Intractible Nocturnal Seizures

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.

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.

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

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

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 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.

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.

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.