Newbie feeling discouraged. Need some help.

[sososleepy]

Hello Everyone,
I've been reading posts for a while but this is my first post.
I have mild sleep apnea but severe symptoms. I basically can't function because of overwhealming fatigue(brain fog) and headaches. I was dx with mild sleep apnea and have been treating since november 7th. I am on my 2nd mask, opus nasal pillows, the first was the optilife also with nasal pillows.
I am so discouraged cause i really think i feel even more fatigued and foggy since starting treatment. I am a mouth breather and wake up when my mouth opens which seems to be constant during the night. I have been using nosestrips which help a little but doesn't solve the problem and leaves me looking like miss piggy for half a day:)
When i had my titration study in the lab i was given a mask that covered my nose. It was horrible and left a bruise on my face so i ask for the nasal mask because my face is sensitive and bruises easily. Even the straps from the opus causes irritation and marks that take hours to go away.
I am so brain fogged that even writing this is really difficult so please forgive me if this post seems scattered.
Here are my questions,
Is it possible to have severe symptoms with mild sleep apnea?

Does anyone have a suggestion regarding which type of full face mask to buy,one that is comfortable and doesn't cause marks and irritaion on the face?

Is it normal for symptoms to get worse when starting treatment?

I'm questioning if my symptoms are osa or if maybe i should be looking elsewhere since i have such a mild case of osa.
Thank you all for your help. Sososleepy

[shardebhow]

[quote="sososleepy"]Hello Everyone,
I've been reading posts for a while but this is my first post.
I have mild sleep apnea but severe symptoms. I basically can't function because of overwhealming fatigue(brain fog) and headaches. I was dx with mild sleep apnea and have been treating since november 7th. I am on my 2nd mask, opus nasal pillows, the first was the optilife also with nasal pillows.
I am so discouraged cause i really think i feel even more fatigued and foggy since starting treatment. I am a mouth breather and wake up when my mouth opens which seems to be constant during the night. I have been using nosestrips which help a little but doesn't solve the problem and leaves me looking like miss piggy for half a day:)
When i had my titration study in the lab i was given a mask that covered my nose. It was horrible and left a bruise on my face so i ask for the nasal mask because my face is sensitive and bruises easily. Even the straps from the opus causes irritation and marks that take hours to go away.
I am so brain fogged that even writing this is really difficult so please forgive me if this post seems scattered.
Here are my questions,
Is it possible to have severe symptoms with mild sleep apnea?

Does anyone have a suggestion regarding which type of full face mask to buy,one that is comfortable and doesn't cause marks and irritaion on the face?

Is it normal for symptoms to get worse when starting treatment?

I'm questioning if my symptoms are osa or if maybe i should be looking elsewhere since i have such a mild case of osa.
Thank you all for your help. Sososleepy

[TerryB]

sososleepy,
I have my own theory about feeling worse at the beginning or treatment. Remember that apnea disturbs our sleep but usually only in a way that we do not detect enough to fully awaken. Even though it may happen many many times a night we just awaken enough to clear the apnea in the airway. Under treatment, I found myself pulled fully awake many times to adjust the mask to eliminate leaks. My brain fog was much worse until I found that nasal pillow masks work better for me than simple cushion type and that I was mouth leaking. It is very unusual now for me to have a night with wakings, trips to the BR and so on, I've got it dialed in now.

It is very useful to be able to read the machines information on the night or to have your sleep Dr. read it for you.

Hang in there, it can take a while to eliminate the problems one at a time, but it will be worth it in the end.

TerryB

[Wulfman]

Welcome to the forum.

Please look at all of your equipment and then fill out your profile with exactly which equipment you have.....machine and mask. And, please include the pressure you're using.

You've stated that you have a mouth-leaking/breathing problem. Several things can help with that......taping your mouth shut, Polident adhesive denture strips to seal your lips and a full face mask. Sometimes chinstraps work and sometimes they don't.


Den

[Slinky]

SoSoSleepy, why not register as a member of this forum (its the best one for apnea on the net) and near the bottom of the registration page include what CPAP machine, mask, etc. you have. We'll be asking you that as we try to help you out.

Also, if I were you I would go back to the sleep lab or sleep doctor and request a copy not only of the doctor's dictated results report (about 1-2 pages) but also a copy of your sleep evaluation study AND titration study full data summary reports w/graphs (about 5-7 pages each). These will better indicate what other sleep problems may have shown up in those studies and whether the CPAP titration relieved or eliminated them.

As long as you are having all those mouth breathing episodes you are not receiving anywhere near adequate CPAP therapy. Your "therapy" is blowing out of your mouth rather than doing what is supposed to do.

Tightening the masks too tight is THE most common mistake for those new to CPAP. At the top of the page there is a Red Ball w/a Question Mark in it. Click on that red ball and scroll down to Mask Fitting and check out the tips for how to get a successful mask fit, tho they won't help w/nasal pillows type masks. They do for full face and nasal cushion type masks tho. And take the time to check out the info available under the Yellow Lightbulb as well for LOTS of good CPAP use info.

A search on PadACheeks might also benefit you. One of our forum members has her own website for the various CPAP mask straps covers, etc. she has made that those who use them swear by. They can make wearing a mask so much more comfortable and prevent those marks!

[neverbetter]

Sososleepy, OSA may not be your only problem. Get a complete physical and have your thyroid levels checked.
If you are a mouth breather by nature, try a Hybrid or at least a chin strap.
Just do whatever you have to stick with your cpap. It takes a wile to overcome the sleep deficit of having osa. In 3 months you will feel like a new man.

[DreamStalker]

Yes ... improper treatment can make your mild OSA condition worse. If you are leaking out your treatment through your mouth, the soft tissues of your mouth and throat will be more prone to sticking your airway shut.

Take care of your mouth leaks! Masks are an individual thing and you just have to try enough of them to find the right one for your unique facial features and size. Users of nasal type masks tape, some glue with Polydent, some chinstrap, and some train not to leak the air out of their mouth ... but treatment does not work unless leaks are controlled.

Best-o-luck!!

[sososleepy]

Hello Everyone,
Thank you to everyone for your help. I don't know what c-flex means but i do have it on my machine. What is c flex? I'm really clueless with all the settings on my machine. I just left it the way it was set by the therapist.
I have a consult report of my initial sleep study and also a more detailed report my 2nd study which was the titration study.
My DR was initially checking me for narcolepsy which i was dx for back in 1995. She was suprised that she found osa. The sleep study didn't indicate narcolepsy but she has not completely ruled it out because i had many MSLT's back in 1995 which showed narcolepsy. Blood test was neg though.
My respiratory index was 13.9 events an hr. Events much more common in REM with REM index 28.7 events an hr. Nadir saturation was 92%.
Report states that i had slightly more stage2 sleep and absent slow wave sleep and signifigant REM sleep. This was all a written report from 1st study.
I do have a graph of 2nd study. I really don't understand it so i don't know what to post about it. Thanks so much for helping me out and for the encouragement. Sososleepy

[Pilot_Ron]

C-Flex is an automatic cycling of the blower to relieve pressure when you exhale. On the Remstar plus, it can be locked out, and if you don't know what it is, chances are when the machine was set up for you, it was locked out. When you press the c-flex button, and look at the display, it will either do nothing or cycle from 1 to 2 to 3 then back to 1. 1 is the least amount of relief and 3 is the most. If it does nothing, then it was set up with the c-flex loxked out.

[Guest]

Hello! And welcome to my world! I felt just like you describe. I tried 8 masks in 6 weeks - all but two came from this forum. In the meantime, I felt terrible, shakey, weak, unable to focus, and victim to rollercoaster emotions. Until I found my current maks - Nasal Aire II - I absolutely couldn't be 100% compliant. I took nights off, took off the mask mid-night, everything.

I finally begged my sleep doctor for some help, and she gave me a free sample of Provigil. It really helped me get over the hump. I only took it a few weeks.

The thing that really broke-through for me was finding a mask I could tolerate all night every night. It's hit and miss and takes time and money and frustration. I just fell into this mask when it was traded to me for a mask that didn't work out for me. I didn't even WANT this mask. But I tried it anyway, and am glad I did. I now regret all the times I said no thank you to people on this forum who tried to offer me this mask for free before I got this one.

Good luck, keep reading, keep plugging away, and do whatever you have to to make your therapy work.

Hugs,
Barbara/Babette

[Guest]

BTW, I used that mask you're now using. HATED IT! Lasted two nights with it. It's really annoying the way it's fashioned. Some love it, but I don't think YOU are, or you wouldn't be posting what you're posting.

Try an over-the-head nasal pillows or prongs mask. Less facial pain, more comfort, easier to sleep with. Many people love my mask of choice - Nasal Aire II. You can buy one from cpap.com for under $100 and get all six sizes of cannula it comes with, and figure out for yourself what size works for you. Once you've decided that, you can sell/swap your unneeded cannulas.

Another top contender in this category is the Swift. I haven't tried it, but it has lots of champions on this forum that will help you figure it all out.

You can also talk to your DME about the problems you're having, and what they can do for you to get you into another mask.

Good luck!
Babs

[countrygent]

I'm only a month into CPAP and probably haven't been perfectly titrated (through an APAP trial), but I have used nasal pillows (Swift Mirage II), and I have mouth taped to help stop mouth breathing. I am having trouble getting my HI number down below 15 - my AI is in the 4 range most nights. Your post touches a chord with me as I have been having similar challenges aboutnot getting an immediate improvement and in fact feeling worse.

I wanted to reply to you about the difficulty of adjusting. I must have had untreated OSA for years, and was exhausted and strung-out with fatigue, stress and anxiety about my declining ability to cope with life's challenges and my career when I started my APAP trial.

The first four weeks were hellish - the kind of sensitivity you talk about - the mask on the face, the hose, the noise, wind rushing out when I opened my mouth ... was waking me up and I wasn't sleeping soundly. I felt better in some ways - morning headaches and fibromyalgia-like symptoms I had had vanished after a few days (I'm guessing that may have been from the lowered O2 saturation I had from the untreated OSA).

And my heart was greatly lightened from a position of having a suite of mystery ailments that looked like they would hinder me and cause constant pain all my life, with no hope of improvement, to having not only a diagnosis, but a diagnosis of something (OSA) that usually responds to treatment. I was emotionally hugely lifted up although I hated the idea of CPAP, I hated the equipment, I really just wanted to be pre-OSA (no dice on that wish!).

I got so tired and spaced-out after I started CPAP I finally could hardly cope with a normal day by week 3. The icing on the cake was spontanious tears - it was crying but not accompanied by any sadness - I was just absolutely worn raw and empty. Lost my sense of smell and taste, ears were ringing - it was deep exhaustion combined with some kind of weird bounce-back or adjustment or release from the OSA and perhaps the accompanying emotional aspects. Thank godness over Christmas I was able to take a few days off work and made it a priority to get lots of sleep (or time for attempted sleep), take naps, and cut back on all else. I felt completely disabled and devastated by the challenges of adjusting to the CPAP.

Many folks here report similar phenomena of "its way worse at the beginning before it gets better". You are not alone. Many people have real trouble adjusting. Some don't. Some report amazing improvement after just a day or a few days. We may be a minority but it is a significant group of people who have felt just as you describe, for weeks or even months.

Read the yellow lightbulb article about adjusting that talks about the "walking dead" and "zombie" stage that some people have.

The great news for me is my head feels clearer now five weeks in. I'm still not comfortable, but I'm getting more compliant.

In particular the facial pressure points and tenderness of the mask against my skin is diminishing as sleeping with the mask becomes something more of habit and feels more normal. I'm still tired and a little bit more fragile than my old robust devil-may-care self, but I have made some progress. I can think more clearly but my energy level is not fully recuperated yet. That feeling of inflammation and full body pain (chest wall and shoulders particularly) have almost vanished.

Stick with it - the long-term effects of untreated OSA are (without sounding alarmist, but I've done alot of reading) very serious for lifelong health.

Your CPAP will probably diminish the real risks of stroke and heart attack related to OSA, and there is research out there that suggests long-term negatives of non-compliance with treatment may include advanced senile dementia due to the effect of repeated nightly oxygen deprivation. Not to mention the poisionous effects of the repeated adrenalin surges and coping adjustments the body's endocrine and adrenal system was making to get by before. Infection and inflammation risks and recovery are negatively affected by OSA.

There are so many folks around here who say "it is not a quick and easy fix and you have to work at it, it was very difficult for me but I stuck with it, and the rewards in feeling better and long term health cannot be understated."

I'm preaching like the converted, I know, but I have hope for good health and recovered energy now, if I can only get over this hump of adjustment and finding the pressure settings, mask and treatment that tweaks CPAP or APAP just right for me. There is tweaking required for most people to get the most out of it, which is why there are so many people here who have a great interest in the equiptmpent, the sleep study numbers, the particular challenges. Many have gone before us and have not only great advice but a message of hope that should be great encouragement to stick with it through the tough part.

Hope you see some small improvement as I have after the weeks of horrible feelings. Just two weeks ago I felt like death warmed over. Now I don't feel right yet, but so much better by comparison. Still much work ahead.

Good luck. Hope and perseverance, and be pro-active about what is working and what is not.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): mirage, hose, news, CPAP, Nasal Pillows, APAP

[TXKajun]

What a great post, Countrygent! Thank you!

Kajun

[Guest]

CG, GREAT POST! Thanks for it! I get tired of re-hashing my posts from my early weeks, so I tend to say things short-hand these days. It's great to have you put it out there in detail like that.

Your experience is very much like mine. Hang in there, buddy!!!!!

Cheers,
Barbara a few hours south of you in WA State

[sososleepy]

Wow,
You guys are great! Thank you all so much for helping me.
I think i'll stay with this group. What a warm welcome and great suggestions. I really appreciate the help.
CG, your post brought tears to my eyes. Your symptoms mirror mine.
I'm so glad your feeling better, even if it's just a little better. I hope each day gets better for you. Thank you for taking the time to write such a long post. I know that can be difficult when you don't feel well. It was so very helpful.
All of you have helped me so much, Thank You!!! Hugs, sososleepy