to bonnie and anyone else really.

[sleepypirate555]

Well she kinda asked for my story, so here goes....
When I had just turned 17 I had plenty of energy. I was a competitive swimmer, I trained my own horse, got straight a's, and had a job as a lifeguard. Then it started. I started sleeping all day. Quit my job, quit riding and swimming. Started sleeping thru school. I went to a doc who said I was depressed. My mom kicked me out (tired of my lazyness). Doctor after doctor. I have had a few jobs, I always get fired for sleeping on the job. I went to community college for a while, slept thru that. Quit. More doctors. Same routine. We'd meet, I'd beg for help, some blood work, normal "diet and excercise" was what I needed. When I was swimming I was 150lbs of muscle (coaches measured me at just under 10% bodyfat). I'd gained 60lbs in 1 year and have never lost it. I eat about 1,000 calories/day. This past year I went thru a therapy program. My therapist and I basically forced my 8th doctor to refer me to a sleep study. That doc found moderate sleep apnea. I'm in my 5th week of cpap therapy, a total of 3 nights sans cpap. I never thought it was possible to be more tired after the cpap. I swear I'm losing it. I'm having trouble reading, I'm constantly exhausted. I used to swim 500yards in 5 min and I was LESS exhausted than I am now when I wake up in the morning. My most recent doc gave me provigil to help. It didn't work. I called and he left a message saying to just quit. There wasn't anything else he could think of. He could refer me back to the same sleep clinic who isn't returning my phone calls. I am too exhausted to leave the house except for a doc appt.

So that's my story. I'm wondering, IS there anything to be done? Is it normal to feel worse with each passing day?

the sleep clinic isn't faxing my titration study. I'll keep calling, I'm too tired to drive anywhere. I feel like it's not worth trying anymore. How many docs give up before I do?how long before I'm totally incapacitated?

Anyway, thanx for reading.

[DreamStalker]

You certainly seem to have a well written story, very well articulated and detailed. As long as your thought process is this good you should still be able to persevere and continue to seek help … try more doctors.

“Then it started” … Is there something you can correlate to this period of your life (ie. moving to a different home? ... a new school? … new friends you started hanging with? … a far away trip or weekend camp-out? … a sudden sickness that seemed to come and go? … anything at all that you can remember that was different from before “Then it started”?).

Sometimes you have to do a little detective work on your own and help your doctor(s) out.

Sorry, I was not much help and I hope you do continue to search for a solution to your fatigue syndrome, apnea, depression, or what ever it is that is causing you to feel so badly.

Best wishes,

- roberto

[TerryB]

I don't know of a tricky name to apply to the wall that you hit right after starting CPAP therapy but I can vouch for its existance. I felt horrible for a period of time that I would roughly place at three weeks plus. I believe it is caused by the many waking events to adjust for mask leaks. Remember apneas cause a rise in level of concious to increase muscle tone and POP the airway open. This waking is usually undetected by the sleeper, but I'll bet you notice the waking to mess with the mask. Once I made adjustments for mouth leaks (adhesive strips and chin strap) and switched to Swift from nasal mask I feel much better on a regular basis. I see the card in your "software" and if you're able to read the card you should be seing large leaks indicated in the reports and may be feeling dry throat or messy lips in the morning.

Check up on mouth leaks is my advise.

TerryB

[Bonnie]

Sleepypirate,
Do you have the card reader and are you checking your nightly events? What pressure is your machine set at? Are you comfortable with the mask and as Terry asked, do you wake up with a dry mouth which is a good indication of mouth leaks. My heart goes out to you with all that you have done and enjoyed and then to loose it from OSA, not getting the help and especially your mom kicking you out. You have to be incredibly frustrated and understandably depressed. There are a number of people here who will offer good suggestions for you and we'll try and help you sort this all out.

First off give us your pressure settings, how much sleep are you getting? Are you waking up a lot every night? Did you get a copy of your sleep results, if not please ask for it? All of this will better able us to help to see if your current therapy is consistent with how you were diagnosed.
Bonnie

[kteague]

Sleepypirate- Typed a detailed message and it went "poof", so here's the redo...

1. Whatever doctor ordered your sleep study should be able to give you a copy of the results, but the next message I'd leave for the sleep clinic would include, "Multiple attempts to get a return call have failed. Continued lack of response can only be construed as withholding of my full test results, to which I am legally entitled".

2. Confirm that your apnea is therapeutically treated.

3. Allow yourself a few weeks of unapologetic sleep at every opportunity - you have a debt to repay, and you can't do that by fighting to stay awake all the time. And just getting a reasonable number of hours each night now is not adequate for sleep debt repayment. You have to get more than needed day to day. Provigil was of minimal help to me also. Concerta helped my alertness and focus.

4. If prior steps don't garner results, if you are in a position financially or with insurance, tell your doc that you have an incapacitating illness, and want him to not stop searching for answers until all possible causes for your symptoms have been investigated. Start by checking your study results for LMs or PLMs in case RLS or PLMD is disrupting your sleep. Then if necessary move thru the myriad of non sleep related illnesses as your doc prioritizes those that could cause some of your symptoms (things like anemia, Lyme Disease, thyroid or heart conditions, liver trouble, diabetes, etc). With every negative result, my doc took on a tone of finality. My repeated reply was, "Then what is next?"

You probably can feel better, but it's not likely to just happen. It has to be purposed.

Best wishes.

Kathy

[Ric]

As Bonnie suggested, your Remstar Pro 2 is capable of recording the data. If you don't have a card reader (or a card) send me a PM and I will try go get you started on using the data that is easily available with that machine. But if you are already set up with that maybe you could share some of the details so we can be more helpful, or at least show you how to interpret your findings.

Data is critical to understanding what is going on, and you are entitled to anything that is in your medical record. If they are not forthcoming in faxing or mailing your SS to you, then walk in and request that in writing. They are required (by law) to make that available to you in a reasonable timeframe (usually 5-10 days) at a nominal cost for duplication and mailing, nothing more. If they don't get that to you, then file a complaint under the HIPPA guidelines. IT'S YOUR DATA. There may be additional state laws that apply in Oregon, to your benefit, I don't really know about that.

Without the data, you and your physician and your DME are just guessing about your condition. And keep in mind the revered titration pressure, while useful, is not a gold standard. It is just a sample of you and your breathing patterns for a single night. Most people vary widely from night to night, from season to season, and some (like me) vary widely by the hour on any given night. The pressure may be to low or too high, or too middlin (?) The CPAP machine you have cannot automatically adapt to the changing demands in pressure.

Having said that, assuming OSA is at the root of your chronic fatigue and somnolence that you describe, it should be noted that there might be a LOT of other things that need to be ruled out (and without trying to scare you!) including allergies, chronic infections, autoimmune disorders, cardiopulmonary conditions, toxic exposures, genetic and familial disorders, or who knows what else. You sound like someone who needs a thorough medical workup and not just someone who will bounce you around with their pet medical theories based on general advice (exercise, eat well,etc.) and what they like to do best (write a prescription for an antidepressant). How many decades did it take for the medical profession to be queued in on the reality of chronic fatigue syndrome? Lyme disease? I haven't met any two doctors who agree on everything, and sometimes almost nothing. There is no point in bouncing from doctor to doctor and getting a trail of useless advice (and expenses!). Find one good one who is willing to get to the heart of the matter and won't quit till he does. (hope you have good insurance )

Meanwhile, here's wishing you success.

-Ric

[Julie]

Have you been formally checked for Chronic fatigue syndrome? It is a valid diagnosis these days with a list of specific criteria, and whether or not you have OSA, it might be a good idea to look into it, plus I think you want to push for a consult with a neurologist to be sure there isn't some other type of sleep (or ??) thing going on that just hasn't been found yet. Good luck.

[Issac]

It sounds more like Lyme than just OSA.
I have severe OSA. The "then it happened" just does not fit.
It sounds like more is going on.
Have you ever had Mono?Hep?STD's?Joint pain?

You need a good PRIMARY Doctor who is not afraid to test you for all the above down to allergys.You may have chronic fatigue for any number of reasons or just have the syndrome itself.

I have learned that we have to take responsability for our own health and be the "squeeky wheel",demandng the service we need from our health care provider and speaking up for the tests we should have. Now, with the internet, we can educate ourselves and demand more from our doctors. If you don't, (and this board will support you step by step now that you have reached out) who will ? Keep posting about your progress until everthing is well in hand.

Most plans allow you to change your Primary Doctor every month and they switch you around the first of the month. If you do not have a good relationship with your Primary Dr., switch around. Same with the specialists

[JCraig]

I agree -- severe OSA symptoms are not a sudden "then it just happened" type of deal. I really think you've got something more serious going on. Force your doctors to find it.

[Bonnie]

Sleepypirate wrote:

When I had just turned 17 I had plenty of energy. I was a competitive swimmer, I trained my own horse, got straight a's, and had a job as a lifeguard. Then it started.

By his post it didn't just happen, he sated "then it started." Without knowing the time frame and yes, there could be a multitude of other health related options to consider, I think getting Sleepypirate started on proper OSA therapy is a good way to start eliminating causes. If he does find a great primary doctor it would be to his benefit to have eliminated inadequate OSA treatment. I just don't care to see the suffering when it might just take getting the equipment set properly to start. Then other options can be explored.

[sleepypirate555]

Do I sound like a boy? I'm a girl. Sorry I didn't say! Many have suggested finding a good doc. How do I do that? I usually gat recomdations from friends or insurance. I don't know how else to do it? I have a smart card thing, but there's no way to afford a card reader. My medical bills are piling up so fast..... One of these days, when I have the focus/evergy to drive, I'm gonna go to the sleep lab and demand my titration study. For now my plan is to sleep (with the cpap) as much as humanly possible, my husband called and left a message for my doc. When he calls back, my husband will have a few choice words. Not a screaming match, but he will explain how it's innapropriate for a doc to give up. Anyway, I have had mono and joint pain, mono when I was 19 and joint pain since swimming WAY too hard. But I'll push for a lyme disease check anyway. Some have suggested chronic fatigue, but I have read there's very little treatment and no cure, does anyone know what the treatment is? Maybe I'll try it.

Mostly, I just wanted to say thanks. You guys have saved my life. All of u are incredible. Oh and coincidentaly, bonnie is my mom's name. Ha ha. My mom and I are fine now. After an official dx of osa, she apologized. I don't live w her cause I'm married. But we chat when I can and I visit when I can.

Thanx thanx thanx

[KansasRT]

Fibromyalgia is another diagnosis to consider with similar symptoms to OSA. Alot of people with fibromyalgia end up with a sleep apnea diagnosis. Do an internet search on fibromyalgia and check the symptoms with how you are feeling. Sleep Apnea aggravates fibromyalgia and makes the symptoms worse. I am not trying to diagnose you with anything, just trying to offer a suggestion.

[lvehko]

sleepypirate --

I'm in day 71 of my CPAP treatment and it has only been within the last week that I've begun to feel somewhat 'chipper' during the day. I had a lot of the same feelings/questions as you do in the previous couple of months -- felt tired a lot of the time, some days seemingly worse than before therapy, tangled for weeks with trying to find a mask I could actually tolerate, spent some time trying to figure out what my data meant and how to fix it, etc. etc. In short, I do think for some of us it takes a while to start feeling better. A lot depends on how long you have had the apnea -- if it's been many years, I think it can take quite a while to catch up on all the sleep you've missed and start to feel better, and in the beginning of CPAP, few of us start sleeping well on day one, what with getting used to the mask, the machine, etc. I would say to give it a couple more months before throwing in the towel.

As to the question of there being perhaps another cause of your fatigue, I think the previous posts suggestions are good ones. If there was a sudden onset, that may point to another condition that could be underlying the problem. For me, when I look back (I'm 45 now), it *seems* like I "suddenly" started sleeping all the time and feeling awful during the day around the age of 14, but it probably was not as sudden as it seems from 31 years later. Depending on how old you are now, your recall of how quickly the symptoms set in may be shrouded in the mists of time, like mine. But I would say that, the more sudden the onset of symptoms was, the more likely it is that there is an additional condition causing your fatigue.

That said, you *do* have apnea, so even if you have another condition, treatment of the apnea will likely still be part of your regimen. If you have an additional condition, it's going to be tough to tell how much PAP therapy is helping, but checking your data from your machine is a good place to start. Since you're using a full-face mask, mouth leaks is probably not a source of problems, but people vary greatly in how different masks work for them. I never could get very good results (according to my machine data) with a full face mask, so now I use a nasal mask and tape my mouth, which is not as bizarre as it sounds. I'm not familiar with the REMstar machines, but on my machine, I can get daily data on leak rate, and HI and AI indices. I'd say check those results and keep a log of them for a while to correlate to how you feel the next day. If you're getting consistently lousy results data off the machine, it might be time to try a different mask, or work with your pressure settings to see if that helps.

Keep us posted -

Minerva

[cpapjack]

messy lips in the morning.

What exactly do you mean by messy lips? I use the Activa along with a chin strap and my leaks range between .08 - .36. I don't have rainout as my hose goes up over my headbaord and there is no water in it in the mornings, but I do wake up with a wet mouth.

[lvehko]

messy lips in the morning.

What exactly do you mean by messy lips? I use the Activa along with a chin strap and my leaks range between .08 - .36. I don't have rainout as my hose goes up over my headbaord and there is no water in it in the mornings, but I do wake up with a wet mouth.