Frustrated young sufferer

[Pugsy]

I do have a memory card on my machine…not sure how to read it though, just download the program and use a card reader?

Yep. Just install the software and use it. Must make sure in the download process from the SD card that you choose all detailed data or you will only get summary numbers.
Let's see if your therapy needs improvement and go from there. It is possible that your therapy isn't optimal and that would explain part of your problem. Gotta start somewhere to figure out why you aren't doing well.
We must make sure therapy is optimal first.

[tinbanger]

Not that I have tried it but weed, I would imagine works pretty good to put you to sleep.
and probably a lot less dangerous to your health than all the pills the doctors like to hand out.
Just saying.

[jamiswolf]

Tinbanger wrote" Not that I have tried it but weed, I would imagine works pretty good to put you to sleep.
and probably a lot less dangerous to your health than all the pills the doctors like to hand out. Just saying.

I agree, as long as it's ingested in food. Too many apnea sufferers also have other respiratory issues. You know, in those states that have Medical Marijuana, I'll bet CPAP insomnia would qualify for an RX.
Jamis

[sleepycyclist]

mboy12,

I can relate a lot to your story. I went through my college years struggling with sleep breathing issues and it wasn't until just recently I found I have UARS. I'm 26 years old right now and am having simiallar issues with starting my cpap therapy. I also have very bad allergies which worsen my symptoms. I live in Aspen, CO where we go through big fluctuations in weather throughout the year. I've found that my sleep quality is much better in the winter months when my allergies are at bay and much worse in the spring when my allergies begin. I have started to do allergy shots (about a month ago) which I hope will help, I'll let you know.

Also, I have struggled greatly with bouts of insomnia,I do take trazodone which has been the most helpful sleeping pill for me. Not that I think you should start, I would actually strongly advise not taking perscription sleeping pills if possible, but as a last resort that has helped me more than ambien, etc. I'm hoping to get off it if I can sleep with the cpap. The thing that actually helped me the most for my insomnia was sleeptracks. It may sound inconsequential but listening to the insomnia buster track just before I went to bed really helped me. I use it now if I need to go to bed early and I'm not tired I listen to that and I'm asleep in minutes.

Best of luck to you, hang in there.

[RandyJ]

My two cents are that you need to detox from all of these meds which are not helping you to feel better. The first rule in taking a medication is that it has to provide a significant benefit. If it does not, get rid of it.

I was in a similar "medication" situation last year, taking lots of allergy meds: Allegra, Singulair, Nasonex, Benadryl at night when the Allegra wore off, etc.

Then I went to an allergist who, in order to do proper allergy testing, told me I'd have to go off EVERYTHING for 7 days prior to the testing. I was terrified that I wouldn't be able to survive without my pills and sprays, but after 3 days without them I was pleasantly surprised to learn that it WASN'T that bad. After the testing, I decided that I wouldn't go back on all of it but only add what I needed, when I need it. Now I'm getting an allergy shot once a week, and I take a Zyrtec when I feel like I need it. Not every day. I have Astelin spray for my nose when I need it, not every day. And Singulair, Nasonex and Benadryl are in the rearview...

I went to the allergist precisely because I felt like I was taking a lot of allergy meds that weren't making me feel better. I feel better now.

And saline rinses are my new best friend.

If you are able to detox from some or all of the meds that you do not need, some of your other problems may go away. Of course, before discontinuing any medication, it is imperative to discuss with your doctor in case there needs to be a strategy of stopping one at a time, or tapering.

With allergy meds you can stop cold turkey, but not so with all meds.

Good luck.

[JohnBFisher]

... And saline rinses are my new best friend. ...

Lord, yes! I also use and recommend saline rinses and sprays to help clear the nasal passages and throat. It makes a world of difference.

Also some very good suggestions on the meds. Though over the counter nasal decongestant sprays can have a rebound effect. When you stop using them, you may experience bad nasal congestion for a couple days. Been there, done that.

To the original poster... Hang in there! Be glad that you have xPAP therapy at a fairly young age. I *know* I had sleep apnea - even as a teen. I also know that I lost a lot of energy and ability to function in my late 20s and early 30s. It's time from my wife and children that I now regret. I was diagnosed when CPAP therapy was pretty new.

So, hang in there. You will find a new you hiding under all the nonsense. Go and enjoy life!

[mboy12]

Hi, sorry for my absence, it’s been a tough month or so. Many things have changed since I last logged in. after seeing myself struggle so badly in keeping up with school I’ve come to the realization that I can’t go on like this. I kept thinking things would get better if I’d tough it out but they got worse as stress continuously built up. The work was becoming overwhelming and I could no longer keep up. I’ve taken steps to apply for a medical leave at least for the remainder of this semester and then take it from there. While I do still feel guilty about it I cannot keep fooling myself.
I have taken into account all the advice if gotten from here and I’m working to create a better sleep schedule and improve pre-sleep habits. I am also trying to reduce the number of meds I take, especially Benadryl at night. The first few attempts didn’t go so well because after several hours of never reaching sleepiness I usually got up and got one. I am trying but it really is difficult to get to the stage where my bodies ready to sleep without the sedative. I have tried to give the cpap another go but I’m having some problems. Due to the dental issues I have it really is impossible to go to bed with my mouth forced shut when using nasal pillows. I’ve tried chin straps to but they cause the same problem. My jaw gets tense and painful and even causes headaches. I simply cannot sleep with my mouth forced closed. On the other hand a full face mask was also unsuccessful in the past because of extreme sensitivity on the bridge of my nose. I would be willing to try the special facial pads mentioned here but I’m not sure if it would be a wise investment in another expensive mask just to give that a go.

[maryjoannidis@att.net]

WOW...you are very young to have these many problems...I would always get second and third opinions especially if you are talking about breaking your jaw etc....sounds really extreme. What problems are you having with the nasal pillows....they should really be the most comfortable way to go. Is your mouth open at nite and the air from your CPAP is escaping? Please try your CPAP again with The Ultimate Chin Strap for Sleep Apnea...it will eliminate dry mouth....let you fall into a deep REM sleep, stay there longer, and wake up refreshed! (only if you have been told your mouth drops open while sleeping!). do not give up....you have a long life ahead of you and you need to get your sleep at night....you've done alot of research....keep going....

[n0hardmask]

mboy12,
I can relate a lot to your story. I went through my college years struggling with sleep breathing issues and it wasn't until just recently I found I have UARS. I'm 26 years old right now and am having simiallar issues with starting my cpap therapy. I also have very bad allergies which worsen my symptoms... Best of luck to you, hang in there.

Mboy, My history is very much like yours and sleepycyclist, except I was almost 60 before I was checked for apnea. Believe me, I WISH I had know about this and began the struggle decades earlier.

But I am glad for the CPAP.. I can immediately feel the difference when the air pressure opens up my airways. I used to keep an Oxygen cylinder because my breathing proplems/allergies/asthma would zone me out. CPAP is less of a pain than maiintaining an O2 collection.
Having very similar symptoms to yourself, I'd suggest you look into a dental appliance that would work with your jaw situation instead of against it. I wear a bruxism nightguard and suspect you need a more sophisticated appliance.

You mentioned the possibility of jaw surgery - break and pray. I have not done this, nor would I consider it. There's some hairy stories out there about all the agony and failed hopes of these.. it ought to be a LAST option, IMHO.
I hope you have a way to do aerobic exercises, to keep your breathing apparatus and heart fit. I have to water exercise due to airborne allergies. You do what you have to, but keeping in shape is crucial. You have already begun making some tough decisions, like with the schooling. Along with the other forum members, I encourage you to pursue the CPAP therapy one piece at a time. With lots of help available here, you can expect to make good progress; just don't expect miracles yesterday. It can take time to refine the mask, machine settings, etc. Keep us posted and hang in there! earl

[robysue]

Due to the dental issues I have it really is impossible to go to bed with my mouth forced shut when using nasal pillows. I’ve tried chin straps to but they cause the same problem. My jaw gets tense and painful and even causes headaches. I simply cannot sleep with my mouth forced closed.

Can you let us know a bit more about the "dental issues"? Because it's not that you need to "force shut" the mouth and clinch the jaw so tight that it gets painful and tense; you just need to gently keep you mouth closed---the same way you do during the daytime when you are not eating or talking.

Now: If whenever you do sleep with your mouth closed, you start clenching and/or grinding your teeth, there may be a TMJ issue going on. (There is some evidence that TMJD and OSA may be comorbidites in the sense that people suffering from one of these conditions seem to be at higher then normal risk of the other condition.) As a life long TMJD sufferer, I can tell you that there is help for TMJD. It it only happens at night when you sleep with your mouth closed, ask your dentist about making a TMJ splint. It's a mouth guard that typically fits over the top teeth and it provides a cushion between your teeth. Hence it prevents you from clenching and grinding so intensely at night. For most folks, the guard is all they need to remedy the situation. And sleeping with the guard is usually not an issue because they are not that big or clumbersome. (The custom made ones are typically a lot thinner and more comfortable than the OTC "boil and bite" ones.) And sleeping with a TMJ nightguard AND a cpap mask is no harder than simply sleeping with the CPAP mask.

On the other hand a full face mask was also unsuccessful in the past because of extreme sensitivity on the bridge of my nose. I would be willing to try the special facial pads mentioned here but I’m not sure if it would be a wise investment in another expensive mask just to give that a go.

There is a site that is mentioned fairly often that helps provide low cost mask trials. I can't remember what it is. Perhaps some kind soul who has used it can provide you with the link.

[Pugsy]

There is a site that is mentioned fairly often that helps provide low cost mask trials. I can't remember what it is.

This is the mask trial site. http://www.cpaplibrary.com/mask-trials.html

To mboy12. You might consider trying full face mask like this one
https://www.cpap.com/productpage/RespCa ... -Mask.html

or similar designed ResMed mask...https://www.cpap.com/productpage/resmed ... dgear.html

Both offer nasal pillows so the bridge of your nose is left alone. Yet mouth is covered so no need to keep it closed.
Both are offered on trial at the mask trial site. Limited supply and demand might be high so there might be a wait until one becomes available.