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I haven't been back on this thread because I'm afraid of criticism. I've been hearing time after time that the cpap is quiet. Not to me. And by saying this I fear members will think I''my a whiny pampered patient.

Just to answer a few questions. I tried a large range of masks. Nasal pillows such as the p10. The Eson nasal mask. And full face masks. I stuck to full face masks because they are easier to breathe and that I noticed with nasal pillows my breathing was amplified when I wore ear plugs. I've worn 33 decibels earplugs for over half my life. Can't sleep without it. Unfortunately it amplified cpap noise. I've tried the intellipap cpap as well which is suppose to be quieter. No such luck.

I hate the cpap. I got migraines from trying to stick with it. I'm pretty shaky and fatigued from just not sleeping. I took so many sleep aids. I'm not surprised if my pressure changes. I'm just tired and even drugged up I'm unable to sleep. If there was a virtually quiet cpap out there I'll be the first to purchase one

lindalam89 wrote:I haven't been back on this thread because I'm afraid of criticism. I've been hearing time after time that the cpap is quiet. Not to me

In order to avoid criticism, a better way to put it might be, "I'm extremely sensitive to sound, and I'm habituated to wearing earplugs over half my life."

lindalam89 wrote:I've worn 33 decibels earplugs for over half my life.

Don't let criticism bother you. This is the internet, you know.

Linda, do you have a feel for how much they've done to evaluate you for sleep problems as opposed to breathing problems? "Sleep-disordered breathing" is about two really separate symptoms -- lack of breathing and lack of sleeping. For garden-variety apnea, you fix the lack of breathing, and the lack of sleep resolves itself.

Doctors have this saying, "When you hear hoofbeats, think horses, not zebras." The problem is that sometimes hoofbeats ARE zebras! And sometimes doctors are unwilling to think crazy thoughts, even as they are being kicked and trampled and looking up they are seeing black and white stripes. Since plain-old garden-variety apnea is so common, it has become big business to "process" patients through highly-automated tests, with lightly-trained techs, and barely-thinking doctors. Which people don't recognize as a problem because it IS completely adequate for getting a proper diagnosis and proper treatment plan for the garden-variety cases. (Which includes most of us...)

I did some research about narcolepsy, because I think my dad may have it. (He falls asleep at the dinner table, in pretty much all moving vehicles, whenever he goes to a party he ends up asleep on the corner of the couch while the party goes on around him.) It's a neurological problem, not a breathing problem. And there are a bunch of even more rare neurological problems out there. Plus things like restless-leg syndrome.

Have you tried to get a referral to some academic doing research on rare sleep disorders?

There's another saying that software developers have: "When the only tool you have is a hammer, all problems start to look like nails." Have you had really comprehensive sleep test(s) aimed at looking for the really rare things? After a year, I think it may be time for your doctor to refer you out to more special specialists out there...

Maybe I haven't tried hard enough but it is my understanding from seeking help at Stanford and Kaiser that I've seen specialists and they've done what they can but can't help me. Stanford was my last hope. They are the school for sleep medicine and I asked if there was a study or if they can look into my problem further. The intern doctor there said he asked the head doctor and he told him there is nothing they can do for me.

It was a total blow. All I got was keep trying the cpap. I got the same message at kaiser but with a double blow that this was all in my head. At least at Stanford they sympathized and said my data indicates severe if not one of the worst cases of insomnia they've seen. kaiser kept insisting I was wrong and this was all a psychiatric problem. I asked for very special tests to check my glucose uptake in my thalamus to check sleep function. They said in order for them to do that test they would need obvious signs of a prion disease. My doctor at kaiser said he literally would need to see me put my underwear on my head before he would consider ordering that test.

I always felt something was wrong with my brain. I can't even doze in front of the television when I'm exhausted. Instead I get severe nerve pain and hot flashes and high heart rate when I am exhausted and sleepy. My mom has no problem dozing... The doctors just keep saying they heard it countless times. And I know people think they are special cases but it is frustrating when data from sleep studies suggest I have extremely long sleep onset, and literally almost all stage 1 sleep. I'm still kicking because I have minimal Rem to keep me sane.

So now I am left with trying to acclimate to the cpap in hopes it will restore my lost delta sleep. But getting to sleep is a major problem. I've developed migraines and shakes from telling myself that I will eventually sleep on the cpap. Sometimes I tell myself I may feel fatigued but maybe I am sleeping. I'm finding this less and less convincing the more I try cpap and the more I get all sorts of random off symptoms due to lack of sleep.

Sorry if this sounds like I'm whining. I've always been told that if I changed my delivery style, maybe just maybe the doctors would be more inclined to help me

s

lindalam89 wrote:I haven't been back on this thread because I'm afraid of criticism. I've been hearing time after time that the cpap is quiet. Not to me. And by saying this I fear members will think I''my a whiny pampered patient.

Just to answer a few questions. I tried a large range of masks. Nasal pillows such as the p10. The Eson nasal mask. And full face masks. I stuck to full face masks because they are easier to breathe and that I noticed with nasal pillows my breathing was amplified when I wore ear plugs. I've worn 33 decibels earplugs for over half my life. Can't sleep without it. Unfortunately it amplified cpap noise. I've tried the intellipap cpap as well which is suppose to be quieter. No such luck.

I hate the cpap. I got migraines from trying to stick with it. I'm pretty shaky and fatigued from just not sleeping. I took so many sleep aids. I'm not surprised if my pressure changes. I'm just tired and even drugged up I'm unable to sleep. If there was a virtually quiet cpap out there I'll be the first to purchase one

Linda,

I am glad you came back and poste. I was wondering how you are doing. I am so sorry to hear you having a rough time with it.

You are not whiney, just fed up. Remember you are your own best advocate. I think the system just waits until we have no more energy to keep fighting.

****

Do NOT give up looking for answers. Small story.

I so hate when they say it is all in your head. I remember going to see a Dr because I could barely move, I had pains everywhere, had trouble moving, could not climb a flight of stairs. My dr was not there, this dr said I was stress and it was all in my head. After ending up in the emergency, it was discovered I was anemic. A few weeks after starting Iron supplements the symptoms went away. It took a couple of more months to get my stamina back. I knew it was not in my head.

***
If sleep deprivation was not bad it would not be used as a form of torture. Sleep deprivation affects all areas of the body and brain/

Sometimes drastic measures need drastic measures. Have you thought of going to an emergency ward and asking for psychiatry consult, NOT because you are crazy, but because sleep deprivation is very bad and you need to get help somehow to get some sleep.


Have you ever had a car accident, whiplash, hit your head etc or any form of Tramatic Brain Injury. This can make common noises much worse. Each noise adds up. Example the cpap machine is one noise a bit of a leak is another noise, but for some people these noises just add up.

I am assuming you doing everything in your power to get a good night sleep recommended to induce sleep?

When you say you get migraines, do you get auras, not seeing right etc or really bad headaches. It is not the same thing.

For the migraines lift your hands high and see if the stretch helps. I think it was either the 3rd or 4th migraine medication that I actually saw a difference. I need to take an inflammatory med 30 minutes before the migraine med so the effect can be stronger.

Have you ever been told to take melatonin to help with the sleep or even B complex vitamins for the stress etc.

The not being able to sleeping (or staying a sleep) even when very tired I think is the central nervous system. (I can't remember which body system it was.) I remember that at one point I could not sleep anymore. The Dr gave me a medication to sleep. Not a sleeping pill. A small dosage knocked me out for 12 hours. I went back to the doctor and told him the dosage was to strong. He said no, my body was very sleep deprived. After a couple of weeks I finished the medication and was able to sleep longer.

Hi Keepsmiling, do you remember the name of the medication? I've heard time and time again that sleep medications don't put you to sleep and I can attest that they don't at least not for me. The only thing that ever put me to deep sleep was anesthesia when I had an appendectomy.

I hate how doctors keep telling me they've tried everything and it's all in my head but I'm starting to think I've tried everything. I even asked if I had an autonomic nervous system disorder and I've been to naturopaths as a last resort. Yes I take melatonin, magnesium glysinate and b vitamins religiously. Nutrition wise I got excellent blood markers.

Just can't sleep and as you explained sleep deprivation is used for torture. They've done studies where cats we're sleep deprived and they literally pounced on everything, thinking a wooden block was a piece of food.

The only suggestion I ever got that was remotely hopeful was the cpap. Acclimate to cpap and your delta sleep should return. Unfortunately my biggest problem still is sleep onset. Sleep maintenance is just an adjunct issue.

I'm going to ask... Would buying a newer cpap be quieter? My biggest complaint is the engine revving up noise when I inhale. I have the remstar auto pap that kaiser issues out to all patients. The decibel is suppose to be 29. I tried the intellipap which is suppose to be 26 decibels but I couldn't tell a difference. Don't know if I had wrong settings

lindalam89 wrote:Philips Respironics System One (60 Series)
RemStar Auto with A-Flex Model 560P - P1399607753A2
PAP Mode: APAP (Variable)
Min 5.5 Max 12 (cmH2O)
humidifier: 4
Full face mask. I've used the amara full view and the f10 the most.
99% mask fit, usually no major leaks

It's been fairly consistent from my sleep studies and also data on my apap that I have almost always

1 central apnea
a few hypopnea events and RERAS. I generally have good oxygen saturation. Never dipped below 91%

Again........
It might be that your pressure range may be contributing to your problems. But, as I suggested in your other thread, it probably wouldn't hurt to have your equipment supplier check out the functionality of your machine.


Den

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lindalam89 wrote:Hi Keepsmiling, do you remember the name of the medication? I've heard time and time again that sleep medications don't put you to sleep and I can attest that they don't at least not for me. The only thing that ever put me to deep sleep was anesthesia when I had an appendectomy.

I hate how doctors keep telling me they've tried everything and it's all in my head but I'm starting to think I've tried everything. I even asked if I had an autonomic nervous system disorder and I've been to naturopaths as a last resort. Yes I take melatonin, magnesium glysinate and b vitamins religiously. Nutrition wise I got excellent blood markers.

Just can't sleep and as you explained sleep deprivation is used for torture. They've done studies where cats we're sleep deprived and they literally pounced on everything, thinking a wooden block was a piece of food.

The only suggestion I ever got that was remotely hopeful was the cpap. Acclimate to cpap and your delta sleep should return. Unfortunately my biggest problem still is sleep onset. Sleep maintenance is just an adjunct issue.

I'm going to ask... Would buying a newer cpap be quieter? My biggest complaint is the engine revving up noise when I inhale. I have the remstar auto pap that kaiser issues out to all patients. The decibel is suppose to be 29. I tried the intellipap which is suppose to be 26 decibels but I couldn't tell a difference. Don't know if I had wrong settings

Hi lindalam, I am so sorry to hear about the many problems you are experiencing with your treatment, and commend you for your strength to hang in there and keep fighting for your health and well-being! Anyone or any institution that tells you 'they can't help you' and to 'go home' should be marked off of your list with a big black X, move past them, and don't look back. Don't accept their pat and standard, run-of-the-mill answers if you know they aren't working for you. Way too often, medical professionals assume virtually all of us 'fit' the "sounds like hooves so must be horses" analogy that KeepSmiling shared below, and it's so far off base.

I just had a very unfortunate experience with medical 'experts' doing the same this past week. On Friday, 10/2, I was admitted to the local hospital for an emergency appendectomy. Complications after surgery landed me in ICU for 3 days, and I discharged on Tuesday, 10/6. I was re-admitted to the same hospital this past Thursday, 10/8, due to severe side effects of oral antibiotics given to me at time of first discharge on 10/6. (Side effects of the med included severe nausea and vomiting which docs knew when prescribing; however there are no alternatives for this med.) But docs did not want me to be vomiting because of sutures from surgery, and possible dehydration of course. But they had me take med anyway. Go figure. I was in the hospital 4 days for 2nd admit (I'll be sure to send the docs the bill ) I'll tell you though, I was so mad by the idiocy of it all by the time I realized what had got me back there, I was telling the docs exactly what I wanted them to do, instead of the other way around. I wasn't rude or yelling, but I was firm and refusing medications that were being ordered without me being informed beforehand or that I did not want to take.

Have you thought about seeing a neurologist for your sleep problems? I have chronic migraines and do see a neurologist. I also take daily Topomax, and other meds for migraines. You said you are experiencing migraines also. Like another member indicated below, sometimes trying to 'get in through a side door' with another specialist can lead you to the place you are trying to ultimately reach. I'm not a medical professional, but from all of your symptoms I've read it seems there could possibly be a link to neurological issues there. Just an idea

Please keep posting and let us know how you are doing~