my boyfriend has epilepsy

[moll27]

Ive been going out with my boyfriend for six years now and two and a half years ago he developed epilepsy (he's 30 now). He wasnt diagnosed until his second seizure and has been on 2* 300mg of Epilium each day. he has had a total of 6 seizures (all grand mal) now with them roughly been 6 months apart. All have happened at night except one which occured just after he woke up.
his medication levels in his blood have been taken after his last two seizures and they were very low... he has definately been taking his tablets and doctors believe his body is breaking it down far quicker than it should. they have now upped his medication to 400mg in morning and again in evening.
Each Grand mal seisure has been getting slightly worse. for example last time he came around after the confusion wore off to a really bad headache to which he was vomiting from . These seizures are at night and Im on my own when they happen and it really scares me.
Does anyone have any advice or feedback for me? also do most people still drink alcohol like normal with epilepsy??

Thanks so much in advance guys xx

 

[rayray]

Hi Moll27

I envy your boyfriend, when i had a couple of seizures again after a few years of being seizure free my girlfriend couldn't handle it and left me. Put me off the whole relationship thing. Alcohol is a big no no when your taking any type of AED it can cause seizures as well as some prescription meds always ask your chemist "can i take this with epilim" eg head aches, you can only take tablets with Paracetamol in them, for me when i was on epilim took a headache tablet that didnt have it in and knocked me out for about 4 hours.

I had the same problem with my epilim levels as well i was up to 2500mg morning and night, Neuros just luv juicing you up on meds lol. The headache and vomiting is natural after a seizure, so don't stress there and usually a few hours of sleep. This is easy for me to say but don't be scared, just let the seizure happen and he will be ok. There can be a few bad side effect's, like possible mood change's, so don't think its you if he becomes abit angry or abrupt, there's a thread about AED side effects. Hoped this has helped you a bit

 

[Nakamova]

Hi moll27, welcome to CWE!

I hope the higher dose of Epilim helps control your boyfriend's seizures. The increase in severity can happen over time, although it may depend also on the circumstances of the particular seizure (for instance, my worst seizures seem to happen when I am hungry and/or dehydrated). Since your boyfriend's seizures happen at night, you might ask his neurologist about the option of taking 300mg in the morning and 500mg at night, or perhaps trying the time-release version of Epilim (which can help to keep the levels more consistent throughout the day). Have his medication levels been drawn during the day, or only immediately after the nighttime seizures?

Another possibility is the Epilim isn't the right med for him and he should try something else (particularly if this newest increase in dosage doesn't do the trick and/or brings with it intolerable side effects).

Does your boyfriend have any known triggers for his seizures? These aren't always possible to identify, but if he can figure them out then he an also try to avoid them. Sample triggers are: fatigue, dehydration, certain food sensitivities or allergies (things like MSG, aspartame, gluten, stimulants), nutritional imbalances, dehydration, low blood sugar, infection, etc. Since his seizures happen at night, low blood sugar may be playing a role -- he might have try having a snack before he goes to bed.

As for alcohol -- the general consumption rule is none to moderate, but it differs widely from individual to individual. Alcohol and anti-epileptic drugs are self-reinforcing in terms of the sedative effect, so you can feel more "knocked out", and you can feel it sooner. Consuming large amounts of alcohol can lead to fatigue and dehydration which can be seizure triggers. And some AEDs stress the liver or cause dehydration on their own, so it can be important to avoid other things (such as alcohol) that do the same.

In my case, I can drink a few glasses of wine or a cocktail and it doesn't bother me --though I don't do it every night of the week.

I think it's great that you are trying to help your boyfriend cope. I know that seizures can be really scary to witness -- believe it or not, they may be harder to watch than to undergo. When your boyfriend comes out of a seizure, let him know what happened and be comforting. It can be normal to feel ill and tired after the seizure, and often the person just wants to curl up and sleep for awhile, which is fine You may want to make sure that he gets enough to eat and drink when he is able to.

Best,
Nakamova

 

[moll27]

reply to nakamova

Hi Nakamova!
Thanks for your reply. I looked into the different items that you said he could have an sensitivity/ allergy to. I especially looked into aspartame as I have never heard of this before. I learned that if you have underlying epilepsy condition and are in contact with large amount of food with aspartame it can bring the condition out in someone. The crazy thing is that the eight moths before my boyfriend got his first seizure he started going to the gym most days and was taking flavoured protein drinks etc, which most contain aspartame!!.. going to look into this more... thanks so much for the advice! xxx