Its not a "journey".

[49er]

Its a forced march through jungles and deserts, leading to labor camps or a ravine.

and having a crappy attitude just makes it much worse.

Sometimes the crappy attitude is a result of slogging through a truly bad situation where it seems like the "light at the end of the tunnel" never materializes.

In my case, I did my best to "keep my chin up and stay positive." But at the same time, I was dealing with some very severe and nearly debilitating symptoms that started after I started CPAP. For the first 6 months of PAPing, I felt more tired and exhausted than I have ever felt in my entire life. I'd never been very sleepy during the daytime pre-CPAP; within 1 week of starting CPAP I was so sleep deprived from adjustment problems that I was scared to death of falling asleep while driving that I had to have my husband drive me everywhere. I was literally falling asleep while teaching mathematics standing at the board. Colleagues were asking me why I looked like death warmed over and I had to resign from several department and college committees because I just could not function. Yes my adjustment really was that bad. And at 3:00 and 4:00 AM when I was unable to get to sleep due to severe aerophagia and I was angry enough to scream bloody murder and throw the machine across the room, it was not possible to get rid of my "bad attitude" that this therapy really sucked and was ruining my life.

There are only two reasons I made it through those first six months of hell and the second six months of purgatory:

1) My husband: God bless him for putting up with my screaming, crying, temper tantrums at 3:30AM, driving me everywhere, and dealing with the phone tag with the sleep doc's office.

2) The kind folks here: Folks who let me whine when I needed to without making fun of me or accusing me of being a troll or telling me that I needed to just try harder. I was getting more than enough "Just Try Harder" from the PA in my first sleep doc's office at the time and I didn't need more of it from the folks here. I also got a lot of help from folks who continually gave me high quality suggestions to try when I described my sometimes bizarre sounding adjustment problems, and who didn't seem to mind when I would explain why their suggestions didn't work for me. And folks who told me just how lucky I was to have such a wonderful spouse who was willing to put up with all the crap I was dishing out at the time due to severe sleep deprivation. And folks who repeatedly simply tried to cheer me up on my worst days, sometimes with funny stories of their own difficult adjustments.

Robysue... I wish we could make your post a sticky. Of course so people having a really hard time can read it, but more for the people who constantly say to pull up your britches, quit your bad attitude, and move along. They are always the Same People and you can always count on them to say the same things they always say to people. I suppose there are people who respond to, "tough love", but the vast majority don't. It's so easy to say negative things to people on the internet, but why? What do they get out of it? Do they honestly think they are helping someone who is obviously distraught as a result of trying to make this therapy work, or whatever reason.

Fortunately, I got responses from people who encouraged me and didn't belittle me... even when I asked the same question a second time. And, one person stayed on the phone with me until I had Sleepyhead up and running! Just recently I was having a problem and PMed a person here; he answered my question without making me feel like a fool for asking it. He didn't find it necessary to tell me that my question had been asked and answered 23,000 times before. He just answered my question without making me feel awful about asking it.

I'll never understand why nasty, mean spirited people reside here!

PS Thank you for your post and for all your posts over the years. I hope Noctuary has had a chance to read it.

Unfortunately, it isn't going to matter Lucyhere. People who want to hate will continue hating no matter what. They are not going to change. But I do agree Roby Sue's post should be a sticky and I thank god, she is back on this forum.

Noctuary, is there anything you have noticed that makes the fatigue worse such as particular foods? Anything that makes it better?

[Noctuary]

Noctuary, is there anything you have noticed that makes the fatigue worse such as particular foods? Anything that makes it better?

Nothing I can see. I'm just tired everyday.

[Noctuary]

If you want to die and are suicidal call the suicide hot line 1-800-273-8255. That is a step towards help with that. You have to want to do for yourself though.

They can't help me sleep.

[49er]

Noctuary, is there anything you have noticed that makes the fatigue worse such as particular foods? Anything that makes it better?

Nothing I can see. I'm just tired everyday.

Would it be possible to keep a log? I know that is hard to do when you are tired but you might find it beneficial.

49er

[Sonnyboy]

If you want to die and are suicidal call the suicide hot line 1-800-273-8255. That is a step towards help with that. You have to want to do for yourself though.

They can't help me sleep.

Noctuary,

You started this thread talking about suicide which is very serious and why you have been provided with the suicide hot line and suggestions to consult your doctor regarding depression.

The cause of fatigue and difficulty sleeping can be difficult to diagnose so the suggestion of keeping a log is a great one.

Robysue has reached out to you and she is an excellent resource.

You have expressed problems with your computer and sleepyhead and this forum is full of computer experts who can help you with this if you ask. Monitoring treatment is really important when you are having ongoing problems with sleep and fatigue.

So you have been provided with lots of ideas, it's up to you to decide where and when to start, and people tell you this to help you not to be mean to you.

[Julie]

Hi, you said you don't want antidepressants, but I feel you may be cheating yourself in that you're possibly denying (or don't understand) that you are likely quite depressed, but blaming it all on lack of sleep (a big symptom in depression). The idea for so many in trying (just trying for at least 2 wks - the min. needed to feel effectiveness) anti-deps is to allow you to get some perspective, to give you the pick-up you need to see some of the trees in your forest and possibly be able to move forward, get new, unexpected answers, etc. etc. The fact is you're not feeling better, and even if our suggestions don't seem to help, what's to lose by trying this one out? Do you really want to keep going around in the same pointless circles? Do you not want to feel better? Sleep may be a big part of your remedy, but it may not be all even if you think you've tried 'everything' possible, and quite honestly I doubt that you are objective at this point, and have so convinced yourself it's all about sleep that you can't fathom the possibility of anything else helping. So sad and such an unecessary waste of your time.

[Snoopchic]

I understand your frustration and I'm sorry you are going through it. I'm just trying to start and I can't get past my doctor. It's been 2 weeks and he still refuses to release my slew study unless I use the company he wants me to use. I am already beyond frustrated!! I had a horrible experience at the sleep study, and the pain in my ears and head was almost unbearable for 4 days after the sleep study. Have you checked with a dentist to see if you can use the dental appliance? I've already check on one, because I'm concerned I won't be able to use the CPAP. I can't use the sleepyhead app because I only have a cell phone and iPad, I don't have a computer also, you may want to check with an ENT to see if there is something causing you to have problems with it (like a deviated septum) I'll keep you in my thoughts! I'm just starting and already know the frustration!

[stienman]

Two years now of this "journey". Lost my job, nothing to look forward to but days rolling on days of unending fatigue.

From your other thread it appears you've significantly reduced your apnea events, and for all intents and purposes your sleep apnea is under control using the therapy you're on.

So it looks to me like you have other unresolved health issues beyond sleep apnea.

I have friends suffering chronic fatigue, it's life altering, and the source can be hard to diagnose and even harder to treat.

I'm glad you got the sleep apnea under control, but please don't give up on life because you find that knocking one pin down doesn't win the game. We would all love for a cure-all, but I know I have multiple medical issues, and I suspect many here, if not most, are juggling multiple things that affect their quality of life.


Keep looking for additional causes, take one day at a time, and see if you can knock down another pin. It might not resolve your fatigue either, but it'll get you that much closer.

[Gasper62]

Just a thought, have you had your thyroid function checked ? Might be a cause of MANY symptoms, depression being one. Good luck ! Video advice: https://youtu.be/-ECUtkv2qV8

[Noctuary]

Hi, you said you don't want antidepressants, but I feel you may be cheating yourself in that you're possibly denying (or don't understand) that you are likely quite depressed, but blaming it all on lack of sleep (a big symptom in depression). The idea for so many in trying (just trying for at least 2 wks - the min. needed to feel effectiveness) anti-deps is to allow you to get some perspective, to give you the pick-up you need to see some of the trees in your forest and possibly be able to move forward, get new, unexpected answers, etc. etc. The fact is you're not feeling better, and even if our suggestions don't seem to help, what's to lose by trying this one out? Do you really want to keep going around in the same pointless circles? Do you not want to feel better? Sleep may be a big part of your remedy, but it may not be all even if you think you've tried 'everything' possible, and quite honestly I doubt that you are objective at this point, and have so convinced yourself it's all about sleep that you can't fathom the possibility of anything else helping. So sad and such an unecessary waste of your time.

It is all about sleep. A person can tell when they haven't slept well; its just something one knows. The desire to sleep more or sleep deeper tells one that. Any depression I have is simply due to the fact that I am tired. Tired. Tired. Which would be okay if I was wealthy, but as I'm not I have to face this world and work saddled with this chronic fatigue. Yes, that's depressing. Added to that are the numerous studies that show antidepressants are no better than placebos, and the side effects often include fatigue. My (former) gp prescribed Cymbalta, a drug which side effects include.....fatigue. A psychiatrist I visited in September thinks I just need to get out and socialize (yes). The psych I saw last week said the same.

Kobayashi maru.

[Noctuary]

Just a thought, have you had your thyroid function checked ? Might be a cause of MANY symptoms, depression being one. Good luck ! Video advice: https://youtu.be/-ECUtkv2qV8

Yes, it was normal.

[Noctuary]

From your other thread it appears you've significantly reduced your apnea events, and for all intents and purposes your sleep apnea is under control using the therapy you're on.

So it looks to me like you have other unresolved health issues beyond sleep apnea.

I have friends suffering chronic fatigue, it's life altering, and the source can be hard to diagnose and even harder to treat.

I'm glad you got the sleep apnea under control, but please don't give up on life because you find that knocking one pin down doesn't win the game. We would all love for a cure-all, but I know I have multiple medical issues, and I suspect many here, if not most, are juggling multiple things that affect their quality of life.


Keep looking for additional causes, take one day at a time, and see if you can knock down another pin. It might not resolve your fatigue either, but it'll get you that much closer.

Whatever it is, it came on literally overnight. I slept great for years until one day I woke up exhausted.

Anyway, I don't have a job or insurance now.

[Noctuary]

I understand your frustration and I'm sorry you are going through it. I'm just trying to start and I can't get past my doctor. It's been 2 weeks and he still refuses to release my slew study unless I use the company he wants me to use. I am already beyond frustrated!!

Fuck him! You paid for it, its your goddamn study; don't let him jerk you around.

Have you checked with a dentist to see if you can use the dental appliance? I've already check on one, because I'm concerned I won't be able to use the CPAP. I can't use the sleepyhead app because I only have a cell phone and iPad, I don't have a computer also, you may want to check with an ENT to see if there is something causing you to have problems with it (like a deviated septum) I'll keep you in my thoughts! I'm just starting and already know the frustration!

I don't have insurance or income so I can't do that. But you can buy a cheap refurbished laptop from Amazon or Ebay. That's what I did so I could use Sleepyhead. However, I think my laptop is a craptop; cuz sleepyhead just crashes now.

[BlackSpinner]

Just a thought, have you had your thyroid function checked ? Might be a cause of MANY symptoms, depression being one. Good luck ! Video advice: https://youtu.be/-ECUtkv2qV8

Yes, it was normal.

Low normal? or high normal?

If it was low normal follow it up. My daughter has all those symptoms at low normal. She manages her meds by how she feels, not by what the numbers say.

[robysue]

I understand your frustration and I'm sorry you are going through it. I'm just trying to start and I can't get past my doctor. It's been 2 weeks and he still refuses to release my slew study unless I use the company he wants me to use. I am already beyond frustrated!!

Fuck him! You paid for it, its your goddamn study; don't let him jerk you around.

+1

Noctuary is right: You paid for the study and your medical records belong to you. And you have the right to use whatever company you want to use to obtain your equipment. Your insurance company has the right to tell you that they will pay for the equipment only if you use company XYZ. But the doc has no right to tell you what DME you must use.

Call the doc's office every day and be a nag about this if you have to. Be polite, but firm. Tell the receptionist who answers the phone that you want a copy of the sleep study for your personal records. If she starts in on the "we'll send them to you after you get your machine from Company ABC", remind her that you are entitled to a copy of your test results and that right now you are investigating the in-network DMEs for your insurance and that once you decide where you want to get the equipment, you will let them know where to send the script.