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Nov 11, 2017 · Been to an Epilepsy Monitoring Unit? What’s it like? in Epilepsy & Seizures

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.