Finally got an answer! (Nocturnal seizures)

[Nc123]

Hi,
I have posted here only a few times. My 20 year old son has had 4 sleep seizures in the past year, only in his sleep in the mornings. His girlfriend who shares a bed with him has been the one to discover them. With everything we have thought of and know, he never had one previous to Nov. 26, 2009. Anyway, he has been to 3 neurologists and changed primary care doctors 3 times, complaints needed to be made, that's how bad things were. No one could figure anything out, no one even cared other then to throw high dosages of Keppra (3000mg a day) at him and tell him he cant drive until he hasnt had a (nocturnal) seizure for over 3 years. Screwed him over with the DMV. As I said, no reduced consciousness of any kind while awake - ever! After fighting the health plan for a different neurologist and being told we had already been to too many different neurologists and then fighting back again, the health plan finally set us up with a well known, veteran pediatric neurologist here where we live. He agreed to see my son although he is 20. I was skeptical at first as we have been disappointed so many times. You wouldn't believe what happened. This neurologist knew what was going on. I guess sometimes, 40 years of experience can make a difference. He reviewed everything and asked many pertinent questions, most of which no one had ever asked. He went on to explain how many severe cases he sees and that my sons case was boring but he was leading up to the answer. I wish I could have recorded the conversation just so I could listen again and fully comprehend every details but the jist of it is this: There is a stage of sleep where you dream (obviously) and dreaming helps your brain deal with overload of thoughts and basically helps it vent. In some people, mostly children, this process can turn into an "event" that is or mimics a seizure. Most people grow out of them and my son could easily still grow out of them. These problems happen more frequently in people who are always overthinking things and worrying and also people who have migraines (my son used to have frequent migraines). He was absolutely confident that these "events" do not affect one during waking hours and signed the DMV papers on the spot, stating there is no reason on earth why my son should not be allowed to drive. He dropped his Keppra down to 750mg once a day at bedtime only and will see him again in 3 months and will possibly remove it all together. In addition, contrary to what other doctors told him, there is no brain damage done unless a seizure lasts more than 30 minutes. One doctor had told my son that he would have brain damage each time he had the 1-2 minute events! We are ecstatic! We feel like this is a new beginning after a year of errors from hell. He will be okay, and has his future open again to whatever he wants to do for a career. I really hope this helps others. One doctor can know so much when so many others don't! (message me if you would like the doctor's name). Thank you to Nakamova and Endless and any others who have answered my posts here before!

[ponz10]

Hi I just joined and I saw your post and it mimics my son exactly. Our neurologist called his disorder Benign Rolandic Seizure disorder and he will also grow out of it. I didn't know if you knew the name and I wanted to share it with you. God Bless

[Nc123]

Thanks for the info ponz10! The doctor didn't mention that name but as I read about it, I see how it sort of sounds like it. He has none of the tingling or anything like that and he is 20 but there are always variations.
Thanks again!

[Nakamova]

I'm so thrilled for you and your son Nc123! Amazing how much of a difference the right doctor can make. If you can, keep us posted -- I'd love to hear when your son is off Keppra altogether...

[RobinN]

Dr Russell Blaylock - neurosurgeon, believes that many nocturnal seizures are due to hypoglycemia. He says it is misdiagnosed, and not a consideration by many conventional medical doctors.

[Endless]

I'm so glad that now you have a diagnosis. A good diagnosis is half the battle!

[Nc123]

Thanks everybody! I will keep you posted. So far no bad effects from the drop in Keppra over the last few days. And, exciting news today! It took a lot of phone calls and manager after manager at the DMV Driver Safety Office, but he finally got someone to get off their butts and get the form and as of an hour ago, his license is unsuspended!!

[Meetz1064]

that is just soooo cool, that what you've gone through has ended up turning out sooo well!

I am so VERY happy for you! And tickled pink for your son that he has his license back on top of everything else!

Yeahhhh!!!!!!!!!

[Nc123]

Just a follow up. I know it's been a year and a half but I'm back on because of my new discovery. To make a very long story short, we moved out of the mold-infested home we lived in and everything stopped-migraines and seizures. I'm currently pursuing experts in the field but our former landlords greed is what made the light bulb come on. He took our deposit and claimed part of the reason to be black mold growing on the wall user the window where my son slept! There are other things that connect this as well. I'm having him tested for a high sensitivity to it and we will see. We moved out of state but I might have ways of getting a sample. Not sure yet but we are still friends with all the old neighbors. If anyone else has any thoughts please feel free to share.

[Nakamova]

How terrible that you and your family had to suffer from the mold. Is your son off medication as well as being seizure and symptom-free?

[Nc123]

We are scared to remove the keppra yet and cannot find a competent enough doctor to help us with that. He called the office of that ped neurologist and the stupid office said they had no record of him ever being a patient. I am currently trying to figure out how to email the doctor because they have that new online system. I don't know if it will work. I was hoping to find a competent doctor here where we are now in the Seattle area but it turns out we are starting with an allergist. But then my son is going to be temporarily moving back to CA soon. We will see what we can find. But yes completely migraine and seizure free!

[RobinN]

WOW - best of luck with this. Sounds very hopeful.

I learned how to cut a capsule down by emptying out the contents and using a sharp knife to half the contents, and quarter them, and ... more if necessary. You could do this grain by grain if you want to go slow. . You could also crush a tablet and do the same. It is a way to go slower with the reduction if the body is sensitive or reacts to the elimination of the medicine more than the average person.