@ckc45
People don't usually fall asleep during a drop seizure but it depends on the person and the type of drop seizure. Some have focal seizures while most have generalized seizures with some degree of impaired consciousness which may or may not include some post-ictal confusion and possibly some deep sleep that you may or may not be able to awakenen the person from easily. Can you describe what happens during the seizure? If it was a generalized drop seizure, you probably don't remember. If you were standing did you fall? Did you feel weakness anywhere?
Sleep during the post-ictal phase of a seizure is caused because your brain has not yet recovered back to normal although it is more normal than during the seizure and doesn't last as long, usually from minutes to hours.
Take care,
Jake
Thanks Jake. It’s not me, it’s my 11 yo son and he can’t tell me what he’s experiencing- he’s nonverbal and doesn’t effectively communicate beyond pulling our hands yet.
It seems that being sleepy might be a trigger for his drop attacks and I’ve also seen for sure that GI issues are triggers. He falls over and over. Sometimes it’s just his head that falls over and while it looks like it goes limp at first, when I try to lift it he does have muscle tone in it after just a second or two. Sometimes it seems to be one side of his body or his legs get wobbly and go limp. Sometimes he falls backward, sometimes to side, or he just slumps or crumples, and he just had his first forward fall and busted his lip. He wears a helmet. He hasn’t had any drops while monitored by veeg so we haven’t gotten to see any eeg correlation. Neuro said he doesn’t go limp as rapidly as is typical for atonic seizures and that it looks more like a person nodding off to sleep from being overly tired or overly sedated. But it’s not how my son acts other times he’s very tired or when he’s been on a high amount of sedating medication before. He has history of ESES, resolved on eeg for some time now. These drops just began last August and not associated with any meds changes. Only thing new was onset of diarrhea- temporary- and hives. Chronic hives continue, but allergy/immunology hospitalized him and follows him and has found no cause and determined the drops are not inherently related to A/I and told us this is an issue for neuro. His ped neuros are dismissive and have also asked me if this is just autistic “behavior”. I am certain it is not “behavior”. That’s why we are looking into Mayo (and Boston and Texas) for second neuro opinion.
@ckc45
It doesn't sound like falling asleep to me.
Even if your son was able to communicate the chances are he may not have any memory of the episodes since all seizures can affect memory. As I understand it, the brain is incapable of creating memories during a seizure. I don't have drop seizures, that I know of, I do too fall a lot. I've had epilepsy for almost 60 years and I've had over 13,300 seizures and I've only had one which was a focal aware seizure/aura that I have any memory of. Someone always had to tell me I had a seizure even though I may have been laying on the floor, my tongue & cheeks chewed up and aching from the contractions, I never knew what happened.
I think the second opinions are a great idea. It's no easy chore to find a good neurologist. I have been to so many. What type of antiseizure medication is he on?
Blessings to your son and family,
Jake
Thank you, Jake!
He takes clobazam and Epidiolex.
It’s frustrating when these events like your seizures can be so dangerous even just from the falls and still they might not get taken seriously if they are not caught on eeg.
Hello! I can't really say much about the drop seizures but I noticed you said he had hives and diarrhea. I have seizures and also Celiac disease. I was curious if you took him to a gastroenterologist. They are noticing some connections to Celiac and seizures in a little research being done. Celiac causes the lining in the small intestine from absorbing nutrients and things properly. It can cause diarrhea and a rash. I am not saying that is what he has but it couldn't hurt to find out. It could be making a trickle down effect that could potentially be causing this. I hope they figure it out soon. When seizures change it can be terrifying. I have had my seizures change from aware to missing time. I hope you get answers soon.
Chris Gautier OR Santosha | @santosha | Jul 5 8:23am
@heatherae @ckc45
Good Morning!
It is more and more known that there is a strong connection between the gut and the brain. It is even said that the gut might be our first brain as there are more neurotransmissors in this organ than in the brain.
I, for example, have observed that many times after a seizure I need to go to the toilet after it, even if I did it before, showing this close connection between the gut and the brain. Taking gluten out of diet (since January 2022) has had a tremendous positive impact on my seizures. With a gluten free diet, my seizures in the year 2022 were reduced by 60% compared to my seizures in the year of 2021. So, I continue on a gluten free diet. Due to this results, my epileptologist at that time (start of 2023) recommended me a gastroenterologist and SIBO (small intestinal bacterial overgrowth) was diagnosed. According to the gastroenterologist, my SIBO was probably caused by an AED that I took for more than one year (2019-2020). Medication was prescribed to me for treating SIBO, helping but not solving it completely. What has helped me the most is an anti-inflammatory diet I have been following since November 2023. This year, I have observed that my seizures in the first semester were 45% lower if compared to the same period last year. As I was diagnosed having refractory temporal lobe epilepsy, AEDs were withdrawn in 2021 and substituted by medical cannabis. @heatherae is very interesting what you shared here with us, saying that Celiac can cause not only diarrhea (and other gut problems), but also skin rashes. I have skin rashes that appear from time to time (after my SIBO dignosis, it has also been found out through exams that I am gluten intolerant). I had no idea that gut problems could also cause problems outside the gut such as skin rashes. I will discuss it with my gastroenterologist and ask him if this is connected to my SIBO. Thank you so much for sharing that with us!
One last comment. Today I received happy news from a father whose girl has epilepsy. Gluten has been taken out of her diet at the start of this year and she has been seizure free since February. The AEDs she takes do not fully control her seizures, but now together with a gluten-free diet, this girl is showing positive results on her seizures' control.
I share here with you all a video of Dr. David Perlmutter (American neurocientist and neurologist) on Epilepsy & Gluten Sensitivity: https://drperlmutter.com/epilepsy-gluten-sensitivity/
Wishing you all a happy Friday and weekend!
Chris (@santosha)
@heatherae @ckc45
Good Morning!
It is more and more known that there is a strong connection between the gut and the brain. It is even said that the gut might be our first brain as there are more neurotransmissors in this organ than in the brain.
I, for example, have observed that many times after a seizure I need to go to the toilet after it, even if I did it before, showing this close connection between the gut and the brain. Taking gluten out of diet (since January 2022) has had a tremendous positive impact on my seizures. With a gluten free diet, my seizures in the year 2022 were reduced by 60% compared to my seizures in the year of 2021. So, I continue on a gluten free diet. Due to this results, my epileptologist at that time (start of 2023) recommended me a gastroenterologist and SIBO (small intestinal bacterial overgrowth) was diagnosed. According to the gastroenterologist, my SIBO was probably caused by an AED that I took for more than one year (2019-2020). Medication was prescribed to me for treating SIBO, helping but not solving it completely. What has helped me the most is an anti-inflammatory diet I have been following since November 2023. This year, I have observed that my seizures in the first semester were 45% lower if compared to the same period last year. As I was diagnosed having refractory temporal lobe epilepsy, AEDs were withdrawn in 2021 and substituted by medical cannabis. @heatherae is very interesting what you shared here with us, saying that Celiac can cause not only diarrhea (and other gut problems), but also skin rashes. I have skin rashes that appear from time to time (after my SIBO dignosis, it has also been found out through exams that I am gluten intolerant). I had no idea that gut problems could also cause problems outside the gut such as skin rashes. I will discuss it with my gastroenterologist and ask him if this is connected to my SIBO. Thank you so much for sharing that with us!
One last comment. Today I received happy news from a father whose girl has epilepsy. Gluten has been taken out of her diet at the start of this year and she has been seizure free since February. The AEDs she takes do not fully control her seizures, but now together with a gluten-free diet, this girl is showing positive results on her seizures' control.
I share here with you all a video of Dr. David Perlmutter (American neurocientist and neurologist) on Epilepsy & Gluten Sensitivity: https://drperlmutter.com/epilepsy-gluten-sensitivity/
Wishing you all a happy Friday and weekend!
Chris (@santosha)
Chris, I believe you recommended this video before and I just didn’t follow through. I believe I’m ready now to give this a try and as the doc says, what harm can it possibly do? This med adjusting has not helped me so far and seems to be worse. Thank you for this!
Chris Gautier OR Santosha | @santosha | Jul 5 2:16pm
Correct @baa ! Indeed, I have already shared this video before in other posts.
As your doctor has well said, taking gluten out of your diet will not harm you. So give it a try and share the results with us all.
I am sorry to hear that this last med adjusting has not brought improvements so far. What has happened, if you feel comfortable sharing with us? How long have you been on this last med adjusting? Remember just that if it continues not helping, meds always be changed.
Wishing you a beautiful weekend!
Chris (@santosha)
Hi Chris. My grand Mal’s were two months apart (almost within a day) after increases with lacosimide, which is only the second med I have tried. Couldn’t take Keppra due to side effects even though it controlled seizures much better. I have not talked to the Dr since this last trip to hospital a week ago so don’t know what he wants to do. This last time, however, I did experience two freezing, staring auras earlier in the day so daughter spent the night and I wasn’t alone. For that I am thankful for.
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@ckc45
People don't usually fall asleep during a drop seizure but it depends on the person and the type of drop seizure. Some have focal seizures while most have generalized seizures with some degree of impaired consciousness which may or may not include some post-ictal confusion and possibly some deep sleep that you may or may not be able to awakenen the person from easily. Can you describe what happens during the seizure? If it was a generalized drop seizure, you probably don't remember. If you were standing did you fall? Did you feel weakness anywhere?
Sleep during the post-ictal phase of a seizure is caused because your brain has not yet recovered back to normal although it is more normal than during the seizure and doesn't last as long, usually from minutes to hours.
Take care,
Jake
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Like -
Helpful -
Hug
3 ReactionsThanks Jake. It’s not me, it’s my 11 yo son and he can’t tell me what he’s experiencing- he’s nonverbal and doesn’t effectively communicate beyond pulling our hands yet.
It seems that being sleepy might be a trigger for his drop attacks and I’ve also seen for sure that GI issues are triggers. He falls over and over. Sometimes it’s just his head that falls over and while it looks like it goes limp at first, when I try to lift it he does have muscle tone in it after just a second or two. Sometimes it seems to be one side of his body or his legs get wobbly and go limp. Sometimes he falls backward, sometimes to side, or he just slumps or crumples, and he just had his first forward fall and busted his lip. He wears a helmet. He hasn’t had any drops while monitored by veeg so we haven’t gotten to see any eeg correlation. Neuro said he doesn’t go limp as rapidly as is typical for atonic seizures and that it looks more like a person nodding off to sleep from being overly tired or overly sedated. But it’s not how my son acts other times he’s very tired or when he’s been on a high amount of sedating medication before. He has history of ESES, resolved on eeg for some time now. These drops just began last August and not associated with any meds changes. Only thing new was onset of diarrhea- temporary- and hives. Chronic hives continue, but allergy/immunology hospitalized him and follows him and has found no cause and determined the drops are not inherently related to A/I and told us this is an issue for neuro. His ped neuros are dismissive and have also asked me if this is just autistic “behavior”. I am certain it is not “behavior”. That’s why we are looking into Mayo (and Boston and Texas) for second neuro opinion.
-
Like -
Helpful -
Hug
3 Reactions@ckc45
It doesn't sound like falling asleep to me.
Even if your son was able to communicate the chances are he may not have any memory of the episodes since all seizures can affect memory. As I understand it, the brain is incapable of creating memories during a seizure. I don't have drop seizures, that I know of, I do too fall a lot. I've had epilepsy for almost 60 years and I've had over 13,300 seizures and I've only had one which was a focal aware seizure/aura that I have any memory of. Someone always had to tell me I had a seizure even though I may have been laying on the floor, my tongue & cheeks chewed up and aching from the contractions, I never knew what happened.
I think the second opinions are a great idea. It's no easy chore to find a good neurologist. I have been to so many. What type of antiseizure medication is he on?
Blessings to your son and family,
Jake
-
Like -
Helpful -
Hug
3 ReactionsThank you, Jake!
He takes clobazam and Epidiolex.
It’s frustrating when these events like your seizures can be so dangerous even just from the falls and still they might not get taken seriously if they are not caught on eeg.
-
Like -
Helpful -
Hug
2 ReactionsHello! I can't really say much about the drop seizures but I noticed you said he had hives and diarrhea. I have seizures and also Celiac disease. I was curious if you took him to a gastroenterologist. They are noticing some connections to Celiac and seizures in a little research being done. Celiac causes the lining in the small intestine from absorbing nutrients and things properly. It can cause diarrhea and a rash. I am not saying that is what he has but it couldn't hurt to find out. It could be making a trickle down effect that could potentially be causing this. I hope they figure it out soon. When seizures change it can be terrifying. I have had my seizures change from aware to missing time. I hope you get answers soon.
-
Like -
Helpful -
Hug
4 Reactions@heatherae
@ckc45
Good Morning!
It is more and more known that there is a strong connection between the gut and the brain. It is even said that the gut might be our first brain as there are more neurotransmissors in this organ than in the brain.
I, for example, have observed that many times after a seizure I need to go to the toilet after it, even if I did it before, showing this close connection between the gut and the brain. Taking gluten out of diet (since January 2022) has had a tremendous positive impact on my seizures. With a gluten free diet, my seizures in the year 2022 were reduced by 60% compared to my seizures in the year of 2021. So, I continue on a gluten free diet. Due to this results, my epileptologist at that time (start of 2023) recommended me a gastroenterologist and SIBO (small intestinal bacterial overgrowth) was diagnosed. According to the gastroenterologist, my SIBO was probably caused by an AED that I took for more than one year (2019-2020). Medication was prescribed to me for treating SIBO, helping but not solving it completely. What has helped me the most is an anti-inflammatory diet I have been following since November 2023. This year, I have observed that my seizures in the first semester were 45% lower if compared to the same period last year. As I was diagnosed having refractory temporal lobe epilepsy, AEDs were withdrawn in 2021 and substituted by medical cannabis.
@heatherae is very interesting what you shared here with us, saying that Celiac can cause not only diarrhea (and other gut problems), but also skin rashes. I have skin rashes that appear from time to time (after my SIBO dignosis, it has also been found out through exams that I am gluten intolerant). I had no idea that gut problems could also cause problems outside the gut such as skin rashes. I will discuss it with my gastroenterologist and ask him if this is connected to my SIBO. Thank you so much for sharing that with us!
One last comment. Today I received happy news from a father whose girl has epilepsy. Gluten has been taken out of her diet at the start of this year and she has been seizure free since February. The AEDs she takes do not fully control her seizures, but now together with a gluten-free diet, this girl is showing positive results on her seizures' control.
I share here with you all a video of Dr. David Perlmutter (American neurocientist and neurologist) on Epilepsy & Gluten Sensitivity: https://drperlmutter.com/epilepsy-gluten-sensitivity/
Wishing you all a happy Friday and weekend!
Chris (@santosha)
-
Like -
Helpful -
Hug
4 ReactionsChris, I believe you recommended this video before and I just didn’t follow through. I believe I’m ready now to give this a try and as the doc says, what harm can it possibly do? This med adjusting has not helped me so far and seems to be worse. Thank you for this!
-
Like -
Helpful -
Hug
1 ReactionCorrect @baa ! Indeed, I have already shared this video before in other posts.
As your doctor has well said, taking gluten out of your diet will not harm you. So give it a try and share the results with us all.
I am sorry to hear that this last med adjusting has not brought improvements so far. What has happened, if you feel comfortable sharing with us? How long have you been on this last med adjusting? Remember just that if it continues not helping, meds always be changed.
Wishing you a beautiful weekend!
Chris (@santosha)
-
Like -
Helpful -
Hug
1 ReactionHi Chris. My grand Mal’s were two months apart (almost within a day) after increases with lacosimide, which is only the second med I have tried. Couldn’t take Keppra due to side effects even though it controlled seizures much better. I have not talked to the Dr since this last trip to hospital a week ago so don’t know what he wants to do. This last time, however, I did experience two freezing, staring auras earlier in the day so daughter spent the night and I wasn’t alone. For that I am thankful for.
And a good weekend to come for you Chris!