One aspect of "living with OSA" is the issue of sleeping away from your home. Vacation times, business travel, overnight hospital stays (patient or guest) etc.... can be difficult! Getting teased, made fun of or, worse yet, visually ignored by those that see you in your "masked up" cpap garb is very hurtful. Lots of cpap'ers might just elect to go without their machines for those times that they would be "out in public." I know that I have left my cpap at home several times, just to save myself the dignity of not getting those looks! I have even turned down week-long outings with others for the same reason. I am not willing to go beyond 2 nights without my cpap for any reason. Just not worth it!
living with sleep apnea
kj
Glad you asked.
My Background:
I was disagnosed with OSA in January 2004 after having a year of unexplained fatigue, exhaustion and morning headaches. It took me 3 months to get used to the CPAP machine and mask, through the help of this particular forum.
Living with OSA is not fun. The reason people need this forum is because the doctors and DME's out there (very intelligent people) perscribing the use of the equipment have never even tried to sleep with a machine and mask and cannot answer most of your questions. I am very surprised that these people who are out there treating all of us with OSA do not take the time to try out these products and understand what all of us are going through. (I'm sure if they did I know some of them would come up with an amazing way to style a nose and face piece that would totally eliminate a need to try 5 different styles of masks etc. to eliminate soreness and air leaks)
Question #1 - What's it like living with OSA?
For me, I use the Auto CPAP machine every night and still feel extremely tired every day. (as of 2 years ago I used to be very active with exercise, running, skiing, children, working and now am extremely inactive) I know it is for my health but as a single parent and wanting to get back into the dating area of my life it makes me feel old......yes I know all of you out there will say blah blah blah the person will understand etc. but it still makes me feel old!! I just want to cuddle my head in the pillow and sleep like I always used to. I really miss that!!
Question #2 - How does it effect your personal and professional life?
As far as my professional life, I was in a high stress sales profession and since July of 2005 have taken a leave from work because of my fatigue, foggy brain, memory problems and did not want to make major financial errors for my clients.
For my personal life, I do as much as I can. The person who got up a 7:00 a.m., put on a suit, dropped the kids off to school, then went to work, picked the kids up at 3:30, made dinner, helped with homework and then worked a few more hours is no longer me. (also worked out 3 times a week at the gym)
I now wake up many times a night, get up at 7:20 (exhausted), drive the kids to high school and do whatever I can before picking them up. (walk the dog, read the paper, grocery shop and always search for anything related to OSA because I really think there is something more out there that has not been discovered yet)
I personally think there is some common denominator out there that has activated OSA and hopefully someone is working on it. I'm hoping that just like they found out for all those people that suffered needlessly for years with ulcers (my Dad was one of them) they will find a cure for OSA.
Hope this helps you,
Lisa
Glad you asked.
My Background:
I was disagnosed with OSA in January 2004 after having a year of unexplained fatigue, exhaustion and morning headaches. It took me 3 months to get used to the CPAP machine and mask, through the help of this particular forum.
Living with OSA is not fun. The reason people need this forum is because the doctors and DME's out there (very intelligent people) perscribing the use of the equipment have never even tried to sleep with a machine and mask and cannot answer most of your questions. I am very surprised that these people who are out there treating all of us with OSA do not take the time to try out these products and understand what all of us are going through. (I'm sure if they did I know some of them would come up with an amazing way to style a nose and face piece that would totally eliminate a need to try 5 different styles of masks etc. to eliminate soreness and air leaks)
Question #1 - What's it like living with OSA?
For me, I use the Auto CPAP machine every night and still feel extremely tired every day. (as of 2 years ago I used to be very active with exercise, running, skiing, children, working and now am extremely inactive) I know it is for my health but as a single parent and wanting to get back into the dating area of my life it makes me feel old......yes I know all of you out there will say blah blah blah the person will understand etc. but it still makes me feel old!! I just want to cuddle my head in the pillow and sleep like I always used to. I really miss that!!
Question #2 - How does it effect your personal and professional life?
As far as my professional life, I was in a high stress sales profession and since July of 2005 have taken a leave from work because of my fatigue, foggy brain, memory problems and did not want to make major financial errors for my clients.
For my personal life, I do as much as I can. The person who got up a 7:00 a.m., put on a suit, dropped the kids off to school, then went to work, picked the kids up at 3:30, made dinner, helped with homework and then worked a few more hours is no longer me. (also worked out 3 times a week at the gym)
I now wake up many times a night, get up at 7:20 (exhausted), drive the kids to high school and do whatever I can before picking them up. (walk the dog, read the paper, grocery shop and always search for anything related to OSA because I really think there is something more out there that has not been discovered yet)
I personally think there is some common denominator out there that has activated OSA and hopefully someone is working on it. I'm hoping that just like they found out for all those people that suffered needlessly for years with ulcers (my Dad was one of them) they will find a cure for OSA.
Hope this helps you,
Lisa
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Janelle
If you have been on APAP for nearly 2 years, and are still tired, you definitely need to go visit your Sleep Dr. again. Something is seriously wrong. You could be like me and need something extra to ensure you get the deep restorative sleep or at least something that will KEEP you asleep. Haven't you had any return visits for the Dr. to see how you are progressing?
Hi Janelle
Sorry, I put January 2004, it should be January 2005 since I have been on CPAP.
Two years ago I started feeling extemely tired, morning headaches, etc. The doctor thought depression and put me on some medication for 6 months. I was still very tired so was sent for a sleep study. It took 3 months to get the appointment and then a month and a half for a return visit. I was told I have sleep apnea (29 events an hour). Started on CPAP October 2004 and had trouble with pressure and gave it up. After discovering this forum I found out about the Auto so I paid out of pocket for it with a Mirage FF Mask. This is when I really started treatment (January 2005) It took me about 3 months to get used to. I went back for a second sleep study because I was still very tired. The sleep doctor said that my
apnea events were down to 5 and he was very happy. I told him I was feeling extremely exhausted and he said I should really be fine so he added sleeping pills.
After a month of beening groggy every day along with extreme tiredness I went back to my GP to refer me to a different sleep doctor for a second opinion. At that time my GP changed me to clonazapam instead of the Starnoc which the sleep doctor put me on. I had that sleep study last month and have an appointment December 1 for the results.
Yes, I know there has to be something else going on. The first sleep doc said after my second study that my events were good gave me 5 minutes of his time and I left thinking, yes I should be fine but I wasn't.
The reason I changed doctors was that the first sleep doc never mentioned anything else I should be looking at. It wasn't until I searched this forum that I decided to change sleep docs because of reading of how many people have other things going on along with their sleep apnea.
I am hoping to hear something positive Dec. 1.
Thanks for your interest,
Lisa
Sorry, I put January 2004, it should be January 2005 since I have been on CPAP.
Two years ago I started feeling extemely tired, morning headaches, etc. The doctor thought depression and put me on some medication for 6 months. I was still very tired so was sent for a sleep study. It took 3 months to get the appointment and then a month and a half for a return visit. I was told I have sleep apnea (29 events an hour). Started on CPAP October 2004 and had trouble with pressure and gave it up. After discovering this forum I found out about the Auto so I paid out of pocket for it with a Mirage FF Mask. This is when I really started treatment (January 2005) It took me about 3 months to get used to. I went back for a second sleep study because I was still very tired. The sleep doctor said that my
apnea events were down to 5 and he was very happy. I told him I was feeling extremely exhausted and he said I should really be fine so he added sleeping pills.
After a month of beening groggy every day along with extreme tiredness I went back to my GP to refer me to a different sleep doctor for a second opinion. At that time my GP changed me to clonazapam instead of the Starnoc which the sleep doctor put me on. I had that sleep study last month and have an appointment December 1 for the results.
Yes, I know there has to be something else going on. The first sleep doc said after my second study that my events were good gave me 5 minutes of his time and I left thinking, yes I should be fine but I wasn't.
The reason I changed doctors was that the first sleep doc never mentioned anything else I should be looking at. It wasn't until I searched this forum that I decided to change sleep docs because of reading of how many people have other things going on along with their sleep apnea.
I am hoping to hear something positive Dec. 1.
Thanks for your interest,
Lisa
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Oh 2 breathe
- Posts: 59
- Joined: Sun Sep 18, 2005 5:04 pm
- Location: Ottawa, Ontario
I am heartened by your interest in this subject and wish other doctors were more interested in and better trained about this condition.
One of the issues you could write about is whole issue of differential diagnosis. Because I did not fit the typical profile for sleep apnea (I am in the normal weight range) my doctor did not consider sleep apnea when I presented with a lot of fatigue. We spent many months going through various tests -- blood work to tests for nutritional deficiencies, viruses or endocrine disorders, then two ultra sounds, then an MRI. My doctor wondered if I was depressed, but I did not think I was sad, just extremely tired. I thought maybe I was suffering from burn-out at work. Meanwhile I was doing my own proactive research and came across a web site on sleep disorders. From a survey on sleep apnea I basically diagnosed myself, then presented my survey results to my doctor, who then sent me to a sleep lab for official confirmation of the diagnosis which was severe sleep apnea.
With all the wait times for the various tests the whole diagnostic process took more than a year. Now that I have been on CPAP for almost two months I feel like a whole new person. I just wish I had known sooner and hadn't basically lost a year of my life. I feel especially bad for those whole lose whole decades or even their lives (i.e. heart, stroke, car accidents) because no one diagnosed them properly.
I think doctors need to be more aware that not everyone fits the typical profile (it there even is such a thing) and that the sleep disorder survey needs to be administered as early as possible when looking into fatigue issues in a patient. It is especially important that there be careful differential diagnosis to avoid putting a person on antidepressants they don't need, or even worse, anti-anxiety or sleep medication, which can worsen sleep apnea symptoms. (you can search this site on depression and OSA as we have had some good discussions of these issues here).
If there was better education of G.P.'s and more information available to the public, maybe posters and pamphets in doctors' waiting rooms it would help.
~ OTB
One of the issues you could write about is whole issue of differential diagnosis. Because I did not fit the typical profile for sleep apnea (I am in the normal weight range) my doctor did not consider sleep apnea when I presented with a lot of fatigue. We spent many months going through various tests -- blood work to tests for nutritional deficiencies, viruses or endocrine disorders, then two ultra sounds, then an MRI. My doctor wondered if I was depressed, but I did not think I was sad, just extremely tired. I thought maybe I was suffering from burn-out at work. Meanwhile I was doing my own proactive research and came across a web site on sleep disorders. From a survey on sleep apnea I basically diagnosed myself, then presented my survey results to my doctor, who then sent me to a sleep lab for official confirmation of the diagnosis which was severe sleep apnea.
With all the wait times for the various tests the whole diagnostic process took more than a year. Now that I have been on CPAP for almost two months I feel like a whole new person. I just wish I had known sooner and hadn't basically lost a year of my life. I feel especially bad for those whole lose whole decades or even their lives (i.e. heart, stroke, car accidents) because no one diagnosed them properly.
I think doctors need to be more aware that not everyone fits the typical profile (it there even is such a thing) and that the sleep disorder survey needs to be administered as early as possible when looking into fatigue issues in a patient. It is especially important that there be careful differential diagnosis to avoid putting a person on antidepressants they don't need, or even worse, anti-anxiety or sleep medication, which can worsen sleep apnea symptoms. (you can search this site on depression and OSA as we have had some good discussions of these issues here).
If there was better education of G.P.'s and more information available to the public, maybe posters and pamphets in doctors' waiting rooms it would help.
~ OTB
"The best things in life are nearest: Breath in your nostrils, light in your eyes, flowers at your feet..." ~ Robert Louis Stevenson
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Janelle
The main problem with a GP diagnosing SA is they are taught practically nothing about the condition in med school.
I constantly complained to my GP about fatigue for years, we retested my thyroid and everything was fine. I was driving drowsy and had several near wrecks, but when I DID have a wreck and went in to my GP she immediately sent me to an ENT as an emergency that afternoon, and a few days later I had an appointment with a Sleep Dr. and then a few weeks after that a sleep study and MSLT the next day, when I was falling asleep in anywhere from 30 seconds to 1.5 minutes on all THREE naps. It is very rare for a person to sleep at all in all three naps. During the sleep study, which was supposed to be a split night but wasn't because I wasn't having enough episodes per hour, probably because I was waking up every hour with a full bladder so never got into a deep enough sleep, I still managed to have low desat rates and other problems or I probably wouldn't be on APAP today. It took another 3 weeks for the results and I didn't even see the Dr. but was sent to the DME where I got a rental machine for 2 weeks to check compliance. I told them I really needed a smaller machine as I travel a lot by air, so they were supposed to order me a 420E that would be ready when I brought the other one back. During the compliance I was not getting good treatment, once I got the 420E, a MONTH after I turned in the rental initially--they didn't order my new one until I came back 3 weeks later to do the compliance check--I felt I was getting MUCH better treatment. I think it was just one algorithm versus another. And it was 3 months later before I saw my SD again, and then it was only his NP. After 6 months I finally saw HIM, and he wanted to know why it had been so long since I started treatment. I told him, no one called me.
There are over 30 Sleep Labs in Austin where I had mine done. Now there is one here in Dripping Springs (pop. 1530) a mile away. Obviously, there are a lot of people out there with sleep problems.
I constantly complained to my GP about fatigue for years, we retested my thyroid and everything was fine. I was driving drowsy and had several near wrecks, but when I DID have a wreck and went in to my GP she immediately sent me to an ENT as an emergency that afternoon, and a few days later I had an appointment with a Sleep Dr. and then a few weeks after that a sleep study and MSLT the next day, when I was falling asleep in anywhere from 30 seconds to 1.5 minutes on all THREE naps. It is very rare for a person to sleep at all in all three naps. During the sleep study, which was supposed to be a split night but wasn't because I wasn't having enough episodes per hour, probably because I was waking up every hour with a full bladder so never got into a deep enough sleep, I still managed to have low desat rates and other problems or I probably wouldn't be on APAP today. It took another 3 weeks for the results and I didn't even see the Dr. but was sent to the DME where I got a rental machine for 2 weeks to check compliance. I told them I really needed a smaller machine as I travel a lot by air, so they were supposed to order me a 420E that would be ready when I brought the other one back. During the compliance I was not getting good treatment, once I got the 420E, a MONTH after I turned in the rental initially--they didn't order my new one until I came back 3 weeks later to do the compliance check--I felt I was getting MUCH better treatment. I think it was just one algorithm versus another. And it was 3 months later before I saw my SD again, and then it was only his NP. After 6 months I finally saw HIM, and he wanted to know why it had been so long since I started treatment. I told him, no one called me.
There are over 30 Sleep Labs in Austin where I had mine done. Now there is one here in Dripping Springs (pop. 1530) a mile away. Obviously, there are a lot of people out there with sleep problems.
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sleepybarb
- Posts: 15
- Joined: Sun Sep 18, 2005 10:41 am
Thanks for your interest!
Sleep disorders are likely to be one of the most important and until recently most neglected areas in medicine, so it is great that you are researching this.
Living with the treatment for sleep apnea is easier than living with the consequences of apnea; I think I experienced most of these consequences from extreme daytime sleepiness, insulin resistance to diabetes and an inefficient heart before I requested a sleep study. But if I hadn't raised the subject it is unlikely that my doctor would have. And if I had had to go through my local DME to get equipment I probably would have quit out of frustration and never been treated. I would have been labeled non-compliant and written off.
Instead, I did my homework, got an auto and software so I could monitor AHI and leaks (and titrate my pressures as needed). Tried several masks until finding best fit for my face and sleeping habits. Got over nightmares of hose-like snakes strangling me at night.
Absolutely agree with previous poster that being empowered to monitor this disease and find the most effective treatment was key to being relatively successful (got my AHI from 65-70 down to 1-3). Not all nights are perfect, but many nights and most days are better.
Living with the treatment for sleep apnea is easier than living with the consequences of apnea; I think I experienced most of these consequences from extreme daytime sleepiness, insulin resistance to diabetes and an inefficient heart before I requested a sleep study. But if I hadn't raised the subject it is unlikely that my doctor would have. And if I had had to go through my local DME to get equipment I probably would have quit out of frustration and never been treated. I would have been labeled non-compliant and written off.
Instead, I did my homework, got an auto and software so I could monitor AHI and leaks (and titrate my pressures as needed). Tried several masks until finding best fit for my face and sleeping habits. Got over nightmares of hose-like snakes strangling me at night.
Absolutely agree with previous poster that being empowered to monitor this disease and find the most effective treatment was key to being relatively successful (got my AHI from 65-70 down to 1-3). Not all nights are perfect, but many nights and most days are better.
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Colorado Jan
Nobody mentioned sleep apnea as a possible diagnosis for me although I had complained for YEARS of total fatigue and a feeling of being useless, I was just so bone tired. (And I'm even married to an ENT doc!!--yep, he's in trouble for this little slight!). But I would beg and beg doctors to play with my thyroid meds and tweak them to speed up my metabolism and give me a little energy. No one asked about my sleep. Finally I was asking the question of how much Ibuprofen can one take without damaging the liver or kidneys or something, because I take a huge dose once a day and then once a night for my itchy legs. And ONE doc said...let's talk about these legs of yours? Got diagnosed with Restless Leg syndrome...
This summer I was hospitalized for a hysterectomy and some exploratory surgery thrown in for fun. It was discovered then that my oxygen saturation levels go down to 50 and 60% range every time I sleep. The surgeon shrugged it off and discharged me. I took the bull by the horns and called my primary doc to get a sleep study done. AHI of 85, 77 arousals per hour, and yes indeed, oxygen still in the 50% range. No WONDER I felt brain dead all the time!
So now people are saying to me, well, geez, Jan...you should have gone to the doctor! Well I DID. Over and over and over...Plus I SLEEP with a damn sleep doctor! It is really hard to get people's attention when you say you are "tired" all the time. Even my high insurance rates for multiple speeding tickets and car wrecks didn't raise any flags with anyone. It was just "oh, that silly Jan".
That's life without CPAP. WITH CPAP? My goodness, the first few days I felt like I was on Cocaine or something. I was so alert, it was absolutely WEIRD. 100% turnaround from my previously normal days. I think that's why I went off the deep end and purchased THREE CPAP machines...I'm never going to be without them! Never again! Now I have these productive days like I've never had in the past 20 years! And I don't know what to do with all this TIME! Alert, ready to go TIME on my hands! It is wonderful!
Jan in Colo.
This summer I was hospitalized for a hysterectomy and some exploratory surgery thrown in for fun. It was discovered then that my oxygen saturation levels go down to 50 and 60% range every time I sleep. The surgeon shrugged it off and discharged me. I took the bull by the horns and called my primary doc to get a sleep study done. AHI of 85, 77 arousals per hour, and yes indeed, oxygen still in the 50% range. No WONDER I felt brain dead all the time!
So now people are saying to me, well, geez, Jan...you should have gone to the doctor! Well I DID. Over and over and over...Plus I SLEEP with a damn sleep doctor! It is really hard to get people's attention when you say you are "tired" all the time. Even my high insurance rates for multiple speeding tickets and car wrecks didn't raise any flags with anyone. It was just "oh, that silly Jan".
That's life without CPAP. WITH CPAP? My goodness, the first few days I felt like I was on Cocaine or something. I was so alert, it was absolutely WEIRD. 100% turnaround from my previously normal days. I think that's why I went off the deep end and purchased THREE CPAP machines...I'm never going to be without them! Never again! Now I have these productive days like I've never had in the past 20 years! And I don't know what to do with all this TIME! Alert, ready to go TIME on my hands! It is wonderful!
Jan in Colo.
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Barb (Seattle)
- Posts: 663
- Joined: Wed Aug 03, 2005 6:41 pm
Re: living with sleep apnea
wow...where do I start? With all the sleep studys? Or the millions of visits to the sleep center to get the machine checked, or try to find a solution to my mask problems? Or the surgery (UPPP) I had? Or the dental device I tried? The OPAP that dried my mouth out so much, I could barely get my tongue off the roof of my mouth? Or all the nights I've thrown the mask across the room? (or as far as the hose will allow? Or the times I can't snuggle up to my hubby in the middle of the night because I'll blow air on him and give him frostbite? I've been doing this dance for 8 years, and have yet to find a comfortable solution. So...my last ditch attempt at at LEAST lowering the pressure...I will get as thin as it takes. 50 pounds more...and I'll know some type of result. *crossing fingers*med student wrote:hi, i am a second year medical student and am currently writing a paper on obstructive sleep apnea and it's effects. while it's easy to find information on the symptoms and treatments of OSA etc.... i'm more interested in finding out what it's living with obstructive sleep apnea? how does it effect your personal and professional life?
i do not mean to pry or offend anyone, i am merely interested in learning more....
thanks a million, kj
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med student
thanks
hi again
just a quick note to say huge thanks for all your replies. to be honest i found them more insightful and educational than anything i have read in a medical journal so far with regard to OSA. All of you have taught me what it really means to have OSA and who an OSA sufferer really is. your replies have completely changed the content of my paper and for the better and because of all this experience i have really become personally interested in the subject and will definitely do further research into it further in my career.
thanks again and i wish ye all the best,
kj
just a quick note to say huge thanks for all your replies. to be honest i found them more insightful and educational than anything i have read in a medical journal so far with regard to OSA. All of you have taught me what it really means to have OSA and who an OSA sufferer really is. your replies have completely changed the content of my paper and for the better and because of all this experience i have really become personally interested in the subject and will definitely do further research into it further in my career.
thanks again and i wish ye all the best,
kj
kj
I would like to add one other thing.
When I told my GP I think there is something wrong with my sleeping and that I don't think it is depression she sent me for a sleep study. On my first appointment to speak with the sleep specialist he said "you don't look like a sleep apnea patient". Well during my overnight sleep study I had 29 apnea events an hour.
As you may read in some of the medical journals they say the average sleep apnea patient is overweight, large neck area. As you read through this forum you will find that there is not a 'look' for a sleep apnea patient. We come in all shapes and sizes, age, education, physically fit and sometimes not, male and female.
I think many people who are slim and physically fit are overlooked by their GP for a long time before being sent for a sleep study.
I know I was.
Lisa
I would like to add one other thing.
When I told my GP I think there is something wrong with my sleeping and that I don't think it is depression she sent me for a sleep study. On my first appointment to speak with the sleep specialist he said "you don't look like a sleep apnea patient". Well during my overnight sleep study I had 29 apnea events an hour.
As you may read in some of the medical journals they say the average sleep apnea patient is overweight, large neck area. As you read through this forum you will find that there is not a 'look' for a sleep apnea patient. We come in all shapes and sizes, age, education, physically fit and sometimes not, male and female.
I think many people who are slim and physically fit are overlooked by their GP for a long time before being sent for a sleep study.
I know I was.
Lisa