I am writing on behalf of my daughter. S he is sixteen and has suffered from epilepsy for two years.

[stephi97]

She always suffered seizures early hours of the morning, and was photo sensitive. Her whole pattern has changed, now she has seizures approx half an hour after falling asleep and has had two in the space of twelve hours. She takes her meds regularly and is on the generic of Kepra. She recently sufered two seizures in the space of twelve hours,without any photo sensitivity playing a part.Could anyone please advise?

[ecossaise]

Sorry Steph - I can't help directly but is it possible that she might be better on the "non generic" form of Kepra? - Has she always been on the generic form or has it recently been changed?? I know there has been some debate over the different effects of changing from brand named medication to generic forms - I don't know if this is relevant to your daughter's case or not - it's just a thought.

I actually do suffer from nocturnal seizures - normally exacerbated by STRESS - that's my "bogey man"!!!

[pezenas]

What level of medical care is she having. I went through my GP and neurologists until I searched out and found an epileptologist. As far as I'm concerned I had to reach this level before I found a doctor who understood epilepsy in depth. Before this I had been examined by no less than 14 different doctors including neurologists who failed to diagnose my problem at all. At one time I had even asked a top neurologist if I had epilepsy and was told "no chance". 4 weeks later I had a tonic clonic seizure and when I challenged the "No chance" specialist was told "Well it's all part of the big picture". Make sure you have a specialist who understands epilepsy. So many do not. Good luck.

[pezenas]

Steph

There is another issue which you may like to consider. Generic versions of anti-epilepsy drugs vary considerably and you should insist on the branded version. The generic form of Keppra (Levetiracetam) is manufactured in several countries and the bio-availablities between versions of the generic form can vary by as much as 45%. You should insist on the branded version of Keppra. I cannot say if this will make a difference but with a sensitive condition like epilepsy steps should be taken to make sure you have a consistent medication. Have you mentioned these side effects to a doctor because there are over 20 different drugs available for epilepsy and what suits one person may not suit another. My medication has been changed 5 times because of side effects but for the last 18 months I have remained on the branded version of Lamictal. I didn't even know about generics and thought the Lamotrigine I was given was branded. It was only when the tablets changed shape and colour still with the name Lamotrigine on the box that I raised it with an epileptologist and this whole problem with generics was explained to me. Hence the information above.

[Beeson]

Hi ya,

Sorry I probably can't be much help but there might be someone with similar types on here. I do get short ones which wake me up but these are fairly brief. I normally jump out of bed and onto the floor. Most of my seizures though are between 1 and 4pm....no idea why.I've tried most types of medication. I think consultants and doctors are still using meds as trial and error. Technology hasn't advanced enough yet to fully understand the workings of the brain?!?!?!!.

[AmyBadd]

Hi, it sounds like your daughter's epilepsy is somewhat different from my own, as I have never been photo-sensitive or had seizures when asleep, but I also started having seizures at age 14.

I would say that if she is on a form of medication that isn't working, you perhaps need to try another - there are a lot out there. As I have been through this myself, I may be able to explain something that isn't necessarily spelled out to everyone. Basically, several of the most effective AEDs (anti-epileptic drugs) have also been implicated with a very small increase in women of giving birth to children with birth defects (it is a VERY small increase and hasn't been proven conclusively). This however means that doctors avoid putting females of or pre- child-bearing age on these drugs immediately, so will often try them on others first. I went through Lamotrigine (Lamictal) and Keppra neither of which did anything for me (and Keppra possibly had some negative effects). Eventually, the doctors decided to try Epilim Chrono which is a formulation of Sodium Valproate which is one of these possibly-bad-for-childbirth drugs I'm talking about. This controls my seizures completely.

You should talk to the doctors about trying a different drug. There are a hell of a lot of different things that come under the "epilepsy" umbrella and quite a few drugs out there. What works for one person will be different to what works for another, and make sure you and your daughter are informed about the side-effects but when it comes to birth defects there are counter measures you can take. Now I am actually thinking of starting a family soon, I have been able to steadily reduce my dosage of AED whilst staying controlled and when I start trying to get pregnant I will be entitled to a prescription for a higher dose of folic acid supplement than most women would take.

Best wishes, Amy.

[Evangilene]

So sorry to hear of your daughters problems..it may be switching drugs to generic as some other folk have suggested. It is vital to stay with the same drug company as even the slightest variation can have a bad affect. Try getting an appointment with your specialist as soon as possible. Also is there an Epilepsy nuirse in your area ?? These are marvellous...as they are experts and can give wise advice. Also being a teenager the body is still developing and this may be detrimental to her health. Finally do you subscribe to Epilepsy Action ?? It is a society available to offer advice & support . Ring 0113 210 8800 and someone will be able to point you in the right direction. Do hope you find some answers and don't despair. My daughter began having seizures aged 13,she has been married for 23 years and handles a full time offce job. She often has a seizure weekly but she leads a normal life

[georgi04 in reply to Evangilene]

hi my daughter is 27 and has tonic clonic seizures and is on epilim chrono 2500 grammes a day. Are your daughters the same fits?

[Hidden]

Hi Stephi97, reading replies to your query also make me wonder whether changing to the original drugs would be better for her. If Keppra is not working, then try another tablet after a further visit to the Neurologist or Doctor. I take Carbamazapine and Phenytoin which controls my epilepsy now after 40 years. Another point to make, hormones plays a big part in the effect of one's seizures. At the age of sixteen (when my epilepsy first started) stress is a big part, together with puberty and hormones. These were the main causes of my seizures then and still are today! Heat is another major cause. Please feel free to contact me personally should you wish to chat. Kind Regards, Les

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[Chimbelina]

How badly do her seizures affect her? Is she ill afterwards? I guess we all just have to keep close communication with GP, Neurologist and Epilepsy Nurse so that they can alter meds. if necessary. From my experience all of this is a long slow process of trial and trial again until seizures are under control. I have heard that 1/3 of people don't achieve control.

[EpilepsyInst Partner Epilepsy Research UK]

Hello Stephi97 , I imagine it is extremely disconcerting (and bewildering) that your daughter's seizure pattern has changed so dramatically. I can't give any definitive answers, but epilepsy is a changeable condition, and considering her age, I wouldn't be surprised if hormones were also playing a role. Some people have suggested that her being on generic levetiracetam rather Keppra might be partly responsible; however in my view this is unlikely to be the case, especially if she has always been on generic levetiracetam. A small proportion of people have reported breakthrough seizures when switching to a generic from a branded drug (although in fact it is potentially more of a problem when switching between generics - I would recommend that whatever the drug, the doctor be asked to prescribe the same generic each time); however I think that switching is unlikely to be a major trigger for such a dramatic change. As a couple of members have said it may be that your daughter's neurologist needs to review her medication. I would certainly recommend you make an appointment with the neurologist to discuss this. If he/she hasn't got any availability for a while, you could ask to see an epilepsy nurse in the meantime. All the best, ERUK_RI

[DarrenC]

Hi Stephi97,

Your daughter is going to be in a vulnerable stage of her life, due to her age and gender with her epilepsy. Now she in her teens her temporal lobe, is going to be developing very strong, and the nerve activity is going to be doing the same. Being a woman she is 85% oestrogen 15% testosterone, so her instinct is more emotional. This is going to be a bit harder to cope with the heightened activity causing panic. The reason why it's going to be hitting her at night is, because at her age her natural fitness will be able to deal with nerve activity pretty well through the day(i.e) her heart rate, lung capacity and muscle strength. At night her body is going into sleep mode to recharge the body, but the heightened nerves are still going to be active. Her oestrogen level will probably create a lot more sensitive thought, causing the nerves to pass across the afflicted area of the brain, causing seizures in her relaxed body at night. The tablets need to be more relaxant to put off the activity. Epilepsy is a very cardio respiratory condition, which can be controlled a lot better from physical fitness. Her breathing pattern is a key in controlling her fits, breathing in her nose out of her mouth in a relaxed controlled state.

When you build on your stamina you strengthen your muscles, and heighten your energy which creates a positive structure in dealing with the bursts of activities created by confused eye sense affliction. CV machines (i.e) rower, bike, treadmill, are very positive for epilepsy, and if you body/weight exercise breath in the nose as you go down with gravity, then hold your breath raising back up, breathing out of your mouth at the top. God Bless

[Mands49]

Hi there, this is a personal question but I will ask it. Did you daughter receive the HPV vaccine when she was 12 or 13. If yes, I have so much information that may help you. My daughter started having seizures (we are told epilepsy) 2 months after her 2nd dose of HPV vaccine. I am looking into the possibility that her seizures are vaccine realted. If you think this may be relevant, go immediately to Sanevax.org.There are many many helpful families for you.

If it is yes to HPV vaccine I thoroughly recommend mineral water that contains silica. Get your daughter to drink 1.5 litres minimun a day for 3.5 months

I wish you all the best,

amanda