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

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.

@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?

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?

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.

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

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!

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?

@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?