I think i'm finally accepting my epilepsy

[Loopy Lou]

This post is probably a long time coming, since i was diagnosed back in 2009 or so, maybe i have an extreme ability to hold onto a grudge with my own brain lol.

It's only over the last few months or so i've realised i don't obsess about it all the time. I'm more open with people about it, and have found that mostly it's not a big deal for them. Not that i go shouting about it, but for example at uni people had to know since i work with dangerous chemicals and such a lot.

The longest i went without a tonic clonic was about a year, then had a bad run of them, so still no driving license, but i think i've also accepted that it's possible i won't ever get it. At least i have a free bus pass.

Things aren't perfect, and at my last visit to the neuro a couple of weeks ago i found out my weird new "happenings" are apparently jamais vu, which is possible the freakiest small seizure i've had so far. The option was there to take a topiramate increase, but i decided not to when i've got exams and assignments coming out of my ears at the moment. If i have another tonic clonic, i'll consider it.

Perhaps that's why i've not been on here so much lately, apart from the laptop issues, because i've just felt like there was nothing much to report or say. Or other things have sort of taken over on the worrying scale lol.

Well, it's taken a long time, but i've begrudgingly accepted epilepsy as part of myself.

Not entirely sure why i posted this actually, just felt the need to talk!

Hope everyone is groovy

 

[Fedup]

Loopy Lou

That is good news and good to hear, I bet it feels good to say it as well, you will get through Uni and any other obstacle put in your way. Its not easy to accept but it does help you.

Well Done. :clap: :clap:

 

[Belinda5000]

Loopy lou
I'm really glad to hear it and that is terrific news.
It's better that you accept it later than never at all.

Belinda

 

[Loopy Lou]

I think i finally just realised life's too short to be bitter about something i can't change. And with any luck it won't affect me much in my next career

 

[Fedup]

Loopy Lou

You can do anything you want.

 

[Nakamova]

I think i finally just realised life's too short to be bitter about something i can't change.

Plus there are so many other things to be bitter about!

Lou, that's great that you're in such a good place right now. Good luck with your studies!

 

[cawhitern]

I've found that everyone responds in a non-judgmental way, and usually are very supportive. Everyone that is, except my ex-husband.

Good luck at university!

 

[gnault]

Loopy Lou,

Every once and a while people would ask me about when I retired from the military and I would explain that I was medically released due to a tonic clonic seizure. One person asked me if I epilepsy, I think that was just over a month ago, and I said that I didn't ever recall being told that I was officially diagnosed with epilesy. I think my wife should actually come to my appointments. I went to my doctor and she told me that my neurologist had diagnosed me with Frontal Lobe seizure disorder. I will be on meds the rest of my life as they discovered scar tissue on my brain that they may contribute to the seizures but no proof. It was at that point that I really fully accepted that I have epilepsy.

Don't restrict yourself and enjoy everything that comes your way! Next month my son and I are heading to Israel.

 

[Dutch mom]

Great to read Loopy, means you're at least getting comfortable with the epilepsy being part of you. It took me over 5 years to accept the epilepsy as a part of my boy which will probably never disappear. The seizures were so much harder to accept than all his other limitations and handicaps together were. I have accepted them, I can say now, but at the same time I will never get used to them. But fact is he wouldn't be who he is without this nasty disorder.

 

[Cint]

Great to hear Loopy Lou! I've had E for over 30 years, and even after brain surgery, I thought for sure seizures would stop. Didn't work for me, so I've had to learn to go on with life and accept life as is, SEIZURES and all. Remember, life is what we make it. Accept yourself as you are, and others will, too. Like Dutchmom said,the fact is we have this brain disorder and we never will like them (seizures) or get used to them, although they may change thru the years.

 

[Loopy Lou]

I seem to go for ages now without a tonic clonic, then all of a sudden i'll have a few within a few weeks, but i think i've figured out my triggers and accepted that i can't "keep up with the kids" while partying any more lol.

Went on a xmas night out with the guys from uni and had to head home about 1-2 in the morning, but i think it was a wise choice lol.

 

[Fedup]

Loopy Lou

Looking after yourself is the best choice and so far your doing a good job. Keep minding yourself.

 

[zoe147]

Hi Loopy Lou

I really appreciate your post and sharing what you have been going through with acceptance and disclosure. And I know what you mean about how whether or not to tell people can somehow be connected to the self acceptance issue, too. Its fantastic that the people around you are being understanding and supportive. That positive reinforcement can make all the difference sometimes.

The holidays can make it hard because of all the finals and the festivities. Just be careful out there and don't party toooo hard. (Hey, thats the mom in me: I have college age kids. We can't help it; worrying comes with the job description!) Have a wonderful time.

Congratulations on your self acceptance breakthrough!

:woot:

 

[gnault]

I sometimes find that I can still be in self-denial or think "did this really happen to me?" I believe that I may have told part of thie story. Every once and a while I'll ask my wife the details as I really don't remember anything related to it before or even a day or two afterwards. I don't remember being in the hospital or transferring to the hospital on the military base that I served at. My wife told somebody the story last night to a friend that we hadn't seen probably in eight years. The ambulance station is about 15 minutes from where we live. She told our friend that from the beginning to the end I probably seized for twenty minutes, a few minutes before the 911 call and then almost until the ambulance showed up. Asking her to tell me the details occassionally helps me to realize how serious it was.

I ignored a lot of the absence seizure that I had. My dad died six days after my 16th birthday. Because of that I didn't want to have much to do with hospitals. Go to a hospital and who knows what they will tell you. I guess the lesson is don't ignore your symptoms, I may have been able to avoid the clonic tonic seizure! I have had the odd aura, but nothing else, I haven't told my doctor about the auras yet, but I will.

Happy New Year everybody!

Sent from my SM-T350 using Tapatalk

 

[Nakamova]

I sometimes find that I can still be in self-denial or think "did this really happen to me?"

Even though it's been about 15 years since my first seizures (and they are well-controlled), I still like to imagine what form my life might have taken without epilepsy to contend with.

I guess the lesson is don't ignore your symptoms, I may have been able to avoid the clonic tonic seizure!

On the rare occasion when I get very minor breakthrough symptoms, my first instinct is still to ignore them and hope they go away. The little denial-beast sits on one shoulder, the acceptance-critter perches on the other...

 

[Loopy Lou]

I must admit, i do completely ignore my partials, until i started having a new one recently which freaked me out a bit. My neuro said it sounds like Jamais vu.

As for blanks and partials, i tend to ignore them because my neuro doesn't seem to find them important, and half the time i don't know i'm having them.

I have been told if there's any more TCs i'm getting a med increase though, so i guess i better hope that a partial doesn't lead to a TC!

 

[gnault]

Well this Thursday I have an appointment to see my family doctor. She has been on parental leave with a new baby for sometime. I'm glad that she is back because she is the one besides my neurologist that I trust.

I need to let her know of my memory issues, these apparent auras that I feel like I'm "walking on air" and my eyesight. The other day driving home I all of a sudden realized that I was starting to go in the wrong lane likely would have headed to the ditch. I didn't notice that I was drifting off like falling asleep at the wheel. All of a sudden I was in the wrong lane heading in a direction I didn't want to be. I'm also going to see my optometrist next week to talk about my vision. Poor night and distance vision. I'm expecting a medication change of some sort.

When I told my pharmacist she said likely a reduction in Lamotrigine. That was before I mentioned the auras, the memory issues, shoulder joint pain and the vision. She said that something would need to be adjusted.

We'll see what happens in a few days.

I also fly out next week for Israel next Thursday for ten days. I saw an article on travelling and epilepsy. Do I tell the airline when I get on or just go on like any other individual? What would any of you do?

 

[Nakamova]

If you're traveling alone, check with your airline's medical information rep to see if they have a specific policy for people with medical conditions. It's a good idea to have some kind of medical information close at hand -- an ID bracelet, or a letter from your doctor tucked into your wallet, etc.

There's no medical evidence that air travel increases the risk of seizures, but if you're worried that you might be vulnerable, you can let the flight staff know in advance what form your seizures take, just to avoid any misunderstandings. Keep in mind though, that you might not be allowed on the plane if the staff doesn't feel comfortable having you on board. Ridiculous I know, but they have some leeway to do this.