I came on today because I tried the CPAP study and it went horribly.

The mask was fine on low pressures but I couldn't sleep deeply because I felt like I didn't get enough air.  As the pressure rose I had trouble with exhaling so they put it on bipap.  I felt like I was going to die.  I could get my lungs filled about 1/4 when the pressure stopped and felt like it was sucking air OUT of my lungs.  I was jittery and starved for air.  I told him I couldn't fill my lungs and asked about increasing the interval and he said that would be a different machine called a vpap and the insurance probably wouldn't cover it so he said he wasn't going to put me on it.  After two more masks (the first one was fine) he said I could go ahead and he'd write it up with the mask and pressure I had for the few hours of sleep I got.  That was the sleep that woke me up with chest discomfort.  I was concerned because I gave up sound, deep, oxygenated sleep I had for the majority of my sleep the first test for a titration that gave up before I hit the deep stages where I was having apneas and desats.  On my first test I didn't start major desats until deep sleep around 4 AM.  By 4 AM on CPAP the tech had unhooked me and sent me home.  First test was majority above 90% with some severe desats in deep sleep.  On CPAP I never got to the deep sleep and didn't get good oxygen during the sleep I had.

No way am I trading a night of 90% at or near 100% oxygen with a few dips to 84, for night after night of never having 100% on a pressure based on a period of lighter sleep where I didn't have desats to begin with.  CPAP was just making things worse.  I'm much more tired than usual.  People who use CPAP are either a) completely different from my apnea, b) saints, or c) fools.  IMHO I'd be a fool to make the tradeoffs to use CPAP.  I could feel the damage to my body from the lower oxygen.  At least without CPAP most of my night is oxygenated.  With it I feel like my body is suffocating.

I'm sorry to see you go.  I knew you would be upset about "censorship" but you need to be aware that the great majority of people who come here for help do not have the ability that you have to understand the medical studies that you have found to justify your views. They come here for help, read a few lines, and then might go and use something that may be doing them harm. It's not that your information isn't valuable, but this forum just isnt the place for it.  You seem to be a good person, but you are determined to diagnose and treat yourself . Please take some time and find a medical professional that you can relate to on your terms and can trust.  I once had a dentist who did  a root canal on himself because he said he was the best dentist he knew.  Maybe so, but he needed to learn to trust others and so do you.  Your life depends upon it.  Good luck and God bless, Virginia

No problem.  It was nice meeting you.  I'd offer the same advice to you though--about not simply accepting what you are told.  That sort of thing has ended in many deaths.  It's amazing the barbaric treatments offered with no regard for the known side effects while the new stuff gets ignored.  I'm be amazed if anyone who couldn't understand the research used it to decide their care but that in no way justifies hiding the options.  It's like the Church keeping the bible in Latin so no one could read what it actually said for hundreds of years on grounds they might "misinterpret it."  Thanks but I'll take my chances.  It IS my body and I will fight for the right to be involved in my care to my last breath.  I'm much more concerned about preserving my health than bruising some egos.  I tried to offer my research because of the vast numbers of people who will not get tested or treated for apnea because of the barbaric, wing and a prayer treatments available not to mention the people desperately trying and failing with CPAP and not understanding why.  If the forum wants to protect those people from a safe, well-researched option that might have saved their lives, the deaths won't be my fault.  

I've been told how an herb isn't the same as the neurotransmitter (btw vitamins, minerals and other nutrients have similar roles) yet people are reporting the overdose effects of the neurotransmitter as a "side effect" of the treatment.  Which is completely untrue.  Side effects are things that may happen at normal doses.  Serotonin syndrome is an overdose and it's associated with SSRIs (antidepressant drugs okayed by FDA and sometimes prescribed for apnea) despite the knowledge that SSRIs can be cause fatal side effects when taken as directed.   I offered information which was countered by false statements and the whole discussion closed off despite being far safer than the things that are accepted.  

*shrug*

If, in 50 years, CPAP isn't regarded in the same light as "bloodletting", and SSRI's as illegal and dangerous as fen-pen and cocaine, and some form of serotonin replacement or adjustment of the serotonin systems is not the gold standard for sleep apnea, I'll eat my hat and kiss the little footsies of every person on this forum.

I'm just posting back to let you know I did read your post, but again, God bless and Goodbye.  Virginia

virginia57 wrote:

I'm just posting back to let you know I did read your post, but again, God bless and Goodbye.  Virginia

I'm just deleting some stuff.  Anyway.  Good luck with your granddaughter and goodbye.

To thewriteone,

I am sorry to hear about your experience last night. I can understand that it was difficult to use the PAP. Many people report difficulty, especially on the first night. It takes time, practice, and adjustments for many, if not most people, to get the treatment working well. It took me about two weeks (while sleeping on the couch) to be able to use it. In any case, good luck to you and your family.

Guest MJ

positive thinking and the accepting of expert advice is essential to get used to using a CPAP, none of us like them, we all wish there was something more comfortable and some treatment that didnt make us look strange when wearing the mask

however, CPAP users will live longer


_________________
respironics comfort gell mask,resmed S6 lightweight CPAP, pressure 10 no humidifier
NO DOCTOR EVER ASKED ME IF I SNORED

lynn321 wrote:

positive thinking and the accepting of expert advice is essential to get used to using a CPAP, none of us like them, we all wish there was something more comfortable and some treatment that didnt make us look strange when wearing the mask

however, CPAP users will live longer

Sorry.  I need to sleep.  I don't believe that invasively forcing pressured air into the nose and mouth to force open the throat tissues 8-10 hours a day, 7 days a week for life can possibly be done without side effects known and unknown that are likely more severe than my apnea.  Besides, I spent most of my night getting good oxygen with a few drops which I restarted breathing on my own.  On the mask I spent no time sleeping deeply, no time at full oxygen, woke exhausted and didn't even stay asleep so they had to end the titration before I even hit the sleep where I was having apneas without the CPAP.  IMHO I'd be insane to accept that sort of senseless damage risking worsening of my asthma, GERD, sinus problems, throat problems, etc. for those kind of "benefits".  If some people are willing to play that kind of medically-approved russian roulette with their health it's none of my business.  I'll pursue my other options quietly and take my chances on nature righting itself given half a chance.  

Maybe I'm dead wrong and you'll all be laughing at my grave.  I'd much prefer that risk over killing myself doing what someone else told me to do against my own judgment.  Ultimately we all have to make our own decisions and life with the consequences.  I hoped to share my views but apparently speaking positively is considered unacceptable.  Well, actually, I don't even understand.  I hear people GLOWING about their CPAPs (even when they admit how frustrating it is and how much damage it is causing their throats, ears, etc.) and being condescending and intimidating to the people who don't find it helpful or who find it detrimental.  The difference seems to be what is standard and what is standard seems to be reinforced, in my experience, by driving away or blaming people with bad results and locking threads reporting benefits that aren't supposed to occur.  

And honestly, I'm sorry to say it but I don't believe CPAP users will live longer, just die of side effects from CPAP instead of side effects from apnea.  The throat and lungs are not designed to withstand that sort of pressure and constant wind.  I know.  I have several relatives that care for people dying of the machines that keep them alive.  And frankly I think apnea can be managed effectively and non-invasively but that possibility can't be discussed or the thread will be deleted.  

To each his own.  Peace.

Guest MJ wrote:

To thewriteone,

I am sorry to hear about your experience last night. I can understand that it was difficult to use the PAP. Many people report difficulty, especially on the first night. It takes time, practice, and adjustments for many, if not most people, to get the treatment working well. It took me about two weeks (while sleeping on the couch) to be able to use it. In any case, good luck to you and your family.

Guest MJ

Thank you for the thought.  Having tried the machine I can't get past the suspicion that it's the modern equivalent of mercury treatments for syphilis.  It's somewhat effective at reducing apneas but creates a whole new set of equally serious risks about which little or no research has been done.  I prefer to pursue safer options.

I'm glad it has proved helpful in your case and hope you won't suffer serious damage from longterm use.

I understand that you are going to seek alternative ways to treat your OSA, but comparing it to blood-letting, and Mercury usage to treat Syphillis is ludicrous.  Air blowing into your "Airway"  is not going to cause the majority of users any problems.  I use a CPAP machine without flex, on 17 cm h2o and feel better than ever.   Maybe you just have issues... Good Night & Good Luck.

I find myself a little confused.  I don't want to offend anyone.  I am confused because the
name of the forum is "apnea support", not "living with cpap" or "my life with cpap" or even
"love affair with cpap."  So, I am a bit confused why discussion of "all things apnea"  wouldn't
be a part of the conversation.  There is something a bit sinister, sort  of like Respironics
or ResMed owns the board, which I don't think is the case.

I have posted quite a bit under "guest" but haven't gone into a great deal of detail about
my problems.  I find myself in a great deal of agreement with "the write one" and would
like to correspond by e-mail with you, if you see this.

I have really enjoyed this board, and have spend hours here reading old posts and new ones.

It does seem that some of you have been "baptized by air" and that's fine; what works
for you works for you.  But if you've ever been prosleytized to by a fundamentalist, or
even bombarded by a "vegan", then surely you can see how some of this could appear.
I for one, believe there is rarely, if ever, one path and one path only; or one size fits all,
for anything in this life.

For everyone else but the original poster who has hopefully gone on to the “treat yourself board”,

To clarify some misconceptions, a CPAP simply provides enough pressure to open the airway.  It is not a ventilator, it does not breath for you.  It is passive, you still have to breathe.  Long term ventilator use is very detrimental and has serious side effects (however the alternative is not attractive to most people).  To reiterate, a CPAP is NOT, a ventilator or PEEP (Positive End Expiratory Pressure) used with ventilation and therefore does NOT have the same side effects.

CPAPs have been in use since around 1985 and there have been no studies, to my knowledge, documenting any negative effects from specifically CPAP therapy.   If any one knows of any peer reviewed and published studies documenting deleterious side effects of CPAP use, certainly please post them.

Of course there are volumes of peer reviewed medical studies showing the the positive effects of CPAP therapy starting with the protection against cardiovascular disease and subsequent heart attacks and strokes.  So many other disorders have been associated with untreated apnea.  To name a few, heart arrhythmias, nocturia, headaches, fatigue (duh), memory and concentration problems, weight gain (sleep deprivation causes weight gain for several physiological reasons), there is a link to diabetes, there is a link to GERD, night sweats, depression, anxiety (each apneic event is a true suffocation and elicits the "Fright or Flight" adrenalin response), Fibromyalgia-like symptoms, impotence, relationship and job issues, car accidents, etc.

For a link to a few peer reviewed medical studies go to the following link.  It is by no means an exhaustive list.  If you go to PubMed (where all peer reviewed medical articles ever published in the world are archived) and put “sleep and apnea and cpap and therapy” you will retrieve 1818 peer reviewed medical articles and studies.

The Cardio and Vascular Effects of OSA

PubMed

There are two very rare instances where people have physiological problems that preclude CPAP use.  We have had two posters who have estuation tube structures which lead to severe ear pain when they used their CPAP.  Additionally, some people (like me) have a tear duct system which opens into the sinuses and that can blow air into the eyes.  Interestingly, a medical student posted yesterday about a study he is involved with addressing that very issue.

APAPs are a little different and exactly why we highly recommend a close partnership with a competent sleep doc.  Since APAPs adjust pressures using an algorithm which monitors breathing patterns, there are some cases where their use needs to be monitored by a physician such as in cases of asthma, COPD, congestive heart failure or any time the algorithm might falsely read an altered breathing pattern as an apnea.  APAPs are still used frequently in some of those cases under careful monitoring by a competent sleep apnea doc.

When something is important to most of us, we will give it quite a long time and effort weeks, months more.  I am an 8 year apnea patient and of course there will always be issues.  But for me, the alternative is not acceptable.

Don’t let someone’s misinformation and bad attitude discourage you.  Here on this forum, we will continue try to keep you safe from unproven and untested hypothesis and help you folks reclaim your lives and your health through CPAP therapy or whatever else is developed and shown to be safe and efficacious.


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

DAS--

For the mercury comment--well, there's a heck of a thread I was reading called something like Continued Serious Problems with CPAP.  Since joining here I've heard of burst ear drums, people forced to sit up to sleep due to surgery, nausea (which I personally experienced after about 10 minutes on bipap), chronic dry throat (chance of URI, increased chance of choking, likely thickening of delicate tissues, etc.).  Sure.  Some people recovered from syphilis without dying from mercury but many more found out the danger 30 or 40 years after the treatment and CPAP is still a baby in scientific terms.  Humans are not designed for high pressure air forced down their throats.

The hard fact is that people should have the right, as mature adults, to consider all the options and choose the right one and just because some have been "saved" or forced themselves to comply out of fear (red flag for me) doesn't make the treatment ideal.  What CPAP is is a great business--complicated equipment, titrations, upgrades, sleep studies, all paid for by the insurance companies where supplements are around $10/bottle and probably only need to be taken for a few months to a year.  Heck, you can get the same chemicals lying on the beach all day eating bananas, turkey on whole wheat, and drinking milk.  Of course, it wouldn't be nearly as profitable.  Not many people are willing to pay $2000 for a sandwich.

guest vintage67,

IMO, "apnea support" means providing info to people regarding treatments that have been shown to be effective. If there is little or no research showing a treatment to be effective, then why would it be considered "all things apnea". As pointed out, there are thousands of studies of CPAP, and a consensus among researchers, universities, and professional medical organizations, regarding its position is the leading recommended treatment. The advantages have been shown to outweigh the disadvantages. That is the reason its use is strongly encouraged.

There is research being conducted into other possible treatments (such as the didgeridoo), none of which have been proven to be effective (according to the researchers themselves), and the status of the research is posted in various places on the site. Maybe I missed it, but I have yet to see one research study showing that the suggested alternative, 5-HTP, significantly improves the sleep apnea condition (lowers AHI) in humans.

Good luck to you.

Hi Vicky,

Since you asked I thought I'd offer you some info.  Personally I was moved by the man who blew his ears out his first night.  

From Web MD

October 08, 2007
Article Link: http://www.webmd.com/sleep-disorders/Sleep-Apnea/Continuous-positive-airway-pressure-CPAP-for-obstructive-sleep-apnea
WebMD Home  Sleep Disorders Health Center  Sleep Apnea Health Center Email a Friend Print Article Sleep Apnea Health Center

Continuous positive airway pressure (CPAP) for obstructive sleep apnea

Continuous positive airway pressure (CPAP) is a machine that helps a person who has obstructive sleep apnea (OSA) breathe more easily during sleep. A CPAP machine increases air pressure in your throat so that your airway does not collapse when you breathe in. Your using CPAP may also help your bed partner sleep better.

You use CPAP at home every night while you sleep. The CPAP machine has a mask that covers your nose and mouth, a mask that covers your nose only (nasal continuous positive airway pressure, or NCPAP), or prongs that fit into your nose. The type of mask that fits over just the nose is used most frequently. See an illustration of CPAP.

You may want to try similar machines that have automatically adjustable air pressure or air pressures that are different when you breathe in than when you breathe out.

What To Expect After Treatment
It may take time for you to become comfortable with using CPAP. If you cannot get used to it, talk to your doctor. You might be able to try another type of mask or make other adjustments.

Why It Is Done
CPAP is the most effective nonsurgical treatment for obstructive sleep apnea. It is the first treatment choice and the most widely used.

Doctors use CPAP to treat people who have moderate to severe sleep apnea.
CPAP is the treatment of choice for people who have sleep apnea and coronary artery disease (CAD) or heart failure.1
Doctors also use CPAP to treat mixed sleep apnea.
How Well It Works
Overall, CPAP is effective for moderate and severe obstructive sleep apnea:

Research shows that continuous positive airway pressure (CPAP) decreases daytime sleepiness, especially in those with moderate to severe sleep apnea.2, 3 However, CPAP may not be as effective for people who have mild sleep apnea.3
Two small studies show that in people who have moderate to severe sleep apnea, NCPAP lowers blood pressure during both the day and the night.4, 5
Risks
Problems that may occur with CPAP include:

Nightmares and excessive dreaming during early use.
Dry nose, nosebleeds, and sore throat.
Nasal congestion, runny nose, and sneezing.
Irritation of the eyes and the skin on the face.
Abdominal bloating.
Headaches.
Leaks around the mask because it does not fit properly.
 
Rare complications of CPAP may include:

Bacterial infection in the lining around the brain and spinal cord (meningitis).
Severe nosebleeds.
You can expect mild discomfort in the morning when you first start using CPAP. Talk with your doctor if you do not feel comfortable after a few days.

Relieving side effects
You may be able to limit or stop some of the side effects:

Your doctor may be able to adjust your CPAP to reduce or eliminate problems.
Be sure the mask or nasal prongs fit you properly. Air should not leak around the mask.
Use a humidifier or a corticosteroid nasal spray medication to reduce nasal irritation and drainage.
You may want to talk to your doctor about trying a CPAP machine that will start with a low air pressure and slowly increase the air pressure as you fall asleep. This kind of machine can help reduce discomfort caused by too much constant pressure in your nose. If this does not improve your discomfort, ask your doctor about trying a bilevel positive airway pressure machine (BiPAP), which uses a different air pressure when you breathe in than when you breathe out. BiPAP machines are more expensive than CPAP machines.
If your nose is runny or congested, talk with your doctor about using decongestants or corticosteroid nasal spray medications.
What To Think About
When you are using CPAP, you need to see your doctor or sleep specialist regularly and perhaps have additional sleep studies to adjust the CPAP machine to proper pressures and check to see whether the treatment is working.

The machines are expensive.

The most common problem with CPAP is that people do not use the machine every night, or they take off the mask during the night because it becomes uncomfortable. Even one night of not using the machine can make you sleepy the next day.

You might not use the machine consistently or stop using it because:

You don't like wearing a mask at night because of nasal discomfort.
The machine is noisy.
It may discourage intimacy with your sleeping partner, even though you use the machine only while you are sleeping.


Even aside from the possible dangers of any of the common side effects over time, meningitis, however rare, is a serious, even life threatening side effect.

Even discouraging intimacy is pretty serious given the health and emotional benefits associated with regular intimacy and dry noses and throats increase the risks of all kinds of serious illnesses including everything from the common cold to pneumonia to tuberculosis.