Advice

[Antares]

Hello there my girlfriend has just recently been diagnosed with Todds Paresis and I am unsure how to adjust myself to this. I don't know whether to call an ambulance every episode. How I can reassure her and how to adjust both our lives to this change. Furthermore, we are both worried that her employer will be unsympathetic and will not renew her contract due to the time off she has had to recently take. The doctors seem uninterested/unwilling to do anything about this it is really frustrating and my girlfriend is really scared about this condition and how it effects her when it happens. I would just like some advice on these issues if you would be so kind and how I can best help her live with this. Thank you very much

Antares

 

[Nakamova]

Hi Antares, welcome to CWE!

If your girlfriend's tonic clonic seizures don't last longer than 5 minutes, and if she isn't seriously injured during them, then you don't need to call an ambulance. You should make her comfortable, let her know what happened, and take care of her during the post-seizure "hangover." The post-ictal weakness is temporary and will wear off. You and she should keep a seizure journal tracking the seizures and post-seizure systems. Is she on medication? The journal can help evaluate if the meds are making a difference or causing side effects.

And you should help her find a neurologist who will work with her to achieve better seizure control. A good doctor can make a huge difference, and it's worth being persistent in finding one.

As far as her work situation goes, there's a limit to what you can do. The employer may be within his/her rights to decline to renew the contract. If you feel the employer will be sympathetic, you could try explaining what the circumstances are and hope for flexibility on their part.

Best,
Nakamova

 

[Antares]

Thanks also she is having to give up her driving license for obvious reasons but she is taking this really hard and is very scared about her life at the moment do you have any tips on how I can reassure her? She isn't on medication yet but I'll be sure to do that once she is. The doctors have been less than sympathetic or understanding and most of them have been reluctant to do anything at all. She is currently waiting until the appointment for her EEG and for her neurologist to come back from his holiday.

 

[Nakamova]

You might suggest that she join this site! There's comfort in knowing that you're not alone, and that other folks are going through similar struggles and successes. It's important for her to be proactive, to take control of these things that she can, starting with her basic physical and mental health. There are good tips here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[Antares]

Hi her seizures aren't tonic or at least they have not been so far she has just dropped to the floor and gone straight to clonic after which the Todds Paresis takes effect and her left leg and arm leg loose all feeling for a few days. She has just been started on Keppra 250mg to be taken twice a day and they are gradually increasing that dosage every two weeks until it reaches 1500mg. She has become a lot more upset over the past few weeks more so since the last seizure she had. She says stuff like "I hate being sick/broken", "I can't do what I want to do anymore or not without taking the fact that I may just fit into account", "I can't swim by myself, drive, go on an aeroplane, cross a road, take a bath etc without me having to tell someone I'm the way I am". She breaks down crying now, I don't know what to do or say to this I try to talk but she just gets upset any advice would be most appreciated.

 

[valeriedl]

She doesn't need to walk up to someone and say "Hi my name is (your girlfriends name), I have epilepsy/seizures - nice to meet you!" Everyone in the world doesn't need to know.

It may take a while to get the right meds and dosages figured out. That's something that's frustrating.

There are just some things that you need to accept you can't do any more. At first my family didn't want me to do many of the things that you said that she can't can't do alone. Swimming, crossing the road, taking a bath etc... I'm not sure why she can't go on an aeroplane but I don't fly so I don't know about that.

It's taken a few years but my family has let up on things and I pretty much have some freedom now and I'm not treated like a 3 year old. I've realized however that there are some things I don't want to be doing alone. I really wouldn't want to take a bath or swim by myself but if there's someone around then I'm ok. I'd be afraid that I could could have a seizure and maybe drown. I take showers alone now, which was a no no at first.

It's hard not being able to drive but that's another thing that I don't want to do. I could have a seizure behind the wheel and wreck the car, kill myself or someone else.

We don't let my epilepsy get in the way of things any more. If we want to do it then we do. Take a vacation, go to the movies, a concert or what ever then we do it not being afraid that I might have a seizure. Everyone has come to realize that I could have a seizure just sitting at home watching tv or being out. There's no one or the other.

As said, try to get her to join this web site. When she finds out there are other people out there that are dealing with the same things that she is she'll realize she's not alone in this whole thing. She'll even be able to ask questions and find out how other people deal with them and get some great answers.

 

[Nakamova]

You might want to have her try a B6 vitamin supplement -- it has helped some folks with the moodiness that Keppra causes.