Epilepsy Research UK
1,911 members560 posts

Medication but still have seizures

Hi all, I hope someone can answer this question please. My son is 21 and has been having seizures for 7 years with 2 itu admissions. He is on alot of aed's and still has breakthrough seizures. Could someone please tell me if this is normal to have these breakthrough seizures. Will be grateful for any replies. Lisa

15 Replies
oldestnewest

Hi Lisa.

Unfortunately only about 2/3 of people with epilepsy are able to completely control their seizures with medication. I myself went for 7 years with no seizures and then started having occasional episodes again a couple of years ago (not helped by having a baby recently but it started before I got pregnant).

There are a lot of drugs out there, so don't give up until you've tried a few. The first two I took did nothing at all to help, but the one I take now is very effective for me. Different ones work for different people and some people also can be helped by surgery.

All the best,

Amy

1 like
Reply

Hi Amy, thank you so much your reply. It always feels better when you have some advice from someone who has gone through the same if you know what I mean. Got appointment with epilepsy nurse soon so that is something I will definitely discuss with him. Thank you again and hope everything is ok with yourself and baby. Lisa

Reply

Hi sorry to say I have been epileptic since I was 3 Months I am now 49 have been on all the drugs the doctor can give me over the years but still fit regularly and have to go into hospital for it at times unfortunately not everybody can prevent seizures totally with medication

Reply

Hi thank you very much for your reply. The reason I asked the question was because my son has a new neurologist who is saying he shouldn't have seizures on his meds. And that was it nothing else was said so as you can imagine was left feeling very confused. I had read on a site before people can still have seizures on meds. It's just better to hear it from someone who is actually going through it as well if that makes sense. Hope you don't mind me asking but has epilepsy affected your memory.

Reply

Yes my memory is atrocious I can remember a lot from my childhood though my brother is better but I can't remember anything from last year like a holiday or a wedding I forget dates and appointments all the time tho I have had an operation and that has effected it more as expected

Reply

Hi sorry I am only just replying to you. My son is exactly the same remembers things from years ago but not recent things. I only from what my son says how frustrating this is, especially if we have done something special and he forgets it. I wish you all the best and hope things will be ok for you. Take care. Lisa

Reply

I know what you mean. I have the same memory issue. It's hard to deal with somtimes.

Reply

I have temporal lobe epilepsy following the resection of a right temporal lobe tumour.For 4 years I was completely seizure free but have recently started having the partial simple seizure again,accompanied with the depression that is associated withT.L.E.I am seeing my neurologist early Sept and suspect he will increase the dose of `lamotrogine.I feel so sad for your son's experience but remain sure that by tweaking meds or even changing them may help.my short term memory is awful,but then my husband says it always was scatty!Ithink sometimes that blanket statements are made when everybody's experience is different.I think in general anybody that has been treating me finds me a pest because I question everything they say.So from my experience there are breakthrough seizures and certain things can set them off',stress,over exertion and extreme heat.Sorry for the rambling answer but I feel for you so much Lisa,as a mother memory was meant for you.Sorry it is very rude of me to answer you both in one post.I hope things improve,Ashx

Reply

Hi Lisa, my name is Janine and I have had epilepsy since I turned 31 so for 7yrs and it just came from nowhere. I hadn't had an accident or anything and have tried all the epilepsy med's but still seizure although the Epilin crono slow release works better for me so although I still seizure it's less than I did. I have also had surgery and had a vagas nerve stimulation fitted in my chest which sends positive signals to the brain but I've had to have it turned off as it caused an eating disorder and I lost 4 stone and it made the side affects of the meds worse. I have been told other than moniter me there isn't much else they can do. I wish you and your son all the best. Take care. Janine x

Reply

Hi Janine thank you for your reply sorry it's taken me a couple of days to get back to you. I'm so sorry to hear you have been through so much. It's hard to believe how seizures just come on for no reason, that is exactly what happened with my son as well. How life can change over night. I have heard about that drug your on epilin..this is something my son hasn't tried. Maybe I could mention this to his neuro. All the best for yourself as well take care, Lisa x

Reply

I would recommend the two most highly concentrated medications. Clonipan with lemotrigen. These two assist each other to create a strong barrier for your brains nerve cells. Wish you well.

1 like
Reply

Hi Sue1980, I started with Epilepsy 11 years ago took ages to become controlled which it did , unfortunately over the last 2 / 3 yrs I have started with seizures again. My medication was increased and although I do not have drop seizures with the increase I am left with absence seizures lasting from 2 to 5 mins in length . Although this is better than the drop seizures I had it still causes safety problems . I suffer from other health problems and I have been told that another increase in medication would not benefit me as the other medications will react . I have also side effects and allergies to some of the medications that may work better . All in all I have come to the conclusion that I will suffer seizure now for life but gladly in a milder form . All the best to you stay safe & take care , Kathryn x

Reply

Hi Kathryn Thankyou for your reply. Do you mind me asking how many different types of meds you're on. My son also has absent seizures they only last a few seconds, but even those few seconds causes him to forget what he is doing. Does this happen to you too. Stay safe too x

Reply

Hi Sue, Sorry I haven't been a member for that long. Just catching up on the thread. You said that your son is on 'a lot' of AED's - how many different ones is that per day? Also with regard to breakthrough seizures, I have had one in 5 years due to an accident further lowering my threshold. Whilst I appreciate the doctors and statisticians have arrived at their '70% controlled by AEDs' figure, I occasionally wonder what my seizure count would be if I 'did' supermarkets instead of online shopping for instance. How many seizures you have and how many adjustments you make can be two different tales.

How many breakthrough seizures is your son having? If it is worrying you enough to post here, I would tend to be in agreement with your son's new neurologist. Although his comment that he shouldn't have seizures on meds may be overstating things a bit. They are looking for the best control possible. For many years I had one or two seizures a year. The seizure control was no problem as I had warnings. Then I had a dreadful 18 months with a drug change, then nothing for ages - but you do make adjustments as well as the drugs.

Personally I would like to see the 70% divided up into 'controlled' and 'controlled, but have some wretched days where if I don't stay in rest something would have happened'

Tick box for the latter.

Hope you and your son and the new neuro get things sorted. Have they tried reviewing your son's meds?

Reply

Hello joe,

So I also went many years with no issues. I had small seizures that I was able to control untill I was 18 and I never knew that was what they were untill I was 18 for 3 months and I had a major grand maul seizure from smoking e cigs. The chemicals "woke my brain up" and caused them to be worse and I was then put on medication. My tip for you is, avoid any contact with chemicals as well as flashing lights which are the main causes of seizures. Since I started that I have not twitched for a year now. Please tell your son to take a week trying this and he will feel much better, calmer, and almost seizure activity free. And keep in mind I am not a doctor.

Reply

You may also like...