I just need someone to understand

[ktrer]

Hi,
I am relatively new to seizures. I had my first one at 23 years of age last March, while driving home from work. They did all of the testing (twice because I went for a second opinion) and everything looked okay, so they took me off of the Keppra. In July I had another one. I am now on Keppra every day and I am waiting for the anxiety and stress to go away. I was told that the longer I go without having a seizure, the easier it will get. But, because I don't have any kind of aura or anything, I'm afraid everything means I'm going to have a seizure. By everything, i mean I drink too much caffeine and feel like I'll have one, one glass of wine and I feel like I'll have one. My poor boyfriend hears "am I going to have a seizure" or "I think I'm going to have a seizure" literally every day. I am so full of anxiety and stress and just sadness because it has changed my life for the worse and I can't seem to calm myself down, and stress is a trigger for seizures, so that only makes it worse.

Someone, please, does it get easier?

 

[masterjen]

Welcome to the forums!

Believe it or not, it can get easier. I say can, because admittedly some people do have a hard time, as you will gather from reading around the forums. It is important to note that for many people they start medication and may never have a seizure again; in other words the medication is doing its job.

A diagnosis like epilepsy can be a real kick in the butt to grow up and take responsibility for oneself in an awful hurry. First and foremost is taking care of yourself and avoiding potential triggers for seizures until you learn more about your own condition and seizure triggers. Sounds like you already know what some of these can be, like excess caffeine and alcohol. Other potential triggers are lack of sleep, aspartame, certain medications and recreational drugs, and of course stress is one for many people as well.

It is important to keep yourself safe until you learn more about your own condition and determine exactly what the medication will do for you: avoid situations where your life or the lives of others may be at risk should you have a seizure, such as driving, swimming (including taking a bath), climbing tall ladders, hiking trails on cliff-sides . . . you get the idea. Have the hot water temperature reduced in the shower so in the event of a seizure in the shower you will be bruised but not burned.

Keep track of your seizures, medication side effects if any, any odd sensations, etc. in a diary or journal so you can discuss them at your next neurologist appt.

And last of all, keep checking by here as well as other topics and you will meet lots of great people who will support you and answer your questions as best they can.

 

[Fedup]

ktrer

The answer to your question "does it get easier" well yes and no, by that I mean yes you start to realise this is your life and you are going to live it and eventually you kind of put it on the back shelf but you never forget about it, you cannot afford to, maybe you do drink to much caffeine, I know I do but I am cutting down and yes the part "am I going to have a seizure" or "I think I'm going to have a seizure" this is you right now being protective of yourself but being worried. The worry of a seizure is ok but you have to try to calm down like you said you are full of anxiety. Concentrate on your relationship and your life you will never forget or be unaware but it will help you to live and look after yourself.

 

[Penny]

Well said Fedup!

 

[Cint]

Someone, please, does it get easier?

Hi ktrer,

I've had E for over 30 years. I have CP and TC seizures. For me, it hasn't necessarily been any easier over the years, but it has become a part of my life so I have learned to make the adjustments as needed.
Find a local Epilepsy Foundation and get some info about seizures and what to do/not to do and types of seizures. Education about epilepsy/seizures is the key to dealing with life with E.

 

[N Sperlo]

Hey ktrer.

Just like Cint said, it doesn't necessarily get "easier". You get used to it. Its not fair and it shouldn't have to be that way, but thing will be better. You'll learn about what epilepsy is in your life and you'll lean coping skills. If that is your idea of "easy", I guess so, but either way, it will get better.

CWE is here to help make things better.

Good luck.

 

[arnie]

Hello and welcome ktrer! I had my first witnessed seizure at age 23, just like you. I say "witnessed" because I easily could have had unwitnessed or unrecognized ones for years before that. In any case, I've been on meds for 33 years now, and continue to have several hundred complex partial seizures a year. I have never found anything that is a definte seizure trigger for me. I recently had a VNS placed and I'm hoping that will reduce my seizures eventually. In any case, I have to say that I agree with what the others have already said. It gets to be a part of your life and a part of who you are and you will learn not to be stressed out by it. I can do pretty much whatever I want to, including drinking alcohol (in moderation) and caffeine. If I didn't tell people they would probably never know I have epilepsy.
It's a very complex condition, and unlike most medical conditions which are purely physical, epilepsy can directly influence how your brain works, and affect your whole mental and psychological self, and indeed can help form your personality, both for good and bad. There was recently a thread on here about would you give up epilepsy if you lost the things that it had contributed to your "self", and many of us said that we would not. It really weaves itself into who you are. Don't let that scare you, though. I hope what I have said makes sense. I've been kind of tired and introspective for the last couple of weeks so maybe my thoughts are bit unfocused. In any case, you will come to terms with it, I'm sure! Stay here with us, and we'll help you out on the journey.
Carry on!

 

[Cint]

There was recently a thread on here about would you give up epilepsy if you lost the things that it had contributed to your "self", and many of us said that we would not. It really weaves itself into who you are.

Like Arnie, I've had E for 30 + years and I too have the VNS. However, E has not contributed to who I am. It has stolen my identity and robbed me of my life as "normal". But I have more than just SP and CP seizures, so I would most definitely give it up in a second. But I guess that is just me.

 

[Belinda5000]

I've had E for 50 years and I have not let it steal my identity.There is much more to me then just sz's.If I have a sz I have one and that's life. I refuse to sit at home wait for the next one to appear.I was 2 when my sz's started.Been on 22 to 23 AEDs.
If someone can't accept my sz's they can't accept me I'm not controlled and never have been.

You can't let E control your life there is much more about you than just epilepsy, that's just a few minutes when you have a seizure I know It's been there with me for a long time.

 

[Cint]

You can't let E control your life there is much more about you than just epilepsy, that's just a few minutes when you have a seizure I know It's been there with me for a long time.

Well, sure there is much more to life than E and it has been with me for a long time. However, in my case there has been much more to having a seizure last a few minutes and then get on life. For some with TLE, it isn't that simple. Mine started when I was 22 and I had a career. I was able to drive back then. Now that is all gone. Plus my hormones played a huge role in my seizures, which they do for a lot of women. And that brought on a lot more problems, too, including depression, which spiraled out of control and led to many more problems. So yes, there is much more to life than just epilepsy. Many more problems......

 

[kirsten]

I was diagnosed in my early twenties, when I was only aware of tonic clonic seizures--the rest of the awareness came later. Let me break up the difficult parts into more manageable portions:

-Abject terror about having seizures: my first tonic clonic was just plain terrifying because I was with Israelis who didn't speak English very well. I woke up being hauled out of the back seat of a car at the ER. They were putting me into a wheelchair and I had no clue what was going on. Of course I told them I could walk. First I tried to lift my body with my arms but they didn't work at all and then I tried to stand and my legs didn't work either. I asked my friend what had happened and he said I had 'fallen down.' Since I seemed to be completely paralysed, I thought I'd fallen down the stairs and become crippled. Even the doctor didn't tell me what had happened until she had me on the bed and had given me a shot, so it was just terrifying. My second seizure was less terrifying. All I knew was that I had bitten my tongue really badly. I got a fright when the doctor suggested I'd had a seizure. For the first few years, when people told me I'd had a seizure, it was scary waking up but I quit being scared of seizures before they happened--I was only scared afterwards. Now, it's run of the mill for me and I feel dread about the consequences--days of feeling horrible. But that's it. When I come to, I'm always amazed I've had a seizure, as if it's the last thing in the world that could possibly happen to me. But not all that scared. So the terror went away for me, and I'm certainly not scared of partials or absence seizures. I still feel embarrassed when they happen around people but, again, I feel that that is something I will eventually learn to cope with more healthily. I don't have auras as warnings of tonic clonics and I never, ever have, and I can honestly say that today I don't worry about them. I prepare for them, with the way I arrange my home and cope with safety issues like driving but I have the attitude that if I get really badly injured over something i failed to prepare for, too bad. I can't spend my whole life focusing on avoiding danger or I will never have a chance to live.

-managing my life around epilepsy: I have taken two decades to finally give in and admit that I have epilepsy which means I should operate my life in a manageable way if I want to feel happier and be healthier. So I quit being employed and started freelancing. It's marvelous and I'm madly happy that epilepsy gave me my current work lifestyle.

-coping with the hell of being sick chronically: I see it this way: when I was first diagnosed, it was as though a new person had to be born, and that person had to learn to walk, and didn't have the developed muscles required to maintain balance. I had to keep on falling, practicing, and building those muscles before I could stop stumbling around like a toddler (figuratively speaking. Literally speaking, I still stumble around a lot of the time.) So I would say that at this point, 20 years later, when it comes to coping with chronic illness, I am at teenager stage. I still have to grow into an adult but I will. Had I lived my life differently, I'd have reached adult stage earlier but I spent much of my life in denial of a lot of things, which slowed me down severely.

 

[ktrer]

Wow, thank you all for that. I have been putting off doing something like this for a long time, although I've been told by others that it would be helpful. I also realize that 2 seizures (and now God willing, being controlled with medication) is nothing compared to some people who have it worse than me. I really need to change my attitude and look at things differently.
My mom recently told me: "change the way you look at things, and the things you look at change"...I really should learn to listen to her!
Funny, I'm in grad school to be a therapist, guess I should work on myself first!!!
Thank you all and I hope you all stay healthy and safe.

 

[kirsten]

Kter, I'm going to be direct instead of skirting around. I don't think you need to change your attitude or compare your situation with that of others. Not now. An epilepsy diagnosis is a big thing to swallow and you can only see things differently by walking through what you're going through now. Let yourself feel what you feel, process how you feel and how you are thinking about it, and do so until you get to the other side. Think of it as yourself standing on one side of a corridor, and needing to get to the other side. You can't wish yourself there. You can't think positively to get yourself there. Changing your attitude won't get you there. You actually need to do the walking. Another way of thinking will naturally follow. Expecting yourself to simply change your attitude might put a temporary cap on things, but your real feelings will just continue to bubble underneath, making the whole process of acceptance last a lot longer.