Coping with epilepsy - er not today :/

[kellyp181]

Hi Everyone,
I am new to the forum so I will give you a bit of background and please forgive the essay.

I will give you a bit of background, I got diagnosed with Epilepsy at the age of 21 (now 27) up until this point I was a very fit and healthy young woman.

I had one tonic clonic seizure in April 2007, this was a few weeks after a yellow fever vaccination for work, one of the very rare side effects was seizures. I did see a neurologist but because it was only 1 seizure we were told that sometimes people do have 1 in their life and pretty much not to worry about it.

I had no medication or anything and then in October 2007 I had 3 tonic clonics in one day and this put me in hospital for 10 days while they tried to work out what was wrong. While in hospital I was told 'you have Epilepsy'

At the time my parents and I were not convinced of the diagnosis, they came up with various situations that it could be but the neurologist dismissed all of them, they again suggested about the yellow fever jab and also that I was very tired as had gone out alot with my friends drinking and clubbing, but as we had no idea about Epilepsy we pretty much took what the neurologist said. I was given medication and again as we knew no different I took it, and have done so religiously.

A few weeks later I had an EEG, we were told that I had electrical activity after the strobe light and that I had photosensitive Epilepsy.

Now at the age of 27 and married I would like to start a family, I have done alot of research and know that I would need to come off the Epilim, after research I have found most women were on a much much higher dose than me I have started to wonder about it.

My medication has never been changed, never had a higher or lower dose, it all got started on the same day. I am on 200mg of Epilim (one tablet in the evening) and 150mg lamotrogine, 100 in the morning and 50 at night.

In my denial at 21 after the official diagnosis my way of coping was to go out clubbing and drinking with my friends, I always thought it was odd that if I had photosensitive epilepsy then the mix of alot of alcohol and flashing lights would probably have given me a fit at some point - but it never did.

My other issue is I do not have a neurologist to ask anymore because I was discharged after a year because I had had no seizures and the medication was 'working'

I was just wondering if someone could please confirm whether the medication I am on sounds correct or is it as pointless a dose as I think it is and whether or not I should get a second opinion on this. I have phoned Epilepsy Action who advised that the Epilim dose was negligible and to contact another Neurologist or my Epilespy nurse (which I have never had either)

today all i have done is sit on the phone trying to get to speak to a person about it not an answer phone, and for the first time in 5 years i have cried about it and i am certainly not coping with epilepsy today :/

I would really really appreciate if someone could advise me on this.

Thanks so muchh
Kelly

 

[Chaz1]

Hello Kelly,

You have been seizure free from 2008- today? No med change nor check ups?

I would definitely recommend you ask your doc to refer you to a new neurologist for new EEG and to check current status...is that possible?

Don’t beat yourself up, at 21 that’s what most kids want to do and do, party and have fun...seems odd indeed that club strobe lights did not bring on seizures, photosensitive epilepsy is certainly very real but not common....

Yes 2nd opinion is needed and don’t give up until you get it...thats my thought

Warm welcome to CWE....

 

[kellyp181]

hi chaz,
thanks so much for this, from october 2007 until today yes, and no strobe lights disco lights and all other lights had no effect at all, nor did the being very drunk and sometimes throwing up which is bound to have brought up my aeds at some point.

i am going to ask to see a new neuro, its a 2 week wait to see a dr then he will refer me about a 2 month wait fir that, so i am going to go private but still need to wait for my dr referral.

all so long winded, i have done lots of research tonight and found that it really is soundng like the vaccinations i had have caused this.

thanks so much again xx

 

[Nakamova]

Hi Kelly --

The standard listed dose for Epilim for adults starts at 600mg day and goes on up to 1 to 2 grams/day. So your dosage does sound quite tiny!

That said, in my experience, some folks are sensitive to even very small doses of the anti-seizure meds and can therefore benefit from them. I'm on 150mg/day of lamotrigine. It's considered a relatively low dose but it definitely makes a difference in controlling my seizures. When I was on Dilantin I was also on a very low dose -- 100mg/day -- but even that low dose was crucial for my seizure control. So there's a slight chance that the Epilim is playing some role.

It may also be the case that the lamotrigine is doing the trick for you, and the Epilim is superfluous. The only way to know for sure is to slowly taper off of it, and see how you do. I agree with Chaz that you should seek out another neurologist and have your medications reviewed. Ideally, your neurologist should work as a team with your OB-GYN to make sure that you are properly monitored when you get pregnant. Lamotrigine is considered fairly safe for pregnancy, but the levels of the med can be diminished by rising estrogen levels, so the dose sometimes need to be increased to compensate.