This post is part of the Epilepsy Blog Relay™. Follow along all month!
We live in a society where we only see our friends and families positive highlight reel on social media. You never see someone expose the hard and bad parts. I started writing about my epilepsy journey 5 years ago on this platform to show the world with long term illness that they are not alone. I needed to remind myself of this many times while writing this article.
Resisting the test
In February, I went into St. Luke’s Hospital in the medical center of Houston for what is known as an EMU (The Epilepsy Monitoring Unit). My doctor had been begging me to have this done for what seemed like years and I always said no. She finally said that she wouldn’t treat me any longer if I didn’t come in for this test. My whole family had seen this doctor for almost 10 years and is world renowned so she had to have a reason. I couldn’t tell if I just thought this wasn’t that big of a deal, or if I didn’t want to rock the boat. Most epilepsy patients can agree with me when I say, if you are seizure free you don’t want to change ANYTHING. I had hit FIVE YEARS seizure free. Why in the world would I test my fate.
What is an EMU
The Epilepsy Monitoring Unit (EMU) is usually a small number of beds located in an academic medical center’s neurological floor. It’s main purpose is to evaluate, diagnose, and find a treatment plan for epilepsy patients. One of the major reasons this study was created is because every epilepsy patient is very different, their seizures are different, the causes are different, and the treatment plans should also be unique as well to fit the patient. A patient is usually admitted to the hospital for 5-7 days. They are monitored by EEG, EKG, and video monitoring 24-hours a day to assess body and brain waves that could cause a seizure. The ultimate goal is to see a patient have a seizure to come up with the best reason why and how it happens for each patient.
The doctors called us the week before and instructed me to not take any of my epilepsy medications, birth control, and any other (un)prescribed meds 48 hours before being admitted to the hospital. One of the main ways you can see changes in brain waves or seizure activity is my taking away medications that you have been on long-term. The seizure activity is the goal in this case.
We arrived at St. Luke’s at 7am on February 18th. We went through the regular in patient admission process. I was then wheeled up to the 22nd floor of the hospital. I can remember standing in the room looking around and realizing this was going to be a tough one. I cried with my husband and the process started.
PRO TIP 1: bring comfy non constrictive , warm pants and tops that can be easily unbuttoned.
The nurse came in first to get me settled in and introduce me to the major rules of the floor. You will not be allowed to get up and go to the bathroom alone, you cannot take unauthorized medications, and you must sleep on the assigned schedule. The next person to come in was the lady to place the EKG machine to monitor my heart throughout the time I was there. I didn’t realize this before then that one of the first signs that they can see of a problem is a raised heart rate and blood pressure. Sometimes they never see full blown seizure activity just the change in heart rate.
PRO TIP 2: You cannot wear underwire bras. I would encourage you to find the comfiest sports bra possible.
The next to come in was the EEG department. This was a a part that I wasn’t prepared for. I have had MANY different EEG’s in my life and this one was very different. The tech started out by measuring my head and spacing out the distances between the leads for optimum results. Then he got out the very smelly glue to place the leads firmly into the head. This process probably took about 2-3(!) hours by itself. They would get part of the process done and then need to test them to make sure they were correct before moving on. The next process was the iv. Again, I’ve had quite a few of these in my day and this was the hardest. It took 5(!) nurses and 4 blown veins later for them to insert the iv. My husband will attest to this, I have a really high pain tolerance. This part was the most painful.
PRO TIP 3: Bring the comfiest clothes you can find. Remember that you will be wearing them nonstop for 5 days.
Next came in the first round of fellows (FYI- you may want to get a canned answer of your medical history ready. You are going to repeat it quite a bit the next few days. ) They asked for medical history, family history, seizure history, medication history of what we’ve tried in the past, how I feel before during and after a seizure, and why our physician thought this would be a good idea. At this point all I wanted to do was put the covers over my head and disappear. We were just getting started.
Finally the main physician on call came in to go through the history once more and the night time plan for the day. Your sleep schedule, food limitations, and expectations are given at this time twice per day. For our first evening stay we would be awake until 5:00am and then sleep until the fellows came in at 7:30. The food schedule would be normal.
PRO TIP 4:if you have someone staying with you make sure they are there to hear this portion.
The night time came, hubby went to my favorite Chinese restaurant for wonton soup. I had no idea how long that night would be. People kept on telling me before I was to go in that I needed to sleep as much as possible. I didn’t heed that warning. I did remember how much I loved Grey’s Anatomy though. I think I watch 3 seasons that night. Once an hour the nurse would come in to make sure I was awake and started conversations so I would stay awake. Sometimes they would bring popsicles. I snacked on my favorite candies and then it got harder and harder to stay awake. I hit 4 am and literally stared at the clock for 45 minutes. We FINALLY hit 5:00am. The said she walked in I was in a ball with a bag of sour patch kids and wiped out. She put a blanket over me and I had one of the hardest night’s sleep I had had in a very long time.
7:00 am and shift change started. The new nurse came in to introduce herself and (thank gosh) take me to the bathroom. This next part of the day became my favorite. My hubby would go to get me a latte and Egg McMuffin (yes I ate at McDonald’s but it was an egg white). We would sit there and catch up on how we felt, what was on schedule for the day, etc. Around 8:00 am the fellows would make their rounds and let us know when the physician on call would be in to see me. After that I would use the time to change undies and use wipes to wash off a bit. You have no idea how good it feels to do that while in the hospital. Around 9:00 am the physician would come in to discuss how I am feeling and how the night went. At this point we had seen no activity or change so it was going to be long week. We did get some good news. I wouldn’t be sleep deprived that night. No matter how much I wanted to sleep I couldn’t ever fully go to sleep during the day.
My parents came to see us Tuesday night and brought us food so Casey could drive home and shower. I cannot stress this enough, your husband or loved one is going to need a break away from time to time. This process is tough and it’s even tougher for them sleeping on a pull out couch. I swear my husband deserves a Medal of Honor for that week. I read magazines ,watched tv while they were there, and thankfully fell asleep.
The cycle started again. 7:00 am shift change (bathroom), breakfast, and waiting for the fellows. This was the morning when it really hit me where we were and how truly exhausted I was. My “happy Rachel smile” had slowly started to fade. Upon the physicians morning he stated that they found some blips on the eeg from the night before and were investigating them. He also stated the dreaded words, “sleep deprivation night”. He then proceeded to tell us if we could not get a seizure we would need to plan for a weekend stay. I remember crying and praying for a seizure. Never in my wildest dreams would I ever wish that upon anyone. Laying in that bed day and night , your head hurting because of the eeg leads, sugar highs and crashes, no meds, and no sleep makes a whole other person come out. I was truly miserable. I decided I was going to do my best to put on a happy face and do this. My husband went to get my favorite tacos and red velvet cake. My sister came to visit so that Casey could get a shower at home.
My physician came to sit with us and catch up on how we both felt. She sat there for an hour. This part made me realize the real reason why she wanted me to do this. She cared so much about us that she wanted to give us the best care instead of shooting in the dark. We as a family have had 100 seizures combined between us. None of us are the same seizure wise. The night started sinking in. This night was the toughest night I’ve ever had to go through physically. When you take away all of the comforts that your body as a seizure patient has grown accustomed to you become out of your element. I began having my aura quite frequently. I would see the flashing light and the jerk over and over with no seizure following. I watched the last two seasons of Grey’s and was bored. The nurse suggested I walk around the floor and sit in my door as she was doing rounds. The eeg tech came out to adjust the cameras. They both sat there with me and talked about why I was doing this process and my family (my sister had been on that floor a few years before). They shared their life with me. They brought me pop sickles and cupcakes from the nurses lounge. I can remember sitting in the chair outside the door jerking so badly due to auras. I had never felt that before for so long. I had been conditioned to take an extra dose of meds and sleep. I couldn’t do either. I finally hit 3:00 am and they stated they had enough and I could finally go to sleep.
Neurology nurses make all the difference
I cannot emphasize this enough, the nursing staff were the people that kept me going. They were incredible! I fell asleep without putting the covers on. I couldn’t stay awake long enough to put them on. I slept so well that night. I remember waking up to the sweet nurse saying that it was time to wake up. I drank my coffee and prayed they would let us go home. The fellows came in and gave us the time window. The physician took longer that day (or it felt like it). He finally came. He stated that the type of seizure that I had was completely different than the one I previously had. They found that I had generalized tonic clinic seizures versus what they previously suspected was focalized which could have been treated with ablation treatment. Instead I was told to continue on the medication train but this time they found that the medication that I was on, topomax was not the optimal choice; keppra was.
So reflecting on this process I would say that it was one of the hardest things I have ever had to go through but it was worth it in the end because we found hope and a treatment plan. If you’ve ever considered this test I would recommend it over and over again. It will completely change your seizure plan. I will also share that while I didn’t have a seizure that week, I did exactly one month after. Apparently this is common. When a person goes through that period of trauma in your life seizure wise all at once it may take time for your body to cope with it. I guess my piece of advice here is to be as seizure prepared or more after your stay just as much as you were in the hospital. It’s not the end of the world to have one, yes I was so conditioned to think that it was a failure. This was a time where I gained a whole different perspective for them.
A note to loved ones
Finally my husband is going to write a bit about it from his perspective as well since he was there for all 5 days with me by my side. “Rachel called her EMU sadistic summer camp. They kept her awake for 24 hours at a time and exposed her to strobe lights in order to induce a seizure and the only way she could stay awake through it was lots of caffeine and sugar. If your loved one is going to have an EMU, you should plan on being with them the whole time. The EMU study is physically and emotionally draining and they will need someone by their side to comfort them when they feel like giving up. It was all worth it in the end because Rachel’s doctor was able to learn what type of seizures she has and is now better able to manage her seizures.
- Do something everyday to boost their spirits; I brought Rachel dinner every night, along with lots of candy and caffeine.
- Even when you are asleep just being there is comforting.
- When you get home help them with the shower, they will be weak and need help.
- Buy a bottle of baby oil to remove the glue from their hair; it will take at least 20 minutes to get it out.
- Your work starts after you get home; they will need help because they are sleep deprived and just had a seizure.
NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.