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

Posted by @colleenyoung, Nov 6, 2017

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?

REPLY

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.

@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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The 1960s – that is a long time ago! Has it ever been suggested to monitor your seizure activity again? What your your after effects of a seizure and how do you cope with them?

@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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Had other test at BostonChildrens Hospital,when i was young.For awhile think there was the theory in might outgrow it as a kid ,then worry myself sickgoing to school and the knowledge i had grand mals and majority of people didnt realy understand epilepsy..Back then seems like o few year one med like phenobarbital have troubles switch to something else like tegreto!.Late 80s started on dilantin .Have had troubles with going all day trying to get memory back and sometimes 2 to 3 days of severe migranes..plus all the other things like theconvultions ,my poor head and ribs,been banged up a lot and waking up wet when your young and togue got it too..For a long time gave up on neurologist and just used family doctor.Was on dilantin from late80s till this year,Started getting serious grand mals again,t one point 5 in 6 weeks,twice taken to hospital by ambulance,once right in front of my 9 yearold grandson,glad it dint bother him too much..Have had seizures in front of my 3 children and now 3 grand kids.hate having my family seeing me lime that ,now on keppra and vimpat.and see a neurologist again.Even joined a epilepsy group ,epilepsy is a subject thats not something that people talk about ,at least i havent met anyonehope the people in group are open on subect.at i think i need talk about it.

@robertjr Welcome to Connect!! I feel your pain all too well with a lifelong battle with seizures. Doctors used to think that it was triggered by a car accident that I was in. However I can remember as a child in school having what I know Now to be aueas and partial seizures. I was on dozens of different medications over the years and finally ended up at in the Mayo Clinic monitoring unit for seven days. The clinic was fantastic as well as the staff!! The only thing that I think I would have changed was the use of my laptop. Lying in a bed or relaxing in a chair was not my lifestyle. At that Time I was working 12 hour days had two young children married at a very busy lifestyle. I spent a good eight hours of my day on a computer if not more. On my last 48 hours in the hospital I asked if I could resume some of my normal work activities I had brought my laptop and they allowed me to use the laptop and then I started having seizure activity they started Trileptal. I no longer have migraines daily and only had one aura in 10 years. No terrible side effects.

So grateful to my Mayo Clinic Team!!!
Dawn

@dawn_giacabazi

@robertjr Welcome to Connect!! I feel your pain all too well with a lifelong battle with seizures. Doctors used to think that it was triggered by a car accident that I was in. However I can remember as a child in school having what I know Now to be aueas and partial seizures. I was on dozens of different medications over the years and finally ended up at in the Mayo Clinic monitoring unit for seven days. The clinic was fantastic as well as the staff!! The only thing that I think I would have changed was the use of my laptop. Lying in a bed or relaxing in a chair was not my lifestyle. At that Time I was working 12 hour days had two young children married at a very busy lifestyle. I spent a good eight hours of my day on a computer if not more. On my last 48 hours in the hospital I asked if I could resume some of my normal work activities I had brought my laptop and they allowed me to use the laptop and then I started having seizure activity they started Trileptal. I no longer have migraines daily and only had one aura in 10 years. No terrible side effects.

So grateful to my Mayo Clinic Team!!!
Dawn

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Dawn,thanks .I guess back then finding out early in my life didnt really mean much.I had a fewtest done then it was likemaybe he will outgrow it..:-)Like i said ,only thing done was changemeds when id start getting too many close together.That was main reason i stopped seeing neurologist for years, just had my family doctor do everything far as pesctiptions and test.wish there was a internet ps nocomputers back then lol.Never heard of Mayo Clinic or places like that..When i was young for year thought i was only person in town that had this.From Massachusetts,.Sonice to have aplace that cares aboutand helps people with epilepsy .Im too old now but who knows what might have happen if!People in here an d Mayo are priceless.I could go on but gonnastop.

It is a horrible experience. I would insist that a family member or friend be permitted to stay with person 24-7.

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

@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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I am the mother. I brought my son to a unit on Thanksgiving week (don’t want to disclose where we went). To add to the already unpleasant experience of forcing multiple seizures, The staff was was short and the atmosphere was cold and non attentive. Some of the things that happened were cruel. I had to advocate for my son and got in a half dozen confrontations. I couldn’t believe the the treatment received for something so serious. There was no way I could have left my son (adult ) at the hospital to endure this experience on his own. Answers were not complete and had to do follow up tests later in to the next year to confirm the appropriateness for surgery. Next step a diagnostic surgery.

In reading the comments here, my experience was completely different. I was hooked up for five days and did not have a seizure at all. On the sixth day, I went home. Being strapped in the harness at the unit and only having the access to walk from bed to bath was nutty. I know I was there, ‘seizing for a reason’, but the walls grow you fast. Two days later after I left the unit, I had a grand mal.

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.

@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 was there in January of last year. Although they were not able to capture seizures at that time, I was accepted as as a surgical patient. I made a return visit in May for further testing to capture the seizures necessary for the focal point. As of today, I am now over 10 months seizure free after my third surgery. Just like in your son’s case, it is hard but very necessary. I’m thankful as well.

While I am sure it is very effective for some, my daughter had an extended eeg at Mayo. It is difficult to expect seizure activity when you are removed from your everyday triggers, such as changes in light, sounds, motion that cause each individual to have seizures at home. Also, there was a mistake made and thus seizure meds were only taken away for 24 hours. Brain spikes were documented in the 36 hours we were there, not seizures. Finding accurate answers then becomes frustrating. We spoke multiple times about wishing there were a way to record seizure activity while the patient goes about their normal routine, similar to that of a holter monitor for the heart.

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.

@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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@suellipo68 Thanks goodness your son has you by his side advocating for him. It sure sounds like the situation you were in included unnecessary and avoidable anguish for both you and your son. In many monitoring units, a family member can stay with the person being monitored. At Mayo Clinic, we encourage a family member to be present at any time including overnight as long as it doesn’t interfere with patient care. We also designed our rooms in the epilepsy monitoring unit so that there is space for a family member to stay.

As you can read from the experiences below from others like @findanswers @cmcafee and @patrassi, the procedure is still very anxiety ridden for both patient and accompanying family member.

I’d like to ask all of you, what could the monitoring staff do to help decrease the stress for the family members or what did a staff member do for you that went above and beyond to help you?

@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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Wow @amckinley75 – Five days hooked up and waiting waiting waiting. That could’ve been easy. I assume at your second monitor visit they were about to capture the seizure activity necessary to go ahead with surgery. What was different during the May testing?

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