Intractible Nocturnal Seizures

Hi, I'm writing from New Zealand. My ten year old daughter has been diagnosed with nocturnal epilepsy since five years old. She is currently having 10-25 seizures a night. We have tried many medications but the seizures have never stopped for long. Epilum, Keppra, Tegretol, Phenytoin (terrible side effects) , Clobasam, Topiramate (terrible side effects) , and now we are slowly building up in dose with Lamotrogine. Her EEGs showed a very subtle abnormality and her MRIs are normal, but are showing parenchymal volume decrease from all the seizures. She is a spunky happy little girl but this is all affecting her schooling and we are all exhausted from all the restless nights. I would love to hear from anyone else going through similar seizures. Have you tried anything other than medications? We have even tried rubbing essential oils (Frankenscence) on her feet and forehead. Love to hear from you

11 Replies

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  • Hi Khen, I'm at the other end of the scale with so far undiagnosed seizures or REM sleep disorder and am 50 this month. I had an abnormal EEG with physical movement during a sleep study 11/2015. I knew something was wrong as I've felt abnormally tired for decades but nothing was found till the sleep study.

    I saw a Neurologist in 06/2016 and he started me on Clonazepam 500mcg which treats epilepsy or ReM sleep disorder. It helped at first but is low dose and now feels like a placebo. I noted it wasn't among the meds your daughters tried and I can say I didn't notice side effects. Lavender is good for promoting relaxation so you could try oil in bath or on pillow. It smells nice. I'm going to contact my Neurologists secretary tomorrow to check if my files been reviewed for Diagnosis and that my med seems to have stopped working. What I experience are very vivid and exhausting dreams and so I'm shattered when I wake up. Good luck with your daughters treatment.

  • Hi thanks for your message. I will try the lavender, someone else has mentioned that before too. Unfortunately the clonazapam is not able to be given to children. Many anti convulsants are just for adults. I really hope the doctors get to the bottom of it all for you. Best of luck :)

  • Am54

    Hi khen.

    So sorry to hear about your daughter, that is so tough for her and yourselfs!

    My Son was hit by a car, aged 10, He suffered severe brain damage resulting him to get epilepsy.

    Like yourselves all sorts of meds were tried over the years to stabilise him, some good, some not! But overall pretty good for many ....many years.

    My son is now 39 and after many years of being stable, the death of my husband in 2011, set him off with 7 seizures a day.

    Although he is a lot older then your daughter, it often takes time to find the right combination of medication.

    He is now on Keppra, Lamotrigine and Sodium Valproate and that works very well for him.

    As they grow up, hormones change, emotions can also play a role, which can set of seizures....it is a journey! Don't give up hope as hopefully the right combination can be found for your daughter.

    I don't know of any herbal treatment but I give my son vitamin B complex and cod liver capsules as this last one is very good for healthy brain function and overall health.

    Wishing you and your daughter the very best.

  • Thank you so much for your message. It was so lovely to hear from someone going through a similar situation. Yes I agree if my daughter is emotional, anxious or excited her seizures definitely increase more. Tiredness also increases them but it's a vicious circle when your seizing all night you aren't sleeping ;) she's on similar meds to your son at present, Epilum and lamotrogine. I have noted down the Vitamin B and oil capsules too. Thanks so much.

  • I have had epilepsy for 14yrs which included many sz's. I am now taking Zonismide which has stopped all my sz's for the last year or so. See if you can try it.

    B . O'Cleary

  • Hi thanks so much for your reply. Unfortunately Zonismide is not approved for use in children under 16 years. There's only a small number of anticonvulsant medication children can use. But thank you for your time.

  • I have the exact same condition and small doses of clonazepam is what worked so sorry that they can't use it with children...

  • Wow! So excited to hear you have the same thing! We certainly feel a bit isolated having never met someone else with seizures like my daughter or as frequent. I would love to hear more. Well the Internet said clonazapam was only for adults so guess that's right but I will ask the pediatrician next time. We certainly have big hopes that the lamotrogin will work as we are running out of meds to try :(

  • Hi I'm 29, I live in the UK, & have loads of seizures each night varying in severity, I have a fit sensor under my mattress which let's a telecare company know who calls the ambulance service if I don't respond...I'm on Epilim (sodium valproate) which I think I need to speak to my neurologist about & change as am also side effects, I'm a para-dressage rider & a mature student so its affecting my training & college uni work.

  • Heya, my name is Stefan. Im 26 years old . Im from Zimbabwe, i have got the same type of epilepsy, i have had since i was 15.....i have seizures due to the fact that i have a brain cyst ive had a craniotomy operation done but am still having seizures due to the constand pressure on my brain from the cyst.ive also been through that list of meds aswell but now am on a combination of leviteracitem and lamotragine and now only have one seizure at night but only one seizure with 5 weeks seizure free. I have a brain cyst though so am seeking medical assistance in my dads home town in Austria....:)

  • Hi Stefan, thanks so much for your message. So great to hear how you have improved from the early days. Since I last posted my daughter is having less than ten seizures a night which is much better than before. We are waiting to hear if we can increase her lamotrogin levels a bit as this seems to be helping. We've also started acupuncture and she's having this twice a week so thinking this is helping too. All the best with the brain cyst I hope you find someone who can improve things even more for you.

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