Yes, Karen- I can feel my wife helping me roll over before I can hear her. The first time I hear her is after I have come out of the aura or aura/seizure. Fear is the main reason why people who have these types of auras yell whether the be a young boy or adult. The first thought that I get in my mind as ayn adult is "What if this spinning or aura condition never stops?" A good combatant for young children is constant general explanations which emphasize- 1)they are having a problem in their sleep that does not make them different than anyone else 2)although the fear is there understand that you love them & they will always come out of the aura 3)do not always discuss this with your child, explain that on given sleep situations this will happen 4) simple explanation about seizure triggers, meds. I could go on & on but I won't Karen. Just so you will know I have had these type of auras/seizures for 64 years, living a normal life.- Please remember tat everything I have said applies to my personal neurological condition. One of the hardest things to get through is everybody has different auras, seizures, etc. - Good luck Karen- Sturg
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KarenB
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Thanks Sturg -- Jon's cognitive level is really low, so I'm not sure how much he understands of explanations. But he understands that these horrible episodes happen to him at night (evrey nigh -- starting a little over a week ago), and now he's afraid to go to bed. I've been sleeping in the room with him so I can be right there when he has a seizure -- some of his tonic/clonics are pretty bad. Last night, he had 3 tonics, and I just hopped out of bed and went and held him and stroked him and spoke to him until he relaxed and fell back asleep. He just had a mass of tests run to figure out why this surge in seizures (up to 4 tonic and tonic clonics each night after going almost a year seizure free).
Hi Karen, Good luck to Jon & you on test results. Do Jon's seizures happen at a certain time in his sleep period? Has his diet changed since he has started having seizures again? is he presently on meds or been on a ketogenic diet? What does he directly say to you when he comes out of seizure? I realize these are personal questions & no prob if you do not answer. I am not a doctor - I am a person who has epilepsy but I like to help people who are having seizure conditions which I recognize. - STURG in Boston, MA
KarenB
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Hi Sturg:
1) Usually, Jon has seizures around 3 or 4 in morning. However, this past week, he has been in a "seizure storm" and having several seizures each night beginning as early as 10:45 p.m. (his usual bedtime is around 8 p.m.) and as late as 6 a.m. the following morning. In the last 4 out of 5 nights - he has a seizure right around midnight (I call it the witching hour). He then has another about an hour or two later, and then might have one more around 5 or 6 in morning.
2) He has been on ketogenic diet for 1 1/2 years. The relapse in seizures began after a prolonged gastrointestinal illness, followed by an increase in calories (he lost 3 kilos) and a reduction in his ratio (so that he was getting more carbs). However, he has since returned to previous rato, and regained his lost weight.
3) He was weaned very slowly off Depakote (Valproic Acid) beginning in July 2011 through January 2012. No seizures during wean. Seizures relapsed about 2 month after wean completed. Now on no meds except Clonazapam as a rescue med, but his doctors are going to start him (tomorrow) on thyroid meds (he was just diagnosed with hypothyroidism) and a low dose of Zonegan.
4) He doesn't say anything when he comes out of a seizure (for one thing, he lost most of his language due to seizures or seizure meds about 2 years ago. If he has a tonic/clonic -- he doesn't regain consciousness -- he just sleeps for an hour or two. If he has a tonic, he'll sit up, and smile a little bit, and be restless for a few minutes, then fall asleep.
1) Usually, Jon has seizures around 3 or 4 in morning. However, this past week, he has been in a "seizure storm" and having several seizures each night beginning as early as 10:45 p.m. (his usual bedtime is around 8 p.m.) and as late as 6 a.m. the following morning. In the last 4 out of 5 nights - he has a seizure right around midnight (I call it the witching hour). He then has another about an hour or two later, and then might have one more around 5 or 6 in morning.
2) He has been on ketogenic diet for 1 1/2 years. The relapse in seizures began after a prolonged gastrointestinal illness, followed by an increase in calories (he lost 3 kilos) and a reduction in his ratio (so that he was getting more carbs). However, he has since returned to previous rato, and regained his lost weight.
3) He was weaned very slowly off Depakote (Valproic Acid) beginning in July 2011 through January 2012. No seizures during wean. Seizures relapsed about 2 month after wean completed. Now on no meds except Clonazapam as a rescue med, but his doctors are going to start him (tomorrow) on thyroid meds (he was just diagnosed with hypothyroidism) and a low dose of Zonegan.
4) He doesn't say anything when he comes out of a seizure (for one thing, he lost most of his language due to seizures or seizure meds about 2 years ago. If he has a tonic/clonic -- he doesn't regain consciousness -- he just sleeps for an hour or two. If he has a tonic, he'll sit up, and smile a little bit, and be restless for a few minutes, then fall asleep.
Karen, Jon has had some real difficult experiences in his life experiencing these neurological negatives caused by Down Syndrome. Certainy, the links between epilepsy, gastro problems are part of this. There are 2 very important positive directions in helping a child, such as Jon, live with his problem. One is to pursue all avenues of medical treatment that will reduce his seizures, etc which you are doing. I can tell this by your thoroughness & intelligence in what is happening to him. I hope there are support groups or links in Bangkok that will allow you to directly or indirectly speak to other parents who are going through similar problems with there children. The other direction is to have a warm & loving parent who really cares. He has this in you Karen! Love is the most important medicine for Jon & you give him this. Keep me posted, My wife is the director of the Epilepsy Foundation in Boston - this coming week I will ask her to give me some links in the national foundation on possible contact points for you to reach in the USA. Perhaps they will help you & Jon to get through this difficult time. - Sturg
KarenB
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Well, the seizures and seizure meds have had a worse impact on him neurologically than the Down Syndrome. He was talking in sentences before, and was bilingual ...now, maybe 5 words.
He doesn't normally have gastrointestinal illness, except for chronic diarrhea which was more pronounced when he was on a western diet rather than Asia (rice based), which the Keto diet helped (perhaps he had a gluten intolerance, altho he tested negative for Celiac). The illness he had last Spring was rotovirus (we all got it), but the rest of us recovered in several days, and he didn't -- partially because the high fat, low carb Keto diet isn't kind to intestines recovering from viral infection.
He doesn't normally have gastrointestinal illness, except for chronic diarrhea which was more pronounced when he was on a western diet rather than Asia (rice based), which the Keto diet helped (perhaps he had a gluten intolerance, altho he tested negative for Celiac). The illness he had last Spring was rotovirus (we all got it), but the rest of us recovered in several days, and he didn't -- partially because the high fat, low carb Keto diet isn't kind to intestines recovering from viral infection.
Karen, I do not have Celiac but when I have an MSG induced food or a sweetener I will have chills, diareah etc when I try to sleep that night. This does not mean that Jon has the same -I am just making you aware that you do not have to have Celiac-Dr Blaylock, has done studies on this, Sturg
DavidJames
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I experienced auras 4 or 5 times prior to my first Grand Mal.. Including a good 5 minutes leading up to it...What I experience is vertigo, taste of an ashtray, (I haven't smoked in close to a year now) , everything goes black and white, my eyes feel like their spinning but only peripheral, and of course the feeling of doom!!
After being clear of seizures for 3 months after my first grand mal ( march 18/2012 ) but I now have these auras typically twice a week now, half expecting a big event on its way.
After being clear of seizures for 3 months after my first grand mal ( march 18/2012 ) but I now have these auras typically twice a week now, half expecting a big event on its way.
DavidJames
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Yes and it only takes a couple of pints to start feeling them. Considering conducting an experiment with a 12 pack of beer and a video camera, I'll be the guinea pig!?, 
And yes I think I drink too much aspartame (coke zero) so I will be knocking that off the grocery list.
I've read some actually classify the aura as a seizure and not necessary a prelude to a grand mal.
And yes I think I drink too much aspartame (coke zero) so I will be knocking that off the grocery list.
I've read some actually classify the aura as a seizure and not necessary a prelude to a grand mal.
DJ, Do you try to roll over or pull yourself out of the vertigo/spinning?-I do. MSG is probably the worst trigger for me - it is disguised by many other names on labels & is finally being realized has a strong exitotoxin kick in the brain that causes neurological problems. All my life every time I ate Chinese food, Campbell soup etc I had trouble with lightheadeness. If you want to try giving MSG inputs to your diet up, it turned me around in controlling my aura/seizures. Lyrica also helped me a lot because it has a glutamate blocker in it.-Sturg
DavidJames
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Definitely do all I can to pull out of it, if it's a prelude to a primary seizure of course I would. Whether or not it will prevent one? Doubt it! I have even gone up to a stranger and explained what may happen just in case. Now I have someone who will call my cell every 5 mins when im out alone and feel I may go into a seizure.. I'll have to look into MSG a little bit more. I've started a diary noting everything I can, specially since I've been seizing a lot lately, and my memory is not as good anymore..
You know those 3d optical illusions you have to stare at?? Within seconds of staring at one I will feel the effects of an aura coming on..
You know those 3d optical illusions you have to stare at?? Within seconds of staring at one I will feel the effects of an aura coming on..
KarenB
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I was just reading that with temporal lobe epilepsy, that the so-called "auras" are actually really a kind of simple partial seizure. Because they often precede a tonic/clonic (grand mal) seizure, they are often confused as an aura, when in fact they are seizures.
Interesting take -- not sure how that would be verified unless on a 24 hour EEG and noting any possible auras.
Interesting take -- not sure how that would be verified unless on a 24 hour EEG and noting any possible auras.
They do take place before the tonic-clonic seizure. I woulda agree that the could be a simple partial seizure. For me, now, they are rarely followed by a tonic-clonic seizure & they sometimes last 1 to 2 minutes. Sometimes I will have they strength to flip myself over on my back & sit up. If I can do this I will sit up & take .5mg Ativan, then fall back to sleep & be ok. I wish while I felt this spinning sensation coming on I had a button to push & it would flip me over & wake me up. I guess that's just being me! -Sturg