Has Anyone Had Status Partial Seizures? | MyEpilepsyTeam

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Has Anyone Had Status Partial Seizures?
A MyEpilepsyTeam Member asked a question 💭

Normally a partial seizure last 2 minutes, but with status it just keeps going and sometimes slows down only to restart before I have a chance to recover. I was going to bed when I got really scared. My head was feeling funny but it's not like I remembered what it was like as a kid. My husband was downstairs and I texted him I'm scared. Then I went into a seizure and 2 of my kids were woken up and came into my room. My oldest stayed with me and my younger one ran to my husband then I was seizing… read more

posted August 15, 2021
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A MyEpilepsyTeam Member

You can be aware and still have a seizure. The hospitals are Not trained in seizure awareness, unless they have a Neuro department, and most EMT/EMS at Not either. Regular Dr’s are Not fully aware of what to do. They are simply trained how to recognize Grand-mal (Tonic Clonic) and some Complex Partial Seizures (Focal). They really don’t know much else.
We have to educate them. I personally have had to teach a Nurse practitioner and a current Doctor about seizures. They have no clue, where I live, how to treat Epilepsy. I have found it only a Neurologist and an Epileptologist know about seizures, unless the Doctor specializes in that field. It’s very frustrating.
Going to a PCP and having a seizure in front of them and then they don’t tell you what happened really is a bummer.
I know from personal experience.

posted August 16, 2021 (edited)
A MyEpilepsyTeam Member

I have status

posted August 16, 2021
A MyEpilepsyTeam Member

Some hospitals do not even know that post ictal states are different every time they think they all have to be an exact certain length of time, they actually time it and it can not be off by even a minute from what they say it should be or it was not a seizure. They also think that every seizure looks the exact same for every person. Some doctors and nurses really need to get educated and read up on things with current information instead of information from the 1920's or 30's. They are so frustrating I have told people to not bother calling, fortunately I have been controlled for a while so I have not had to deal with the nonsense but feel for those that do. Let us all hope the training gets better for all of our sakes and medical personnel get more understanding and stop saying what we know was a seizure was not when we were the one experiencing it and have been diagnosed. Good luck finding a new neurologist. The good ones are hard to come by.

posted August 15, 2021
A MyEpilepsyTeam Member

YES YES For 24hours every week No respite ,impaired awareness &cognition ,post ictal confusion then straight into another.... I will add you to my team as I have status epilepticus (partials)Stay safe x

posted August 15, 2021
A MyEpilepsyTeam Member

I thought I was having complex partials when that happened to me . Ended up being a grand-mal. Only found this out because I have the rns nuero stimulator. So you can have tonic- clonic seizures and be aware and remember. Not loosing conciousness. I would be the same as you explained.

posted August 15, 2021
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