Daughter not on medication for seizure no diagnosis

Posted by cc001 @cc001, Nov 11, 2019

Hello. It's been a year since my healthy daughter started random seizures. Only at nights and happens between 1am and 3 am.. she's progressing really well and incidents less when we worked on a lot of emotional issues and she is doing amazing at school now and worked out a lot of her social issues and self expressing. Doctors think it's triggered by emotions although episodes emulate seizures..should I consider putting her on medication since video EEG takes forever to get an appojntment? Right now episodes are less frequent and only at nights. I just would not want to put her on meds if I don't have to. Your input will be greatly appreciated. Right now it's not affecting her daily living she is a competitve full time dancer and still competes ..when she wakes up from the seizure she is fully aware and I ask her questions and she's fine. It's like nothing happened. Any incidents similar would love to chat

Hello
I see that you are a relatively new member to Connect. Welcome! I'm sorry to hear about your daughter's seizures. I'd like to invite @jakedduck1 to join in this discussion. I believe he has had seizures since childhood and he may be able to offer some suggestions.

You do not mention your daughter's age, however, you might find this Mayo Video Q&A about pediatric seizures to be informative. Here is the link,
https://connect.mayoclinic.org/webinar/video-qa-about-pediatric-epilepsy-and-seizures/?date=1573084800
Is your daughter being seen by a seizure specialist?

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@cc001

Here is a link to another Mayo Video Q&A about epilepsy,
https://connect.mayoclinic.org/webinar/video-qa-about-epilepsy/?date=1572220800
How long has your daughter been having these night-time seizures?

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@cc001
Hello,
Thank you Teresa for bringing this to my attention. I have had Epilepsy for 52 years.
If your daughter has emotional issues like anxiety and/or depression those or other psychological issues can be major triggers for seizures in Epilepsy. However, if they are Psychological problems it's possible she is having Psychogenic Non-Epileptic Seizures (PNES) or possibly both.
Unlike epileptic seizures, PNES do not result from an abnormal electrical discharge from the brain; they are a physical manifestation of a psychological disturbance. Be careful to get an accurate diagnosis, sadly occasionally some Neurologists will diagnose a patient with PNES if they have a normal EEG. Unless you have a seizure during the test it will likely be normal, but that doesn’t mean the person doesn’t have Epilepsy.
Nocturnal seizures disrupt sleep. They can also affect concentration and performance at work or school. You have made some statements which I'm hoping are strictly descriptive regarding ”Only at night,” please don't think these episodes are any less serious because they only happen at night. Although I don't mean to alarm you I believe that I need to be honest. Nocturnal seizures are associated with an increased risk for Sudden Unexpected Death in Epilepsy, (SUDEP) which is a rare cause of death in people with epilepsy, about one in every thousand but when you consider the actual number of people with Epilepsy it happens quite a bit. You may want to consider getting a seizure pillow (Antisuffocation pillow.) These pillows aren't the most comfortable but it may help.
How often is you daughter having these episodes? I would take her to an Epileptologist who is a Neurologist who specializes in Epilepsy at an Epilepsy Center. I would get her scheduled for a Video EEG (VEEG) as soon as possible. You both need to know what is going on.
Has she had an MRI or other imaging or a regular EEG? How old is she? Were it my family member I'd begin Antiepilepsy medication. If it's Epilepsy the medication may help, if it's PNES it won't. The Neurologist may be unwilling to medicate if s/he believes the episodes are psychologically induced.
In case it is Epilepsy or PNES you might consider investing in a seizure alarm system. Most people wouldn't but I'm very cautious. PNES patients are twice as likely to die than the general population.
The mortality rate in Epilepsy patients is 1.6 – 9.3 times higher than the normal population.
Best of luck,
Jake

REPLY
@jakedduck1

@cc001
Hello,
Thank you Teresa for bringing this to my attention. I have had Epilepsy for 52 years.
If your daughter has emotional issues like anxiety and/or depression those or other psychological issues can be major triggers for seizures in Epilepsy. However, if they are Psychological problems it's possible she is having Psychogenic Non-Epileptic Seizures (PNES) or possibly both.
Unlike epileptic seizures, PNES do not result from an abnormal electrical discharge from the brain; they are a physical manifestation of a psychological disturbance. Be careful to get an accurate diagnosis, sadly occasionally some Neurologists will diagnose a patient with PNES if they have a normal EEG. Unless you have a seizure during the test it will likely be normal, but that doesn’t mean the person doesn’t have Epilepsy.
Nocturnal seizures disrupt sleep. They can also affect concentration and performance at work or school. You have made some statements which I'm hoping are strictly descriptive regarding ”Only at night,” please don't think these episodes are any less serious because they only happen at night. Although I don't mean to alarm you I believe that I need to be honest. Nocturnal seizures are associated with an increased risk for Sudden Unexpected Death in Epilepsy, (SUDEP) which is a rare cause of death in people with epilepsy, about one in every thousand but when you consider the actual number of people with Epilepsy it happens quite a bit. You may want to consider getting a seizure pillow (Antisuffocation pillow.) These pillows aren't the most comfortable but it may help.
How often is you daughter having these episodes? I would take her to an Epileptologist who is a Neurologist who specializes in Epilepsy at an Epilepsy Center. I would get her scheduled for a Video EEG (VEEG) as soon as possible. You both need to know what is going on.
Has she had an MRI or other imaging or a regular EEG? How old is she? Were it my family member I'd begin Antiepilepsy medication. If it's Epilepsy the medication may help, if it's PNES it won't. The Neurologist may be unwilling to medicate if s/he believes the episodes are psychologically induced.
In case it is Epilepsy or PNES you might consider investing in a seizure alarm system. Most people wouldn't but I'm very cautious. PNES patients are twice as likely to die than the general population.
The mortality rate in Epilepsy patients is 1.6 – 9.3 times higher than the normal population.
Best of luck,
Jake

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She has it like two or three times a month and the video EEG appointment is not available til may or June 2020 which is ridiculous . Would you then medicate even without diagnosis from Video EEG? She is 15 yes old ..she would at some nights wake up with jerking movements and would go away by doing breathing exercises and not seize.its been a year..doctor didn't want to put on medication but since it is still occurring even less frequent, they are now giving option of testing medication

If it goes away it means it's epileptic as they are not sure ..
Should we try medication and test out? I just don't want to give it without proper diagnosis

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@cc001

She has it like two or three times a month and the video EEG appointment is not available til may or June 2020 which is ridiculous . Would you then medicate even without diagnosis from Video EEG? She is 15 yes old ..she would at some nights wake up with jerking movements and would go away by doing breathing exercises and not seize.its been a year..doctor didn't want to put on medication but since it is still occurring even less frequent, they are now giving option of testing medication

If it goes away it means it's epileptic as they are not sure ..
Should we try medication and test out? I just don't want to give it without proper diagnosis

Jump to this post

@cc001
Hello,
I certainly understand being hesitant on medicating as these drugs do come with side effects but I would try them. 70% of people with Epilepsy are controlled on medication. There are 24 seizure drugs and getting the right one or combination is often challenging. Have they ruled out Catamenial epilepsy, also known as menstrual seizures?
Does your daughter ever have a headache, feel sore, tired or possibly sick? Does she feel confused, or have memory problems or ever bite her tongue or cheeks?
I'm I understanding that she wakes up and is jerking while awake and alert? Does she ever lose consciousness? Have you ever heard what's known as the Ictal Cry which is when air pushes up past the larynx creating a scream or cry type sound during a Tonic-Clonic seizure? Have you ever seen her have one? How long do they last?
Take care,
Jake

REPLY
@jakedduck1

@cc001
Hello,
I certainly understand being hesitant on medicating as these drugs do come with side effects but I would try them. 70% of people with Epilepsy are controlled on medication. There are 24 seizure drugs and getting the right one or combination is often challenging. Have they ruled out Catamenial epilepsy, also known as menstrual seizures?
Does your daughter ever have a headache, feel sore, tired or possibly sick? Does she feel confused, or have memory problems or ever bite her tongue or cheeks?
I'm I understanding that she wakes up and is jerking while awake and alert? Does she ever lose consciousness? Have you ever heard what's known as the Ictal Cry which is when air pushes up past the larynx creating a scream or cry type sound during a Tonic-Clonic seizure? Have you ever seen her have one? How long do they last?
Take care,
Jake

Jump to this post

None of these things at all. During seizure shaking is less than a minute but the whole episode is 20mins. Starts with the jerks then the shaking then disorientation and then wakes up alert like nothing happens and I ask her questions to check memory and no issues. She is an A student thriving in school and her competitive dance. Life for her is completely normal, she's accepted and made this a part of her life. She is doing so well and o would hate to mess up her system by testing medication and it's not necessary …her third cousin had seizure from grade 10 to first yr of college and just went away. I am hoping this is the case for my daughter ..I video tape all episode for neurologist to analyze. She emulates seizures but with everything else they think it's psychogenic not epileptic. As soon as we worked through emotional issues, incidents became less frequent. She is doing incredible since we've made significant lifestyle changes

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I just read up on Keppra . Possible side effects and if you stop it can increase seizures. There is no way I would want my daughter to go through this ..she is perfectly healthy other than the random seizures at nights. Would love more input here. thank you so far for all your responses .

Screenshot_20191112-215019

Liked by Leonard

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@cc001

None of these things at all. During seizure shaking is less than a minute but the whole episode is 20mins. Starts with the jerks then the shaking then disorientation and then wakes up alert like nothing happens and I ask her questions to check memory and no issues. She is an A student thriving in school and her competitive dance. Life for her is completely normal, she's accepted and made this a part of her life. She is doing so well and o would hate to mess up her system by testing medication and it's not necessary …her third cousin had seizure from grade 10 to first yr of college and just went away. I am hoping this is the case for my daughter ..I video tape all episode for neurologist to analyze. She emulates seizures but with everything else they think it's psychogenic not epileptic. As soon as we worked through emotional issues, incidents became less frequent. She is doing incredible since we've made significant lifestyle changes

Jump to this post

Just to correct, she does the ictal cry when the seizure is about to start

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I do that. I didn’t know it had a name. Thanks

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@cc001

I just read up on Keppra . Possible side effects and if you stop it can increase seizures. There is no way I would want my daughter to go through this ..she is perfectly healthy other than the random seizures at nights. Would love more input here. thank you so far for all your responses .

Jump to this post

Hi, @cc001 – I wanted to add my welcome to Mayo Clinic Connect. I noted you mentioned reading about levetiracetam (Keppra), so thought you might be interested in checking out this Connect thread on that topic https://connect.mayoclinic.org/discussion/keppra/

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@cc001

Just to correct, she does the ictal cry when the seizure is about to start

Jump to this post

Yes she does the ictal cry ..she has seizure 3 times a month and terrified to put her on meds to test her body..video EEG scheduled March 6 ..what would you do? She also twitches in the day now..but only has seizures at nights between 1am.and 3am if she has it

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