Been to an Epilepsy Monitoring Unit? What’s it like?

The Patient Experience Nursing Team at Mayo Clinic would like your help in making the experience in the Epilepsy Monitoring Unit at Mayo Clinic the best it can be. If you chose to take part in the survey, thank you!

In addition to the survey information, let’s also talk about your experiences in an open discussion here on Connect.

What it is like to be in the monitoring unit, to be attached to electrodes while waiting to have a seizure? If you were preparing a friend to have a stay in an Epilepsy Monitoring Unit, what advice would you give them?

Liked by Leonard

I can not remember if I have responded to this before (and that is why it appears again in my email) or just read it. I have spent many, many weeks over the last five years at Mayo's Epilepsy Monitoring Unit in Jacksonville. Prior to my Mayo visits, I had only had the 24 hour EEG home monitoring and done 30 minute sessions in the local sleep center. In Jacksonville's Mayo, they are a phenomenal team. They deal with difficult situations all day long (and night). They deal well with grumpiness after several days of no sleep, still treating you with kindness, PATIENCE, and respect. They accommodate not just your wants/needs as a patient, but are also gracious to those that stay with you. Are days of bed bound sleeplessness hellish?? Y E S ! BUT, if I had had none of those things done, they would not have had the much needed answers, and I would not be on the road to recovery. Those weeks there saved my brain and my life. DO IT.

REPLY

That's good. I without hesitation would venture to say Mayo is in the 100% range.

I have been through in-patient sleepless sampling. No it was not fun and being somewhat claustrophobic did not help, a new dimension, similar in a few ways. My in-patient did not bring up anything. I don't have any criticism. The piece I wrote a couple months back was largely in reference to the contractors (not hospital or neurologist staff) who installed the equipment. Here in Denver my experience (2 different times) was less than poor. Worn out equipment, batteries that went dead, no back-pack to put equipment in (had to be hand held) until I got my own at home. I suspect a lot of the other areas in the country have good neurologists to pick from. A lot here have what could becalled a generalized epilepsy multi-interest, dual practice. Sounds negative but I was surprised. I actually live in Colorado Springs, pop 600k and ended up with a neurologist in Denver, still needing better. That's another topic!

I was giving a heads-up to anyone getting ready to do a home study. Mine (actually 2 times, in approx 3-4 years) was to be 3 days. Battery stopped 2nd day, and had no info. Neurologist said, "oh, that's good enough." He billed for it or, perhaps he couldn't tell the contractor to do it again. When I got my bill it was a $1000 co-pay from a $10k bill. So, I had good coverage (Medicare)? Pending any financial situation, a good plan would be to check out what your insurance companies pay. Too, look at the equipment when you are having it installed. Mine was dirty with damage. I should have said, "No" right then and there but, I was very eager to get more info. I have also read some other stories like mine. It can be an odd situation if good medical care is lean and you don't necessarily where to go next, or how to.

Please do feel free to still comment on my story, positive or negative, or with direction to a better neurologist (that would be great). My main/only reason for staying with mine is that it's the best I've found, not necessarily good by measure. And I have 90% control (the best so far) of my epilepsy when for 15-20 years min, I did not. Too I'm afraid, there is a longer story on having to get Limictal XR paid for. This neurologist makes it easier. If you have always had good treatment the above is likely hard to believe. Again, still feel free to comment. Thank you

REPLY
@jktaheri

I can not remember if I have responded to this before (and that is why it appears again in my email) or just read it. I have spent many, many weeks over the last five years at Mayo's Epilepsy Monitoring Unit in Jacksonville. Prior to my Mayo visits, I had only had the 24 hour EEG home monitoring and done 30 minute sessions in the local sleep center. In Jacksonville's Mayo, they are a phenomenal team. They deal with difficult situations all day long (and night). They deal well with grumpiness after several days of no sleep, still treating you with kindness, PATIENCE, and respect. They accommodate not just your wants/needs as a patient, but are also gracious to those that stay with you. Are days of bed bound sleeplessness hellish?? Y E S ! BUT, if I had had none of those things done, they would not have had the much needed answers, and I would not be on the road to recovery. Those weeks there saved my brain and my life. DO IT.

Jump to this post

Wonderful news!

Liked by Kristin

REPLY

My stay in an epilepsy monitoring unit was probably typical. I was attached to eeg monitor continually for a week, as well as direct observation while they tried to induce a seizure by various means, ie. hyperventilation, flashing lights.and others. I was off my meds and wh I finally did have a seizure it was in my sleep. They were able to tell where the seizure generated from. I was able to go home shortly thereafter.

REPLY

Hi all,
Thank you for taking part in the survey and open discussion about your experiences with epilepsy monitoring at Mayo Clinic and other institutions. The Patient Experience Nursing Team interviewed 12 hospitalized patients and sought input from you, members of the Epilepsy group on Mayo Clinic
Connect, asking:
– "What is your greatest fear in being here?"
– "What was your greatest need in the hospital?"
– "What would have made you more comfortable?"

From the feedback and insights you provided the Patient Experience Nursing Team developed a quick guide for nurses in the Epilepsy Monitoring Unit at Mayo Clinic. Following this guide will encourage communication to help make patients feel more comfortable, safe and confident while being monitored. The guide identifies three areas of concern: 1) anxiety and fear, 2) a loss of control, and 3) a loss of independence.

The team then developed strategies to address the concerns, such as:
– Asking patients about their fears, validating these fears and addressing them during rounding
– Communicating with empathy
– Discussing the lack of privacy and offering options, where possible

Communication, particularly empathetic communication, is vital. Your input helped underline the concerns and needs that patients in the epilepsy monitoring unit commonly have and how they can be addressed.

THANK YOU!

REPLY

Be patient and try to stay calm and relax. You are being watched constantly. Meds you're taking will be decreased gradually to see how your body relates to a smaller dose or no meds. The monitors are watching your heart, breathing as well as other organs. The triggers will be introduced gradually. Keep in mind that the main goal of the monitoring units is to capture the seizures. The monitoring unit will answer a lot of questions that are being unanswered and hopefully what the best treatment is. You might be there awhile but it's for a good reason. My advice is to let Jesus take the wheel

REPLY
@12271997

Be patient and try to stay calm and relax. You are being watched constantly. Meds you're taking will be decreased gradually to see how your body relates to a smaller dose or no meds. The monitors are watching your heart, breathing as well as other organs. The triggers will be introduced gradually. Keep in mind that the main goal of the monitoring units is to capture the seizures. The monitoring unit will answer a lot of questions that are being unanswered and hopefully what the best treatment is. You might be there awhile but it's for a good reason. My advice is to let Jesus take the wheel

Jump to this post

Very well said 12271997. Couldn’t agree more!!!

REPLY
@colleenyoung

Hi all,
Thank you for taking part in the survey and open discussion about your experiences with epilepsy monitoring at Mayo Clinic and other institutions. The Patient Experience Nursing Team interviewed 12 hospitalized patients and sought input from you, members of the Epilepsy group on Mayo Clinic
Connect, asking:
– "What is your greatest fear in being here?"
– "What was your greatest need in the hospital?"
– "What would have made you more comfortable?"

From the feedback and insights you provided the Patient Experience Nursing Team developed a quick guide for nurses in the Epilepsy Monitoring Unit at Mayo Clinic. Following this guide will encourage communication to help make patients feel more comfortable, safe and confident while being monitored. The guide identifies three areas of concern: 1) anxiety and fear, 2) a loss of control, and 3) a loss of independence.

The team then developed strategies to address the concerns, such as:
– Asking patients about their fears, validating these fears and addressing them during rounding
– Communicating with empathy
– Discussing the lack of privacy and offering options, where possible

Communication, particularly empathetic communication, is vital. Your input helped underline the concerns and needs that patients in the epilepsy monitoring unit commonly have and how they can be addressed.

THANK YOU!

Jump to this post

I was in an EMU at another facility in September of this year.

My fears were lack of independence… having to wait to have a nurse or an aide take you to the bathroom. Not being able to even be up in my room by myself. Being in bed constantly.

Comfort would have been better beds. They were awful even though they were new. When in an up position, I could feel the metal on my tailbone. I have been home since September 28th and I still cannot sit normally because it hurts. I have to sit on one cheek and not put full weight on my tailbone.

I think withdrawal should have been explained to me. I was on Keppra, Vimpat and Klonopin. I was taken off all three. I was in the hospital eight days and went through withdrawal from these meds. Nobody warned me and it was horrible. I asked for something to stop the withdrawal but was not given anything.

REPLY
@mboulis

I was in an EMU at another facility in September of this year.

My fears were lack of independence… having to wait to have a nurse or an aide take you to the bathroom. Not being able to even be up in my room by myself. Being in bed constantly.

Comfort would have been better beds. They were awful even though they were new. When in an up position, I could feel the metal on my tailbone. I have been home since September 28th and I still cannot sit normally because it hurts. I have to sit on one cheek and not put full weight on my tailbone.

I think withdrawal should have been explained to me. I was on Keppra, Vimpat and Klonopin. I was taken off all three. I was in the hospital eight days and went through withdrawal from these meds. Nobody warned me and it was horrible. I asked for something to stop the withdrawal but was not given anything.

Jump to this post

I want to add that when I had my 72 hour ambulatory EEG done in May 2018, I was on all of my meds and in those three days, I had three seizures. While in the hospital setting, I had none. I had auras, but not one full seizure even though I was off all medications, did five days of sleep deprivation, did the lights, etc. I just didn’t have a trigger. My doctor wanted me to stay longer but I just could not do it.

I think for some people, the triggers in a hospital setting just are not the same as in the home/ world setting.

REPLY
@mboulis

I want to add that when I had my 72 hour ambulatory EEG done in May 2018, I was on all of my meds and in those three days, I had three seizures. While in the hospital setting, I had none. I had auras, but not one full seizure even though I was off all medications, did five days of sleep deprivation, did the lights, etc. I just didn’t have a trigger. My doctor wanted me to stay longer but I just could not do it.

I think for some people, the triggers in a hospital setting just are not the same as in the home/ world setting.

Jump to this post

Hi, @mboulis – welcome to Mayo Clinic Connect. Thanks for sharing your experience in an epilepsy monitoring unit.

I'd like to introduce you to @jakedduck1 @12271997 @joannern @1634517678 @dawn_giacabazi @jktaheri @robertjr and others in this thread. Perhaps they will have some input on what you described about your time in the monitoring unit with auras and not one full seizure despite being off all medications, plus the awful beds.

If while you were in the hospital you didn't have any full seizures, were the doctors able to determine anything about your diagnosis and treatment from your time in the monitoring unit? What is the next step for you?

REPLY
@mboulis

I want to add that when I had my 72 hour ambulatory EEG done in May 2018, I was on all of my meds and in those three days, I had three seizures. While in the hospital setting, I had none. I had auras, but not one full seizure even though I was off all medications, did five days of sleep deprivation, did the lights, etc. I just didn’t have a trigger. My doctor wanted me to stay longer but I just could not do it.

I think for some people, the triggers in a hospital setting just are not the same as in the home/ world setting.

Jump to this post

Hi @mboulis.
I went through the Mayo Clinic Seizure Clinic, I did not have a full seizure or any activity until my last 48hrs. I was so frustrated but then I asked my doctors if I could do my normal routine. They agreed and finally after a couple hours of working on my laptop and back to my stressful work life, I started having auras. But They were able to identify my types of seizures without have a full seizure. You are correct, sometimes the hospital is not the correct setting but I’m grateful they were willing to let me try my routine. I hope you get an opportunity to try again. It is worth it!! I only take 1 medication 100% controlled. But It took years of trial and error on multiple different medications ended up on 3 different medications and still had a lot of break through seizures. I nearly died after a seizure when the ER gave me Klonopin, topamax, & zonegran all to stop my seizure unfortunately I stopped breathing but because my local Er gave me all 3 new medications at the same time we couldn’t determine which one I was allergic to so now we have to list all 3. That’s when I decided I was going to Mayo Clinic. I know it’s very frustrating but keep trying!! I hope you get some answers soon!!
Best wishes
Dawn

REPLY
Please login or register to post a reply.