Frustrated young sufferer

[mboy12]

Hi, I’m new to this forum. Found it online and saw several interesting posts so decided to join. I suffer from sleep apnea, was diagnosed close to 2 years ago. I am currently 22 years old. I was given a CPAP machine about a year and a half ago which has been met with zero success. At first I tried the full face mask which I could not tolerate due to the very sensitive bridge of my nose area. Now I’m using nasal pillows which I still have trouble tolerating and get at best an hour or 2 a night (rarely). Due to the inability to use the CPAP my doctor has scheduled to have my tonsils removed (which are not abnormally large) and to possibly try and shrink the base of my tongue which narrows my airway in hope of improving the sleep apnea to some degree. I also suffer from chronic sinusitis and terrible allergies all year round. I take a reactine every day along with singulair, nasonex and advair( I also use a breathe right strip every night, also spray rhinaris sinus rinse before bed and when I wake up). While these help with some symptoms it is often not enough. During the day and night I very often get shallow breathing, a feeling like someone’s sitting on my chest and each breathe is a conscious effort. Over the counter cold medicines like Tylenol Cold often help with this used at the same time as all the aforementioned medications. I currently take 50mg of Benadryl each night which after looking around this forum I understand is not a good idea. I’ve been told I’m a strange candidate for sleep apnea due to be being skinny and having a thin neck. After seeing several doctors most agree the problem is probably dental related which I’m trying to have fixed with braces (after they perform the tonsil surgery). We had discussed a dental appliance but was ruled against due to the high likelihood I won’t tolerate it. They’ve also discussed possibly performing a surgery where the break the jaw and move it forward (I forget the name). I have a very difficult time getting to sleep without the sedatives. Ill lay in bed extremely tired for hours but unable to actually get to the point where I feel ready to fall asleep. I also wake up to go to the bathroom many times a night (which is why I started the sedatives in the first place). Right not I’m extremely frustrated to say the least. For all the medications I take I feel like I get nowhere. School is extremely difficult, I never have energy and my concentration is awful. Any advice would be much appreciated.

[cflame1]

What are your problems with your nasal pillows mask?

Seeing as you've stated your problems with your FFM... what did you try in order to deal with the problems? Did you try a nose bridge pad? There are multiple kinds. Did you try more than 1 kind of FFM... there are multiple brands, they all fit differently and can be adjusted differently.

[sickwithapnea17]

I take inhalers and symbicort and singulair for asthma- you should see a pulmonlogist
I'm curious, is it safe to take many medications like this? I take a lot of medications and people say that they don't want to take so many meds when they are young for some reason?

[Mary Z]

mboy12, I would revisit CPAP and with the help of the members on the forum find a way to make it work. CPAP requires a commitment to work through problems one at a time until you can wear the mask all night, every night, and naps. Yes, it can be tough, but until you use the machine you will not derive any benefit from therapy.
I also was very skinny when diagnosed, many of us (most of us probably) do not fit the stereotype OSA patient.
I use a FitLife Total Face Mask by Respironics. Though it's a very large mask I find it extremely comfortable- it does not touch the bridge of my nose. Finding a comfortable mask is necessary and may take some time.
The nocturia (using the bathroom at night) is a symptom of your sleep apnea. It makes for a miserable, fragmented nights sleep.
I'm glad you are looking at alternatives, but don't feel as if you've given CPAP a fair trial.
Are you willing to work with us to try and make CPAP therapy work for you? You've made a start by joining and posting to the forum.

Sometimes in the beginning a light sedative such as xanax, or a sleeping pill may be used to help you get over the hump of sleeping with the machine by helping you actually get to sleep. Does the benadryl help you at all? A review of healthy sleep hygiene would be helpful. Getting a good nights sleep can be a lot of work!
Good luck, keep posting and let's work this out together.

[TalonNYC]

Definitely hang in there and give it a try, I had the same discomfort on my nose and used a Gecko-Pad (now just listed as a CPAP nose bridge comfort pad) for the first 2 months. They helped a TON until my nose got used to the pressure.

It does take time, but it really does work.

[jamiswolf]

Hi Mboy12,
Some people seem to have much more difficulty with apea while sleeping on their back. I certainly do. What position do you sleep in? If on your back, you should consider trying to train yourself to sleep on your side. Some people disregard this idea but some swear it's a very valid issue.

If your apnea is positional, you may be able to reduce pressure by side sleeping. Lower pressures are easier to manage.
Just a thought...
Jamis

[mboy12]

@jamiswolf

I sleep kind of on my side but I’d say more on my stomach, I Purchased a special pillow with grooves to take the pressure off my face when I sleep. It helps but often ends up putting a ton of pressure on my jaw

@TalonNYC, cflame1

I haven’t tried any official padding; I have tried using adhesives and putting soft substances on my nose. Usually ended up ruining the seal of the mask. The sleep therapist I see never mentioned these pads…would be something I’d be willing to look into, any idea about cost or website to purchase?

@Mary Z

To this day I try and use my CPAP nearly every night. I’ll put it on for an hour or so while I read in bed. When I’m done reading I role over and try to get to sleep but for whatever reason just can’t. While the sedatives help in making me feel tired, they don’t make me sleepy enough that I forget about the mask. Maybe it’s sort of a mental block. The sedatives do help me to fall asleep and stay asleep but the next day I feel just as tired and sometimes even more. Going to the bathroom so frequently is extremely frustrating, and while the sedatives do help reduce getting up they often make me feel very groggy the next day, basically I can’t win. I haven’t ever tried any prescription sleeping drugs, is that something worth trying? I’m worried about the side effects and dependence.

@sickwithapnea17

I have seen a pulmonologist, he sent me for x-rays for my lungs which showed nothing. While I don’t officially have asthma, it does run in my family and my bad allergies work to basically give me the same symptoms as asthma minus the attacks. I do use ventolin occasionally and while it’ll help with congestion it won’t take away that feeling of shallow breathing. To be honest I’m very worried about all the medications. I worry about the effects it’ll have on my long term health but it’s almost like my symptoms become completely unmanageable without all the allergiy and cold medicines. I really don’t know what to do. I have tried things like lozenges, Vicks and teas to try and help but they give minimal results.

When I mentioned the shallow breathing to my sleep apnea doctor he believed it was due to my lungs being overworked overnight which causes the whole breathing area to become inflamed. Tylenol Cold does help with this but not just a pain killer. maybe its the decongestant in it.

[robysue]

Mboy12,

Welcome to the forum.

As others have said, it is well worth making a serious commitment to making CPAP work. The problems you list---including your current inability to sleep with the mask for more than two hours---are all things that various folks here have had to overcome to make this crazy therapy work.

My two cents:

1) Your list of meds includes:

• reactine (Cetirizine, an OTC second generation antihistamine),
• singulair (a prescription asthma med used to prevent difficulty breathing, chest tightness, wheezing and coughing, and sometimes used to treat severe, year long allergic rhinitis)
• nasonex (a prescription topical nasal spray containing used for allergic rhinitis)
• advair (a prescription asthma and COPD drug used prevent asthma symptoms)
• a breathe right strip (an OTC one-time use device designed to hold the nostrils a bit more open, and thus relieve night time congestions)
• two spray rhinaris sinus rinses, one in the AM and one in PM (I assume these are similar to the NeilMed Sinus Rinse bottle, which is a variation on a neti pot)
• Tylenol Cold (OTC formula that contains the same ingredients found in cough syrups; acetaminophen; chlorpheniramine maleate, the antihistamine found in Chlor-Trimeton; and phenylephrine HCl, the oral decongestant that has been used to replace pseudoephedrine (Sudafed) in many OTC decongestant/cold meds since the US gov. forced pharmacies to put products containing pseudoephedrine behind the counter, even though they are still sold OTC.)
• 50mg of Benadryl (two OTC benadryl's at bedtime; while benadryl is a good antihistamine, my guess is that you're more interested in the well know side effect of drowsiness)

This list is pretty lengthy for a 22 year old with out an asthma diagnosis. It is troubling that you're taking not one, but two pretty potent asthma meds when you say your issue is with chronic sinusitis and severe year-long allergies. But you also say:

During the day and night I very often get shallow breathing, a feeling like someone’s sitting on my chest and each breathe is a conscious effort.

So the very first thing to consider is this: What is causing the daytime breathing problem? Are you under the care of an allergist? A pulmonologist? Both? Neither? Because it seems to me that there's an underlying problem that is NOT sinus-based: Clogged sinuses, painful as they are and as much as they interfer with normal breathing do NOT typically get described by the sufferer as "feeling like someone's sitting on my chest." You may need to see a pulmonologist as well as an allergist. Getting the daytime breathing problems under control is a first necessary step to making CPAP work. And yanking tonsils out and all the other surgical ideas ain't going to fix a serious asthma problem.

2) As lengthy as your list of meds is, it does NOT contain something that many folks facing chronic sinusitis wind up with, which is some kind of longer term antibiotic. Chronic sinus infections are often opportunistic and frequently bacterial. Have you ever been prescribed an antibiotic for your chronic sinus problems? Did it help? If not, has the doc treating you ever outlined a plan for trying to get rid of the chronic sinusitis itself? Does the doc know that your current regime of drugs, nasal rinses, and breathe right strips is NOT helping you?

3) If the nasal allergies are severe enough that the doc has put you on asthma meds without an asthma diagnosis, has he ever suggested a referral to an allergist for allergy testing and then possibly allergy shots? Do you know what you are allergic to? Is it feasible to avoid your worst allergens? Are there ways to at least minimize contact with your allergens? Would allergy shots, which are designed to desensitize you to the offending allergens, be useful in your case? These are all questions you need to be asking your doc.

4) You write:

I have a very difficult time getting to sleep without the sedatives. Ill lay in bed extremely tired for hours but unable to actually get to the point where I feel ready to fall asleep.

You need to talk to the doc(s) about your bedtime insomnia. You currently are self-medicating by combining the benadryl and the Tylenol Cold (and lord knows what else). And are you taking other sedatives on top of those? If so, what are they? Rather than trying to self-medicate your way out of the bedtime insomnia, you need to talk to your PCP, your sleep doc, and your other docs about better approaches for dealing with the bedtime insomnia. I'd suggest starting by cleaning up the sleep hygiene. There are lots of tips on how to do this in my Taming the CPAP-induced Insomnia Monster. It sounds cruel, but the start of cleaning up the sleep hygiene is to DELAY going to bed until you are actually sleepy enough to get to sleep. And you need to learn the difference between feeling exhausted and feeling sleepy. Establishing a regular wake up time, regardless of how much or how little sleep you get may also help. If you are not opposed to prescription sleep meds, a short course of Ambien or Sonata or Lunesta might do the trick for you and allow you to get to sleep with the mask on in a timely fashion. When used as intended they should be much more effective than your current self-medicated mix of antihistamines and interfere less with the quality of your sleep cycles.

5) You write:

I also wake up to go to the bathroom many times a night (which is why I started the sedatives in the first place).

As others have pointed out, the frequent trips to the bathroom are being caused by the apnea. Fix the apnea, and these will diminish or completely disappear. But the sedatives don't fix the apnea, and hence will not and cannot prevent you from waking up in the night needing to pee. Search for nocturnia, that's the official name for what you describe. You'll find a lot of hits about it here at cpaptalk. You body has developed nocturnia as a sided effect of its defense system for dealing with the apnea: Your body is basically spending most of the night in "fight-or-flight" with lots of stress inducing hormones circulating throughout your body. They are produced every time your airway collapses or partially collapses and the brain decides it has to wake everybody up to restart the breathing with a jolt of cortizone and adrenaline.

6) Finally you write:

Right not I’m extremely frustrated to say the least. For all the medications I take I feel like I get nowhere. School is extremely difficult, I never have energy and my concentration is awful. Any advice would be much appreciated.

I take it you are in college or grad school since you're 22. College is tough enough when you are healthy enough to take the allnighters, the desire to party and hang out with friends until all hours of the night, and stress of dealing with how to pay for it all. Until you get your daytime breathing issues better controlled and your OSA treated appropriately, most likely by CPAP, things are not going to get any better. And they could get much worse. I don't know your financial situation. But you've got enough going on right now health-wise that you might want to give some serious thought to a medical withdrawal from school for a semester or two so that you can devote your efforts into making CPAP work and figuring out what's triggering the daytime breathing problems and then obtaining appropriate medical treatment for it. I don't know what your relationship with your parents is like either, but it is important to realize that if either parent has medical insurance from their job, there's a very good chance that your are entitled to stay covered under that insurance until you are 25 or 26---even if you are not in school as a full time student. Yes, it's a bummer to still be dependent on your parents at this point. But if you need their financial help in order to focus on addressing your very real health issues for a three to six month period or so, you should do it: After all, if you cannot get yourself healthy now when you're 22, what will you be like when you are my age (53)?

Best of luck

[cflame1]

@jamiswolf

I sleep kind of on my side but I’d say more on my stomach, I Purchased a special pillow with grooves to take the pressure off my face when I sleep. It helps but often ends up putting a ton of pressure on my jaw

@TalonNYC, cflame1

I haven’t tried any official padding; I have tried using adhesives and putting soft substances on my nose. Usually ended up ruining the seal of the mask. The sleep therapist I see never mentioned these pads…would be something I’d be willing to look into, any idea about cost or website to purchase?

@Mary Z

To this day I try and use my CPAP nearly every night. I’ll put it on for an hour or so while I read in bed. When I’m done reading I role over and try to get to sleep but for whatever reason just can’t. While the sedatives help in making me feel tired, they don’t make me sleepy enough that I forget about the mask. Maybe it’s sort of a mental block. The sedatives do help me to fall asleep and stay asleep but the next day I feel just as tired and sometimes even more. Going to the bathroom so frequently is extremely frustrating, and while the sedatives do help reduce getting up they often make me feel very groggy the next day, basically I can’t win. I haven’t ever tried any prescription sleeping drugs, is that something worth trying? I’m worried about the side effects and dependence.

@sickwithapnea17

I have seen a pulmonologist, he sent me for x-rays for my lungs which showed nothing. While I don’t officially have asthma, it does run in my family and my bad allergies work to basically give me the same symptoms as asthma minus the attacks. I do use ventolin occasionally and while it’ll help with congestion it won’t take away that feeling of shallow breathing. To be honest I’m very worried about all the medications. I worry about the effects it’ll have on my long term health but it’s almost like my symptoms become completely unmanageable without all the allergiy and cold medicines. I really don’t know what to do. I have tried things like lozenges, Vicks and teas to try and help but they give minimal results.

When I mentioned the shallow breathing to my sleep apnea doctor he believed it was due to my lungs being overworked overnight which causes the whole breathing area to become inflamed. Tylenol Cold does help with this but not just a pain killer. maybe its the decongestant in it.

try the following links:
https://www.cpap.com/productpage/Gecko-Nasal-Pad.html
https://www.cpap.com/productpage/remzzz ... iners.html
http://www.padacheek.com/PAC_Nosebridge.html

[mboy12]

@jamiswolf

I sleep kind of on my side but I’d say more on my stomach, I Purchased a special pillow with grooves to take the pressure off my face when I sleep. It helps but often ends up putting a ton of pressure on my jaw

@TalonNYC, cflame1

I haven’t tried any official padding; I have tried using adhesives and putting soft substances on my nose. Usually ended up ruining the seal of the mask. The sleep therapist I see never mentioned these pads…would be something I’d be willing to look into, any idea about cost or website to purchase?

@Mary Z

To this day I try and use my CPAP nearly every night. I’ll put it on for an hour or so while I read in bed. When I’m done reading I role over and try to get to sleep but for whatever reason just can’t. While the sedatives help in making me feel tired, they don’t make me sleepy enough that I forget about the mask. Maybe it’s sort of a mental block. The sedatives do help me to fall asleep and stay asleep but the next day I feel just as tired and sometimes even more. Going to the bathroom so frequently is extremely frustrating, and while the sedatives do help reduce getting up they often make me feel very groggy the next day, basically I can’t win. I haven’t ever tried any prescription sleeping drugs, is that something worth trying? I’m worried about the side effects and dependence.

@sickwithapnea17

I have seen a pulmonologist, he sent me for x-rays for my lungs which showed nothing. While I don’t officially have asthma, it does run in my family and my bad allergies work to basically give me the same symptoms as asthma minus the attacks. I do use ventolin occasionally and while it’ll help with congestion it won’t take away that feeling of shallow breathing. To be honest I’m very worried about all the medications. I worry about the effects it’ll have on my long term health but it’s almost like my symptoms become completely unmanageable without all the allergiy and cold medicines. I really don’t know what to do. I have tried things like lozenges, Vicks and teas to try and help but they give minimal results.

When I mentioned the shallow breathing to my sleep apnea doctor he believed it was due to my lungs being overworked overnight which causes the whole breathing area to become inflamed. Tylenol Cold does help with this but not just a pain killer. maybe its the decongestant in it.

try the following links:
https://www.cpap.com/productpage/Gecko-Nasal-Pad.html
https://www.cpap.com/productpage/remzzz ... iners.html
http://www.padacheek.com/PAC_Nosebridge.html

thanks I really appreciate it

@ robysue

rhinaris spray is just a saline mix. The singulair although often prescribed for people with asthma was prescribed to me for sinusitis/allergies and same for the advair.
I did see a pulmonologist, was sent for x-rays that showed nothing. I was not impressed with the doctor in all honesty and am considering getting another opinion. I have not seen an allergist but plan on doing so in the coming months to possibly try allergies shots in an effort to help my allergies. My current GP is very knowledgeable in allergy related problems and has known me since my youth and is very familiar with my situation. He prescribed me the singulair and advair simply to avoid the waiting times of specialist (he did consult with an allergist first).
The breathing problem is a big issue and something that’s been bothering me for many years. I cud be extremely tired but if I get that feeling in my lungs I find it impossible to sleep unless I get up and take a pill for relief. When asking about this to an ENT he thought it could possibly be due to the overworking and swelling of my wind pipe due to sleep apnea. He also seemed to think sedatives were not such a bad idea and didn’t say anything negative. After looking around the forum I’m really reconsidering it and don’t think I will do it anymore or at least slowly cut back.
Removing the tonsils was decided because of the inability to sleep with the mask. While it may seem drastic, It was also seen as beneficial because of extra tissue below my tongue they want to attempt to remove/shrink (the surgery is almost exploratory in nature, the Dr. believes it should be done because he says I’m to young to be using a mask my whole life).
I do not take any regular antibiotics but do end up using week or so doses several times a year when it does turn into an infection. The antibiotic does help when prescribed. Other than that he believes the singulair would help with some symptoms, besides that do standard things like sinus rinse etc...The Dr. does know that these drugs don’t help me to the fullest extent but is hesitant to put me on to many strong meds due to my age (He waited 4 years before he finally gave me the singulair)
I really appreciate the advice. I think I will go back and see my sleep therapist or maybe try a new one since they’ve had no answers to all these questions I’ve been asking. Yes I’m in university and all nighters are out of the questions. If I’m lucky I can get 3 hours of studying in a few times a week. My moments of clarity and focus are rare. I find it impossible to bring myself to do work most days, mainly just because I’m so out of it and sluggish most of the time. So I end up being behind in assignments and readings even though I try and take a minimal course load. In terms of financial I’m covered by my parent’s health plan which does cover a good chunk of sleep related supplies. I never really considered taking a break from school, I feel guilty like I’m already so behind because of my problems...


I’m not kidding myself at this point, I know I abuse medications and take way more than anyone should…but I don’t know what to do…I can’t find any relief..

that link is really good thanks for that!

[robysue]

mboy,

Please do follow up with the GP who knows you about the daytime breathing problems. Until you can breathe in the day it will be continue to be difficult to breathe at night with or without a CPAP. You should note that the chance of surgery actually giving you a mask-free life is not that high. But removing the tonsils may make it easier to tolerate CPAP. I still think that if I were you, I'd devote more time to dealing with the current problems with CPAP that are preventing you from getting enough sleep. All the specific problems that you have listed with your difficulty in sleeping with the CPAP have been faced by numerous posters here. And solved for the most part.

Yes I’m in university and all nighters are out of the questions. If I’m lucky I can get 3 hours of studying in a few times a week. My moments of clarity and focus are rare. I find it impossible to bring myself to do work most days, mainly just because I’m so out of it and sluggish most of the time. So I end up being behind in assignments and readings even though I try and take a minimal course load. In terms of financial I’m covered by my parent’s health plan which does cover a good chunk of sleep related supplies. I never really considered taking a break from school, I feel guilty like I’m already so behind because of my problems... (emphasis added)

You are dealing with a significant set of health issues. The reason you are "already so behind" is likely the disruption the sleep apnea and the severe allergies are causing in your daily life. In other words, you are already in a hole. But unfortunately you keep digging that hole deeper and deeper when you keep trying to muddle through with "3 hours of studying a few times a week". The first thing you have to do to get out of that hole is to quit digging.

One way to quit digging the hole is to take a medical leave of absence for a semester. A medical leave will let you focus all your attention on dealing with your health issues. Certainly if you decide to go through with the surgery, you will need time off from school to recover. All I'm saying is that regardless of what you decide about the surgery, you should look into a medical leave of absence for a semester. If you can regain your health, you may be able to both complete the degree faster (once you are back in school) and with better grades. So don't let guilt about how deep the hole currently is stop you from doing what you need to do in order to stop digging the hole even deeper. Talk to someone in the Dean of Students office about medical leaves of absence. In the long run, it may be cheaper to take the leave, get your health problems dealt with, and finish off the degree more quickly once you return.

[greg-g]

While I totally agree with all the above posts, they are excellent, I was wondering how successful your APAP treatment is for the few hours sleep you do manage a night.
What are your settings?
Can you post a screen shot of your graphs either from ResScan or Sleepyhead.
All information helps.

[rjp123]

OP - how much do you weigh?

[robysue]

@Mary Z

To this day I try and use my CPAP nearly every night. I’ll put it on for an hour or so while I read in bed. When I’m done reading I role over and try to get to sleep but for whatever reason just can’t. While the sedatives help in making me feel tired, they don’t make me sleepy enough that I forget about the mask. Maybe it’s sort of a mental block. The sedatives do help me to fall asleep and stay asleep but the next day I feel just as tired and sometimes even more. Going to the bathroom so frequently is extremely frustrating, and while the sedatives do help reduce getting up they often make me feel very groggy the next day, basically I can’t win. I haven’t ever tried any prescription sleeping drugs, is that something worth trying? I’m worried about the side effects and dependence.

One thing that I think you need to do is reserve the bed for sleep. Which means no reading in bed. Find another comfy spot to read somewhere outside your bedroom, or at least outside your bed.

And while I do think that trying to desensitize yourself to the mask is a good idea, you've developed a bad and self reinforcing habit here: You wear the mask while reading in bed and then take the mask off before you get to sleep. I think that there is some part of your unconscious mind or even your conscious mind that still believes it is OK to sleep without the mask on. And you are allowing that part of your mind a major victory every single time you fall asleep without the mask. And it's a subborn part of your mind too: My guess is that this part of your mind is fighting the sedatives you are taking, and that's why they are not enough to help you forget about the mask.

Because you see, learning to sleep with the mask on your nose is NOT about learning how to "forget about the mask". It's all about learning how to deal with the mask being on your face. I've been using xPAP for a full year now. And I am very consciously aware of the dang mask the whole time I'm lying in bed awake. And I can't tolerate it on my nose for more than about 15 minutes (20 minutes tops) when I'm trying to get to sleep without starting to get a feeling of being over stimulated by the whole CPAP experience. I've had to do major work this past year to learn how to get to sleep quickly once I go to bed. Part of the solution is a sleep restricted bedtime. Part of the solution is getting up at more or less the same time seven days a week. Part of the solution is light therapy in the morning. But a huge part of the solution is simply waiting until I'm very, very sleepy before I go to bed and mask up. If my eyes are so heavy that I cannot stay awake, I can slap that mask on my face and turn the machine on and ignore all the irritating little physical stimuli from the air being blown down my throat for the 10 minutes or so before I'm sound asleep. It's not that I "forget" the mask is there---rather there is a very conscious effort on my mind and body's part to willfully say "that air tickling my throat is NOT worth worrying about---get to sleep and it won't bother me any more."

So here's what I'd recommend: Do the work on desensitizing your self to the mask far away from bedtime and even in a different room. Drag the machine out to the living room and do an hour or so of reading or studying with it either before or right after supper. Then move the machine back to the bedroom and get it set up for bedtime. And then give yourself a good hour or two break from the machine and go do something FUN and ENJOYABLE so that you can forget about the mask for awhile. And then let yourself get very very sleepy in the living room or study or den while you are studying. And when you can't hardly keep your eyes open and you are yawning uncontrollably, that's when to head back to bed and mask up and lie down immediately to try to get to sleep. And if you're still awake and getting more alert after about 20 minutes, get back up and go into a different room to wait until you are both sleepy enough and calm enough to go back and mask up and try again to go to sleep with the mask on. Because until you learn how to fall asleep with the mask on, you won't be able to sleep with it at all.

@sickwithapnea17

I have seen a pulmonologist, he sent me for x-rays for my lungs which showed nothing. While I don’t officially have asthma, it does run in my family and my bad allergies work to basically give me the same symptoms as asthma minus the attacks. I do use ventolin occasionally and while it’ll help with congestion it won’t take away that feeling of shallow breathing. To be honest I’m very worried about all the medications. I worry about the effects it’ll have on my long term health but it’s almost like my symptoms become completely unmanageable without all the allergiy and cold medicines. I really don’t know what to do. I have tried things like lozenges, Vicks and teas to try and help but they give minimal results.

I think what you really need to solve the day time breathing problem is some serious detective work on the part of your doctors. Since you've already seen a pulmonologist, I think you need to ask the GP for a referral to an allergist.

Do you have any ideas on what you are allergic to? If it's unknown what kinds of things you are allergic to, some form of allergy testing is in order given the severity of your symptoms. And even if you think you know what you are allergic to, allergy testing is needed to find out whether you are a candidate for allergy shots. And that's another reason I think you need to ask the GP for a referral to an allergist.

Once you know what your allergens are, you need to do your very best to avoid them. And that may very well involve some substantial lifestyle changes: A common source of severe yearlong allergies is a severe allergy to dust and dust mites. Managing a severe allergy to dust and dust mites requires getting rid of all kinds of things that the dust mites live in. If you are allergic to dust mites, carpeting has to go; the mattress and pillows may need to be put in special mite-proof covers; extra special attention to thorough cleaning needs to be done---no dust bunnies can be allowed to grow in your room under the bed; heater and A/C filters have to be changed more often; the CPAP should have a fine filter and that fine filter should be changed far more often than normal---probably once a week.

And again, given the severity of the allergies, once the allergens are known, then (and only then) can the allergist properly evaluate whether allergy shots might do you some good.

When I mentioned the shallow breathing to my sleep apnea doctor he believed it was due to my lungs being overworked overnight which causes the whole breathing area to become inflamed. Tylenol Cold does help with this but not just a pain killer. maybe its the decongestant in it.

And what exactly is causing the lungs to be overworked at night?

I doubt it's the CPAP: You admit you are not using the CPAP very much at night; hence your lungs shouldn't be overworked by exhaling against the pressure. Besides, it's not the lungs that actually do the work of breathing out against the pressure, it's the diaphragm and chest muscles. Folks do often complain of soreness in their diaphragm and chest wall muscles when they are learning how to exhale against the pressure. (What is your pressure setting? And do you have Flex turned on?)

Is it the apnea itself that's making the lungs become inflamed? Probably: A lot of people (including me) have noticed that all kinds of symptoms of general inflammation in the body seem to disappear after we start using CPAP. After all, every apnea and hypopnea we have with the untreated OSA leads to physical stress in our bodies. And histamine is one of the things our body produces when it is under a great deal of stress. And histamine does play a role in causing all kinds of things to become inflamed.

[Pugsy]

I second the request to see your software reports. Nocturia could also point to ineffective therapy.
Do you have the software? If not, it is available here in Uncle_Bob's signature line.
memberlist.php?mode=viewprofile&u=38643

There is a software tutorial video to help use the software.
http://montfordhouse.com/cpap/resscan_tutorial/


Then how to post an image of the reports. The single night's daily details and graphs are the most helpful.


Open the image to full size so it is easily read.
I use Vista snipping tool to create a screen shot and crop the image at the same time.
Prt/scr key will also take a screen shot if using XP. If laptop is used sometimes the Fn key has to be pushed at the same time as the prt/scr key
I think windows 7 Home Premium has the snipping tool, Basic may not.
Once the screen shot is created save it in jpg format.
Upload the image to a host site. I use Photobucket it is free, there are others.
Once the image is uploaded then copy the ENTIRE IMG address. Be sure to include the opening and closing IMG in brackets. Paste that copied address into a post here.
Use the preview button. If you can't see the image try again because if you can't see it we can't.