Am I Impatient or is Sleep Apnea not my Answer?

EDIT: I apologize my post is long but PLEASE give me some feedback as I'm desperate for some answers. I would have shortened it up, but I wanted to give a full picture of my situation. Thanks, you guys are great!

I want to start out by saying that I'm a brand new member, but I have been reading on here for quite some time. For many years, I'd say roughly 6-7 years now, I've struggled with my health. My primary symptoms have been fatigue/exhaustion, difficulty concentrating, memory issues, anxiety, diarrhea, sleep issues (insomnia-like issues primarily) and, most of all, an overwhelming "hangover" or "brain fog" feeling much like an all day headache that I can only say has sapped away my life by making me not feel like "me" for a long, long time. I've gone down many roads to try and get my life back, taking antidepressants, sleep aids, anti-anxiety meds, thyroid meds, etc. Nothing worked and no one ever mentioned sleep apnea (I'm always tired but never had an issue falling asleep excessively and do not snore) until I mentioned headaches that seemed worse in the morning and the fact that my dad and brother also suffer from sleep apnea. That breakthrough came about 2 1/2 months ago and here I am, 2 sleep studies and a CPAP prescription later, and I have been confirmed to have "mild to moderate" sleep apnea. I had a TERRIBLE couple of sleep studies, slept only a couple of hours in each, but I still had enough "events" to justify treatment. A pressure of 10 was enough to eliminate them, so that's what I'm at. Sorry I don't have more data from the studies; honestly, this has all been a blur and the memory and concentration issues make it worse. I believe my doc said I had 10-20 AHI or somewhere around there, mostly hypopneas, but my O2 did decrease into the mid-to-high 80's and the events were waking me up.

So, of course, I thought I had my answer after all these years, and maybe I do, but that's where I need to come here for either: a.) support or b.) honesty from people who have been there and can tell me if I'm barking up the wrong tree. I'm only two weeks into my treatment, but thus far I'd say I have had a pretty easy time of it from a compliance standpoint. I had 2-3 rough nights adjusting and religiously wore the mask all night, finally sleeping my traditional 5-7 or so hours each night after that. I'd say the most I sleep is 7 1/2 hours, and I have been able to do that with the mask with no major issues now. The mask fit is good, the machine indicates no leaking, the machine also says my AHI is down to usually 1 or so each night. So it's as if my treatment is "successful," but I still feel rotten.

I know most of you may think I'm expecting results too soon, but that's exactly what I'm looking for: a time frame from those who have experienced it. If I am sleeping with the mask on through the night (for the most part, I mean I wake up like once a night and almost always have, but I fall back asleep) and not having any events according to the machine, shouldn't I be feeling better at least in some way? What should my expectations be after 2-3 weeks on the machine? My main "side effects" seem to be dry mouth (which I can handle, and I am a mouth breather) and headache (seems to be WORSE). Not to mention the biggest issue: I feel spaced out and worn out as usual. I guess I thought if my "brain" issues like the concentration and memory issues was caused my 02 reduction, then if I'm either sleeping with the mask on or awake all night, 02 reduction should be a non-issue and I should at least feel a bit sharper, less "foggy."

I have an appointment with my doc soon, but I think it's vital that I find out from people who have "been there." Do my symptoms coincide with any of you? How long does it take? Does it vary from person to person? I know many of my symptoms are right in line with sleep apnea and I have had it medically proven that I have it, but I hate to put all my eggs in one basket if my situation seems out of the ordinary. I'm not in denial that I have sleep apnea; I know I do and I plan to treat it. However, if sleep apnea is only a minor part of my issue, for instance my fatigue, I don't want to be living in a dream world that I might wake up one day and find my fogginess gone, memory back, and feel like me again if that's not an experience many of you have had.

Sorry for rambling. I'm sure there's other posts out there with similar info, but I've been reading around a lot and finally caved in and decided to start my own. From everything I've read on here, this is a great community and I know I can count on all of you for help. Of course, I still plan on seeking my doctor's medical guidance, but please help me out as much as you can. Thanks, all!

Hi - Couple of questions... what is your prescribed pressure setting or settings, and do you use the ramp feature?

And did you also get bloodwork, etc. from your GP to look into any other issues (apart from thyroid)?

Are you taking any meds for any reason, and do you take them in the a.m. or pm, or ??

It sounds like everything's going as it should, except that you don't feel better... so you've come to a good place to get help and I hope you find it soon.

My pressure is 10 and I do use ramp... 30 min.

I've had a TON of bloodwork over the years, and the only things that have shown up are high triglycerides and low vitamin D, both of which I've been able to control via medication/supplementation, but still feel the same...

I take only one med, for the triglycerides, in the AM. Take my vitamins then as well. Other than that, no meds.

Thank you!

tell the doctor everything. write it down and hand it to him. you could in fact have other medical conditions, diagnosed or as of yet undiagnosed that are making you feel the way you do. the one thing for sure is you do have sleep apnea and need to continue treatment. the doc may decide to look at other things in addition to apnea or decide to let this treatment run longer before looking elsewhere. personally i am being treated for apnea but because of some diagnosed neurology issues may never actually feel better. maybe you need to see a neurologist to rule out some bad things if it don't start getting better. they can tell alot from the 4 head to butt mri's. head, neck, c-spine, thoracic spine is what i think mine were called.

Thanks, I have wanted to get MRIs to rule everything out, but tend to get "that's not neccessary" answers from my docs who tell me I'm healthy because my bloodwork is all in line. I'm hoping my answer is CPAP, but if it's not I certainly need a new primary care doc!

Oh, and my EPR is set at 2, just in case that helps!

most of the neurogical problems are diagnosed by mri or blood and dna tests ordered by a neurologist based on observation and conversation and are above the paygrade of a primary care doctor that orders basic blood tests.

you need to be thinking referral to a neurologist, not trying to convince the primary doc to order mri's.

Good point, I will see if I can get a referral to a neurologist. It certainly is worth a shot.

Welcome to the forum. No need to apologize for length of your post or to amend it. If you stick around you will find that I often come up with some short novels myself.

I wish I could give you an expected time frame when you will see some marked improvement. We all desire it but there just isn't any "normal" time frame where we wake up and we realize that we have turned a significant corner in how we feel. Part of it is just that "it takes as long as it takes" and part of it is often we have other things going on that impact how we feel but we sort of tend to not take notice of other possible factors because we have put all our eggs in the sleep apnea basket.

Some people are extremely lucky and have the "Eureka" morning really soon into their therapy and others plod along and keep hoping that they get the Eureka moment "someday". The people that have marked improvement quickly...those people are very lucky because there are many, many more of us who just have to keep plodding along.

2 1/2 weeks is not very long at all. I know it seems like a lifetime to you though. Improvements can be so gradual that we simply don't notice them. You have to give it time..no way around that fact.
In the meantime while you are giving it time there are things you can do that will give you the best chance at having the results you desire.

So you get the standard speech that we give when we see our reports and the data looks good on paper but we don't feel as good as those numbers say we should feel (I speak from experience).
Take a hard look at anything else outside of sleep apnea that can affect how you might feel.
You are sleeping 5 to 7 hours...are those hours fragmented for any reason? Mask issues? Pain?
Are most of your nights closer to 5 hours than 7 hours? You may need more hours of sleep.
Do you have any other health issues that might affect the quality of your sleep?
Are you taking any meds (even OTC) that have side effects that might cause some of your daytime symptoms? If you take meds...research the known side effects.
Is your bed comfortable? If you wake up during the night do you have trouble getting back to sleep?
Any issues with leg movements like restless leg or periodic limb movement?

Have you had any of the usual sleep apnea symptoms reduce? Like nocturia...that was my first measurable symptom to abate when I finally got my therapy optimized. I also have discovered that if I can get close to 8 hours of sleep I feel so much better than when I get 7 hours or less. Fragmented sleep was a real problem for me. I had issues with pain which caused me to wake often and anything that causes fragmented sleep messes with our sleep architecture and thus with the normal restorative powers of sleep. So I had great reports but lousy sleep quality.

Take a good long look at your overall sleep architecture and anything that possibly might affect the quality of your sleep. Lots of stuff will affect our sleep that is totally unrelated to sleep apnea and the machine doesn't do so great at fighting stuff unrelated to sleep apnea.

Patience....it takes as long as it takes and there is no set time frame when we "normally" see improvement.

A couple of observations & q?'s

wkpro wrote:I have been reading on here for quite some time. For many years, I'd say roughly 6-7 years now, I've struggled with my health.

I'm curious, If you weren't yet dx'd w/OSA why were you reading here?

wkpro wrote:The mask fit is good, the machine indicates no leaking, the machine also says my AHI is down to usually 1 or so each night. So it's as if my treatment is "successful," but I still feel rotten.

You do know that you can't tell much about leaks from the machine display right? You need to use/see the graph. With SH software available there is no reason not too. IF you are having leaks your machine may not detect or score events. The point is a low number on the machine can be misleading.

Have you considered getting a recording oximeter to see if your O2 is still dropping? A good investment tool.

obtw- what is the make/model of your machine? Exactly as written on the machine?
Are you having trouble exhaling against the pressure?

wkpro wrote:I'm only two weeks into my treatment,

Not that I am any barometer but it took me about a month before I could sleep thru the nite with my cpap which recorded no data. About a year BEFORE I felt my treatment was effective. And when I think back I prob had OSA for more than 30 yrs. before I was dx'd.

Get your therapy right first then determine if it is effective. Check your software daily until you get it right. It is a steep learning curve but everything you need to be successful is here.

Good Luck

O did I forget to say - "Get a notebook. Write in questions, answers, things that went well each nite, things that need to be improved on. Start for bed about 30 min earlier so you can get the bugs worked out BEFORE your too tired to care. Keep the notebook by the bed so after you lay down and think of things ....

I was reading here before being dx'd with OSA because I suspected it due to my dad and brother's OSA despite the fact I had multiple general practitioners tell me I didn't have it because I didn't snore and wasn't overweight. I was searching for an answer and many of the posters on here seemed to have similar symptoms to me... especially the whole "zombie" feeling.

I'll respond to the rest of your questions first thing in the AM... I'm getting ready for bed... hopefully a good night of rest! Thanks all.

You have only been doing this 2 weeks. It can take up to a month for your mind to trust that is is safe to sleep deeply with that thing on your face.

Sleep apnea IS one of your problems. Treating it is one of your answers. It maybe not the only one. It can take months for the proper sleep and O2 levels to heal your organs, the same way that it takes your broken leg in a cast weeks to heal, putting that cast on your leg doesn't heal it instantly.

wkpro wrote:I was reading here before being dx'd with OSA because I suspected it due to my dad and brother's OSA despite the fact I had multiple general practitioners tell me I didn't have it because I didn't snore and wasn't overweight. I was searching for an answer and many of the posters on here seemed to have similar symptoms to me... especially the whole "zombie" feeling.

The zombie feeling can take a while. I've been on this since November 14th, last year. I'm very slowly "de-zombie-fying". I had hoped for a fast elimination, but it was not in my cards. So, after getting the apnea under control, then I set about working on other things. The suggestions and questions above are excellent. For me, even simple Excedrin was messing up my sleep through what my sleep neurologist called "analgesic rebound". So was caffeine, a common self-medication for "zombie effects". I tweak, adjust, learn, repeat. Improvement sometimes comes slow.

They're not mutually exclusive, you know.

Yes, I think you haven't been on CPAP nearly long enough to reap the full benefits. That doesn't mean that there might not be something else going on with your health.

I started CPAP in February 2011. I felt GREAT the morning after my sleep study--they masked me and started titrating me after two hours. I started feeling a little bit better upon beginning treatment, but it took a very long time for the full benefits of treatment to reveal themselves to me. As I look back, after about six weeks of treatment I had an initial breakthrough and my nightly numbers suddenly got better. Six months after that I struggled for a bit (a series of nights when I kept taking off my mask) and then had an additional breakthrough. Fairly recently things got even better (owing to giving up caffeine I think, and some cautious "dial-winging"). Part of the problem, I think, is that I was so used to feeling awful, and I had started feeling awful only gradually, I didn't realized how much better it was possible to feel.

Along the way I had to accept that CPAP fixed my breathing during sleep for me, but I had to take action myself to fix a lot of bad sleep habits I collected throughout the years to improve my sleep as a whole. For example, irregular hours for waking and going to bed and shorting myself on sleep. I grudgingly gave up caffeine recently as the results of my observations and saw my sleep improve still further.

Make sure you get software so you can read the data from your machine, and keep track of different things you try. You'll get lots of ideas about stuff to do from this board. You have received some excellent advice from previous posters to this thread.

One thing I don't recall seeing mentioned is getting hold of copies of your sleep studies--there should be much useful information to be gleaned eventually, although your first priority should be just getting good, consistent treatment under your belt.

Software if you don't know about it...SleepyHead and I have links for it in my signature.