Low AHI - still tired

eblingus · Post by **eblingus** » Mon Sep 17, 2007 5:35 pm

Another Guest wrote:Well, first talk to your Dr about what you asked here, also ask about the stage 3 and 4. I hope your Dr is a board certified sleep specialist.I Regular docs do not have the training nor the patient experience to understand it all.

He is a surgeon (http://www.mtscottsleepmedicine.com/pro ... oberts.htm). I am not sure how good he is at this sleep stuff. I definitely feel that he is using the dartboard method of problem solving ('that didn't work, try this'). I am not sure how common that is with sleep issues.

Another Guest wrote: If you are not experiencing mask leaks then it is probably not the mask notr the CPAP IMO. If you do not have a bed partner see if you can video yourself sleeping. Maybe the mask slips during your sleep and you are unaware of it. BTW...what is your CPAP setting?

I started with a half-mask, and I think I was mouth breathing, based on wife's observations. I switched to a head-strap. I also tried FF mask, but like the half-mask with strap better. Shouldn't the machine detect if I am having leak problems? As far as I can tell, I no longer am. My cm/H20 is 7.

Another Guest wrote: I think what is most important is to give yourself time (still talk to doc). just not having the headaches alone is showing that it is working. Your SA seems to be in the mild catagory...you may not experience the same "noticeable" relief that a moderate to severe sufferer would.

That is what I was thinking, and why I posted. I value feedback from others. Most of the FAQ info seemed to be geared towards the Zombie crowd, which is not me.

Another Guest wrote: Get a metabolic work up...check for vitamin deficiencies. Make sure the thyroid has been checked and that you are not anemic. I am about day 5 on my B12 injections...can't believe how much better I am feeling...less tired, more alert, better cognitive thinking, no automatic behavior, better mood..the list can go on and on. Again, I hope this was my answer.

I originally thought my fatigue was a result of a blood disorder. My GP said I did have microcytosis, but it was not severe enough to cause my problems, and so referred me to this other doctor to test for a sleep disorder. My brother has SA, has been on CPAP for a few years, and said he noticed an improvement right away.

eblingus · Post by **eblingus** » Mon Sep 17, 2007 5:38 pm

birdshell wrote:However, I know that I have personally tried using 9 masks in the year and a half that I have been using cpap. I keep looking for the perfect mask for me.

What triggered you to switch masks? Did you know something was wrong with the mask, or was the therapy just not working for no apparent reason (my problem)?

Slinky · Post by **Slinky** » Mon Sep 17, 2007 5:54 pm

And maybe it is time to go back and take a better, more thorough, look at that microcytosis as a contributing cause. If the treatment is not too unpleasant or serious it might be worth a trial treatment for it.

Another Guest · Post by **Another Guest** » Mon Sep 17, 2007 6:12 pm

Not to take you away from this forum...I just found it and think it is great but I am on another one which may also give you some answers or topics you can relate to. I won't give the info because I don't want to be rude...but it has to do with sleep apnea and it ends in org. I am also on one for Primary CNS Hypersomnia which is a 2nd sleep disorder I have.
Mrs RVW

JZ · Post by JZ » Mon Sep 17, 2007 6:13 pm

I am coming up on my one year anniversary of cpap use and am still tired most of the time. I have mild to moderate OSA and a titrated pressure of 7. My average AHI with cpap is <2.

However, I have had major difficulty adjusting to cpap because I am such a light sleeper. I had to change masks several times, and now can tolerate the mask better. I still have multiple awakenings each night.

I agree with a number of the other postings here about working with your doctor to look for other possible causes for your tiredness. For me, it is probably insomnia and maybe my mitral valve prolapse (heart murmur). Hate to admit it, but it could also be my allergy to exercise - lol.

It is easy to get discouraged. But when you do, remind yourself that your cpap therapy is providing you benefit despite your tiredness. If your leaks are under control, you are not mouth breathing, and your cpap pressure is at the right level --- it has to be benefitting you.

I began to notice small, but important changes somewhere along the way. I no longer get up 2-3 times a night to go to the bathroom. I am less likely to fall asleep in my chair in front of the TV at night. I am far less likely to take naps on the weekend. Because I have a data capable machine, I am confident that my cpap is doing what it is supposed to. That is enough for me to be compliant despite being tired. For me, it looks like it will take a long term approach to identify other problems (such as the insomnia) and try to find workable solutions for those issues.

Hang in there -- the fact that you don't have the morning headaches is a great sign of improvement.

Janna

JZ · Post by JZ » Mon Sep 17, 2007 6:21 pm

Another Guest wrote:Not to take you away from this forum...I just found it and think it is great but I am on another one which may also give you some answers or topics you can relate to. I won't give the info because I don't want to be rude...but it has to do with sleep apnea and it ends in org. I am also on one for Primary CNS Hypersomnia which is a 2nd sleep disorder I have.
Mrs RVW

Mrs. Rip,

Most of us feel it is fine to mention other forums (fora?) such as sleepapnea.org on this forum. I hope everyone takes a look at the various other resources out there. Some may settle on just one forum and others may choose to use several to meet their needs. While I primarily use (and love) this site, I do visit the others occasionally when looking for helpful information. We all need as much information as we can get about our health care.

Janna

birdshell · Post by **birdshell** » Mon Sep 17, 2007 6:50 pm

eblingus wrote:
birdshell wrote:However, I know that I have personally tried using 9 masks in the year and a half that I have been using cpap. I keep looking for the perfect mask for me.
What triggered you to switch masks? Did you know something was wrong with the mask, or was the therapy just not working for no apparent reason (my problem)?

Excellent question.

I started with a Swift at titration and that was ordered for me--it was delivered with my machine. After adjusting the blamed thing and spending a good 10 minutes at it before sleeping, I was awakening to fix the slightly off kilter nasal pillows. Since all companies guarantee their masks for 30 days (at least for new users) I took it back after 3 weeks. I just figured that awakening more than 10 times a night to readjust was counterproductive to the idea of uninterrupted sleep.

About two and a half weeks into using the Swift, I had an appointment with my sleep specialist next door to the sleep lab. In discussing the problems, he agreed and had a sleep tech come to see if there was another mask she could loan me. I was given the precursor of the Breeze, the ADAM Circuit--which I liked.

The DME provider did not have the mask in stock that the RT thought would work best for me, so I was given a ComfortLite ("1") to use, It was better. When the ComfortLite 2 came, I used that for nearly a year.

Meanwhile, I acquired 3 various masks on the forum from other users. I had liked the Breeze's precursor so I wanted to try a Breeze; then the Breeze started giving me contact dermatitis from the DreamSeal portion.

Everyone seemed to like the Hybrid, so I had to get one of those; and I've since tried the Optilife and Liberty.

Almost all of them worked quite well, but I would have to say that my favorites are the Liberty, Hybrid, and Optilife at the moment. I'm not sure how I will react to them, but the Hybrid is definitely OK for me to use thus far.

My overall favorite is the ResMed Mirage Liberty, but I'm not sure if its silicone will work for me in the long run. The Liberty is very similar to the Hybrid in most respects, but is a little bit better (i.e., the nasal pillows have a double seal, which helps, the headgear is improved, etc.) I love the fit, the security, and the fact that I only need to put lanolin on my lips before donning the mask and turning on that flow generator.

I hope that wasn't too long a treatise on "Masks I Have Tried".

If you (or anyone else reading this) have any questions, please contact me via Private Message (PM).

Please note: A silicone sensitivity is not a good thing for a cpapper! Latex isn't a problem for some of us; silicone apparently is.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): resmed, breeze, mirage, swift, Titration, Awakening, CPAP, DME, Nasal Pillows, Private Message

Born Tired · Post by **Born Tired** » Tue Sep 18, 2007 6:52 pm

eblingus wrote:
Born Tired wrote:Some people seem to notice a difference right away, but for some of us it takes time. It took me a year just to find the right mask/machine (with the help of this forum). It was another 6 months or more before I knew I felt less tired--the improvement was very gradual. I still awaken numerous times at night, but overall I am so much less tired now than before I began this adventure.
Hope you start to notice a difference soon.
Esther
--
Why did you change masks & machines? How do I know I need to make a change vs. just sticking with it?

I tried a variety of nasal and FF masks, but they all either leaked like crazy or hurt the bridge of my nose or upper lip area. With the second mask, my DME guy "adjusted" the mask (while I was sitting) so it wouldn't leak. (I learned to always insist on lying down for a fitting.) That night I took a sleep aid (my doc gave me 7 pills to help me get through the adjustment period). I slept through the night, but the next AM when I woke up the mask had dug into the bridge of my nose so badly I had a red indention for 3 days --had to stop using the CPAP during that time. That first year I think I was awakened more from pain or having to adjust for leaks than from apnea. After reading some very postive things about the Aura (now Twilight NP) nasal pillow I got one. It didn't hurt or leak much, and it has been my favorite ever since.

Another problem was aerophagia--swallowing air. I would have to turn off the machine in the middle of the night due to pain. People here suggested getting an Auto which automatically adjusts the pressure throughout the night. Being on the lower pressure most of the night (my apnea is mild) eliminates much of the aerophagia.

After getting a mask that is comfortable and a machine that I could live with, I finally began to slowly feel less tired.
Esther
__