Patient Stories - Liz's Story

A Family Legacy

Does obstructive sleep apnea run in families? In mine it does a marathon!

First, My Diagnosis

I had been to the doctor so many times complaining of exhaustion over the years, I wondered if my chart must not have some notation of hypochondria in it! After all, the tests always came back normal, and we had checked everything--thyroid, chem.-20, hormones, allergies, EKG--what else could we possibly check this time, that we hadn't done before? I was just fat, forty-something and fatigued.

"Lose weight, don't smoke, exercise". For this, doctors go to school for how many years? Learned all that in fifth grade health class, didn't we? If all my tests were so normal, why did I feel so awful?

Falling asleep every time I sat down--in front of the TV, at my desk, in meetings. Sleeping 16 hours a day and still feeling exhausted wasn't normal. If menopause accounted for the waking up in a stupor with a sweaty gown, wet hair, a dry mouth, and drool on the pillow, ok; but how many years does this little party last? And "fluid retention"? Just when am I retaining it? Certainly not at night--if I had any more potty trips, I could just take my pillow and sleep in there!

Aware from TV documentaries that many people had found their own elusive diagnosis and cure from personal research on the Internet, I began "searching". Fatigue, Exhaustion, and Sleep, yielded interesting "hits" on common and rare disorders. Many shared some of my symptoms, but only apnea was a 100% match. Hmmm, why had I never thought to mention my snoring problem to my doctor? I guess I had always just thought of it as something that is, like my freckles; just part of the family legacy--annoying, but nothing to worry about or treat. We all snore!

Well, back to the doctor. This time armed with the "apnea symptoms checklist". As I began to describe my snoring, he interrupted me, and said, "I think I know where you are going with this, and I bet you are right. That probably also explains your developing high blood pressure. I'll get your sleep study set-up right away!"

My apnea was severe, and I began CPAP at a pressure of 18. From the first night, I felt better than I had felt in many years! My blood pressure returned to normal; my muscles no longer ached; my hands and feet were no longer swollen. I slept peacefully all night, 8 hours, and woke just before the alarm. My hubby no longer had to spend 30 minutes in the morning trying to be sure I was up. I remained alert and active all day--no naps, no caffeine, Dr. Pepper or M&Ms needed to fight off sleep.

Then, My Two Sons

Thrilled and fascinated with my newly discovered diagnosis and treatment, I kept returning to the Internet, and each time, I would learn a little more.

Many people were misdiagnosed with allergies and depression... That sounded like my oldest son, the fanatic about cleaning the air filters, and always wanting a humidifier in his room. Although he had seemed to have a severe bout of depression, antidepressant medications made him "manic" and allergy medications did nothing to help his morning dry mouth and sinus headache, or the purple circles under his eyes. He had always had borderline high blood pressure, even as a twelve-year-old. He and his brother had both had ear tubes to drain fluid build-up, just like my brother and I.

I also read that the same cortisol levels that increase the blood pressure can lead to panic attacks for some apnea patients. My younger son was being treated with Paxil for panic attacks. He would wake up in the night, complaining that his heart was racing, his mouth dry, he was choking, drooling, couldn't breathe, and convinced he was having a heart attack.

My oldest brother and I had both also suffered panic attacks at his age. He was also enduring severe headaches, and having trouble staying awake in the afternoons, and when driving. He had thought this might be a side effect of the Paxil, so like his brother, he stopped taking the medication. He said he didn't know what was wrong with him, but the Paxil wasn't helping.

I forwarded information to them, and asked them both to discuss apnea with their doctors. Apparently healthy, my younger son's doctor told him she was positive that he did not have apnea. She ran a host of other tests, including a CAT scan, which scared him to death. "Mom," he said, "I think she thinks I have a brain tumor." I told him, well, take the test to satisfy her, and when it comes back normal, ask her again for a sleep study.

She finally relented, stating she would allow him to have the sleep study to prove to him that he did not have apnea. He was too young, not overweight, and didn't fit the profile. He retorted that it did fit his family profile. He does have mild apnea and started CPAP at 7 cm. of pressure. He no longer has panic attacks, headaches, morning dry mouth or that Primary Care Physician!

My oldest son took note of little brother's improvement! A senior in college, he was willing to try anything that would help him stay awake through his afternoon classes! He said he wasn't sure all his professors took his snoring as a compliment to their lectures, and he was afraid they just assumed he partied too much. His doctor referred him to a Board Certified Pulmonologist.

His sleep study revealed moderate apnea, and he started CPAP at 10 cm. His sleep doctor also referred him to an ENT due to his enlarged tonsils. Based on that exam, he recently had his tonsils removed and a turbinate resection to open nasal passages. He is awaiting a repeat sleep study to determine if this improved his apnea, or if he will need to continue on CPAP.

My Little Sister ...

Very sure that both of my brothers had all the classic symptoms, I kept sharing information at each family gathering about our diagnosis and treatment, and statistics about family predisposition. Well, while my brothers seemed to be ignoring me, my little sister called to ask me to drive her to her sleep study. I was shocked! Of course she snored, and complained of morning dry mouth, but she was just 5'2", 125 pounds, and I really didn't think she had a problem. I was wrong--she has moderate apnea and CPAP at 11. Results I quickly made known to both of our brothers!

And My Two Brothers

My youngest brother had always fallen asleep driving. If he was driving, while he kept his eyes on the road, it was the job of the front seat passenger to keep their eyes on him, and poke him when (not if) he started to nod off. When I read the article about fatality statistics for untreated apnea patients involved in motor vehicle accidents, I e-mailed it with this note. "Don't worry brother, not every untreated apnea patient dies in a violent car wreck, some just have cardiac arrest in their sleep. How's the blood pressure?" His wife e-mailed me back that he had made an appointment for a sleep study! He has severe apnea, and was prescribed auto-pap. At this point my older brother had to concede, and is also enjoying renewed energy on his auto-pap.

And Maybe ...

Recently, we all gathered at our folk's house for the weekend. In spite of a huge meal, the only one down for the traditional after lunch nap was the brother who thought he could travel without his auto-pap. I chuckled to myself as I heard my oldest brother tell my Dad, "You know this runs in families, and Mom doesn't snore." Wonder where he heard that?

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