User accounts of their experience with sleep disorders.

Sleep Apnea Charlie - Sucess Story Doug - Sucess Story Tal - Multiple health probs Julian - Sucess Story Vic - Sucess Story, Tracheotomy Do Bee - Considered surgery but stuck with CPAP Bob Narcolepsy Ali Jane - The road to diagnosis Miscellaneous or Combined Disorders Mike - Obstructive & Central Apnea, DSPS, surgery & Bi-PAP Insomnia RLS / PLMD Delayed Sleep Phase Syndrome

If you would like to submit your own please mail to sleepdisorders@softhome.net

Posted by Bob

My Sleep Apnea story…. So far

I was sitting in my doctor’s waiting room a few weeks ago and passing the time by looking through various health related leaflets. When I read the one about Sleep Apnea I realised that almost all the symptoms applied to me. After talking to my doctor he referred me to a specialist the following week.

The specialist told me that there was nothing wrong with me and treated me as though I was trying to con him in some way. ‘OK, you’re the expert’ I said. He told me that ‘to be on the safe side’, I should attend a ‘Sleep Clinic’ the following week.

A couple of weeks after the clinic, I went to see him for the results. Without any embarrassment, he told me that I had ‘profound’ Sleep Apnea and had stopped breathing 68 times an hour during the clinic. He also told me that I ‘look a lot healthier than I should’. Given that he had failed in his expert diagnosis in the first place, I could not help but think ‘what does he know’. Not a very good start.

The specialist is in a Private Hospital whereas I am an Age Pensioner dependant on Medicare. Within a few days I had a CPAP machine at home for a month long trial. I could not get used to it and experimented with different (‘Mirage’) masks and a humidifier.

The trouble was that I just could not sleep with a mask. I would lie awake for two or three hours, take off the mask and fall asleep almost instantly. If I did manage to sleep with the mask on, I would either tear off the mask in my sleep or wake up in a panic with a feeling of suffocation. After a week or so I realised that I would have to dispense with the mask if I wanted to sleep at all.

After a month, I had used it only every other day for only a couple of hours. Most days I would sleep for some hours, but wake every 15 minutes or so and get up feeling tired. I went to see the specialist and suggested Nasal Pillows may be the answer but, even though they were developed here in Australia, are (apparently) not available to Medicare patients.

He decided to put me in hospital for a week while they could evaluate my interaction with the CPAP machine. The first night I was hooked up to a machine with a standard ‘Mirage’ full-face mask and given a Temazipam to start me off. I slept for one hour and was wide-awake for two. Eventually I dozed fitfully for a few hours and woke feeling my usual tired self.

The following night I was given a Temazipam to start me off (which lasted for two hours this time) and another a couple of hours later. This time I slept for about five hours but not deep REM sleep. It was decided to send me home and try the CPAP there, given the ‘success’ of the hospital experience.

I now have a CPAP machine, a humidifier and a ‘Mirage’ full-face mask at home on loan for a month. I was also prescribed some Temazipam. So far it has not been a success. I am essentially back where I started and am having doubts whether it will ever work for me.

Sometimes I can be watching TV and my breath becomes shallower and shallower, and I find myself catching my breath. I would assume that this is something like what happens when I am asleep. When I wear a mask and experience this, shouldn’t the airflow force me to breathe? or does the air just flow in and out of the mask? It certainly feels that way. When I consciously breathe, I stay awake. Are Nasal Pillows really the answer for me?

Bob

Posted by Doug

After having being diagnosed as being OSA, i already had the laser operation at the back of my throat about ten years ago for my snoring, which didn't help anymore after six months.

I went for sleep testing, that was fun i looked like a Christmas tree by the time they were finished lol.

I have been on my resmed cpap machine for about three months now, and the change in me and my attitude ( not being a cranky git anymore LOL ) is nothing short of a miracle.

It's amazing now being able to get a good nights sleep is fantastic, i would recommend it to anyone to go and see their doctor or local gp if they feel they are not sleeping to ask to be put on some form of sleep study, i will be visiting the newsgroup regularly for hint & tips and just a general chat.

Posted by Charlie

The best that I can tell, I came down with OSA in late 1995. The problem that I had was I’d drift off to sleep in long, boring meetings. At the time, I was on some blood pressure medication that results in sleepiness for some patients. That got the blame… and my co-workers were used to having to nudge me from time to time.

I decided “enough was enough” in 1997 and I went to a cardiologist to see if he could come up with something that worked better. He did, but I was still didn’t feel 100% up to normal.

I visited my parents in July 1998. My mother was listening to me sleep on the sofa Sunday afternoon. She knew a bit about sleep apnea, and she noted that my breathing was starting and stopping. She insisted that I see a doctor as soon as I got back home.

I got in two days later, and the doctor decided to order a sleep study. It was about a week before that got set up. Two weeks later, we got the results: my breathing stopped an average of 87 times an hour, one time for 56.5 seconds! After that, things moved very quickly. The doctor faxed the results off to my insurance, and they called back within minutes and told them that my doctor had the go-ahead to put me on CPAP if it worked. The next sleep lab opening was two days later, and my doctor gave them the OK to put me on CPAP if it worked during the titration. It worked during the titration, and they had a CPAP ready to send home… so I came home, CPAP in hand.

The worst thing about being on CPAP is that all my medication worked reasonably well pre-CPAP. However, it wasn’t right at all for a patient with treated sleep apnea. Untreated sleep apnea can result in both depression and high blood pressure, and I was being treated for both. It took a while to work through all the details, but my doctors were unanimous: “This is happening because your body responds differently now. However, you STAY on CPAP and we’ll adjust your medications!” I knew that I felt better, and I hung in there until we figured out what medications I should be taking post-CPAP.

Posted by Tal -

I was diagnosed with Sleep Apnea in 1999 although I suspect I have been suffering from it for 10 years or so. I don't fit into the usual profile of a person suffering from Sleep Apnea because I am not excessively over weight, I rarely snore (and usually only quietly), I'm not male, and I was diagnosed in my 20s. I was diagnosed after having a Sleep Study done in order to try and rule out any sleep disorders that could be causing my symptoms of fatigue and memory and concentration problems.. On average, I have 26 apnea episodes an hour.

I underwent a three week CPAP trial but didn't feel any better. After visiting with my doctor again, I was told "CPAP obviously isn't going to work for you, sorry, there's nothing else we can do". I was so disappointed. I had been suffering from debilitating fatigue for four years and I thought that finally, I'd found out why, and finally, I was going to get treated and feel better!

It wasn't until some time later, after doing some research and finding out more about sleep apnea and treatment that I became aware that three weeks is no where near long enough to know if you are going to get any benefit from CPAP, true, some people undergo an instant "recovery" the first day they use a CPAP machine to treat apnea, but, for numerous others, it takes many weeks, sometimes even several months, before you start to see any benefit. I thought about my situation and my other health problems and it made so much sense to me that my body wasn't going to be instantly better, just because I was finally able to sleep properly, my body had a lot of healing to do and three weeks wasn't long enough to do that. I also discovered that the long term side effects of leaving sleep apnea untreated were serious problems like heart disease and stroke. I didn't want that to happen.

I eventually asked my regular doctor to refer me to another sleep specialist. On visiting with the new doc, I was informed that I would have to undergo another sleep study as the results that had been forwarded to him weren't comprehensive enough for him. I was put on a twelve month waiting list. It had already been a year since I had been diagnosed, I didn't want to wait another year so I asked to be put on the cancellation list so I had some hope of getting in earlier. As it turned out, I got a call urging me to take the cancellation...two days before my brother's wedding. It was a three hour trip to the hospital. I had to drive myself there. I was terrified, I hadn't driven outside my own town in years because of my inability to concentrate and increased chance of falling asleep at the wheel. I was exhausted by the time I got to the hospital. I thought this would be a good thing. I thought this would make me go to sleep, but boy was I wrong, any other night, I can sleep within 15 minutes of going to bed but I barely slept the whole night.... I had a Multiple Sleep Latency Test the next day so I had to spend the whole day in the hospital, trying to sleep on and off I was so dead tired, but I couldn't sleep! Normally, I'd have fallen asleep every time I lay down....I think my body was way over-tired and not responding well to the different surroundings and stress of everything that was going on....it rebelled!

About a month later, I went back to see the doctor for my results. He said "well, you slept 52% of the time and there's nothing at all wrong with your sleep" I wanted to yell at him.... I KNOW I didn't sleep that long, it was impossible. I know that most people don't realise just how much they HAVE slept during a sleep study, but I had undergone a sleep study and a CPAP titration before, and both times, I correctly estimated the amount of time I had slept. (I didn't sleep well on either of those occasions either). I told the doc....hey, all I want is a chance to use a CPAP machine, all I want is a chance to get my life back....but my pleading for him to prescribe a CPAP machine fell on deaf ears. I told him, how is it possible that on two occassions tests showed I had apnea, and now your test says I don't, I believe in miracles, but I think if I'd been suddenly cured, I'd know about it.

I went home very discouraged. After some time I decided to "bite the bullet" and return to the original sleep doctor I saw to try and get him to approve me for government assistance to purchase a CPAP machine. If I'd had the ability, I would have just gone and bought one in the first place. The visit paid off and the appropriate forms were filled in but it was about another year before I was finally able to get the machine!

I don't have any trouble wearing it - I guess I'm so tired I couldn't care less about having something on my face. After the first three months, I had my pressure raised from 6.5cm to 8cm because I hadn't seen any improvements and I "felt" like I was still having apneas although there was no way to confirm or disprove it. Now, after the increase to 8cm, I am still seeing no improvement. It gets so discouraging at times, I just want my life back, I want the energy to be able to do all the things I miss out on now. I'm not about to give up though, even if I'm not feeling any improvement yet, at least I am probably preventing long term damage from leaving things as they were. I'm currently considering another pressure increase.

Update: 18 Sept 2003

I have been diagnosed with Arnold Chiari Malformation since writing the above. Sleep Apnea is a common symptom. I am considering the possiblity of undergoing surgery to correct this problem which causes many symptoms and I will be interested to see what it does where the apnea is concerned. I am pretty sure now that the ACM is the reason I haven't had any improvement in the way I'm feeling since CPAP therapy - there are just too many other problems my body is trying to cope with.

Tal

Posted by Julian

I'm in my 80's, a retired Chief Executive Officer, accustomed to having my own way. I went to the sleep center at our local hospital, was put to bed, and then, awakened in the middle of the night by an attendant putting a mask on my face. After uttering a few curses, I allowed her to put the mask on me. Sometime later, I could not stand the thing, shouted for the nurse, and they talked me into trying another mask. The same thing happened: this time, I called, "Take the damned thing off me, I'm going home!"

Once again, they calmed me, said, "O. K., no more mask, use the oxygen cannula, and go back to sleep." I agreed, slept a few more hours and went home.

The following day, I spoke with my internist and my pulmonologist, both of whom told me that I had obstructive sleep apnea, and if I wanted to keep from having a heart attack or stroke, I must use a CPAP. They sold me.

I've been using a CPAP with a Breeze mask for two months now. Still don't like it, but wear the mask connected to the CPAP whenever I sleep, at night or napping. There are worse things.

Julian - California, USA

Posted by Vic

I've had undiagnosed Apnea for a long time, perhaps 10+ years. It finally came out that I stopped breathing whilst sleeping during a week-long canoe trip in the Boundary Waters. The other adult in our group (a world-class snore machine in his own right) noticed that there were times that I stopped breathing for as long as a minute. This was in 2000. My Primary Care Physician (PCP), at that time, when informed said it was not to worry- it may have been a result of "location, allergies, position, not being in a bed" and a bunch of other excuses. Basically the HMO was not willing to pay for the diagnostic tests required then.

Fast forward a couple of years (insert wavy lines for time travel here)... Experiencing what I thought was a heart attack (it wasn't) I went to the nearest hospital... My blood pressure is now at a whopping 210/115 WITH THE MEDS. Instant invitation to stay in the coronary care unit for observation and treatment to get the pressure down to a level that would not push what little hair I have left out of my head. For those that have never had the pleasure of a week in CCU- you have wires, tubes, and assorted other medical stuff attached to virtually every inch of your body. I even had the "machine that goes 'PING'" somewhere in there. They also have a video camera watching you- or rather a nurse watching and listening to the monitor that is attached to the camera aimed at you (don't scratch there- they can see you).

During my stay the nurse noticed, and documented the events- breathing stopping for 60 to 90 seconds, snoring punctuated with gasps, blood-oxygen levels going down to 75% or lower. With the blood pressure finally under better control, the next step was to have my new PCP write the order for a sleep test. WIth the nurse's documentation as "incentive" the HMO finally approved the sleep study, done in Nov of 2001. I got a BiPAP set for 20/15 within a month.

Compliance was easy- I had a lot of help, mostly from the usenet newsgroup, with adjusting the mask, learning about humidifiers, pressure levels (not psi, really?), how to hang a hose, and in general life with a machine for a bed partner (no, that was NOT a shot at my long-suffering wife). So far, so good- almost. The years of being untreated and undiagnosed brought on a whole host of other problems now coming to the surface... Congestive heart disease, kidney problems, weight gain despite diets, slow metabolic rate, and ever-increasing blood pressure levels.

Through my own research and reading I was able to discover the direct link between the health issues I was having and the (untreated) Apnea events. The pressure I was titrated at (20/15) was not working well enough, and my blood O2 levels were dropping during the day- still not enough air, and I did not have access to anything that would provide higher pressures at night.

More research and some weeks later, I decided that were I to continue looking at the grass from the top down, I would need to increase the amount of air entering my lungs. I had a couple of choices- neither of them pleasant. I could carry an air tank and have a constant 'PAP' flow, I could carry an O2 tank... or worse- BOTH. I could have added O2 to the BiPAP for night use I convinced my PCP that a referral top an ENT would be a good idea, and had a consult- he said that UPPP was NOT a viable option for OSA, and that it was a "barbaric procedure that should be outlawed in this day and age" (yes- his words almost verbatim). I told him about my research on the trach, and he agreed that with the structure of my airway a trach would be an effective method of treatment.

In Nov of 2002, I had my throat slit open and a hard plastic tube inserted into the hole. I was trached.

Yes- it was difficult getting used to. Yes, it's a pain-in-the-neck, literally and figuratively. Yes, people stare and ask about the tube, and yes- it has changed my life. I can breath again. My blood pressure is getting better. I still have CHD, some kidney problems and other issues DIRECTLY RELATED TO BEING UNTREATED for so long. Some will get better, some will not; these are MY limits and we ALL live with limitations.

There are things I'll never be able to do- learn to scuba dive, snorkle, sky-diving. There are things I had to give up- whitewater kayaking, long canoe trips, swimming. The trade-off was giving up these few things to a tube in the throat. I gave my kayak to my son. I'll never go sky-diving, I'm terrified of heights, and why jump out of a perfectly good airplane anyway? Scuba? I live next to a boring (and dark) lake- what's to see down there?

Posted by Do Bee (March 2001)

A little background to get this message started so stay with me for this: Beginning last April, after 40 years of looking, feeling, and acting teen years younger than my age and feeling that I was impervious to the ills that afflict all of you old folks out there , I was rudely jolted by.. what they would call in the stock market.. a correction! The free ride was over! I developed a swallowing problem that became so severe that I had to be taken to the hospital from my job to have food dislodged from my oesophagus. Shortly afterwards, and with no warning, I developed Tinnitus (a constant, high-pitched ringing in my ear). I contracted the flu, walking pneumonia, and VD (not necessarily in that order) within the span of the following few months. I began seeing a psychiatrist because of this seemingly endless string of woes. It was there that I was diagnosed with ADD! WHAT NEXT! Well.... she recommended I have a sleep study done to address a sleeping problem I had suddenly developed. During the sleep study, it was discovered that I have sleep apnea. About a month later, an MRI I had done to rule out neurological cause for my Tinnitus revealed that I had a brain tumor!!! AHHH! (And to think that I still smile and say thank you when the nurse gives me my weekly allergy shots!)

Okay, I said all of that to say this: I was shocked and dismayed to discover that the best that medical technology has to offer for sleep apnea sufferers is CPAP. A thing that you wear on your head! Why not just use leaches to bleed out the evil spirits while they are at it!! I was certain that there just has to be, there just HAS to be something better than this! I saw a second ENT who suggested a kind of surgery that I can only describe as horrifying! To paraphrase his description, 'we'll remove parts of your upper palette, adjust your nose, remove your tonsils, and some of your uvula. It will be very painful. You'll have to miss about a week of work. If the surgery goes wrong, you could develop a hole in the cartilage of your nose. You could also wind up with a voice that sounds like your talking through your nose. AND... it's only about 50% effective.' I RAN from the place! I am about to visit a third ENT about Somnoplasty. I have to say at this point that I don't feel very confident about this procedure either.

Okay... NOW is when I get to the meat of this message (Thank God). I have relied on this newsgroup throughout all of this (at least where the apnea and sleeping difficulties are concerned), mostly reading what others have to say about their experiences with all of these different treatments. Testimonies about various kinds of surgery, those that I've mentioned and others, ranged from moderately successful to down right scary. However, while I had completely outruled the archaic notion of strapping myself to an air machine before going to bed, all that I could read about CPAP was positive. Comments are consistently like: I have boundless energy, I don't feel tired anymore, I wake up refreshed, I have vivid dreams, my quality of life has improved, my quality of sex has improved. And it is completely reversible; if you don't like it, you can just go back to where you were before. It has now occurred to me that I have been missing the forest for the trees. My resistance to the CPAP, which I guess is normal in the beginning, prevented me from seeing that this option is clearly the way to go. So.. my fingers are coiling up at the very thought of typing these words... I am going to schedule a sleep study to try out the CPAP. Hey, the worst that can happen is that I'll decide I don't like it and keep waiting for something better to come along.

Thanx to everyone who has offered their comments on this subject, especially those who are still reading this lengthy epistle! I'll continue to post my thoughts and experiences as they occur. Who knows, maybe the next time you hear from me I will have come up with a cure my own damn self!!

Tod (Do Bee)

Posted by Ali Jane (28 Jan 03)

Narcolepsy is something I have been dealing with my entire life. In grade 1, my teacher phoned my mother and told her I was asleep and they couldn't wake me up. Mom told her I had had a full night of sleep, and she was invited to the school to see it for herself. I have no recollection of this, having been so young at the time, but my mom described me as catatonic. I was sitting straight up at my desk, my hand propping my head up, and sound asleep. I was completely oblivious to my surroundings, and I just sat there. Nobody at the school had ever seen this before, and my teachers at the time just accepted that I had this oddity about me. I was very smart and a good student, so they didn't worry about it.

Grade 5, I had a teacher say nasty things about me to his class when I wasn't around. He was my gym teacher, and he called me fat and lazy and good for nothing because I was no good in gym class. That year was hell for me, because the entire grade 5 class took it upon themselves to follow his lead. I had zero self-esteem, my mom was sick at home and I had no support family-wise. I was unable to sleep through the night and a counsellor put the problem down to stress and depression.

The problems continued in high school, where my teachers frequently said "You're a great student, but you need to participate more." The truth is, there were many classes that I barely remembered and although I was considered gifted, I stayed in regular classes because I didn't have the energy to keep up in the gifted classes.

As the end of school neared, there was more pressure for me to take on after-school activities. My teachers would get upset because I would turn them down for the school musical and other such things, and my parents were also putting pressure on me. Near the end of school, I had a nervous breakdown and had to take some time off before final exams. That was the only year I failed any exams.

After graduation I took a job in a hair salon. I was a zombie, and only lasted 2 months. I thought my parents would kill me for losing my job as I was still living with them, but they decided to leave me alone provided I worked part-time. Over the next year I went through four different jobs.

I finally got a job in an office that I managed to work up from part-time to full-time. I still had my sleepy times, but I was able to do my job well enough to satisfy my employers. After 2 years, in the summer of 2000, I managed to move out on my own, which greatly reduced the pressure my parents were putting on me and allowed me to focus my energy on my job.

I took a trip to England that same summer, and was unusually sleepy the whole time. I must have missed three quarters of the trip, because every time I sat down I fell asleep. My teenage hosts thought this was funny, and would slam the brakes on the car just to see my neck flop over and wake me up. My neck hurt and I was frustrated, but there was no way I could keep from falling back to sleep and they would just do it again.

Since then, my sleepiness has been worse than ever. I tried to tell my employers that falling asleep during the day has been a life-long problem. Before I could explain, someone always cut me off and told me to just go to bed earlier, take a vitamin, or not to party so much. The truth was when I left work I was so tired I could only go home and take a nap. My social life was confined to weekends, and I frequently napped through dinner time so I could stay awake for volunteer activities at night. Over time, I gave up almost all of my volunteer work, as I was no longer able to stay awake for meetings or activities.

I asked my doctor many times to test me and find a solution to my problem. After much urging, He ordered a PSG, which showed I had mild sleep apnea. I had my tonsils removed as they were abnormally large, and I was finally able to sleep through the night. I was still just as sleepy though, and I even went so far as to tell my doctor to run every blood test he could, whether he thought it necessary or not. Every test came back normal. One day I asked him if I could have narcolepsy, and he just waved it off without asking me if I had any symptoms. Not knowing anything about the disease, I just blindly trusted his judgment and didn't ask any more questions about it.

A few months ago my boss told me to go to the doctor and just get some "pep pills". I got very upset and started searching the web for information on sleep disorders. I came across a web site about narcolepsy, and I cried when I read it. Everything these people were writing about life with narcolepsy matched my own experience. I didn't have cataplexy, but I have had everything else to some degree over the years. I found another web site listing names of Canadian sleep specialists, and I e-mailed the first one on the list. Was I ever lucky! He wrote me back within hours, saying my symptoms sound serious and that he would test me as soon as possible.

A few weeks later, I met the specialist for the first time. I really liked him right away; he really listened to what I had to say and took my input very seriously. I was back for a PSG and MSLT less than 2 weeks later.

My employers had agreed to keep me on at work until the diagnosis was made. However, on January 9, 2003 I was let go from my job because I was simply not able to do it any more. I was making far too many mistakes, falling asleep on my desk, was prone to crying when I was awake, and was just a wreck. I was given seven weeks' pay and sent home.

I have one more week until I get my diagnosis from the sleep specialist. I have spent the last two weeks filling out applications for disability pensions and employment insurance. I am worried about paying my rent, about how the drugs will affect me once I begin treatment, and about my general health. I have been steadily gaining weight over the past couple of years, and since I stopped working I have been attempting to get some exercise but the lure to sleep is often too strong to fight. I have found a support group in my area and hope that will ease some of my fears. Now I have nothing to do except wait for the diagnosis, the treatment, the government red tape, and hopefully some degree of recovery that may eventually allow me to work again and reclaim my life.

Posted by Mike (28 Jan 03)