Newbie still getting used to being Epileptic

[chaosdemon]

Hi all

I was diagnosed last year with Left Temporal Lobe Epilepsy after three years of lost periods of time, suddenly finding myself playing chicken with traffic when the last thing I knew I was walking along the pavement, and other equally 'wtf' moments.

After having mri's, cat scan's and eeg's, it was finally found when I had the 24hr 'I look like an escapee from a science experiment' ambulatory eeg. The relief when I was finally diagnosed was huge, then it went slightly downhill, when I had to surrender my driving License and couldn't do Judo anymore and as you all know the list goes on.

I have an 8yr old daughter who has easily got used to mum slurring her words, staring into space, babbling, asking if she can smell burning and forgetting everything and doing completely random things. I also have a Jack Russell Terrier who is a sandwich short of a picnic, who has finally figured out that when I'm on the floor doing the 'carpet mambo', not to cosy up with me, as he ends up getting shoved across the room.

I've known about this site for a few months and been visiting quite a bit as I know nobody who has E and have had no-one to talk to about it, but this site has been great and only now have I felt ready to join in.

I was on Keppra to start off with, and the difference was amazing, I finally had my life back after 3 years of hell; unfortunately I had to come off it as my hair started to fall out and my LFT's went down the pan. So now I'm on Gabapentin/ Neurontin at the highest dose possible and its not working, I've now got the headaches back, my Photosensitivity has gone back thru the roof and I have sunglasses on most the time, special blackout blinds in my house and tinted reading glasses. Going out is painful as sunlight even on a gloomy day hurts.

The NHS being as it is, Getting to see my Neurologist for an emergency appointment is an exercise in futility, so I'm hitting a real low point at the moment, as I feel like 'bleh' all the time, headaches, seizures every day, tired, sleeping tonic clonics, waking up with blood in my mouth, the whole 9 yards.

Anyways that's a brief description of me, as I have to go dish up dinner for my daughter and I.

Thanks for reading and I'm sure I'll be pitching in, having a rant or adding my experiences from here on in.

Sally
xXx

 

[Rae1889]

Hey there! and Welcome
Being an Epileptic is a hard concept to accept at first, but it gets better. As long as you can realize that life still goes on and your are the same person you always were, then you should be okay soon. Being an Epileptic doesnt change who you are on the inside or out *save a few bruises and some carpet burn*

You need to educate your family and specifically your daughter on what to do incase of an emergency. Tell your daughter to learn to time your seizures on the floor. buy her an easy to use stop watch and tell her if the time reaches 5 minutes, she needs to call 911.

 

[Nakamova]

Hi Sally welcome to CWE!

There are other meds out there (like Lamictal), so keep pushing to see your doctor. In the meantime, take a look at some of the info here about special diets (they've helped some folks reduce or control their seizures) and neurofeedback. If you don't already, consider keeping a seizure journal to track your seizures and the things that might be triggering them.

I hope you feel better, get stable soon.

Best,
Nakamova

 

[Meetz1064]

Hello and

how's it going? Don't worry about things, you're going to fit right in. Having E is a pain in the arse, no doubt about that....I'm sorry you're having such issues with the meds.

Nakamova has a good point about the E journal. It will do wonders helping you find patterns for the seizures, and possible triggers. Food is definitely one of the triggers as well as lighting as lack of sleep, hormones (this includes the Time of Month for women) and more. I'm definite proof of the food issue....

I have a wonderful list of things to put into an E journal if you would like them. By keeping track of them, you can show them to your doctor every time you go in and work things out more accurately.

So welcome to CWE, and feel free to hang out. Kick up your feet, and have some coffee---hopefully one of the others will bring some by that isn't burnt...I've given up making it. The Kitchen and the Library are full of information and the Padded Room is great for venting when u need it.

Take care,

Meetz
:rock:

 

[dfwtexas]

Hi and welcome. I am on Keppra and don't have hair issues on it, but others on here do. However I tried the Keppra XR and my hair fell out by hairfuls every day. On top of dealing with E, you don't need that stress!
jenn

 

[valeriedl]

I know what you mean about having to stop driving. I had to give up my license and quit working. It's still hard to deal with.

I have to rely on friends and family to take me places, I know they don't mind but I just hate having to ask someone to run me out to the grocery store because I'm out of butter!

I had to move back home and live with my parents because I wasn't able to live on my own. I also had to learn how to spend money differently because I have to rely on social secruity to live on. Not that I lived a posh life before but there are things that I just had to learn no matter how much I wanted it I would have to do with out.

Luckily my boyfriend (who I know tries to understand what I'm going through)and I moved in together about 4 years ago, so I don't feel like I'm a little kid that still lives at home with mommy and daddy.

I am still trying to learn how to live my life different than I did before, it's hard but it will work if you keep trying.

 

[chaosdemon]

Hi Meetz

The list of things to put in the journal would be great thanks :adore: I'm still stumbling around in the dark figuring out stuff, although I have cut caffeine out except for two cups in the morning to help me turn from the incredible hulk into a human who can do more than grunt and growl, and that has helped alot.

Thanks to everyone who has replied, all suggestions and advice are extremely welcome

Sal

 

[chaosdemon]

Hi Rae

Ur suggestion about teaching my daughter to time my 'gimp attacks' with a stopwatch is a great idea that I would have never thought of, especially the 5 minute rule, thats something I'll be doing this week.

Thank u :clap:

Sal

 

[behlen]

I to am very new to Complex Partial seizures of right temporal lobe (thats a mouthful) still have not found a med that works. Tried Keppra no help. I am currentyl on lamictal, thought if was going to work and it did for about a month. Seizures started back increased the dose to 250mg again worked for couple weeks now back to almost daily sz. yesterday had three. I always get an auora first so that helps I guess. Little stressed because I have to be driven back and forth work. Which brings up my question. I am a firefighter currently in the office until I get this worked out. Scared that I may not ever be seizure free and wonder if I may have to go on Long term disability. Anyone had to do this and how does it work??