Anyone have and want to talk about status epilepticus?

@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.

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?...

@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

@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?

@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

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?

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