Fred’s Story - Dead Man Walking
One Man’s History with Severe OSA, Seizures, and GERD

June 4th , 2008

In The Beginning

My life with severe OSA (obstructive sleep apnea) has been a long and challenging encounter. The earliest memorable recollection was in 1995. One morning upon awakening, my left arm, leg, face and tongue were numb and not functioning properly. This had followed many months of poor and disturbed choking sleep. Affects from acid reflux “spasms” and a prior duodenal (peptic) ulcer history and hiatal hernia also contributed to the sleeplessness. My doctor referred me to a hospital where a neurologist diagnosed TIA's or trans ischemic attacks (mini-strokes). Slowly I recovered, with a lingering slight limp and noticeable memory loss with occasional confusion. At that time no connection was made to OSA. My days of doing the “NY Times” crossword puzzles were over.

Diagnosis and CPAP therapy

During visits by my sister, she noticed my sleep with very disturbed with gasping and thrashing along with periods of cessation of breathing. I live alone so was less aware of this. In August of 1998 I had the first of many sleep studies. With no surprise, I was officially diagnosed with severe obstructive sleep apnea, hypertension and an abnormal ECG. My oxygen saturation level was recorded at 60% and I averaged 54 DBE (disordered breathing events) per hour.

I was immediately prescribed CPAP and eventually BiLevel therapy. After years of troubled sleep, I actually looked forward to it. I had a very difficult first year on CPAP and wanted to quit, but my sleep doctor said that was not really an option. One doctor read my sleep study and called me “a dead man walking”. Thus condemned, I went back to CPAP and eventually got successful results. I was able to sleep 4-5 hours a day, a huge improvement for me. Blood pressure medications help control my hypertension.

Then suddenly in 2000, very early one morning, I had a terrible throbbing headache on the right side. I was very disoriented and dizzy. I saw a neurologist who was familiar with my memory loss and severe OSA history. Following a brief exam he hurriedly had me admitted into intensive care unit at his hospital. My blood pressure was 220 over 105 and I was diagnosed with uncontrolled hypertension with “incipient CVA” (impending stroke). It took several days to get my blood pressure under control and I was able to go home; but I was never really the same again. My friends and relatives tolerated my repetitive and somewhat delayed speech. A social worker who I think interviewed me after my CVA thing, suggested I file for disability, and I quietly freaked out, and never got back to her. Life is a river called denial. I added more smoke detectors in my kitchen and learned to write things down for myself on thousands of post-ems and kept a daily appointment book, supplemented with my computer…my new brain.

Seizures

The next challenge came in 2005. I awoke very early one morning, crumpled up and feeling like I had been run over by a locomotive. I ached all over but especially my lower body. I tasted blood on my very sore tongue, had soiled myself and later found a few leg bruises. I was unable to walk for several hours and was completely disoriented. My neurologist diagnosed me as having a “grand mal seizure” caused by hypoxia from severe OSA. He said seizures can be a way the body reacts to oxygen shortage, as a desperate way to restart breathing. I think my CPAP mask had come loose during the night. Although I had not slept without my trusted CPAP for years, he reminded me that CPAP use was mandatory for me. He said I must use CPAP every single time I sleep, including daytime naps. He also suggested a new CPAP with leak alarm. He explained that seizures are very dangerous. Fortunately they have only occurred for me at night during sleep times, never during the day. I suspect I have had many lesser seizures prior, but I do not remember as I “black out” during seizures. It is extremely important that I have a non-leaking tight fitting CPAP mask.

GERD

I feel my acid reflux and esophagitis has played a part in my problems with OSA. It has required meds to control the painful reflux and ulcers from GERD (gastro esophageal reflux disease). It requires modification in my eating habits such as mild foods with smaller meals, no eating after 7 p.m. and other things one can easily learn about in the further treatment of GERD. I have read that CPAP use keeps the airway open and permits reflux to occur and so there is higher incidence of GERD among CPAP users. My experience with CPAP does confirm this.

And so, life goes on

The threat of these seizures is an ever present problem I must be very diligent about. I have a power failure alert device and a large back-up marine battery for my CPAP. I self restrict my activities following nights of inadequate sleep. Public transportation is good. I wear a medic alert tag also, and always wear clean underwear. Apneacs…use your CPAP!

Watch for updates from Fred as his story continues. He is now preparing to undergo a series of tests with a seizure and epilepsy specialist to take a closer look to determine more about his relationship with seizures and OSA. Fred also encourages participation in the talk about sleep chat rooms where he has been able to share information with other patients which led him to further investigation about his own conditions he might not have otherwise considered.

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