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?

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@patrassi

My son is 6 years old and I was there in January with him for 3 days…it’s a horrible experience …. you have to wait patiently to the seizures, without sleeping… and the anxiety and fear all over the days and minutes are terrible. In the third night he had a seizure that lasted 45 minutes and I thought he would not resist… My family were at the hotel while it happened, but the staff was nice and friendly, they helped me … It was not easy at all , but extremely necessary to his treatment and surgery… so I was thankful we have done that in Mayo Clinic.

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When the monitoring unit did not capture seizures, and I was having multiple seizures at a different rate, the Epilepsy Board decided to take me on still as a surgical patient. The next step was to find out where they were coming from exactly. I had a stereo EEG, or SEEG at Mayo. This is an inpatient, innercranial EEG, where the leads are placed directly inside to finite the exact area of seizing for surgery. You are under anesthesia the entire time, and it could take anywhere from one day up to a month to seize. Very scary being under that long… they scared the seizure out of me. I seized in one day.

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@patrassi

My son is 6 years old and I was there in January with him for 3 days…it’s a horrible experience …. you have to wait patiently to the seizures, without sleeping… and the anxiety and fear all over the days and minutes are terrible. In the third night he had a seizure that lasted 45 minutes and I thought he would not resist… My family were at the hotel while it happened, but the staff was nice and friendly, they helped me … It was not easy at all , but extremely necessary to his treatment and surgery… so I was thankful we have done that in Mayo Clinic.

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Thank you for explainging, @amckinley75. I can imagine that was scary. And thank you for sharing more of your journey in the discussion
– Living with epilepsy – Introduce yourself & meet others https://connect.mayoclinic.org/discussion/living-with-epilepsy-introduce-yourself-meet-others/?pg=5#comment-79089

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@dawn_giacabazi

Hello @suellipo68
I am so sorry your experience was horrible. I am hopeful they were able to find some answers that you were searching for. May I ask if you were the patient or was a loved one?

Sincerely
Dawn

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All the time we were at Monitoring unit , the pediatric staff was so kind and attentive to me and my family . They provide video games , tablets and toys to give him confidence and distraction … the meals were nice and the nurses and doctors really good! I can’t say that any could be done to give us , the family, some relief in those days… but the trust in the hospital , doctors and everybody that was involved in the procedure gave us confidence to continue… my heart was full of fear , but there was so much hope that we could resist it! Thank you all in Saint Mary’s hospital!

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@cmcafee

My husband had a video eeg at Mayo Rochester last month. We also had a video EEG at a hospital back home in 2016. So we can talk about both.

His situation is very unique. He has bilateral periventricular nodular heterotopia and REM behavior disorder. To have one of these disorders is rare, but his case of having both is not well documented or at all. For those who do not know, the heterotopia is a birth defect where some of the cells do not make it to the cortex and gather to form nodules in the ventricals. Epilepsy is common with heterotopia. The seizures can come from the nodules or the parts of the brain where the cells were supposed to go during formation. Not every nodule will be a source of seizures. Mayo’s MRI is no doubt the best in the country, they were able to find more heteropias than the MRI back home. The REM behavior disorder is probably aggravating the seizures and vice versa, but the current medical science is unable to determine how and when.

The video EEG back home was a typical 26 (I think) sensor EEG for four days. At Mayo we had one of the new 75 sensor EEG for six days. The stay at Mayo was long because they were trying to determine which heteropias were active and he has so many heterotopias and different parts of the brain. In both cases the epilepsy meds are taken away gradually and the effects are monitored. Our stays were probably longer than many due to my husband’s case. During the stay the patient cannot leave the room. We heard that movies and video games were available. A second person can stay in the room with the patient. We were told another video eeg without medication stoppage might be done in his case to see how well a certain treatment was working.

My husband had terrible anxiety with both EEG’s. He has had seizures for 25 years. He was afraid of permanent damage. I don’t know if that was a possibility, but anxiety is often not rational.

His video EEG back home was very unpleasant. It was right after we had received the diagnosis of heterotopia. My husband seizures are unusual. The doctor and staff were excited each day when we had our daily debriefing. Their behavior was upsetting. When you are dealing with a scary new diagnosis you don’t need to see the excitement of the doctor with a new puzzle. The doctors and staff at Mayo were very professional. I am sure they were excited as well, but they did not show it while they were in the room. The Mayo doctors did tell us that some of the seizures they were seeing were very unusual, but they did not look at us like were a new toy.

The nurses and staff at Mayo were the best we have very experienced. The doctors answered all our questions in a way we could understand. The only thing we would have changed is the doctor told us the first day that his case was unique and a challenge. While that was true, hearing that the first day increased my husband’s anxiety greatly. We knew he was unique that is why we went to Mayo. I don’t know if it is required to give all the facts at the beginning, but if you can hold off until later in the stay, that might be better.

Because we were there so long, my husband’s sensors had to be reglued several times. By the time we left the poor guy had scabs from the repeated scratching of the scalp.

I have sent this link to him and asked him to comment.

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Hi @cmcafee, welcome to Connect and thank you for sharing the details of your experience both at Mayo Clinic and your local care facility. I can only imagine how disconcerting it is to medical professionals excitement over the complexity of a diagnosis as if you weren’t there or “like a new toy or puzzle.”

Staying for an extended period in the monitoring unit is certainly challenging. How did or might have the nurses supported you while you were concentrating on making your husband comfortable and less anxious?
Did you and your husband feel prepared for what to expect during the Epilepsy Monitoring Unit hospitalization?

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@juliehart4 @twiceinalifetime @rchllmorgan @brjudevo79 @durtworks @ryman @bab511 @ahernandez @micakath @richardlsolomon @ndapanda and @neuralnet: I’d like to invite you to this discussion where members are sharing their experiences in the seizure clinic, specifically in an epilepsy monitoring unit. Have you been to a monitoring unit? What was your experience? If you were preparing a friend to have a stay in an Epilepsy Monitoring Unit, what advice would you give them?

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@robertjr

I was young when i was monitored ,around 1960 or so so things must be diferent .From what i remember didnt have much sleep and kinda scarry havingso many wires.Guess it didnt take long to get a grand mal then start waking all tangled up in stuff ,because i take a while for my memory to return dont have much else.Because of my headaches so bad after a seizure and takes awhile to get memory back so to me the test area not that much a big deal.The after effects of seizure so bad in my case.

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Colleen,when i was younger not much done sa far as epilepsy ,would see a neurologist about every months.when meds stopped working doctor just put me other meds until tye right one found..For some reason myseizures just leave my memory..I usualy lose 3 or 4 days,first day geat my memory backslowly,days 2 and 3 rea!y bad headaches.Even in septembsr,oct. had 5 grand mals in 6 weeks had to switch meds and add vimpat can only have a few memories on one.,Had a lot of grand mals in over 55 years but only a few little memories.i seriously believe my mind erased those times on pupose,thats a lot of 3 and 4 day gaps .maybe my minds way of helping me.seizures bad enough at least no memories to scare me.

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@patrassi

My son is 6 years old and I was there in January with him for 3 days…it’s a horrible experience …. you have to wait patiently to the seizures, without sleeping… and the anxiety and fear all over the days and minutes are terrible. In the third night he had a seizure that lasted 45 minutes and I thought he would not resist… My family were at the hotel while it happened, but the staff was nice and friendly, they helped me … It was not easy at all , but extremely necessary to his treatment and surgery… so I was thankful we have done that in Mayo Clinic.

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Thank you for sharing your story. You are a brave and wonderful mother.

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@cmcafee

My husband had a video eeg at Mayo Rochester last month. We also had a video EEG at a hospital back home in 2016. So we can talk about both.

His situation is very unique. He has bilateral periventricular nodular heterotopia and REM behavior disorder. To have one of these disorders is rare, but his case of having both is not well documented or at all. For those who do not know, the heterotopia is a birth defect where some of the cells do not make it to the cortex and gather to form nodules in the ventricals. Epilepsy is common with heterotopia. The seizures can come from the nodules or the parts of the brain where the cells were supposed to go during formation. Not every nodule will be a source of seizures. Mayo’s MRI is no doubt the best in the country, they were able to find more heteropias than the MRI back home. The REM behavior disorder is probably aggravating the seizures and vice versa, but the current medical science is unable to determine how and when.

The video EEG back home was a typical 26 (I think) sensor EEG for four days. At Mayo we had one of the new 75 sensor EEG for six days. The stay at Mayo was long because they were trying to determine which heteropias were active and he has so many heterotopias and different parts of the brain. In both cases the epilepsy meds are taken away gradually and the effects are monitored. Our stays were probably longer than many due to my husband’s case. During the stay the patient cannot leave the room. We heard that movies and video games were available. A second person can stay in the room with the patient. We were told another video eeg without medication stoppage might be done in his case to see how well a certain treatment was working.

My husband had terrible anxiety with both EEG’s. He has had seizures for 25 years. He was afraid of permanent damage. I don’t know if that was a possibility, but anxiety is often not rational.

His video EEG back home was very unpleasant. It was right after we had received the diagnosis of heterotopia. My husband seizures are unusual. The doctor and staff were excited each day when we had our daily debriefing. Their behavior was upsetting. When you are dealing with a scary new diagnosis you don’t need to see the excitement of the doctor with a new puzzle. The doctors and staff at Mayo were very professional. I am sure they were excited as well, but they did not show it while they were in the room. The Mayo doctors did tell us that some of the seizures they were seeing were very unusual, but they did not look at us like were a new toy.

The nurses and staff at Mayo were the best we have very experienced. The doctors answered all our questions in a way we could understand. The only thing we would have changed is the doctor told us the first day that his case was unique and a challenge. While that was true, hearing that the first day increased my husband’s anxiety greatly. We knew he was unique that is why we went to Mayo. I don’t know if it is required to give all the facts at the beginning, but if you can hold off until later in the stay, that might be better.

Because we were there so long, my husband’s sensors had to be reglued several times. By the time we left the poor guy had scabs from the repeated scratching of the scalp.

I have sent this link to him and asked him to comment.

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Cm cafee – thank you for your unique and articulate observations. I always find it difficult when it comes to my own family to express myself well. I have not heard of the types of epilepsy you discussed, however, it is good to know as much as we can especially for future reference and empathy.

Recently, when my daughter started having seizures again (far worse, more numerous) 20 years later, she was told by the neurologist that there was pretty much no chance for control, do not get pregnant-as if she would) and see him again in 4 months. There had been no tests whatsoever, although never having seen her, he had put her on anti seizure meds 5 weeks before by telephone through her G P. Talk about inappropriate behavior by a doctor. In one sentence he was able to take any optimism she had, any hope for a greeter quality of life and smash it. She has become depressed. And while of course we have found new neurogists and they have started testing, he left an impression on her psyche. What on earth are they thinking when they telegraph their excitement of a new condition as with your husband or their depressive negativity to a young woman whose life ls torn asunder by multiple seizures, losing her career, relationship struggles, injuries and leftover confusion around her seizures.

If the care of the new clinic does not work out. We will
Investigate the Mayo Clinic and see if funds could be found to be able to take her there.

I am very glad that your husband has you and that you remain such an excellent advocate, but better yet, a sensitive and kind wife.

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Have not been to Mayo Clinic but recently was at St Mary’s Hospital in Madison epilepsy unit. The hardest thing was only being able to walk as far as the bathroom, bed and chair. I brought my laptop and kindle so I was able to keep busy.

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Several of you asked: “Why can’t monitoring seizure activity be done outside the hospital setting while the patient goes about their normal routine, similar to that of a holter monitor for the heart.”

A Mayo Clinic nurse from the Epilepsy Monitoring Unit offers this explanation:

“This is an excellent question! We try to mimic the patient’s triggers as much as possible during their stay in our epilepsy monitoring unit. Examples of this include exercise, encouraging the patient to use forms of stress when possible (such as work or crosswords), and photic stimulation (a form of visual stimulation used in conjunction with electroencephalography to investigate anomalous brain activity triggered by specific visual stimuli, such as flashing lights or patterns).

There are many factors at play during this hospitalization with the most important being safety. While in the epilepsy monitoring unit, we are able to promote a safe environment to adjust seizure medications as needed. There are physicians, nurses, epilepsy monitoring technicians, and other staff that may be required to provide care before, during, and after a seizure.

Before the seizure, each patient’s history is reviewed and discussed with the team, patient, and patient’s family to determine a course of action towards capturing a seizure. Safety equipment is used during this time due to the increased possibility of having a seizure to prevent injury. During an event, technicians and nurses are able to quickly use safety interventions and monitoring, such as oxygen and suction, to ensure the patient is safe. Medications and staff resources are available while in the hospital, if more medical attention is needed to help a patient recover from a seizure. After an event, the focus remains on safety and attending to the patient’s needs.

Other logistical issues with being in the patient’s own environment include that the EEG leads are not wireless and need maintenance from our technicians throughout each day.”

What other ways could our staff better simulate your own home environment?

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@patrassi

My son is 6 years old and I was there in January with him for 3 days…it’s a horrible experience …. you have to wait patiently to the seizures, without sleeping… and the anxiety and fear all over the days and minutes are terrible. In the third night he had a seizure that lasted 45 minutes and I thought he would not resist… My family were at the hotel while it happened, but the staff was nice and friendly, they helped me … It was not easy at all , but extremely necessary to his treatment and surgery… so I was thankful we have done that in Mayo Clinic.

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Your post is 2014 so I hope your monitor went well. I'm new to this site so I'll answer anyway since it may be being seen. I had mine installed for my doctor's records/evaluation because of increased medication with no change.

NOTE:
A) Monitors at Mayo are very likely not at all like my story, so this story is likely for elsewhere. B) My story is a bad one but it may represent only 1% of all stories.

1) For my 3 day observation, cost was 10k in 2015. I'm on Medicare. My co-pay was 1k. Definitely ask your insurance company (not MD, he may not know) what the costs are, before your install(s). 2) My doctor's office uses a contractor service to install. Installer did what was a good hook-up, I think. She tested unit, answered my questions, did not seem to be confused or have equipment issues (at install office). Mine worked fine in office. 3) Get contractor's info/name from technician and call to ask for their charges to your MD. Probably can't/won't tell you. Ask if it's going to be 10k at your end. May still not answer but they may have a reaction, for you to listen to. Don't be afraid to insist that you see a unit at their office. 4) I had the wires and cap, cable for getting to the collection unit, which was not inside a backpack. I had to get my own backpack later. 5) Installer had handed entire unit to me just before leaving. Left hand had cable, right had the the unit. Very clumsy situation. 6) Unit failed on day 2. Not wires, battery dead. I lived 60 miles from Denver install office. 7) The unit had a clip on outside to hold unit on my belt, that was broken. Unit was dirty. Cable was hanging from cap wires to my back that I used when I got home. Too much weight at the attachment. Could easily have pulled a wire out of cap. Wires/cable pulled directly on my skin. Wires should have attached to cap, then down to backpack. 8) Contractor used an answering service when their office was after hours, so no one to answer questions when unit failed on day 2. Service purchased by contractor did not have a # for me to call and no "neurologist" to return call, just answering service taking messages. 9) Wires at cap are attached to skin well enough that if unit fails, you will have to wear cap (possibly entire unit) until your un-install date. 10) This happened to me 2 times. The first time I went back, re-installed and 2nd failed middle of day 3. In 2015 I had pretty much the same story. I refused to get another unit installed when the 2018 unit failed. 11) Do try to get the contractor's name before install. They may refuse. Ask them what their answering services are. Install tech will not be that person. At day of install, check unit for broken parts, dirt and a backpack to carry. Ask installing tech if they have ever heard of stories like mine. Techs seem to contract with the unit owners so, that may be the reason for not answering. Ask your neurologist if he has ever heard of failed units. Get neurologist's off-hours # for service or, with an actual neurologist. If she/he can't… find another neurologist because you are at the very least a 10k patient with unit on and, he or another neurologist who knows about your install, should be available. 12) Think about days for wearing unit and your schedule so that you can be doing the least amount of physical activity with unit. Take a shower before install date. Get movies, reading material, computer. My 2018 unit dates (remembering 2015), I literally sat in a recliner for all but dinners etc until the day unit failed. 13) If your neurologist tells you (like mine), "Oh a day's worth of information is good enough anyway, start looking for another neurologist. Get all your records before that. Good neurologists here and in Denver (practicing a specific neurological condition, only) are hard to find.

Bad story I know, but again, mine may only be a 1% story.

Hope your dosen't go this way. The collection of unit info is going to be very useful. Hope your collection information helps.

Rick

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@patrassi

My son is 6 years old and I was there in January with him for 3 days…it’s a horrible experience …. you have to wait patiently to the seizures, without sleeping… and the anxiety and fear all over the days and minutes are terrible. In the third night he had a seizure that lasted 45 minutes and I thought he would not resist… My family were at the hotel while it happened, but the staff was nice and friendly, they helped me … It was not easy at all , but extremely necessary to his treatment and surgery… so I was thankful we have done that in Mayo Clinic.

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Hi Rick @1634517678, welcome to Connect. Thank you for sharing your story and providing tips of how to avoid the situation you found yourself in. Am I correct in understanding that you were using a monitoring unit at home and not in a clinic setting?

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@patrassi

My son is 6 years old and I was there in January with him for 3 days…it’s a horrible experience …. you have to wait patiently to the seizures, without sleeping… and the anxiety and fear all over the days and minutes are terrible. In the third night he had a seizure that lasted 45 minutes and I thought he would not resist… My family were at the hotel while it happened, but the staff was nice and friendly, they helped me … It was not easy at all , but extremely necessary to his treatment and surgery… so I was thankful we have done that in Mayo Clinic.

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I went to the office where the unit was attached and then home. This unit was for sampling only and not an attempt to start a seizure.I have been in a hospital setting overnight (5 days) where the intent was to start seizure activity… Sleep deprivation, no food or water were a few of the trigger attempts. That was 6 years ago. After my email here I read some of the in hospital stories. They are valid, being there is a test of sanity, or leaving with none. In the last 6-8 years to have a patient seizure in that setting with attempt by deprivations etc is considered questionable. Reason is, the real intent is to make the patient seizure free. More seizures usually means continued/repeat seizures. And, the lack of information gathered was too frequent, with too few patients. Not exactly dropping water on one's forehead for hours but, that may be the thought in 20 years. 60 years ago there were only 2 drugs, and mostly general practitioners. 75 ago being tied to a chair in the back room was not unheard of. So, some of us, are fortunate to an extent(???).

I also forgot a little history: I am 62 years old and have had seizures since 23. At 23 I had a g-mal in my sleep. From 23 to 43 meds were on/off half of the time with the few meds available at the lowest mg. 43 to 53, 2 different petite mal increased in frequency to having moderate amounts of meds, but 24/7. During the 43 to 48 there were only 5 g-mal and same as all other g-mal, only during sleep. At 50, I had a seizure (type not identified) while I was conscious. Similar to petite mal with disorientation etc, but that disorientation feeling was all day long for 2 years with 75% memory loss for all past events. Memory then was not remembering where shoes were, not recognizing them when found. Able to go walk to grocery store with box covers torn off at home to match to the items in the store, and I looked 50% normal, as long as I didn't talk. 10 or 12 items would take 60+ min. I couldn't write a sentence or email. I can go on with that 50 years old to now (62) if someone is interested for their own use. Since 50, it has been mostly memory issues. 50% with variables is back. More is not expected per neurologists.

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@patrassi

My son is 6 years old and I was there in January with him for 3 days…it’s a horrible experience …. you have to wait patiently to the seizures, without sleeping… and the anxiety and fear all over the days and minutes are terrible. In the third night he had a seizure that lasted 45 minutes and I thought he would not resist… My family were at the hotel while it happened, but the staff was nice and friendly, they helped me … It was not easy at all , but extremely necessary to his treatment and surgery… so I was thankful we have done that in Mayo Clinic.

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Colleen,

Not a clinic. At home. Mobile with back-pak, 3 days if it had gone full term. Both went only 1-2 days, 2 sampling terms, a couple years apart.

Sorry so late. I received your 2 other emails in the last 2 days (from you? or forwarded by you, from a reader?) but they don't really look like something I need/should comment on???

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@patrassi

My son is 6 years old and I was there in January with him for 3 days…it’s a horrible experience …. you have to wait patiently to the seizures, without sleeping… and the anxiety and fear all over the days and minutes are terrible. In the third night he had a seizure that lasted 45 minutes and I thought he would not resist… My family were at the hotel while it happened, but the staff was nice and friendly, they helped me … It was not easy at all , but extremely necessary to his treatment and surgery… so I was thankful we have done that in Mayo Clinic.

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Thanks for elaborating about home monitoring, Rick.

It was me that @tagged you in a conversation about invasive EEG monitoring. I thought you might have experience to share. No worries if you don't. I'll remove you from the discussion.

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