Intractible Nocturnal Seizures - Epilepsy Research UK

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Intractible Nocturnal Seizures

khen profile image

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

19 Replies

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.

khen profile image
khen in reply to Pauley

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 :)


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 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.

khen profile image
khen in reply to Am54

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

khen profile image
khen in reply to riverboat

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...

khen profile image
khen in reply to Xena111

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....:)

khen profile image
khen in reply to stefanovich

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.

Hi khen, we sound like we are in a very similar situation. Over the last year our ten year old son has been having nocturnal seizures. It started last year whilst we were on holiday and he was asleep in the back of the car when he had a short seizure. From this he had one every 8 weeks, then every 6 weeks to the point where this summer he had around 15 to 16 in one night and began to have mild seizures in the day! The seizures appear to be focal as it always affects his right arm and leg, his MRI was normal and the hour long EEG was also normal. However these tests were done when he only had a couple a week. He has just got to the top dose of Lamotrogine and things have settled slightly in that he has around 3 to 4 a night and only a tingling sensation in his right leg sometimes in the day. (During the really bad week in the summer they gave us a week of Clobasam, which to the doctors surprise didn't make much difference). We are now starting on Keppra and really hope that it works. Last week he was referred to a neurologist and also for a 48hr EEG which isn't until the 4th of Dec!. Through all this our lad seems to take it all in his stride like your daughter, however I do wonder how long he can sustain this lack of good sleep. The only thing we think re his behaviour is that he is very slow to follow a request and at times seems a bit distant, but is this just a 10 year old lad or is it the lack of sleep?? My husband and I are taking turns in sleeping in his room as we don't know what else to do. Do you do this? Or do you manage it with a baby monitor? I will try the aromatherapy but I thought that all oils are contraindicated in epilepsy? (The only reason I thought this was because I'm a midwife and we use it on women but not on anyone with epilepsy). Would be good to see your progress.

khen profile image
khen in reply to Mum-

Hi. Thanks so much for your response. So much has happened since I last posted on here. Several more times in hospital last year and we tried more combinations of medications. She takes 7 pills am and pm and the specialist wanted to try the next one, Phenytoin. We told her we weren't keen and that nothing seemed to work. We noticed that the only reprieve from seizures was when she was really sick and off her food and this gave our paediatrician the idea that the ketogenic diet may work as she would've been in ketosis while she was off her food with the fasting. So started our journey and it's been amazing!! Because of her age she's on more like the modified Atkins diet than the true ketogenic diet. But the results have been amazing. Within 10 days her seizures were decreasing. We now have about 80% of nights with NO seizures! Other nights 5 or less. Only a few nights occasionally would she have 10. The dieticians are still tweaking her carbohydrate intake but having no sugar and only 20g of carbs a day has been a miracle for us. We are now weaning off her meds too as we tweak the diet further. Has been a huge journey but hoping we are getting our girl back . She's gained weight. Grown taller and able to attend school again. It's wonderful 😀

I also suffered from nocturnal grand mal seizures when I was 15 back in 1974 and was a very scary and most terrible time of my life. My seizures were so severe I would be unconscious for 24 hours . I can feel for your daughter's condition and hope that she continues to have more relief as time goes on. Many years ago it was found that my seizures were caused by the lack of a funnel system at the base of the brain which filters the increased amount of serotonin from one side of the brain to the other. So if I was really excited or upset the increased amount of serotonin was not being filtered. It was good to know the cause of the epilepsy in my case. I currently have been on a combination of dilantin and clobazam for the last 15 years I have not felt that awful sensation for a number of years. It takes a lot of patience and research. I wish all the best for you and your daughter.

khen profile image
khen in reply to elsieadams

How interesting. It must've taken a very attentive doctor to work out that cause in you. Thank you so much for your response and time

I saw many doctors until I found a neurologist that had many patients that had epilepsy. He therefore had done a lot of research in this area and was very attentive to all of us. He is now retired but I hope there will be more doctors take on the task to help out those still in need of care. I find the biggest question people need the answer to is why to which there are a lot of variables.

Hi Khen i was diagnosed NOCTURNAL 10 years ago and i find Olbas Oil is great for relxation. I take 300 mg Lamotrigine daily, although the Grand mal/ Tonic Clonic seizures are under control , i still suffer with petite seizures. tiredness is a definately a trigger for me too. i wish you all the best, take care of yourselves xxx

Hello Khen, I'm sorry this is so late, I hope your daughter is doing better now? I had been suffering from nocturnal seizures for a couple of years. Sometimes just 1 but other nights many. Medication just messed me up, mentally and physically, but i have discovered through my own research that low blood sugar was the culprit for me. I am hypoglycemic(Not diabetic related) since having a parasite 10 years ago - it messed up my stomach etc so couldn't absorb food properly. Anyway, I have found that eating a couple of crackers/crispbread with plenty of butter, plus some nuts or seeds, just before bed has helped me. This plus CBD oil taken before I go to sleep and eating low carb/high fat and protein has kept me seizure free for around 6 months now. Fingers crossed! I realise you may be reluctant to try these things with your child, I am an adult!, but just thought I would mention it in case you did wish to try 'alternative' remedies. Best of luck and keep hoping.

Sorry Khen, have just scrolled further down and read your last post! That's fantastic! So happy to hear that this is working for your daughter, without all the awful medication. Best of luck.

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