Newly Diagnosed with TLE

[confused_is_not_the_word]

Hi,

I was diagnosed with TLE last week and at the minute i feel like the bottom has fallen out of my world.... i feel like i have a dark cloud over me all the time and i just dont know how to begin to come to terms having TLE.

I had my first and only grand mal on 29th Nov and have had nothing since. Neurologist tells me that i have had seizures before, simple partial. i tend to feel detached from reality although i'm consious and my heart beats though my chest.

I am terrified of having another seizure to the point that its all i think about.

I have been precribed meds but dont pick them up till next week.

I feel like i'm in a hole and i have no idea where to go from here...

Can anyone help?

Thanks

 

[Chaz1]

A big warm welcome to CWE.

Thank goodness you have not seen a seizure since last Nov.

You should not live in moment in fear of the next seizure; can you go speak to anyone about this to relieve some burden, like your neurologist or doctor?

 

[qtowngirl]

Welcome Confused, and (((BIG HUGS))).
Every word of how you feel is TO THE TEE how I felt when diagnosed with left TLE - absolute devastation and no grasp of what just happened. What you're feeling is completely normal, completely expected, it's what most of us went through at diagnosis time and just know you are not alone. You've got lots of new 'friends'... and you came to right place.

What peaks my curiousity is the diagnosis after just one grand mal. Of course not every single situation is the same, but the general guideline is that epilepsy is not diagnosed until a second grand mal. Curious if they had a reason for that, have you had eeg's and mri's or if they have found a reason?

I don't mean to ask a lot of questions but it's good to know as much as you can up front to make it all less confusing. For now, just know we're here and feel your pain. The beginning can feel like the scariest thing in the world, but with the right medication it does become something you can work with. Keep in touch and let us know if there's progess with the meds and how you're doing.

 

[Nakamova]

Hi confused_is_not_the_word, welcome to CWE!

It know it's tough in the early going of an epilepsy diagnosis. It feels strange and confusing and scary. It does get easier to accept and cope with over time, I promise. But in the mean time, it can help to get informed about what the diagnosis might for you. Joining CWE is a great start -- there's lots of info, advice and support to be found here. Get to know your seizures: Keep a seizure diary so you can note down any symptoms or side effects or any other factors that affect your overall health. Get to know your meds: Find out about potential side effects, how you ramp up or taper off, what interactions to be aware of, what to do if you miss a dose, whether it's better to take them with food or before, etc. Get to know your neurologist: Make sure you're comfortable with him/her, and that you know how to get in touch with questions or concerns. Get to know your friends and family: Don't be afraid to ask for help -- talking about your fears and worries can help, and being distracted from them can help too. If you think it might help, consider seeing a therapist.

As someone who has had 20 tonic-clonics (though none in almost 4 years, knock on wood), I can tell you that the anxiety dissipates, it really does. I'm not blase about the possibility of having another seizure, but it doesn't rule my life, and it shouldn't rule yours.

Best,
Nakamova

 

[LJ-Bain]

Life after diagnosis....
It must feel like you can't trust your body anymore and that the rug has been pulled out from under you.
It is a shock! It can feel all consuming as well. It feels like one is lurking around the corner.
I hope that the medication helps when you get on it and the side effects aren't the type that knock you off your feet again.
You are stronger than you realize. Feel free to share with us because we've been there!

 

[huskymom]

Welcome aboard! It is always nice to meet a new friend. Like stated above, you will start to feel better and in control soon. For now, it is normal how you are feeling. We are all here for you

 

[valeriedl]

I was diagnosed with epilepsy about 11 years ago when I was 24. My first seizure was a grand mal, it came out of nowhere and the drs still don't know what caused it.

At first I was having probably 3 seizures a week. Now through many years of different meds and a surgery I'm down to about 3 a month, and usually 1 grand mal a year.

I really like my neurologist. If I have a problem with things, eating, sleeping, my attitude, he has helped. I've learned too that the first med you are put on might not be the one that's going to fix everything for you. I've been on many different meds, dosages and even a surgery. At least the ammount of seizures and how bad they are has really dropped, but I am still having them.

It's hard to deal with, it was for me too at first. I've got horrible memory loss, I can't drive and other things. After a few years I just said to myself - "This is who I am now and how I'm going to have to live my life, possibably forever - so deal with it!"

I've found alot of help on this web site because people understand what you are dealing with, they go through it too. You can talk to someone who doesn't have epilepsy about how you're feeling but it's just not the same as talking to someone who does.


Hope you find that help too.

Nice to meet you!