I almost had a car accident on the way to work yesterday morning. Totally not my fault. It somehow made me more confident driving because I prevented it, but it was the first thing I've had since my seizure accident. It was nuts.

And Loopy Lou, the more I talk to others with epilepsy, the more people I'm meeting who were diagnosed outside the "normal" age ranges.

 

[Sabbo]

I learned how to drive when I was in high school, but never got my license. I can still recall the day I had my last behind the wheel practice. It was just before class began, & I had a simple partial seizure. I decided then that it would be better for the safety of both others & myself if I didn't drive.

 

[C0urt]

certain drugs make me unhappy, and i prefer quiet places. i am am unhappy about losing my life gaurd certs and my motorcycle dl. past that. most things are expendable

 

[Sabbo]

I had 2 complex partials last Sunday. I had one in the morning, barely 2 hours after taking my morning dose of meds! My husband said I got an odd look on my face, then began rocking back & forth. The second occurred later in the afternoon, & was worse, because I wet myself.

 

[RavensLight09]

Do you keep seizure journal. My doctor insists because I have so many CP clusters.. Even if it isn't you writing it needs to be accurate. Eventually I by my own accord started KETO and it worked for me. Do I still have seizures, yes, do I have them daily where I am being rushed to the Er no. Nor is my doctor wanting to cut open my head. Demand 1000% more excellence from Your neuro than you demand fro. Yourself. My doctor was fine filling me with pills and cutting my head but never trying the first step in my belief only...none of this is medical advice. But in my opinion diet has a huge impact. Even my doctor said those who have a DNA of majority European probably have a gluten sensitivity.
good luck

 

[Sabbo]

Yes, I keep a journal. I record the date, time, & type of seizure. ln the case of complex partials, I ask witnesses what I did during it. If I feel one occurred while I was alone, I note was different from earlier & any injuries I may see.