living with sleep apnea

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

I can tell you this with out treatment your always tired well put it this way you sleep and feel like you got some sleep put sometimes you have headaches for me personally I work in retail sales. your always on the go and by lunch time your really spent I took a little power nap at lunch gave me a boost but it doesn't work for long when your at home your tired and you just dont have the energy to do anything Im 36 and just started cpap this month and I can see a real difference in my energy levels it amazing just how much you lose with out the proper sleep and rest that sleep apnea robs you of.

I;ve just kind of answered that question in the following link.

viewtopic.php?t=5268

TO summarise, without treatment for many years I ended up being 'diagnosed' as having Chronic Fatigue Syndrome and Fibromyalgia - and I got to the point of simply not functioning, not being able to work or cope with life! By not being diagnosed for about 20 years, my life was reduced to existance and little more.

I may be an extream case, but that's my experience.

sir_cumference

med student,
I am so glad to hear that you are researching/writing a paper on Obstructive Sleep Apnea. This area of medicine will emerge within the next 5 years or so, I suspect. It is, in my opinion, an epidemic already. You can learn alot from all the people on this forum, we tell it like it is. Also, please don't be offended by the references made about the medical field, uninformed sleep drs, ENT's, DME'S, Family Physicians, ect. We are just trying to cope and get better and searching, with frustration, for answers to our questions. I hope you will post your research paper and keep us informed of your progress and insight. Good Luck!!!! Thank You!!!
CD (Carolyn)

I've only been on CPAP therapy for a few months but the first thing that comes to mind is frustration In less than 3 months, I'm on my 4th mask! My numbers aren't as bad as some on here so I'm not feeling a lot better than I did before but I think it just takes time. I do sometimes envy my husband, who can just go to bed and not have to deal with the CPAP like I do. I'm just so thankful that I stumbled on to this site. For a period of time at the beginning while not having any mask that was comfortable or leaked, I admit, I got depressed. But knowing that so many other people are going through the same thing has helped me so much. Good luck with your research - I'm SO glad to hear someone is doing this!!
Kathy

Hi Med,
I don't write this to bitch or feel sorry for myself. The "victim mentality" is far behind me, and I live each day as it comes. I'm just amazed at how my life has changed with osa.
I'm 53 and have been an very active rock climber, skier all my adult life. Rock climbing was my focus for over 30 years, and own a climbing gym now.Since being afflicted with osa I simply did not have the energy and felt so terrible that climbing became something I used to do and love. Without cpap therapy life is not very good. Sleeping 12 to 14 hrs a day and still just bone tired. Headaches and hangovers without drinking. This affects every aspect of daily life.With therapy life is more tolerable, but I'm not the same person I was. It takes me at least 2 hrs. to wake up and start to feel like taking on the day. I really cannot guarantee how I'm going to feel from one day to the next even using a cpap. I have good days and bad. Although I'm very grateful for cpap technology I wish more could be done.
I'm glad to see you explore this issue
Gary

There really, REALLY needs to be more attention given to this situation. I can relate to the previous posts, especially how OSA can rob you of your life. As for the therapy, however, it amazes me that we have to resort to things like pantyhose straps and mouth tape to make the therapy work. Some physicians shy away from auto machines and machines that provide data regarding the therapy and sleep pattern. It is a classic example of disempowering the patient - not wanting to promote self-care or knowledgeable involvement in your own therapy. I don't know what I'd do without a group like this to share information and support. I also think it is important to add that people with OSA may be subject to the same criticisms and abuse as with other chronic conditions. There is a tendency in many societies to use an attribution theory type of approach - they got it because... often because of something we did. Many people with chronic conditions are blamed for their condition - being out of shape, poor sleep habits, poor diet, high BMI, age, etc., as if we brought it on ourselves. That mentality absolutely has to go away if people are to seek, obtain, and follow an appropriate therapeutic regimen. OSA is a major threat to health and longevity and should be dealt with in a partnership model that empowers and educates the patient and focuses on management rather than on blame. OK I'm getting off my soapbox now. But as a nurse, there is a need for some soapboxes out there on this topic. I am amazed at the lack of knowledge of this condition evidenced by so many of my colleagues in health care. Thank you for taking on the challenge!

WOW ProfessorSleep!!!! Fantastic post!!! Well said!!!!!

You don't live with sleep apnea, you try to survive it.

I am 23 and still working on my undergraduate degree. I had moved from a big town to a small town right out of HS to date a girl. After 3 years of dating the girl I thought I would marry (and still want to this day), we broke up. Over the next 3 years I would attend 6 different schools trying to find myself, my place in society, figure who I am, and try to survive. In April of this year I found out I have severe apnea.

All the days of fatigue, feeling helpless, feeling alone, worthless, unsuccessful; all these days were given a reason the day I found out I had apnea. So many people will say apnea has robbed thier life of joy, memories, success, and so many countless other things. My life has been no different, and I struggle everyday just trying to get out of bed and go to class.

The people who say I'm lazy, unsuccessful, a slacker, or whatever else it may be: Those people are the people in my life who are family, or call themselves to be my friends. I ignore comments as I know they don't know the extent of having to live with this horrible disorder.

Apnea is not cancer, alzhiemers, heart disease, or AIDS. But as far as I'm concerned it is just as bad in how it makes life hell. Apnea is my disease, my cancer, my alheimers, whatever it may be.

When you ask what effect sleep apnea has on our lives, you open pandora's box.

I am an 82-year old male with severe obstructive sleep apnea.
Prior to the apnea diagnosis I was in and out of the emergency room with shortness of breath. Usual diagnosis was CHEF followed by a three day hospital stay on OE2.

Normal life was difficult because of fatigue. Living with CPAP is a chore but made me born again(not in a religious sense)

Living with Apnea? It is the realization you will have to wear that mask and keep that machine by your bedside perhaps the rest of your life, because if you don't, you could die from a heart attack or stroke. It is the realization that you have FINALLY found something to treat your chronic fatigue, the weight gain that never stops, and the round of dieting that will take off a few pounds, maybe even 20, then stop working, and then everything comes back on. It's knowing that if you are fat, people look at you like a freak and make excuses for your being overweight, when it was the Sleep Apnea that made you fat, not the weight that gave you Sleep Apnea. Sleep Apnea can cause so many things that most GPs don't associate with it, like depression, low libido and sexual dysfunction, depression, chronic fatigue, as I just said, heart conditions, high blood pressure, low thyroid, high cholesterol, even Type 2 Diabetes.

And then there are the Sleep Specialists who say if you lose weight you won't need the machine. They can't explain why so many thin people have Sleep Apnea. Or the ENTs who say get this operation and you won't need your CPAP, but they never do followups more than a few months after the surgery. They hold the proverbial carrot in front of us, promising a cure, only for us to find out there is no cure, only treatment.

Living with Sleep Apnea, untreated, means knowing you can fall asleep at a second's notice, even while driving, causing a wreck and killing yourself or others. It means not knowing from one day to the next if you will live to see your children grown. But if you are untreated because you are claustrophobic, can't afford the treatment or the equipment, don't have insurance you are usually too tired and too depressed to care. You go through life like a zombie, fighting sleepiness, fatigue, falling asleep at meetings or at your desk, and you most likely are, one night, just going to stop breathing and never start again, or there will be the one time when your heart rebels and you'll end up in ER in the middle of the night from a heart attack or a stroke.

I don't have ins, and probably for the past 15 years I have had OSA. I always took a power nap for lunch, until my recent job. When I started to miss my power naps, I started to fall asleep, even when I drove home from work. Scared me a little, but still did nothing, I could not afford it. It got so bad that during the night I would wet myself and wake up to go to the bathroom. But it was starting to happen more and more. I am not talking about wetting the bed, just a tinkle mind you, just enough to wake me. It got to the point that it started to happen 15 to 50 minutes apart. That got me thinking, maybe I am actually dieing. So we took out a second and I got help. Now I am awake til midnight and feel a whole lot better.

Toby

Are you looking for information on untreated apnea and how that has affected people’s lives, or are you looking to study compliancy after being diagnosed? Excuse the hyperbole but treatment will often give a patient their lives back. I was fortunate – I adapted very quickly and do not dread putting on my mask at night. The technicians at the sleep center were wonderful and I feel that much of the success of my treatment is because of their expertise and compassion. Too many people continue without appropriate treatment due to ill-fitting masks and machines that make treatment more exhausting than the apnea itself.

Before I got CPAP, my snoring would drive my wife into the guest room 6 nights out of 7. I'll let you figure out what that meant to my personal life!

I wish more people knew about Awake In America, which takes any donated CPAP, BiPAP, APAP, and mask, refurbishes them, etc. and GIVES them to people who cannot afford to buy one. Yes, they may be a few years old or older, but they work, and the masks might not be the greatest, but they are free, and a person can get treatment.

I saw one CPAP advertised on ebay or somewhere by someone who had the surgery so they "didn't need it anymore". Felt like writing them and telling them they more than likely would a few years down the road. Poor trusting souls haven't been on this forum or others, most obviously.

But that brings up another source. Many CPAPs and masks are available for lower than cost from an online seller or auction, although ebay says they will delete any medical equipment like the machines being for sale. To get around this, some sellers will advertise a case for sale that just happens to come with the machine and everything else. Where there is a will there is a way..

And then there are the insurance companies that won't pay for anything except the cheapest CPAP and mask. Even though any insurance code is the same for any kind of a machine and what they pay is the same. We often wonder if it is the DME telling people their insurance won't pay for another type of machine so they make more money. Of course a call to the insurance company by the subscriber would clear this up.