If fatigue doesn't improve I give up !!

Spirit wrote:Hi everyone,
Haven't been visitng the forums much. I'm just severly stressed out !! When all was going so well, only to slide downhill. Now, I'm having an issue with my arm, disconnecting hose from elbow during sleep. I'm sleeping so wild, my cpap fell, hit the floor. Probably need a 12'-15' foot hose, for solution.

But my major complaint is fatigue !!!! Alot has improved, and so has fatigue, I'm no longer bedridden, but still not able to function, as I would like too. My energy is wiped out after 2-4 hours of activity. I'm in between fatigue and normal.

Had thyroid, diabetes & Vitamin B12 tested this month, all return normal. It's been nearly 6 months, and I just feel cpap is not working fast enough for me. It's very difficult watching each day go by, hardly no productivity. Boredom is driving me insane

Has anyone been bedridden from sleep apnea, return to normal ??

I feel like I'm in a coma, but awake. Mentally I feel fantastic, but the rest of me, feels like 3000 pounds, which has improved greatly from 5000 pounds. I go to bed, wake up feeling exactly the same, blah !!!!!!

Sorry, had to vent, but I'm about fed up with cpap. I have no problems using cpap, I look forward to using cpap each night, but the results are frustrating the he!! out of me.

It's like taking a med for diabetes, that hardly works.

I sure could use some encouragment.
Thanks

Have your total/free testosterone tested......

Spirit, this sounds a lot like chronic fatigue syndrome...have you checked that out? I understand that some people with Lyme disease have symptoms like what you describe. Just a few thoughts.

Have you considered video taping your sleeping over several or more nights to SEE exactly what you are doing or not doing? You can do this with various camcorders that have low light capability, some even infra red, or you can use a simple web cam tied into a computer and use a night light, or you can use a surveillance camera, which can also tie in to a computer and record your time in bed onto a hard drive. Surveillance cameras with good IR vision are a lot lower in price than video cameras (but not as good resolution but more than good enough) and so you won't have to sleep with room lights on, as you might have to with a less expensive web cam or a more expensive video camera. Here is one such system that use IR and with no wires to trip over and it's pretty inexpensive for all that it can do.

http://www.amazon.com/Uniden-UDW10003-W ... 201&sr=8-6

I've had success with APAP/CPAP but I was often still tired and my numbers were up and down and it took me quite a while to figure out what might be going on. Eventually I figured out that even with APAP, over quite a narrow or wide range of pressures, I still had apneas and then figured out that it was due to the sleeping position of my head and not just my body. If my head position is on or nearly turned to the back on the pillow, then apneas occur. And if the pressure goes up, I get more Centrals recorded and more Hypopneas, and again I feel tired. If i had video taped myself I believe that I would have seen this problem years ago. I'm now working on ways to keep my head from turning onto the back and it's working very well. I've still got a few small problems with mask leaks when I do want to turn my head / body but I've had some really good days and overall better than with just PAP alone to try and deal with the apneas.

My surveillance camera system should be here in the next few days and I'll be recording my sleep ASAP and then studying the video with great interest.

Perhaps positional apneas are "part" of your apneas or like me, they could be a huge part. Either way, it could be worth investigating and you won't know until you study your own sleep over enough nights to be be certain of what are or are not problems. Otherwise, it seems to me that you and we all are, just guessing at what might be going on in your situation. I've found that I don't need that much disrupted sleep from apneas, hypopneas or centrals or snores or runs, to end up feeling tired. IF I was satisfied with a "standard" acceptance AHI of 5, I'd be a zombie. For me, it seems that sleeping on my back is the main problem for increased apneas and fatigue.

Good luck.

Hi Mtnviewer

Good to hear from you again.

Are you saying that - sleeping on your side - you try to make sure your chin is pointing downwards towards your chest?

Or are you meaning something else?

The sentence I am not clear about is -

If my head is on or nearly turned to the back, then apneas occur.

cheers

Mars

Muse-Inc wrote:Spirit, this sounds a lot like chronic fatigue syndrome...have you checked that out? I understand that some people with Lyme disease have symptoms like what you describe. Just a few thoughts.

When I worked for one of the only MS Comprehensive Care Centers in NJ at the time with 5 neurologists on staff, we had several patients who came for consultation and were found to have Lyme Disease and not MS. Severe fatigue is one of it's major symptoms and if I remember, it's treated with antibiotics. It might be worth checking out if that hasn't been done. We're pulling for you.

Hi Mars: I mean that I get GREAT results from sleeping on my side vs. on my back / supine. My head position must be on it's side. I haven't worried about the chin position "yet", but I do think that a lowered chin could restrict the airway, so I do try to keep it horizontal. So my above explanation is not clear to you.

I don't know what it is about my body during sleep, but it very often tries to get onto the back or into a supine position, even if my head is on it's side (which I'm working on restricting from moving, which is how I know). If my head is not completely turned onto it's side (my cheek), then obstructive apneas start to occur. If the back of my head is on my pillow, then I get many more apneas and the pressure has to rise to try and counter act the increase in apneas. If I use CPAP at higher pressures, then I get more centrals and hyponeas recorded.

I too felt like I had a chronic fatigue situation as I could not figure out why APAP or CPAP was not helping me more, unitl the positional OSA penny dropped for me. I always started out on my side and woke up in the a.m. on my side, but during the night I shifted one or more times and that is when I'd have many more apneas, snorings, hyponeas etc., meaning more "wakings", even though I wasn't waking. But I'd be quite tired the next day.

I hope that this better explains my situation, and I'd bet that it's more common amongst us than not. I've had FAR greater success and rest from dealing with OSA this way than by just increasing PAP pressure. Both together have been amazing for me on many nights/days, but I have work still to do to with my head restraint contraption.

I don't mean to hijack this thread to my situation, but I just mean to suggest an exploration of positional OSA to Spirit (and others).

Klonopin is a benzodiazepine

I ran into this sight when I realized a family member was badly addicted to a benzo.
I suggest you use your now alert brain to study this site. They have a forum too.
You will find many people sharing your fatigue on this site -- fatigue caused by protracted withdrawal symptoms from benzodiazepines.
http://www.benzo.org.uk
http://www.benzo.org.uk/ashtonad.htm
http://www.benzo.org.uk/manual/bzcha03.htm

O.

I admit not having read this thread ---- but have you done overnight pulse ox and see the actual 02 levels?

Lyme is a reality too and the best test won't normally be the one that most docs use (Quest Labs)- the lyme forums suggest IGeneX I think. Lyme in its early stages can be treated easily with antibiotics but the longer it stays around the harder it becomes to treat.

Protracted withdrawal, while fairly uncommon, does exist for people who have been on benzo's and z-drugs. Some people will eventually recover and others will be left with the withdrawal symptoms for years and perhaps life.

You need a family MD that is going to advocate for you or you are going to have to educate yourself and do it yourself.

I can tell you that after three violent rear end car crashes I have serious lower back damage that causes me pain day and night and has done for some years. The MD's started me on Tylenol 3 then to Percocet and finally to Oxycodone (stay away!) which is 10 times more addictive than heroin. My issue was that no matter what pain medication I took I only got 3 - 4 hours of relief. They pumped me up so I was prescribed Chlonazepan to take with the pain meds every 4 hours, 24 hours a day. I was an addict and didn't realize it. When I educated myself and told my MD that I was going to wean myself off the whole shebang he just about filled his pants and insisted that I go to a methadone clinic, etc. I refused and over the past year or so have eliminated the oxycodone (like coming off heroin), eliminated the Oxycocet (at 4 hours pain returned and at 5 hours I was getting ready to start rethching from withdrawal but I perservered) and am now on Tylenol 3 again as needed and I am able to take it only when the pain gets to the point where I am not functional. The chlonazepam is almost at zero as well. WHAT a difference. I feel like I have a life again. I am not groggy all the time and can function normally. My MD is amazed that I was able to do this on my own.

Over the summer I was on life support and in bed for a month flat on my back as a result of H1N1 and then acute pneumonia. I was code blue twice and am here only by the Grace of God and good clean living. As a result I have sleep apnea especially when I get down to REM sleep which is a first for me since getting the APAP/CPAP machine. I am a relative newbie with the CPAP but am learning. If you move around a lot you may need to string two hoses together and hang them so that the come down smack in the middle of your pillow so that you can roll over either way or sleep on your back.. which is where the APAP machine comes in. You need the right settings in terms of pressures and it should take care of the obstructions in all events. A protracted apnea event should set off an alarm and wake you up (I have mine set to do this but it has yet to do so).

So what do I predict? Firstly, let me say that I am sleeping better now that in the past ten years and that alone is giving me a degree of greater energy and alertness during the day... frustrating because I am still trying to recover from almost a month on life support and two weeks plus in a coma.

All I can tell you is to have some patience. It is not a rapid process. You need overall care and advice so get into a rehab programme. You will give up tea, coffee, smokes, alcaohol, etc. You will give up eating later at night and you will learn 'how to sleep' all over again. No noises of anykind whatsoever. No light. Blinds closed so early morning light does not disturb you. Perhaps as we did window replacements so that we no longer hear any street traffic, animals or people. Getting the picture?

You may find that you need to adjust what you are using for bed linens and the temperature in your bedroom..... to keep from moving around and help get you to REM sleep faster. I sleep best in a cool room with light fluffy bed linens to keep me warm that I can throw off as needed. I take my Tylenol 3 and chlonazepam the moment before I hit the sack for maximum results and sometimes don't even wak up in pain during the night

Above all, do NOT give up. This is a total restructuring of your lifestyle and it takes time. Baby steps or as my friend loves to say to me "How do we eat an elephant?" One bite at a time.

You will get better. promise.

Hi Everyone,
Thanks for supporting replies. Sorry, I cannot reply back to each individual, but I have read all the posts. Although my cpap treatment began 5 months ago, I've had a really rough 3 years, dealing with health stress, mainly fatigue. It really hit me hard this week, seemed 3 years just came crashing down on me, and no strength to carry on. I've been fighting fatigue nearly 3 years, hardly being producticve and just cooped up all the time, not having the energy to do anything.

Feel like, I'm just passing time in a prison cell (bedroom), with no energy to do anything. I am grateful for the improvements, I've experienced with cpap, and trying to be more patient, tried to order a card reader and cpap is out of stock. It will hurt me financially, but will be an investment benefit for the future. So that's a positive to look forward too.

I was about to toss my cpap in the trash and give up, but honest truth is, I haven't done enough experimenting to fine tune my equipment to benefit me. I did alot of reading last night on EPR, and decided to turn mine off and today, feel lot's better. My data is not better, but I feel better.

That's something else that baffles me, is when my data is good, I feel horrible, when my data is bad, I feel much better. But let me get the card reader, and keep truckin along. Thanks everyone.