Rapid decline

I was able to set up an appointment with an epilepsy specialist. My appointment went really well. This doctor was incredibly kind, reassuring, and gave me a lot of space and time to discuss what was happening and explained what he thought was causing my symptoms.

I had a lot of anxiety leading up to this appointment, but I felt incredibly reassured and ready to start medication. I felt validated and that there was a plan to prevent the progression of my symptoms. He also suggested that I should get a neurosurgical evaluation to discuss my case and whether surgery would be an option. From his perspective, surgery should be considered if seizures, episodes, or symptoms were not controlled by three different types of medication. He also thought it was important to monitor the lesion every six months to see if there was any progression of the bleeding.

During this appointment, he recommended a medication that could quickly get to a therapeutic level versus a medication called lamotrigine that has been shown to possibly benefit mental health or anxiety. My thought was that I should try the lamotrigine because I was naturally so anxious. The problem with this medication is that it is slow to titrate.

Three days after my appointment, something new changed. I was currently taking the lamotrigine, but had a very low level that was not therapeutic for seizures.

I was working and then had a strange sensation that I was moving in a car that suddenly stopped. I briefly lost consciousness. Immediately after that, I felt the familiar sensation of panic or fear followed by the stomach flu symptoms. After this, I felt tired. I told my coworkers that I needed to step away and rest for a little while. Generally, I rest for 30 minutes to an hour and feel cognitively fine both during this and after.

This episode was different; I felt incredibly confused. It seemed like a concussion, and I felt like I was in severe decision paralysis. I was unable to decide what I should do, if I should work, call for help, or just go back to resting. This kept going for several hours; in addition to that, I felt strange tingling in my left fingertips. I called my family, and they thought I needed to be seen. I called my neurology office to try to get help from their triage nurse. They said they would reach out to my neurologist, but it was getting close to the end of the day. By the time my family could reconnect with me, they were worried about my confusion and drove me to the emergency department. This is a little embarrassing. But during this time, I had a repeat MRI, and it didn’t appear as if anything had changed. They called my neurology office, and they discussed doing an infusion of Vimpat. The first medication that was discussed with my neurologist. I was also given magnesium and a migraine cocktail. At that point it had been 11 hours of confusion, but after this, I felt back to normal. I believe that this is my first noticeable postictal state.

I was kind of ashamed that I didn’t listen to my neurologist’s initial suggestion. I then continued on the Vimpat at a therapeutic dose, and for the first time in several years, I felt really good. My mind felt clear and not distracted or worried. It was like something was quiet and my brain was able to relax. I was really happy with this and felt like this was incredible progress. I was excited to continue down this path. At this point, I was not able to drive, and this was stressful/ very hard with a toddler who wants to go do lots of things; however, I generally felt safe. I was hopeful these driving restrictions would be lifted in a few months.

After a month, something new happened. I was working again, and felt off, but it happened suddenly, and it felt again like an urgent stop in a car. I looked at the clock on my computer to know the time. Again for a moment, I lost consciousness. When I came to, my head was resting down on my chest, and it felt like it was in a position that made it hard to breathe. I gasped for air. I checked the clock again. It had been 90 seconds. Soon after this, I had heart palpitations; it felt like I was struggling to breathe. At first, I thought this might be a panic attack. I started Box breathing, grounding myself with the floor and things around me. I did what I could to reassure myself and slow my heart rate. However, the symptoms continued then I noticed at the same time my left arm was tremulous. The left side of my face felt strange. It seemed difficult to move. I was unable to lift my left arm above my shoulder. I tried to stand up, and it was difficult to walk. I tried to keep walking in case maybe this was something related to the panic attack, and I could move through it. These symptoms did not let up. I told my coworkers that I was unable to work at that moment. It was difficult to type, and I could only do it with my right hand.

I looked at the clock again, and the symptoms had continued for 10 minutes. I still could not feel sensation on the left side of my face. I could still not raise my arm easily above my shoulder, and it was incredibly tremulous. My left leg was difficult to move and felt tingly and somewhat numb. My speech felt slow, and it was hard to find words.

I was struggling to come to terms with it, but my symptoms seemed like I was having a stroke. I waited long enough, so I called 911. The firefighters and EMS had arrived. I was still in denial and was trying to ask them if I possibly was having a new type of seizure. Of course they could not answer this for me, and I was trying to talk through it, but it didn’t sound very logical. They said they wouldn’t force me to go to the hospital, but they strongly suggested that I should. I called my mother-in-law to stay with me to see if symptoms would pass, and she said absolutely not and to go to the hospital.

So I agreed to go. In the ambulance, they continued to do a stroke assessment, and I was unable to complete several of the tasks, so they escalated it to a stroke alert. In the emergency department, saw the ER doctor and the telehealth neurologist. They continued the stroke assessment and imaging, which thankfully was negative for an acute ischemic or hemorrhagic stroke. At this point, I wanted to go home, but I was still feeling abnormal, and the symptoms had persisted for about two hours. I was unaware of what was going on, and the ER doctor thought this could be a TIA. He wanted me to be admitted to the hospital.

I convinced them to consult my personal neurologist. He suggested that my focal seizures had progressed to a new part of my brain and this was causing this change of symptoms. I got another infusion of the seizure medication after this; my symptoms intermittently improved, but didn’t fully resolve.

Throughout the next several weeks, I continued to have frequent symptoms of left-sided deficits, fasciculations, and shaking. New medication was added, and doses were increased. Things would feel better for a few days, and then they would return and seem like they were more severe.

At the peak of this, I was having 5 to 6 complex focal seizures with awareness, but inability to speak. In these episodes, I had to lie down. The left side of my body was shaking. My head was twitching, and after this it was difficult to swallow, and I had some confusion. In addition, I was having small episodes of hand twitching or flapping of my left hand that lasted for 18 to 20 seconds, and these happened every one to two hours and in my sleep.

During this time, I didn’t feel safe to be alone. I didn’t feel capable of taking care of my son. I didn’t feel comfortable cooking or taking a bath. I didn’t feel like I could go for a walk with my son. I didn’t feel safe to take him out in the backyard. All I felt like I could do was be in an area that I knew was safe for him and safe for me if I were to lose consciousness or have a tonic-clonic seizure. I also wasn’t sure if I could work. These things were occurring so quickly and causing a lot of cognitive fatigue.

When my husband was at work, I had to call family to help me take care of my toddler. During this time. My toddler could see me having trouble, and this caused a significant change in our normal routines.

At this point, I saw the neurosurgeon again. He agreed that I should do the resection to remove the lesion and the surrounding tissue that was irritated around it. He was optimistic that this could potentially resolve or reduce my seizures if they were primarily coming from the lesion or around it. But of course, he could not offer any guarantees. He did say this would reduce any chance of it bleeding again in this area. He said that this alone could give me a better long-term quality of life. At this time, we scheduled the surgery to happen in three weeks.

I met again with my neurologist after this. He agreed that surgery was a logical option, and at this point, since my seizures were under such poor control, we added a scheduled benzodiazepine to help my brain to get me through the next few weeks until my surgery.

I generally felt miserable, tired, and confused, but this medication did help calm things down, and I felt more stable. Within about a week, the seizures started to come back, and this medication had to be increased.