Before my diagnosis of temporal lobe epilepsy (TLE)

It’s really hard to say when my symptoms started. Many things that have been happening for the last 20 years have now been viewed under a new light of being possibly focal epilepsy. For the most part, these patterns of symptoms I thought were psychosomatic issues related to complex PTSD.

The earliest type of episode I can recall has been a pattern of feeling extreme amounts of generalized fear. This fear is not related to a specific circumstance or issue within my life. It feels like an abstract sense of panic and lack of safety. This feeling is often followed by severe G.I. distress. It would feel like I had 10 to 20 minutes of the worst stomach flu that would spontaneously resolve, and I would feel fine for the rest of the day. However, after these flu-like symptoms, I would have a headache and be tired and feel like I needed to rest. To me, this seemed like a pattern of IBS, and then it made sense to feel tired after having those types of symptoms.

These episodes often happen in clusters but do not have a clear pattern. Multiple times I was seen by doctors and gastrointestinal specialists for this problem. I had a lot of extensive workups to rule out IBD, such as Crohn’s or colitis; nothing unusual was found.

Sometime around 2018, I started having new episodes of feeling uncoordinated in my hands. These episodes would be brief, maybe one to two minutes; however, the full recovery back to normal function could take 5 to 10 minutes. The sensation was very strange because it was not painful, but it felt like my brain was telling my hands to do something, but they were not reacting in the way that they should. Because of this, I would be holding things and drop them, I could not open doors, turn pages, or perform any fine dexterity type of skill. This issue was particularly disturbing to me because I am a healthcare worker and at the time worked in emergency medicine, and I felt like this issue was making it unsafe for me to keep this job. It was also hard to admit that this was actually happening and not some form of anxiety. Around the time it started happening, I had an ultrasound and was referred for an EMG to check the nerves in my arms and hands. I delayed this and changed jobs.

As these incoordination issues continued, I felt more limited in my ability to work in critical care environments, and as I advanced in my career, I felt uncomfortable completing task-related skills.

In 2024, I gave birth to my son via an emergency C-section. A few months later, I had a large fibroid removed from my uterus. Soon after the surgery, I had another type of episode where I lost consciousness. It was very brief, possibly a minute. I was sitting down, I wasn’t dizzy, I wasn’t stressed or lightheaded. We were eating dinner with my son in his highchair, and then suddenly I was on the floor, very confused. At the time, the most reasonable explanation would be syncope. In my mind, this didn’t fit with a typical seizure pattern; there was no convulsing, shaking, tongue biting, or incontinence. Later that night, I went to urgent care; labs, and ECG, and workup were unremarkable. Throughout the next year, I had episodes of feeling dizzy, continuous paresthesias of my tongue, lack of spatial awareness, and extreme inattentiveness. To me, this seemed like it could be some postpartum sequela and fatigue. I mentioned it a few times to my primary care doctor, but honestly didn’t push for much testing as I didn’t personally think anything was terribly alarming. The unconsciousness episode, though, did give me a little bit of fear because I didn’t know if it would happen again.

The symptoms in my hands became more noticeable; it would happen a lot while I was carrying my son or trying to read him books. It was becoming increasingly frustrating to me. I followed up at an orthopedic center. They suggested that I continue with the previous plan of getting an EMG. The (2026) EMG was completely normal, and I was told it would obviously be normal because, for the most part, I have regular motor function of my hands. This neurologist suggested that I get an MRI to rule out MS.

In February of 2026, I had an MRI that showed a lesion in my right temporal lobe that was consistent with a cavernous malformation. The neurologist who ordered the MRI was fairly dismissive of this and suggested it was an incidental finding. He did not inform me of the signs of a very recent bleed and how there was evidence of multiple bleeds around the lesion that have happened historically.

After discussion with him of some of the symptoms that I had that were consistent with right temporal epilepsy, he agreed to order a sleep deprivation EEG. During this, I had no symptoms. It was unsurprisingly normal.

During this time, I had significant anxiety, which I assume led to an increase in my symptoms. I didn’t feel like I was making any progress with my first neurologist, so I requested to see a local Epileptologist for consultation.