Why treating apnea is important

[jmelby]

This is for those of you who may not yet be treating your apnea, or those who are frustrated with your adjustment to cpap and considering giving up. I know it can be difficult, but maybe this story can help you understand why treatment is important and inspire you to continue. It doesn't seem like apnea harms you in the immediate future... the risks they talk about seem way off in the future like a stroke, or treatable and "not that bad" like hypertension.

My older brother is 48 years old and suffered a serious stroke 2 weeks ago--the doctors were unable to find any cause for the stroke... no blood clot, no factors pointing to a specific physical cause. Among several stroke risk factors such as obesity, my brother has untreated severe OSA (obstructive sleep apnea). His doctors haven't pointed to it as a cause, but the therapist who is working with him on his rehabilitation told his wife that his OSA could have triggered the stroke, or at least been a contributing factor. This is something those of us living with apnea should already be aware of, but it seems like a distant risk, and there is really no way to pinpoint the apnea as the cause of a stroke.

My brother was diagnosed with OSA about 5 years ago, and probably has had it for 20 or more years, but he gave up on cpap after 2 weeks. His complaints were that his DME didn't tell him that he would lose air through his mouth and that was uncomfortable. He's a stubborn man, so I don't know how incompetent his DME was or if he just refused to listen to any solutions they may have offered. Now my brother is currently unable to walk and has double-vision. His rehabilitation will probably take a year. We don't know if the sleep apnea was to blame, but why take the risk of not treating when the consequences could be so severe?

I'm personally very thankful that apnea is such a treatable condition--the hurdles early in treatment can be very difficult, and it's not hard to see why half the people who try cpap give up. But for those of us who made it past the hurdles know, once you get there, it's just a part of your routine and it's hard to imagine not sleeping with a mask on. Please don't be one of the people who give up...

[2 B Sleeping Soundly]

Jmelby,

Excellent post! The story you tell is unfortunately repeated over and over again. We all need to do (as you have done here) whatever we can to get the word out to our friends and family living on borrowed time from the Demons of Apnea.

I hope your brother recovers fully and can learn to live with the wonderful, sleep inducing, healing 'winds' of CPAP!

John

[Pugsy]

This is why I decided to stick with the therapy even though I didn't have the "miracle" that some people have been lucky enough to experience immediately with therapy. I counted it as "preventative" medicine. Preventing, or at least limiting, the stroke or heart attack or kidney damage or whatever.

I am so sorry your brother and his family have to go through all this now. Like you say, we don't know if it would have happened even with properly treated OSA but then again...who knows. I hope his recovery goes well.

[jazzer4]

Thanks for posting this Jeff.
If it just keeps one person on track it's worth it.
And maybe just maybe it will convince someone to treat their sleep apnea.

Wishing your brother the best in his recovery.

[Starlette]

Jmelby,

Good evening. On a conscious level, I whole-heartily agree with you as to why those who have OSA should mask up every night and to the repercussions of not doing so. However, on a sub-conscious level, if there was only a way to jam your message down my sub-conscious' throat.
If there was only a way What I mean is on most nights, I can sleep about 6 - 7 hours. Yet the next morning, I look at my data and I've used my xpap, now apap, for just a few hours (3 - 4 hours) a night. How frustrating.

Regardless, I'm not giving up. I don't have ill-will on a conscious level towards my therapy. If there was only a way to make my sub-conscious appreciate what I'm trying to do for my body. If I'd see my therapy sessions during the night be equal to what I've slept, I'd be doing snoopy dances every morning.

As for the stroke, I've seen its consequences with my Father-in-Law. This past December 14th, it will be four years for him. His was not due to OSA. However, he does have central apnea and gave up on his xpap after a few months if even that. Sister-in-law, the doctor, encouraged him that he has a right to choose or not choose the xpap. If only I could smack her upside the head for that My dad also has OSA and uses his faithfully every night, that is when the dog hasn't turned his mask into a chew toy.

I too wish your brother a speedy recovery.

Starlette

[MaxDarkside]

I can relate. Check my signature. I hope he recovers soon and well.

[ameriken]

My signature as well. Quoted from Chunkyfrog not too long ago. It says it all.

I find it difficult to comprehend as to why some folks are so adverse to using it. I mean, this is not chemotherapy. It's not radiation. It's not diabetes where have to poke yourself everyday. Sleep apnea therapy is.....breathing! That's all it is. Breathing. It is the absence of suffocation. I have no clue why some folks decide they are going to suffocate themselves at night by refusing therapy or to get a sleep study. It is one of the easiest conditions to work with.

I thank God everyday that I don't have cancer or some other major illness or disease that results in suffering. Anyone reading this: if you have the slightest suspicion that you might have sleep apnea: DO SOMETHING!!!! Check it out before you end up permanently in a wheelchair with half your face sliding downward because of a stroke, or in a nursing home because you don't know who you are or who your family is because your dementia turned to alzheimers. DO SOMETHING and then tell us you did!

[Sheriff Buford]

This is why I decided to stick with the therapy even though I didn't have the "miracle" that some people have been lucky enough to experience immediately with therapy. I counted it as "preventative" medicine. Preventing, or at least limiting, the stroke or heart attack or kidney damage or whatever.

I am so sorry your brother and his family have to go through all this now. Like you say, we don't know if it would have happened even with properly treated OSA but then again...who knows. I hope his recovery goes well.

Pugs: I have read you mentioning before that you have not recieved "immediate" "good" effects of treatment. But after all this time, have you seen great results? Lots of folks here respect you, and I will bet more than one would be interested in your story.

Sheriff

[Pugsy]

Pugs: I have read you mentioning before that you have not recieved "immediate" "good" effects of treatment. But after all this time, have you seen great results? Lots of folks here respect you, and I will bet more than one would be interested in your story.

I actually have part of my story documented in my BiPap experiment thread. Not all of it but a good bit.
viewtopic/t71442/viewtopic.php?f=1&t=71 ... te#p656179 I won't go into the long version here but if someone wants more details I can add it in that thread. Short version is that even after I got my pressures dialed in (took about 2 weeks) that the only real immediate and marked changes that I saw were the cessation of the nocturia and the reduction of the killer headaches. Nothing to pooh pooh off but I didn't wake up feeling like a new woman. Like everyone else I wanted to feel like a new woman with the energy that I had 25 years ago. Don't we all? I was better but far from "great". In my head I knew that the therapy was working, not as fast or as remarkably as I would have preferred, but it was working. I also knew that I had other health issues (mainly pain) that were messing with my sleep and how I felt. This is why you see me tell people that the cpap machine doesn't fix problems unrelated to sleep apnea. So for over 2 years I had to be content with the "preventative" aspect of things and count my blessings that at least the killer headaches were significantly reduced and I didn't have to get up and pee 10 times a night. During those 2 years I worked on other things to help me get better sleep. Different meds to help with night time pain..different bed and such. Sometimes one step forward and 2 steps back but slowly things got better overall as I found ways to deal with the pain.

I never had the brain fog that people talk about. So I couldn't use that milestone as a subjective improvement. It wasn't till I stumbled onto the BiPap that I felt the great change in overall daytime energy that I have been yearning for. Near as I can tell the main thing is that I am sleeping longer, about an hour longer before having to get up because laying in bed kills my back. How the BiPap works to let me sleep that extra hour, I have no idea. I am just thankful it does.

[jmelby]

Thank you all for the well-wishes for my brother.

I think some important points have been raised here--and reflect what I was trying to get across--that treating sleep apnea isn't just about daytime sleepiness and mental fog, which are probably what brings most people in for a sleep study, but it is also about preventing long term problems. Pugsy is a great example of someone who stuck with x-pap treatment even though she didn't feel a great change with treatment. I'm similar in that I didn't have a great deal of daytime sleepiness to begin with--I sought treatment because my partner informed me that I would stop breathing for long periods of time in the night and had several scares in the night where I woke up unable to catch my breath. For me, it is about the long term preventative benefits, and peace of mind knowing that I am breathing all night long.

[peterg]

I remember the AIDS public awareness adds "IF it's not on, it's not on". maybe something like that for Apnea, though it could not possibly be as sexy. I've found trmendous resistance from (relatives) I have approached with the O2 meter, just for a night to tell. A common refrain is, so what if Ive got apnea, Im not going to wear one of those masks, or cant afford it. yet if you stangled (fantasy alert) them in the day time the same as apnea might do to some at night, you'd go to prison for it. "Apnea denial, it's a crime" .. nuh, not sexy enough still. "Breathe or die" like the early 90's computer game "Ski or Die" might get their attention.

(Pugsy as an aside, is there a link with your (or generally) night time back pain and Apnea? For one, arousals wake one, and the pain makes it harder to get back to sleep for sure.