Sleep Apnea

Welcome back to the next Thriving not Just Surviving blog post. It’s been a particularly productive week. On Wednesday, we met with the sleep specialist who fast-tracked the sleep study to Friday night. I didn’t expect the study to happen this quickly, but I’m very glad to have already completed it.

Sleep Study Purpose
The primary diagnosis that a sleep study determines is sleep apnea. Sleep apnea is a condition in which a person’s breathing repeatedly stops and starts. This is attributed to the airways, primarily in the throat, closing or narrowing. Its potentially serious and can trigger other serious issues including: heart attack, stroke, oxygen deprivation, and sometimes even seizures.

I’m not the stereotypical patient for sleep apnea because I am still young and not overweight. However, I have exhibited many of the symptoms including excessive fatigue throughout the day, headaches after waking up, choking when sleeping, and snoring. My neurologist also believes that sleep apnea could be increasing the chances of having seizures, due oxygen deprivation during sleep and the excessive fatigue.

Preparing for the Sleep Study
I arrived at the hospital on Friday evening and met with the sleep technologist who began hooking me up to various sensors. The main component of the sleep study is the polysomnogram which records brain activity, eye movements, heart rate, blood pressure, oxygen levels, body movement, and more. This included a host of electrodes attached to my face, chest, arms, and legs. I also had sensors under my nose and around my mouth to monitor airflow.

Since I’m an epilepsy patient, they also used an electroencephalogram (EEG). This is a test that detects electrical activity in your brain using small, metal discs (electrodes) attached to the scalp. Brain cells communicate via electrical impulses and are active all the time, even when you're asleep. This test is used in a variety of ways to identify brain activity related to seizures.

Beginning the Sleep Study

I went to bed around and 10 p.m. and the sleep technologist began monitoring me on the EEG, polysomnogram, and by video camera. It was hard to fall asleep due to all of the electrodes, but I fell asleep sometime around 11 p.m. At 1 a.m. the sleep technologist woke me up and informed me that I failed the test due to severe sleep apnea and that they were going to start administering Continuous Positive Airway Pressure (CPAP).  This is the primary treatment for severe sleep apnea.

It was difficult to fall asleep as I was trying to adjust to the CPAP mask, but sleep eventually came and I finished the rest of the test. I was awakened at 6 a.m. on Saturday and was informed that I had over 30 sleep apnea occurrences per hour during the first two hours of the test. This means that I stopped breathing for at least 10 seconds 30 times in a single hour. Its standard protocol for the sleep technologist to begin CPAP if the patient has at least 5 sleep apnea occurrences during the first two hours. In summation, I have very severe sleep apnea that is most likely significantly impacting my quality of life and potentially a contributing cause of the seizures.

Next Steps
The results are still considered unofficial and a pulmonologist, neurologist, and sleep specialist will analyze the test results from the EEG and polysomnogram, but it is expected that CPAP will be the treatment recommended for my diagnosis. This is very good news because it could explain the seizures and at the very least should improve my quality of life. If left undiagnosed, it could cause more serious issues later in life.

I still have many questions surrounding the sleep apnea and the relation to the seizures and even lung cancer. I’m hoping that the EEG and polysomnogram can shed some light on these topics. I was told that it could be up to two weeks for the test results to be published. The plan over the next few weeks is to manage the sleep apnea as best I can and hope the results come back soon so I can obtain a CPAP machine as soon as possible. I’ve rambled enough for now so I am going to hold off for at least one more week on the lung cancer discussion. I hope everyone has a great Memorial Day weekend.

A Seizure Relapse

Welcome back to the next Thriving not Just Surviving blog post. Unfortunately, it’s been a rough past week. At approximately 4:00 a.m. on Sunday, May 13 I experienced another gran mal seizure. This seizure was not as severe as the previous occurrences, but I was still taken to the emergency room to ensure no significant injuries occurred. Maureen and I returned to St. Louis later in the day to reconvene with my team of doctors.

The most significant injury concern was my right shoulder which was nearly healed from the previous round of seizures. Fortunately, numerous x-rays showed no further structural damage and the pain is primarily attributed to a muscle strain. I’ve been using the sling again to protect it, but I don’t expect to use the sling long term. My anti-seizure medication has been increased in hopes of preventing any further seizures. 

The big unanswered question continues to be, "What is the cause of these seizures?". We have already completed the necessary medical tests and those have revealed nothing informative. However, this additional seizure does gives us a better opportunity to look at common trends and factors surrounding each of the five seizures. Our neurologist believes that it is potentially important that four of the five seizures have occurred during sleep. As a result, we are looking to schedule a sleep study in the very near future. This will involve me spending the night at a sleep center and undergo continuous monitoring of my brain, breathing, and other vital signs throughout the night. This would look to see if something abnormal is occurring with my brain that might help us better identify a cause. There is the potential that sleep apnea could be contributing a contributing factor to the seizures.

The best piece of news from the week was that my Chest CT scan revealed the remaining tumor in my right lung was stable in size compared to previous scans dating back to October 2017. This scan was originally scheduled for the fourth week in May, but we pushed up the test since I was already in St. Louis for the seizures. There is the potential for some exciting news on the cancer front, but I’m going to hold off on discussing anything further for at least another week.

The last week has been particularly trying. I was starting to settle in to a more regular routine of daily life and it appeared that the anti-seizure medication was going to work for the long term. As discouraging as it is to “return to the drawing board” regarding the seizures, I am hoping there is a chance to identify the primary cause that would dictate a treatment plan that does not involve taking anti-seizure medication for the rest of my life.

I plan to stay in St. Louis for at least the next few weeks so that I can undergo the sleep study. We meet with the sleep specialist on Wednesday and hopefully the study gets scheduled soon after. I plan to post again next week with an update from the sleep specialist as well as discuss some exciting developments on the lung cancer front.