Chuck's Sleep Apnea Story

"COPING WITH NARCOLEPSY AND SLEEP APNEA"

Life in the School Years

As a pre-teen, I was always 'tired'. My tendency to be tired was attributed to my high level of allergy sensitivity, as indicated through skin allergy tests. I accepted this because I was young and it was not in my mind to consider any other possibility. Nor was I old enough to disagree with my parents or a doctor.

I trudged through school, getting low marks throughout the school year, only to score extremely well on the annual standardized testing. Per the guidance of school administrators, I was run through various cognitive and psychological evaluations. All said I was fine, smart, and able minded. I never felt I was otherwise, but personally could not understand why school and I did not work well together. I did, somehow, manage to graduate the year I was expected to. What a relief!

The following year I started attending the local University. Since my mother was a career employee at the University, I was lucky to have completely free tuition and discounted books. What more could one ask for? I was happy to be able to go to classes on a less rigorous daily schedule. I managed fairly well at first since most of my classes were scheduled almost one after the other. The second semester was a different story. My schedule was spread over various times of day throughout the week. I rarely made it to my 8:00 am class, no matter how early I went to bed. At the sight of my mid-term grade report, I ended up dropping out, much to my mother's, and my own, disappointment.

By this time, I had gone through several short-lived jobs, much like others in college do. I just figured it was normal for jobs to change with the semester. Now that I was not going to be in school, all I needed was a half way decent full time job. I found one, but after about 6 months the newness wore off and I began to slack at my duties. This ended up being a pattern that I followed for years to come. I even tried another attempt at attending school at the University, only to find failure once again. I found that 'altering' my mind was the only way to forget about the failures I was incurring. I was a good person, but with the work history of a junkie, literally. The only person I knew of that had a job history like mine was a well-known major drug abuser. This only let me feel more let down by myself. I trudged on for many more years in this pattern.

Looking back after several years of diagnosed Narcolepsy, I often have realizations of events in my teens that now have some sense to them, but which were not really explainable at the time. I often feel that my histamine levels have a close relation to my EDS (Excessive Daytime Sleepiness) levels. I also think that Narcolepsy is why I was not interested in very many sporting events as a young kid and in my teen years. I think my academic potential was affected by both apnea and narcolepsy, in high school and in college.

Work and Marriage

Finally, luck came my way, as I met, fell in love with, and married my wonderful wife. It was a fun and happy time for us both, but that changed about 11/2 years into our marriage, when my wife became pregnant with our first child. I was both very happy and yet frightened by this large change in our future. To this point, things were going well, but the short-lived job pattern was quite consistent. This lack of my ability to maintain secure income for my family induced a stress within me that opened the door of Narcolepsy wide open, from the less intense symptoms I had lived with throughout my life. Unbeknownst to me, the real struggle had only just begun.

At this time I had a major increase in snoring, separating my wife and myself from one another. I still woke the house often, roaring through two closed doors. It was when my wife was home from work awaiting birth of our son, that she saw someone on Oprah Winfrey. He described himself as if he were me. Upon this revelation, I consulted the Sleep Disorder Center at the University of Louisville. My lack of employment for once was to my advantage, as I qualified for no cost services and treatment under an indigent care program. This allowed the doctor to do all he needed with no insurance company to say he could not. I was diagnosed with Sleep Apnea, which was quite definite. I also was told I might have Narcolepsy, but would need to be treated for my apnea; then more testing for Narcolepsy in the daytime would be in order. I used CPAP religiously. I had the Multiple Sleep Latency Test (MSLT) on 3 separate days, and all tests produced a confirmed diagnosis of Narcolepsy. "But I was feeling so much better!" I thought.

Things went on in the 'improved' situation for a few months. Then I was temporarily relocated to work elsewhere, as the factory I was employed at was on a lengthy redesign shutdown. I was operating a forklift, and went from a busy pedestrian workplace, to one that had only 10-12 forklifts and no pedestrians. I began to feel the effects of the calmer, and much warmer, workplace. It was when I fell asleep writing, sitting on my running forklift with only my foot on the brake keeping me stopped, that the Narcolepsy had its first negative effect in my life. I had apparently slept for close to 45 minutes. The break bell had awakened me, but in my mind, it was only about 10 minutes since last break. When asked, I had to tell my boss why I had not gotten my work done. I was told I should go home and 'sleep it off'. I was then called and told I was being let go. How could I have ever imagined that was coming?

Becoming "Mr. Mom"

Since diagnosis, I have fought the sleepiness of Narcolepsy with various stimulant medications, only to have my disposition erode to that of a mean person no one would wish to be around. Once I accepted that I was unable to be 'normalized' with medication, I took my son out of preschool, which cost almost the amount I could manage to earn in a week's time. I decided I would care for my own child, and soon found it to be the best thing I have ever done. I was able to exist in my home, in a low stress environment, and was able to care and teach my son in readiness for Kindergarten and beyond. The reward of being a "Mr. Mom" has made me feel more productive than any of the jobs on my employment history 'rap' sheet.

We now have a 1-year-old son, and our oldest son is now in the first grade, sponging up anything that is taught to him. The decision to have a second child was a long and hard choice to make. We have no regrets, and I always know that if I have a bad day, there is probably someone somewhere that can make my problems mild by comparison.

Living with Two Sleep Disorders

My mind is like a computer in some ways. If my brain sits idle for a while, my EDS is like a power saver that shuts things down until something comes up for the brain to do. I know that this is relative to the Narcolepsy and micro sleeps, instead of the apnea. I tend to feel tired when the apnea is not being treated effectively (i.e. I have a cold and can't use the machine for risk of sinus infection). The EDS of Narcolepsy is different in the sense that I can feel well rested in my body, but my mind is sleepy. I can close my eyes and feel the difference between the two.

My apnea is now controlled with strict usage of CPAP, to allow for the best evaluation and control of the Narcolepsy. I am about 98% Cataplexy free. My Cataplexy is only partial and affects my face and neck, and sometimes my left side. I currently use almost no meds for the control of EDS. I do nap often with the baby, so I can manage things with those naps fairly well. I am working on meditation more, if I can get the time and it is quiet; it's not always easy to find them together. I am lucky, as my family pretty much supports my situation and how the family arrangements are working out. I can play with my kids all day; what more could one ask for?

Kathy's Sleep Apnea Story

"RECOVERY ROOM APNEA DIAGNOSIS"

CPAP in the Recovery Room

Being diagnosed with sleep apnea was, for me, a slightly scary experience. I had surgery at age 39 on September 24, 1999 and woke up in the recovery room with this mask on my face that wasn't an oxygen mask, and a machine blowing cold air at me. Having been through nursing school and doing a clinical day in both the OR and the recovery room, I knew this was not normal. They say that having a little knowledge can be a dangerous thing. They are right. At least it was for me.

Now, I am not a small woman. On the contrary, I weighed almost 500 lbs. when I had surgery and I feel compelled to tell you that I did not have weight loss surgery, nor would I consider such at this time. The success rate isn't good enough for me to consider it. It's not even 50%. I did have 65 lbs. of my abdominal fat pad removed though. A tummy tuck on a grand scale. Anyway, here I was in the recovery room, freezing to death with this *thing* blowing cold air in my face. The apnea was discovered when the breathing tube used during surgery was removed and my oxygen saturation levels dropped below "normal". The surgeon told me that I had probably been used to only having about an 80% saturation rate on average. My saturation rate dropped to almost 60% in the recovery room.

When I was finally awake enough to be moved to a room, the Respiratory Therapist hooked me up to an ambu bag with oxygen. Now, I know most of you have seen these medical shows where they wheel the patient around on the gurney and holler about somebody calling the elevator so they wouldn't have to wait. You've also seen the ambu bags (a mask and manual-squeeze bag for resuscitation efforts) they whip out whenever a patient isn't breathing. Now imagine that happening to you while you are still groggy from the anesthetic. Intellectually, I knew I was breathing on my own, but on a subliminal level I was panicking. It was quite an experience!

Recognition Finally Sinks In

After things got settled down I was okay. Then, the alarming of the oxygen saturation monitor hooked to my finger really annoyed me. I didn't sleep well that night, but wasn't surprised. I didn't expect to sleep well. The doctor told me about the sleep apnea, but it didn't really register with me. It was something I'd heard of, but didn't know anything about.

I was placed on a BiPAP (Bi-level Positive Airway Pressure) at a pressure of 10/5. I knew what a CPAP (Continuous Positive Airway Pressure) was because a friend of mine had one and had shown it to me. From that I figured out that a BiPAP was the same thing, but blew at 2 pressures instead of a constant pressure. After the third night of sleeping well except for being rudely awakened several times by the saturation monitor, I called the nurses desk and threatened to drop kick the thing out the window if someone didn't come to turn it off. I don’t really remember being disturbed again during my hospital stay, so I guess I got my point across.

Sleep Study

The doctor was unable to get me scheduled for a sleep study while I was in the hospital, so I didn't have one until late November of 1999. I was sent home from the hospital with a BiPAP set at 10/5 and an oxygen concentrator because I was also on 4 liters of oxygen at night while I slept. I was tested with the BiPAP on 10/5 and still had 59 episodes of apnea/hypopnea per hour. After my study, I was diagnosed with severe obstructive sleep apnea and my pressure level was raised to 16/12. Quite a difference, but I didn't mind it at all. I was finally sleeping through the night and didn't wake up thinking I had to go to the bathroom all the time. It was great to finally get a good night’s sleep and to wake up feeling so refreshed and well rested. It did take some time to start realizing that there was a big difference, but within a few weeks I could tell a major difference in my life. I was no longer falling asleep with no warning while watching TV or while driving. Now that’s scary. I haven’t lost a significant amount of weight, but I haven’t been gaining steadily either. I’ve managed to hold steady without dieting since starting treatment.

I had my follow-up sleep study mid October of 2000 and my pressures were raised to 17/13 and I'm still sleeping through the night. I love it and haven't had a bit of trouble adjusting to the machine and head gear. I know that I'm not the norm, but I encourage you to hang in there and keep trying. It's literally your life we're talking about here.

Final Comments

I realize now that I probably even had sleep apnea as long ago as 3rd grade. I remember a couple of times that I had problems and my sister complained about my snoring. She snores worse than I do and always has, but I can't get her to ask her doctor about having a sleep study.

If you even think you even *might* have sleep apnea, please consult your doctor. I know people who are now permanently disabled from the heart and lung damage caused by severe apnea. And don't think you have to be fat to have sleep apnea, or that sleep apnea is a "fat disease". It's not. There are just as many average sized people who also have it. Please, if you, or someone you know, may have sleep apnea, go see your doctor.

Lee Ann's Sleep Apnea Story

"IT COULD SAVE YOUR LIFE"

I am a 58-year-old woman and I was diagnosed with dilated cardiomyopathy in 1991. It was a moderate case but over the years, even with medication, had worsened somewhat. I felt reasonably well except for being sleepy all the time. I could go to sleep at a stop light, reading a book, in the middle of a conversation, etc. Anytime, anywhere, I would nod off. This had been going on for 15 or 20 years.

Finally in October 2000, a doctor sent me for a sleep study. I quit breathing numerous times, one time for almost 2 minutes, and woke repeatedly. Before they "woke" me to put a mask on, I never did get to the REM sleep mode.

Since then, I have slept with a mask and CPAP machine every night. It took a couple of weeks to notice a difference, but then the difference was amazing. I felt like I had my life back.

For my dilated cardiomyopathy, I have an echocardiogram every 6 months. In February 2002, the results of my echo were astonishing. I had gone from an EF (ejection fraction) of 28% to 30% to 57%. My left ventricle, which is enlarged, is smaller now. I asked my cardiologist if it was because my sleep apnea was being treated. He said that researchers are finding more and more relationship between the two illnesses. He weaned me off one of my heart medications but I still take the others. (I still have a leaky valve). Hopefully my August 2002 echo will be as good.

I don't know if the improvement is permanent or not. I believe sleep apnea can do serious damage to the heart. I hope anyone who reads this and has sleep apnea will use his or her CPAP machine every night without fail. I have talked with people who tried but ended up with their CPAP machine in a drawer or closet because they couldn't get used to sleeping that way. It is worth the trouble and any adjustment you have to make to do it.

It could save your life!

Marge's Sleep Apnea Story

"A TEACHER'S STORY OF LIFE THREATENING SLEEP APNEA"

Having had sleep apnea for a long, long time, I was not officially diagnosed until August 1999. Since then, I have been successfully treated with CPAP. This school term, I will be celebrating thirty years of teaching.

Shortly after graduating from college in 1971, I returned to live in my parents' home. I remember waking up in the middle of the night, choking and gasping for air! My Dad insisted I go to the doctor. That doctor told me I had a thick neck and his prescription was, "lose weight and use two pillows".

I spent the next twenty plus years dedicating my life to teaching, volunteer work and traveling. My traveling companion and I used to joke about my snoring. She told me I often stopped breathing. It never bothered me in the daytime, so I was not concerned about it and we continued to laugh about my snoring.

In 1990 my life changed. After living with my parents since graduating from college, I married at the age of 39. My marriage was a package deal; I got a husband, three young daughters, two dogs and a mother-in-law next door! Although I had never been happier, the adjustment of sharing my life with all these people created stress. Two years later, I lost my mother to cancer and within the next four years I lost my father and nine other family members and friends. Although my husband told me I had sleep apnea shortly after were married, we blamed my moodiness and tiredness on all these sad things happening in our lives.

By spring of 1999, my health was at its worst. I gained a lot of weight since my marriage. I blamed my weight gain for the shortness of breath I was experiencing. It was so bad, I had to stop every two or three steps when climbing stairs. Getting around the house became a chore and I dumped more and more work on the girls. When we went out, my husband would have to drop me off at the closest door. Walking the mall was out of the question. I continued experiencing extreme mood swings which I blamed on menopause. Although I could hold myself together when I was at school, at home I was not pleasant to be around. I did not want to be with people, but I did not want to be alone. Every little thing caused me to react.

I would go to bed as early as 7:30 in the evening, and then get up every hour or so to go to the bathroom. In the morning, I would shower, dress and sleep again until my husband was ready for the day. Bronchitis set in, and it would not go away! I went to my doctor and he suggested asthma might be part of the problem. Tested for asthma, I was not able to pass the regular breathing part of that test. I was then referred to a Respirologist who ordered an echocardiogram and then referred me to a neurologist who specialized in sleep disorders. Although not officially diagnosed yet, I knew I had sleep apnea, but never dreamed it would cause such symptoms.

My new sleep doctor spent a lot of time talking with me. We discussed a sleep study and when I inquired about the sleep lab, he told me it had no windows! Being very claustrophobic, I had to see a psychologist before the sleep study to prepare to deal with the anxiety. I met with the sleep lab technician to try on CPAP masks so I knew what I would be faced with. The entire sleep lab staff was kind and patient and did everything in their power to make this easy for me.

The first night of the sleep study certainly showed why I was in such a miserable condition! It revealed 108 apneas per hour, my oxygen levels dipped to 56% and my heart was palpitating. My apnea was so severe, my second study was done on the following night. Then the doctor sent me home with CPAP, set at a pressure of 14, to begin treatment. Within a very short time, I began feeling better and better!

My story does not end there. Because of the heart arrhythmia during the sleep study, I was referred to a cardiologist. The stress test showed no major problems. The echocardiogram showed a lot of pressure on the heart. I had to wear a heart monitor for twenty-four hours. I remember waking at 5:00AM to go to the bathroom with the CPAP machine on and the heart monitor hanging around my neck. When I returned to bed, I decided not to put on the CPAP mask back on. That was the last time I have not worn my mask when in bed!

That day, husband and I attended a wedding and between the ceremony and reception, we called home to check on our girls. They were quite panicked. My cardiologist had called and left word that I was to get to the hospital ASAP! In the emergency room, the nurse explained that the heart monitor showed my heart had stopped for 6.6 seconds shortly after 5:00AM…the same time I had gotten up to use the bathroom and returned to bed without using CPAP! I was admitted to the hospital immediately and now am the proud owner of a pacemaker.

I feel better now than I have felt in a long, long time. We are all so thankful for my outstanding team of doctors and health care professionals that the Lord has blessed me with. I am thankful, too, for supportive friends and family who put up with me when I was at my worst! At age 49, I certainly am glad my health is restored. Since receiving my CPAP, I have referred two friends to the neurologist and they were both diagnosed with sleep apnea. Life is good now, and when things are hectic and something goes wrong in our family, you can often hear us say, "thank God for CPAP!"

Mike's Sleep Apnea Story

"SLEEPY TEACHER WAKES UP TO SLEEP APNEA"

I Had All the Symptoms

There I was: male, 50ish, 50 pounds overweight, size 18-1/2 neck. I had high blood pressure and acid reflux with heartburn. My wife said not only did I snore like a hog, I choked, gasped, snorted and gurgled, and then would suddenly quit it all until I started again with a choking gasp. She also complained that I tossed and turned and kicked all night.

For years I had been getting sleepier and sleepier. I went to bed early, but woke up the next morning feeling dragged out and unrested. I used to sit on the edge of the bed in the morning and count the hours till I could take a nap. I fell asleep at work, and I am a teacher. I had 32 beady little pairs of eyes just waiting for me to nod off! I fell asleep during the 5 o’clock news. I dragged off to bed at 8:30 or 9:00 at night and woke up the next morning to start the whole thing all over.

I could not drive any distance in the car without having to pull over and let my wife drive while I went to sleep. My wife claimed that I was irritable and that I had occasional bouts of depression. But the most telling symptom of all was that I totally denied that I had any sort of sleep disorder.

I thought it must be the medication I was taking. I searched the net for information on my pills, to figure out which one was making me drowsy. Meantime, my wife, being wiser and more realistic, was using the search engines to look for sleep, then sleep disorder, and finally narrowing down her search to sleep apnea. She found many wonderful web sites, including this one, which simply confirmed her suspicions. She even downloaded an audio file of an apnea patient snoring, which she played for me and told me that it sounded exactly like I did.

Seeing the Doctor

So I finally gave in to her and agreed, reluctantly, to mention the sleepiness to my doctor. I still hoped he would identify it as a side effect of medications. Fortunately, my physician is a wise and well-informed doctor, and he immediately referred me to an accredited sleep specialist in our town.

The sleep specialist gave me an appointment and asked me to bring my wife along. On arrival there, we were both given checklists to complete. I was blithely going down my list, making a check mark here and there, when I glanced over to see my wife occupied with making one big black X after another on her form. Words ensued, and when the doctor got the forms mine was a little more realistic than it originally was! The doctor looked at the forms, checked my nose and throat, and promptly scheduled me for a sleep study.

Other pages on this web site describe the sleep study. I will just say that it was neither painful nor uncomfortable, not really even inconvenient. The tech was very good about explaining what was happening to me. She told me that if I met the criteria in the first part of the study they would put me on a CPAP for the second part and determine the proper setting.

Well, to make a long story short, my study showed an Apnea-Hypopnea index of 105 and a blood oxygen saturation of 75%! I did get the mask for the second part of the night and they titrated it at 14 cm of water pressure for my optimum pressure. When I met with the sleep doctor, he translated this very simply for me: severe obstructive sleep apnea and a dire need for immediate CPAP usage!

Adjusting to CPAP

Fortunately my Blue Cross insurance was very co-operative, and a very nice respiratory tech fitted me with a Sullivan 5 CPAP and a Mirage mask with a cold-water passover humidifier, since I had a history of nose bleeds. He spent a long time explaining how to use and care for it. Initially the doctor prescribed 10 cm and planned to raise it if I adjusted well. Eventually he raised it to 14 cm.

I had no trouble with the CPAP in the sleep study, and I adjusted to CPAP use from the very first night at home. I did experience a little dryness and congestion, but the doctor prescribed Nasonex and that helped. The noise of the machine was minimal, and my wife said she vastly preferred it to my snoring. From the very first night, the snoring quit almost entirely, and my wife reported I did not toss and turn and kick nearly so much.

Feeling Better!

It took a little longer for me to notice results, but gradually over the next few weeks I found that I could now wake up in the morning feeling refreshed, that I could make it through the school day without nodding off, and that I could stay up a lot later in the evening. I was watching TV programs that had always been too late for me before! I also was able to drive for hours without scaring my passengers or myself. In addition I found that my daily blood pressure readings were in a whole new range. I was averaging 10 to 15 points below where I was before. After about a month on CPAP, it also dawned on me that I was no longer having the violent attacks of acid reflux heartburn that I had suffered for many years. I have not had a single reflux incident since starting CPAP! Click here for more on Reflux and Sleep Apnea.

I have now (September 2001) been on my CPAP for 1 year! Everything is great! My whole lifestyle has changed in a positive manner. I feel vastly better than I have for years. My wife is totally delighted, and says not only does she not have to put up with the snoring any longer, but my bouts of irritability and depression are gone too! In fact she has practically become the poster girl for sleep studies, and has gotten two of her friends to nag their husbands into sleep studies and both husbands are on CPAP now! The sleep study is truly the best thing a doctor has ever done for me.

Tracy's Sleep Apnea Story

I believe, now, that I was born with obstructive Sleep Apnea (OSA). It just took 35 years to figure it out!

My childhood memories are wonderful, but I now know there were clues to my eventually developing OSA: a short, thick neck, mouth breathing, snoring, and an obese father who snored loudly. Sleep apnea is hereditary. I suspect more than one of my three brothers also has sleep apnea, but none have been tested. I had never heard of sleep apnea nor any sleep disorder prior to diagnosis in 1989 at the age of 35. My interest in sharing my story is twofold: (1) to help others diagnosed with OSA and (2) to create OSA awareness in both the public and medical communities in an effort to promote accurate diagnosis and treatment.

The problem begins…

Never an obese child, I began gaining weight shortly after my marriage at age 19. I weighed 120 pounds then. The weight came on at the rate of 20-30 pounds the first year. Two years later I became pregnant with my first child and at delivery by C-section I topped the scales at 200 pounds. By this time in my life, I was the proud owner of a florist shop. I remember many days where I could not get through the day without napping in my store. More than one customer found me snoring loudly in the back room! My business was open 6 days a week and the 7th day was spent cleaning and preparing for the next week to begin. I chalked it up to working too hard. By now, I was plagued with daily headaches and was tired all the time. It was at this point that I believe people started thinking of me as being "fat and lazy", a reputation I carried with me for the next 12 years. By the time my second child was born at age 26, my weight had soared to 230 pounds. As hard as I tried, I was unable to lose weight. I found myself exhausted all the time. My daily headaches were now termed "migraines". My family doctor and my OB/GYN implored me to lose weight and seemed angry at my inability to do so. I felt they had joined the ranks of those who thought me "fat and lazy". I was beginning to wonder myself. Once confident and self-assured, my thoughts were now of depression and poor self-image. I felt I was an embarrassment to my family.

Attempting to diagnose…

Shortly after the birth of my second child, we moved to a large city. I worked as a florist in several stores but found it increasing difficult to function in any capacity. My weight continued to soar upwards to 260 pounds and I became aware that I was snoring very loudly and very regularly. In an effort to rid myself of my headaches and address my weight problem, I went to an endocrinologist. After running a battery of tests she informed me that my thyroid was normal, I was not diabetic yet, but borderline. She put me in the hospital for further testing. I underwent a CAT scan of the brain, which was within normal limits. To address the snoring, I saw an ENT, who found a deviated septum from a childhood broken nose, but that was not a major issue. The OB/GYN diagnosed polycystic ovaries and informed me that the production of too many male hormones must certainly be causing my weight gain. Since my family was complete with 2 children, he recommended a complete hysterectomy. This would eliminate any chance for cancer (which runs in my family); and also, he said, I would finally be able to lose weight. Hallelujah, finally a reason for the weight gain and inability to lose weight! I was thrilled and eagerly scheduled myself for a complete hysterectomy at the age of 32. Unfortunately, all the surgery did was throw me into menopause and the scale kept creeping up. Depression really set in now.

Life is almost unbearable…

A year or so later we moved to a small town in Florida. My children were now in grade school and I spent most of my day in bed. When I woke in the morning, my children had already fed themselves breakfast and waited outside for the school bus. They were accustomed to fending for themselves. I would normally waken between 9 and 10 in the morning feeling sleepy. I always woke with a whopper of a headache. Since I no longer worked, I rarely got dressed. I "lived" in my bathrobe. When they returned from school they usually found me in bed napping. Mom was ALWAYS sleeping. It seemed all I could do was sleep and eat. My weight hovered just below 300 pounds. I was embarrassed to be seen in public. Although my dear husband and children never said a word about my weight, I felt they must be terribly ashamed of me. Depression, exhaustion, loss of memory and inability to concentrate ruled my life. On a good day, I would dress and drive to my children’s school to volunteer as a room mother. More than once, I caught myself falling asleep at the wheel of my car. Even my love for volunteer work in my community had become a chore. It took great effort to keep appointments. Heavy make-up hid dark circles under my eyes. I became good at "appearing" to be alert. I could smile on cue. No one knew how bad I felt. I was aware that I breathed heavily during the day and even made snoring noises. At night, my snoring was so bad, the grunting, gasping noises would actually wake me up. My snoring had become a family joke. I could wake the dead. I wanted to die. My self-esteem was at an all time low. Fat and lazy, that was I! Once an active, happy person, I was now deep in depression and suicidal.

Crisis and diagnosis, finally…

Another year passed and I woke one morning with the worst headache of my life. My head felt like it would explode. My vision was blurred and my whole right side was tingling and numb. I could not get my husband on the phone, so decided to try to drive myself to a neurologist’s office, as I was sure I was having a stroke. Upon examination, the doctor quickly surmised that rather than a stroke; I appeared to have the symptoms of severe sleep deprivation. He referred me to a respirologist who immediately put me in a sleep lab. I was diagnosed with "profoundly severe obstructive sleep apnea with significant desaturations". It was recorded that I experienced 564 apneas and hypopneas with an apnea and hypopnea index of 96.4 events per hour. My heart rate was recorded at 41. My oxygen saturation level dipped to 50 (normal is 90-100, preferably upper 90s). Upon this diagnosis and discussion of the severity of my situation, it was suggested I undergo UPPP. I did not ask questions, rather did what I was told by my doctor. I was afraid for my life. I had never heard of sleep apnea. The surgery was unpleasant, both painful and expensive. Post-surgery, I returned to the sleep lab for another overnight study. The results were as bad as the first study. No improvement, the surgery was a failure. It was also suggested a radical weight loss program was in order and I was approved to begin the Opti-Fast program, which consists of a liquid only fasting regime monitored closely by doctors. The diet program lasted six months; with three months of fasting and then slowly introducing small amounts of foods over the next three months. I participated in this program twice, back-to-back meaning I ate no solid food for six months. I lost almost 100 pounds. Returning to the sleep lab for yet another study revealed slight improvement, but still a diagnosis of severe obstructive sleep apnea. I was still experiencing frightening and significant oxygen desaturation levels.

Difficulty coping with CPAP…

All the while I had been trying to be compliant on CPAP with oxygen. I spent the better part of the first year after diagnosis on CPAP. I was never able to tolerate it completely. My initial pressure setting was in the 9-11 range. Although not claustrophobic, the high pressure left me feeling a sensation of suffocation and choking. I was never able to keep the mask on for more than a few hours per night. My doctor, disappointed in my non-compliance with CPAP informed me my only other option was a tracheotomy. Without it, I would be dead in five years or less, probably sooner than later. A happily married mother of two young children, I did not want to die, but I felt like I was. I wrote a "goodbye" letter to each of my children and my husband and placed them in sealed envelopes and put them in a special place where I knew they would be found when I died. I was certain the end was near.

A second opinion improves things…

Seeking another opinion hundreds of miles from home, I underwent another sleep study and an MSLT. The results confirmed my severe OSA condition and ruled out Narcolepsy. My RDI was now 108. However, this new group of doctors informed me that UPPP was unnecessary surgery. Studies had already shown it does not correct OSA. They also suggested that the fasting liquid diet that allowed me to lose almost 100 pounds was an unhealthy way to lose weight and my metabolism would suffer for it for years to come. It did! As hard as I tried, the weight started creeping back up. Over the next year I gained back 40 of those precious pounds. What these wonderful new doctors did do was introduce me to a new product on the market…BiPAP (Bi-level positive airway pressure). I believe it saved my life. The difference between CPAP and BiPAP is that upon exhalation, the pressure decreases significantly, allowing the patient to exhale easier. No more suffocation and choking. I was immediately able to tolerate BiPAP and experienced the first good sleep I had had in probably ten or fifteen years.

BiPAP works!

Within a few weeks of BiPAP use, my life returned to normal. My husband and children were thrilled to "have me back". My daily headaches disappeared and I no longer required daytime naps. I awoke refreshed and happy. Depression gave way to a new exuberant attitude. I was able to return to work, I was able to return to life. It was like a miracle to me. Not one day has passed that I have not gladly used the BiPAP. I can’t imagine life without it. Now, it's a wonderful life!… Over the years, I have voluntarily returned to the sleep lab every few years to monitor my condition. Each time my pressures have been increased slightly to their present setting of 20-11 (20 on inhalation, 11 on exhalation). I still have occasional headaches; I sometimes have difficulty concentrating; and my memory of the 10 years prior to diagnosis is not good. But all this is a small price to pay for the wonderful life I now live thanks to a proper diagnosis and treatment.

 

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