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I have complex partial seizures and have been treated horribly in Emergency Rooms. Since my diagnosis, I've been in three different ER's having complex partial seizures and have been screamed at, laughed at, accused of "faking it," and had multiple "mental illness" jokes and suggestions thrown at me by ER nurses and doctors. They have never seen psychomotor seizures before and so they think they have the authority to degrade and harass me because of it. I'm tired of the abuse. I'm phobic about… read more

September 18, 2015
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Answer Summary

Members responded with strong solidarity to a post about being mistreated in emergency rooms while having complex partial seizures, with many... Read more

Members responded with strong solidarity to a post about being mistreated in emergency rooms while having complex partial seizures, with many sharing their own painful experiences of being accused of faking, drug seeking, or having mental illness. Several members offered practical advice, including getting a neurologist involved, carrying copies of EEGs, wearing a Medic Alert bracelet, and avoiding the ER unless seizures are repetitive or uncontrolled. A recurring theme was that ER staff often lack training on seizure types beyond grand mal, and that building a relationship with an experienced neurologist can provide better support and validation.

A MyEpilepsyTeam Member

Ugh, this is SO annoying. I experienced this recently and it's honestly the worst. It really eats away at me and I'm kinda phobic of hospitals too at this point.

September 22, 2015
A MyEpilepsyTeam Member

I think a lot of us have. The hospital where I saw my neurologist even accused me of looking for drugs once! I was brought in by ambulance after a GM that time.
The ER staff even messed up and incorrectly wrote out a script after they claim they checked my record. I was on TegXR at the time. Staff wrote out a script for Carbatrol wrong strength, wrong quantity, wrong dose for me to use. I noticed that when leaving and immediately walked up to the 6th floor (Neurology) and showed it to the nurse. She said I should bring it to where it was written, but since it had so many errors she ripped it up and wrote out a correct one!

To the hospitals: no we are NOT trying to get more of the damaging drugs we must take to control our seizures. We don't want to be doped up and overdosed by you. We can't prevent every seizure from happening!!

September 22, 2015 (edited)
A MyEpilepsyTeam Member

Whenever possible, refuse to go to the ER, unless your seizures are repetitive out of control seizures, because they can do nothing more for you in an ER than friends or family can: simply making sure that you do not harm yourself with the fall (if lose consciousness) or something else done during the seizure. Nothing can be done to speed to the conclusion the average seizure, and few seizures can be brought to an end with the injection of some form of medicine. In fact, if you are already on a series of anticonvulsant medicines, then they can cause more trouble by adding more medications into your body without knowing everything that you are on. It should be a priority for you to get a Medic Alert (or similar company) ID that can help the medical staff to find out everything that they need to know about your type of seizures and medications you are on by using the phone number on the tag on your necklace or bracelet to contact Medic Alert.

Have some slack for the nurses because they only have a single course on seizures and the focus is on grand mal seizures and the potential causes of seizures (besides epilepsy) and what to do for someone who is having a seizure. Doctors get more training and neurologist get even more training, but the first neurologist diagnosed me with fainting spells, the next neurologist (10 years later) said that it could not possibly be seizures because I was not losing consciousness (like grand mal); he diagnosed it as panic attacks and sent me to a psychiatrist. It was not until 8 years when I had a seziure while doing a computer programming exam (Java language) and had physical evidence how my memory of the code and procedure disappear down to the level of a blank line (code consisted of a series of IF THEN loops to properly sort and filter out the data that did not fit the criteria). When I went to the treatment service on campus, a psychologist ask me to describe symptoms and remembered events which he used along with medical books to diagnose me with Complex Partial Seizures (which has auras that are actually Simple Partial Seizures). They are the most common seizures but vary in specifics based on individuals. My seizures are actually range from staring, halucinating and speaking with material from my subconscious mind to repetitive actions to even occaisional grand mal seizures. The major challenges come when I have had a complex seizure without an aura, and thus have no memory of the lost time of the seizure and no clue that I might have had a seizure.

August 21, 2016
A MyEpilepsyTeam Member

I even have copies of 2 EEG's in my phone and still sometimes they do that $hit and it is basically a public humiliation and never apologies after they do an unnecessary EEG as if someone could be that twisted. Even if I brake a bone I wait. The morning shifts are better in my experience...

September 22, 2015
A MyEpilepsyTeam Member

I`v dealt with that a lot ... Every time they came to get me ..It was a wast of medicare ,and medicade money .... Unless it`s one I`m in more than a hour .... Dealing with three tip`s of seizures . Can be a pain in the ass .......

September 18, 2015

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