Status Epilepticus

Posted by Teresa, Volunteer Mentor @hopeful33250, Nov 14, 2019

I have noticed that this term, Status epilepticus, has been mentioned in the Epilepsy discussions. As I was unfamiliar with this term I thought I would get some information.

Here is a link from WebMD https://www.webmd.com/epilepsy/status-epilepticus#1-2

From reading this I can tell that this is a more serious type of epilepsy.

After you read this article, will you discuss it?

Yes it’s very serious. My parents were called to the hospital numerous times to bid me farewell but being stubborn as I am I lived. I have been in induced comas for probably 3 years (cumulatively.) The longer seizures go on without stopping the less likely they will stop on there own which is why they put you in a coma, to stop the seizures. Besides Convulsive Status which people with Tonic Clonic seizures have there is Non Convulsive Status Epilepticus that sometimes happen in those with Absence and Focal seizures and emergency treatment isn’t as urgent. An acquaintance of mine went into Status and died in less than an hour which is a very long time to seize. Seizures use immense amounts of energy.
Jake

REPLY
@jakedduck1

Yes it’s very serious. My parents were called to the hospital numerous times to bid me farewell but being stubborn as I am I lived. I have been in induced comas for probably 3 years (cumulatively.) The longer seizures go on without stopping the less likely they will stop on there own which is why they put you in a coma, to stop the seizures. Besides Convulsive Status which people with Tonic Clonic seizures have there is Non Convulsive Status Epilepticus that sometimes happen in those with Absence and Focal seizures and emergency treatment isn’t as urgent. An acquaintance of mine went into Status and died in less than an hour which is a very long time to seize. Seizures use immense amounts of energy.
Jake

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Thanks for sharing some personal experiences, @jakedduck1. I am sorry to hear of your many seizures.

Are you on a pretty good medication routine now to keep it under control?

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@hopeful33250

Thanks for sharing some personal experiences, @jakedduck1. I am sorry to hear of your many seizures.

Are you on a pretty good medication routine now to keep it under control?

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@hopeful33250
For whatever reason, my seizures stopped in 2011. I have no idea why. Just very grateful they did after 44 years, except when I forgot my medicine Aug 22nd. I take Carbatrol and Phenobarbital. Doctors seldom prescribe Phenobarbital but I think it's a very effective drug. I told a man's fiancee in Africa to ask his doctor about it. He's on it now and has been seizure-free for about 6 months. Am I in trouble for suggesting that? It came out in 1912, it's been studied over 100 years and there are side effects especially for children but wait till these new drugs have been studied that long. I'd love to be around at the end of the century to see how popular some of these newer drugs will be used. They already suspect that Benzodiazepines may cause Alzheimer's.
Jake

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@jakedduck1

Yes it’s very serious. My parents were called to the hospital numerous times to bid me farewell but being stubborn as I am I lived. I have been in induced comas for probably 3 years (cumulatively.) The longer seizures go on without stopping the less likely they will stop on there own which is why they put you in a coma, to stop the seizures. Besides Convulsive Status which people with Tonic Clonic seizures have there is Non Convulsive Status Epilepticus that sometimes happen in those with Absence and Focal seizures and emergency treatment isn’t as urgent. An acquaintance of mine went into Status and died in less than an hour which is a very long time to seize. Seizures use immense amounts of energy.
Jake

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@jakedduck1 – I noted that the article @hopeful33250 mentioned talked about what might trigger status epilepticus. Did you note any factors prompted status epilepticus in you when you had this occur many years ago?

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@lisalucier

@jakedduck1 – I noted that the article @hopeful33250 mentioned talked about what might trigger status epilepticus. Did you note any factors prompted status epilepticus in you when you had this occur many years ago?

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@lisalucier
When you have Intractable Tonic-Clonic seizures like I did that's a risk factor in itself. As a teenager I stopped taking my medicine which caused my first episode. Not sure about all the other times. I had retrograde amnesia when I woke up 8 or so months later forgetting virtually everything I knew from age 15 back. I didn't know my parents or brother or anyone else. I couldn't tie my shoes or walk very well but the worst thing was forgetting how to play the Piano. So if anyone who has Epilepsy, NEVER stop or miss a dose of you medication.Do as I say, not as I do.
Jake

REPLY
@jakedduck1

@hopeful33250
For whatever reason, my seizures stopped in 2011. I have no idea why. Just very grateful they did after 44 years, except when I forgot my medicine Aug 22nd. I take Carbatrol and Phenobarbital. Doctors seldom prescribe Phenobarbital but I think it's a very effective drug. I told a man's fiancee in Africa to ask his doctor about it. He's on it now and has been seizure-free for about 6 months. Am I in trouble for suggesting that? It came out in 1912, it's been studied over 100 years and there are side effects especially for children but wait till these new drugs have been studied that long. I'd love to be around at the end of the century to see how popular some of these newer drugs will be used. They already suspect that Benzodiazepines may cause Alzheimer's.
Jake

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Yes, I think so, Phenobarbital is a very effective drugs. Can he stop taking it since he has been free from seizures for the past few months now? Or is it something he will continue taking through out his life time?…

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@chynex

Yes, I think so, Phenobarbital is a very effective drugs. Can he stop taking it since he has been free from seizures for the past few months now? Or is it something he will continue taking through out his life time?…

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@jakedduck1 may have some thoughts on continuing to take phenobarbital with being seizure-free for several months, but I'd also really encourage you to speak to his doctor and/or pharmacist about what the plan will be for this medication,@chynex.

Good to hear his seizures are now more under control.

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@lisalucier

@jakedduck1 may have some thoughts on continuing to take phenobarbital with being seizure-free for several months, but I'd also really encourage you to speak to his doctor and/or pharmacist about what the plan will be for this medication,@chynex.

Good to hear his seizures are now more under control.

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Alright. Thanks.

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@chynex

Yes, I think so, Phenobarbital is a very effective drugs. Can he stop taking it since he has been free from seizures for the past few months now? Or is it something he will continue taking through out his life time?…

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@chynex
Best to ask his doctor but stopping any seizure medication shouldn’t be done unless someone has a normal EEG, MRI, normal Neurological exam and be seizure free at least (I’d say) a minimum of 5 years but some doctors believe 2-4 years is reasonable. Chances for being seizure free without medication diminishes the more seizures he’s had and if he’s had more than one type of seizure or has taken more then one type of seizure medication. If I recall correctly he was having seizures weekly. So the important question now is how long has he been having seizures? Another important thing to consider is once a person discontinues medication there is a risk if the seizures come back they may be more difficult to control. Although unusual sometimes they can’t be controlled again. Other times it may take years to become seizure free again.
Since no one can predict a seizure he may want to keep in mind if he drives and depending on the laws there, he might lose his drivers license. Perhaps be in an accident, this list is endless.
Definitely don’t stop at this point.
Take care,
Jake

REPLY
@jakedduck1

Yes it’s very serious. My parents were called to the hospital numerous times to bid me farewell but being stubborn as I am I lived. I have been in induced comas for probably 3 years (cumulatively.) The longer seizures go on without stopping the less likely they will stop on there own which is why they put you in a coma, to stop the seizures. Besides Convulsive Status which people with Tonic Clonic seizures have there is Non Convulsive Status Epilepticus that sometimes happen in those with Absence and Focal seizures and emergency treatment isn’t as urgent. An acquaintance of mine went into Status and died in less than an hour which is a very long time to seize. Seizures use immense amounts of energy.
Jake

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My son was 22 before he ever had any seizures at all …..and out of the blue started having episodes of back-to-back seizures sometimes 6 at a time 10 minutes long without any completely awake time in between.
it doesn't stop until we get him medicine, If he takes it hes fine but if he misses much is maybe 5 doses he goes into a fit of these serious severe grand mall seizures, every single time. Every single blood vessel in his face Every single blood vessel in his face and chest pops, He has high amounts of acid in his blood from being released from his muscles hes almost literally bit his tongue off twice hes a big boy he was a football player.
All of his test results of came back normal so I started doing research on my own – I thought that this is what he had ……but the doctor says it's something to do with his brain being over stimulated. Still no answers and him just worried…. I hope your doing well just that share

REPLY
@jakedduck1

@hopeful33250
For whatever reason, my seizures stopped in 2011. I have no idea why. Just very grateful they did after 44 years, except when I forgot my medicine Aug 22nd. I take Carbatrol and Phenobarbital. Doctors seldom prescribe Phenobarbital but I think it's a very effective drug. I told a man's fiancee in Africa to ask his doctor about it. He's on it now and has been seizure-free for about 6 months. Am I in trouble for suggesting that? It came out in 1912, it's been studied over 100 years and there are side effects especially for children but wait till these new drugs have been studied that long. I'd love to be around at the end of the century to see how popular some of these newer drugs will be used. They already suspect that Benzodiazepines may cause Alzheimer's.
Jake

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Benzodiazepines are evil, horrible. Old neuro put my daughter on them and now weaning will take years on top of the damage it has already done. You have to wonder if they avoid pheno because it’s old and no money to be made by big pharma. Just saying 😉

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Status epilepticus itself is evil! I used to have it for 15 minutes. I walked up and down stairs all the time at home. My mother used to use rectal valium suppositories to "get me out of it". When I moved from home I had an episode at my apartment. I walked down two flights of stairs one night (all seizures are nocturnal) and was found in the back yard. When the police saw my medication they said I was on drugs My neighbor shouted "she is not on drugs". I should have sued the police for their ignorance.

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