extremely tired all the time. need advice.

[Greendog]

PoolQ, just wanted to thank you for this post. I am new to CPAP therapy. It's been a challenge, intimidating, and difficult. But, as your post so eloquently points out, ultimately worth it.
Thank you for writing this. I am going to save it to re-read when I feel discouraged.
Green dog

[RonP]

You know there may well be other issues at play here besides sleep apnea. Have you had a full medical and bloods? There are a lot of conditions which can cause fatigue / sleepiness, including low vitamin D, low thyroid function, anaemia, and a bunch of others. Some of them are nasty, like leukemia, so make sure all these bases are covered.

I'm not sure the original poster is still reading this thread but I'm posting this for him/her and anyone else that reads this thread. I complained of fatigue for years. Liver enzymes just barely out of range and a few other minor issues in blood tests. Finally had in-home sleep study about a year ago when fatigue got very severe. AHI was 40 so moderate sleep apnea. Started CPAP September 2015 and started feeling much better. Fatigue actually got worse after about six months (ironically about the time I switched to a FFM), could hardly drag myself to work. Had full set of labs for thyroid and a bunch of other things. Ruled out a bunch of issues and found out I have very low vitamin D and a liver problem that might be causing the more severe fatigue. Not sure yet. Could still be the CPAP causing me muscle pain in my chest (heart is fine, have the test results to prove it) causing me to wake up too much so working with pulmonologist after lab sleep study. The liver problem is potentially more serious than the sleep apnea if ignored so I'm glad I caught it early. I strongly encourage you to find a doctor that will do a complete workup on the fatigue issue. The low T might be part of a group of symptoms that point toward specific issues. I didn't realize how integral the liver is to everything that happens in our bodies. It can be in bad shape and not show any symptoms so don't ignore the fatigue since it might be your only clue. At any rate, your liver may be having problems and you only have one of those. Replacements are hard to get.

[kwhenrykerr]

RonP Thank You for posting

I also have a list of other problems. Low Oxygen exchange has been a untreated condition for many years. Low Oxygen has not helped my body do repair work. I think that some of my problems would never have happened had I not had Low Oxygen or I would have died of other causes before they took effect. I know now that my day to day life has improved with cpap. How much improvement am i going to get on the other issues ? Time will tell. I can tell you that my clock is winding down and I value each day more and more. The reduction in suffering helps me and the people around me. I guess what I want to pass on is that I should have done something sooner before facing ending my time in a little room that nobody wants to visit. I want to enjoy as much as I can and see the little ones grow up in a better world. It is getting ready to rain here so I am going to go out and enjoy a good soaking, Thanking God for what I have and praying for the ones that are farther down the path, or lost and do not know where to turn.

[StupidPlanet]

Get a bi-pap.

[mikeindc]

I've had problems with fatigue for years, but do not sleep during the day and almost never fall asleep watching TV or anything. My partner said I stopped breathing at night. I did a sleep study and was found to have major issues, but it was probably the worst nights sleep I have had ever so I don't think it was a good representation of my normal sleep. I started out with high hopes that using the CPAP would result in less fatigue and generally feeling better.

For the first month I used the mask every night for about 5 hours, but would take it off early morning when it would start leaking and generally waking me up. With time it hasn't gotten any better in comfort or problems with leaks.

I am continuing to have MAJOR issues adjusting to using a CPAP also. I have tried 5 different masks in 6 months and have gone back to the original. The others were either very uncomfortable or with the slightest movement at night would start leaking. I have tried just about every combination of strap adjustment.

My weight is in the normal range and I don't have any cardiology issues. I don't have a problem with headaches in the morning. I seldom snore and when I do its not loud and stops if I turn slightly on my side.

Since starting to use a CPAP, the only time I have been able to get a decent nights sleep is when I do without it. Air Leaks are frequent and loud enough that they wake my partner up more than my snoring did. I have started napping during the day. I have been back to my sleep doctor a couple of times and her only suggestions were different masks, but on the most recent visit mentioned maybe trying one of the dental appliances.

Using the sleep time software, I can connect many of the sleep issues to mask issues that wake me up.

I am glad that using CPAP has helped so many people but so far it has just made my sleep problems worse.

[woozie38]

Hi Mike, You could be suffering from a condition now known as UARS. It's more common nowadays and is almost invariably diagnosed as "Mild Sleep Apnoea". IMHO there is not such things as "mild" SA. If a person is so afflicted, then he/she has SDB (sleep disordered breathing) & that's that. However the medical profession has difficulty in recognising SDB let alone diagnosing the ailment, & since SDB covers many different sleep disorders the best course of action is to read relevant posts on this board.
UARS or "upper airway resistance syndrome" resembles obstructive sleep apnoea except that there is no obstruction, only a narrowing of the upper airway which instead of causing cessation of breathing, produces instead conditions known as "Hypopnea", & "Flow restriction". Both events are recorded separately but are essentially the same.
Sufferers of UARS don't as a rule experience frontal lobe headaches, but are known to endure "brain fog" and "daytime somnolence", plus endeavor destroying fatigue.
CPAP is essential, as it assists in maintaining an airway by increasing the pressure. But since there is no obstruction, this rise in pressure only succeeds in causing the mask to leak & wake the patient up.
Long suffering patients like me, when this happens, simply turn the machine off. Restarting the machine resets it to its low setting & we return to the business of sleep.
Personally I don't believe there is a cure for UARS. There are several surgical procedures suggested such as UPPP that may help, but my ENT tells me to forget them because they are painful & not very successful. Instead he recommends "Robotic resection of the base on the tongue". He says it has a good chance of correcting the resistance, but the procedure is very expensive, costing AU$5000. just to initiate the machine..
Anyway, take heart mate, the CPAP wont cure your problem, but will help. Stay away from excesses of alcohol & caffeine, & adopt good sleeping habits. You may need to make some adjustments to your current lifestyle, but you'll make it. Good luck.

[mikeindc]

Thanks woozie38, I was venting a lot last night because for three nights in a row I had major problems with the CPAP and currently the only way for me to get a good nights sleep is to not use the CPAP, while I know that I really should use it.

I thought that the CPAP I have, The ResMed Airsense is auto sensing, but I will try turning it off and back on. If I have problems with the mask leaking and spend much time on adjusting it, I am wide awake and not going back to sleep. If turning the machine off and then back on helps with the leaks, I am much more likely to fall back asleep if I haven't been up for 20 minutes adjusting my mask.

Its hard for me to know what is really causing the fatigue as I have several other medical issues and medications which cause fatigue. Since I can't stop those meds, I was really hoping I would see more immediate help from using a CPAP rather than just the long term improvements by avoiding damage to my heart.

[kwhenrykerr]

Mike have you been checked for low T ? It is an easy fix if it is low.

[JenJen]

You should prob have your testosterone levels redrawn in a couple of months as well as a vitamin d level and a thyroid panel. All could cause aching, fatigue, and misery!

Jen Jen ...nurse x 23 years

[woozie38]

Hi Mike, Long term untreated SDB causes ischemia. That is, diminished blood supply to body organs, most notably the brain & the heart, but others can be affected too. Cranial ischemia will cause loss of memory & perhaps that is the very first symptom to be noticed. The red blood cells carry oxygen so if the blood flow is less than it should be, the supply of oxygen (to organs) is less than it should be too.
To compensate for ischemia, the heart increases its size & for the moment the problem is fixed. But continued SDB causes continued ischemia so the heart must again increase its size. Eventually the pericardial cavity prevents further heart size increase & the patient's life is in jeopardy.
Naturally ischemic organs don't function as they should, thus "brain fog" & Fatigue result.
A good night's sleep is not one with nil awakenings, it is one without apnoic events.
MAD's (mandibular advancement devices) don't seem to work & I've yet to try a TSD (tongue stabilizing device) which I feel could work. So other than expensive surgery, judicious use of CPAP is the only option available to us UARS sufferers at this time.
Use Sleepyhead to read your sleep data & post same on this board if you need help with that.
A note on Testosterone. Before taking any hormone, you must have your levels checked. If low then supplements are necessary. I supplement my T using a mixture in a pump applying it to my torso soft skin areas daily. This helps to increase red blood cell count, but I am 78.
Best wishes,