Five years of CPAP therapy, almost no guidance from doctors, clinicians and DME's, and this board has yieled multiple times more information to me in two months than they have during the time since diagnosis. I should add, I am a lifelong OSA sufferer -- but not formally diagnosed until 2002.
My health and injury history causes me to rip masks off during sleep on most nights, one or more times. I have discovered that I am prone to mouth breathing frequently during sleep.
I discovered that I have serious nasal problems. Recently, trying BreatheRight Strips gave me a clear indication on that, and doctors and clinicians failed to inform me of that problem at any time since I was diagnosed. Though, I found out that it is noted in my assessment records, with no mention of treatment.
With the BreatheRight strips on, while wearing either of the Comfort Curve or Optilfe masks, I usually get better sleep and treatment compliance than without the strips on my nose. Though, that is not a solid remedy -- on some nights the strips seem to do nothing to help.
After trying many masks, and finally settling on the Comfort Curve and OptiLife as two I tolerate well, I find through the Encore Pro data outputs that my therapy is substantially ineffective because of mask leaks, mouth breathing and pulling the mask off during sleep.
In June I finally bought myself a M-Series DS510 A-FLEX machine. Doctors had me on a straight CPAP for 4-years and a C-FLEX REMstar Pro 2 for the past year. The want me to keep trying the Pro 2 C-FLEX for another year.
I quickly discovered that the A-FLEX was much better for me than the C-FLEX -- as I already knew it would be. Last week I got the Encore Pro 1.8i software and USB card reader. Seeing my results graphically, and presented numerically, was a major shock in how how ineffective my therapy has been.
Seeing the results on charts and in numbers is much more compelling than just knowing that multiple unresolved problems exist in my therapy.
No amount of psyching myself or mask wear during waking hours helps to deter me from pulling the masks off during sleep.
On Tuesday night I slept with a Nonin 9500 (non-recording) Oximeter on my finger. Each time I woke briefly I would glance at the numbers. I had O2 levels as low as 76-SPO2 several times, but most were low 90's to low 80's -- very bad saturation numbers. Yes, I wake briefly about six to twelve or more times on most nights.
My doctors are balking at releasing my medical records to me, and especially the PSG data and report. They're claiming that having that data will only confuse me and cause me undue stress. I will get the packet... despite them trying to deter me.
Additionally, they don't want to hear about my discovery of low oxygen saturation during sleep hours -- they commented that the several previous 6-minute walk assessments show that I have very good O2 saturation levels. As though the walk assessments indicate that during sleep my O2 saturation is also very good. <shudder> They changed the subject when I asked about my oxygen satruation levels during my one and only sleep study.
The point being: Since I don't currently have choices in who I see for medical care, and I know they are ineffective for my health needs, and uncooperative beyond reason, I'm ordering a wrist-worn style of recording Oximeter. With it I will be able to chart and present the SPO2 numbers to them and force recognition of OSA associated, or contributory, problems that are more gravely serious than what I am being treated for.
The low oxygen saturation levels could be a prime, or highly contributory, cause of me pulling the masks off during sleep. It could also be a cause of my tossing and turning so much -- such as body ache from low O2 saturation -- that thrust to find remedy and raise the saturation level to make the aches go away.
I can not tell yet if Central Apnea is a part of my health dilema, because of the skewed numbers caused by mask leaks, mouth breathing and pulling the masks off, yielding erratic readings and segmented treatment hours on most nights. But a preliminary judgement of the pressures verses events during the nights of better compliance indicates that I could have Central Apnea too. Though, it's too early to judge that as fact based on charts that look akin to something penned by a person while they were doing jumping-jacks.
I have not tried a chin strap or mouth taping yet. I have no faith that I can yield to either of those. It seems to me that if I unconsciously pull off masks during my sleep... that chin straps and mouth tape would be off as well -- without me even waking during the removal process.
On most nights when I have unconsciously pulled a mask off, I wake cognizant enough to put it on again and make it seal. That has occurred up to four times on some nights. Usually, I don't remember putting the mask on when I briefly wake to find that it is off. Again, seeing it on charts in Encore Pro makes a world of difference to OSA sufferers.
To address parts of the problems I am going to try the Hybrid mask. If I can adapt to and tolerate the Hybrid that may alleviate the persistent mouth-breathing leaks. If they can be remedied by the Hybrid then that success may yield benefit in a higher oxygen saturation level. As well as, help prevent me from pulling the mask off.
Another try at wearing a FF mask is not going to work for me due to injury and health history causing deeply ingrained claustrophobia, especially involving my face and head. It's tough enough to tolerate any mask. Nasal cup styles are almost as bad as FF masks.
Ordering and using a recording oximeter, with software, will give me solid numbers to base my preliminary findings on concerning low oxygen saturation levels. There is no mystery about the major organ and tissue damage that low oxygen saturation can cause -- the effects of it are well documented. Not to mention that low O2 levels contribute to strokes, heart attacks, plaque in arteries and a plethora of other problems.
Thanks to Bret at Pur-Sleep for qualifying me for the trial, I will be trying aroma therapy with the other options. Being someone who has always been fragrance reactive I have no doubt that at least one fragrance they offer will yield some positive result in my OSA therapy. The extent of aroma benefit yielded remains to be seen.
Updates to follow...
Nodzy - Still struggling 01
10 posts
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Nodzy
- Posts: 541
- Joined: Tue Jun 05, 2007 5:38 pm
- Location: Planet Mirth - But not too close to the edge.
Nodzy - Still struggling 01
Last edited by Nodzy on Fri Aug 10, 2007 9:04 pm, edited 1 time in total.
Good luck Nodzy.
Keep us posted.
Di
Keep us posted.
Di
_________________
| Humidifier | ||||
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| Additional Comments: ozzie heated hose. | ||||
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"I'll get by with a little help from my friends" - The Beatles
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"I'll get by with a little help from my friends" - The Beatles
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if you live in the USA you have a LEGAL right to copies of your sleep tests including everything sent from the sleep lab to your doctor.
Maintaining privacy is keeping others from accessing your medical records, those laws are NOT to keep you from your own records.
If my doctor refused to give me the actual results of my medical tests after rendering their opinion of what they say, I would not hesitate to sue their ass off. They will make every excuse in the book as to why you shouldn't have them, but the main reason they keep them from you is malpractice. IF they don't treat your condition status quo, you can file a malpractice suit against them.
I'm not one for filing law suits, I've never had to do it, but I have sent a few letters and got the test results I was entitled to.
How else are you able to see another doctor for a 2nd opinion on your condition? Those are your records, get a folder and put a copy of all your test results in it, and build your own medical history file. I have a 3" binder with every test I've ever had done, every blood test, every MRI scan, every test. IF I go to a new doctor, I have my binder if they want to see the results of a test I had 3 years ago, I flip back to it, they can see exactly my progression going back more than 7 years.
I see my doctor now after having blood work done, the nurse brings in a copy of my blood tests with holes punched in it for my binder.
Where you are now:
1. You need a copy of your PSG, you NEED to read for yourself exactly what was found on that study. Was there any CA or MA events? Those can be those onset events, was there any PLMD's? was there any spontaneous arousals seen on that PSG? How are you to know unless you get a copy of your PSG. That is WHY you had that test. OSA is ONLY 1 disorder, there are over 70 other sleep related disorders, that PSG may even identify a hidden heart condition that may be going untreated. I guarantee you if you write a letter to you doctor and send it Certified mail with a cc: at the bottom to your attorney, that report will show up in the mail 2 days later.
2. Our normal fight or flight response when we are suffocating is to remove anything from our face covering the nose and the mouth, that is where we breathe from. While you may be getting air from the machine, it may not be high enough to eliminate the blockage. That may be why you are having those tendencies of removing the mask. Just understand that is a normal response, the more important thing is to determine WHY it is happening. Is it an obstructive event like the tongue into the back of the throat or is it a blockage lower in the airway? or is it GERD possibly contributing to the blockage lower in the airway. IF it is the latter, you may have some "NR"'s show up on the Encore Pro reports. Other causes for those NR's can be central apnea. So you need to determine which of those is it.
3. Keep in mind that using your machine at a minimum pressure of at least 8.0cm would/should keep your O2 levels near normal, but if you have compromised lung capacity then you may even need supplemental oxygen.
4. I agree there is a HUGE difference between A-Flex and C-Flex, therapy wise there is no difference (if there is, have your doctor prove it to you, I'd be willing to bet they can't). As for using your Cflex another year over the Aflex, I'd find another doctor that knows what they are talking about, your doctor seems like a flake to me.
Onset CA's, those onset CA's should eventually go away, or you should not have any anxiety over them, I used to have them so bad I could never sleep, I would be awake straight for 3-4 days in a row from them where I finally just dropped. CPAP helped me get over those, they were majorly worse when trying to sleep on my right side, don't know what caused it someone once suggested artery pressure on the vagas nerve may be the cause, but I avoid that side now and it hasn't been a problem. I finally got over the anxiety of not breathing when falling asleep, my heart would actually feel like it had stopped beating, that was what contributed to the anxiety. Then my heart would be just racing, I'm fully awake on my side now.
Personally, I think the A-Flex machine does a better job at handling those even over my M series of the C-flex version.
IF you can post a couple of your "Auto Daily" reports including the legend data at the bottom, maybe we can see what is going on with your therapy. I'd want to see what those reports look like at sleep onset and if any NR's are being reported. Some times you can blow through those but many times you can't. IF you can't you need a different machine like possibly a AdaptSV.
If you have been on therapy for some time now, it is not a time for your doctor to play dickhead, you need to direct your own therapy if your doctor doesn't want to play ball you get another doctor.
NOTE: I also want to add on mask types. You mention nasal congestion. That is a problem with CPAP therapy. You must be able to breathe through your nose for ideal therapy. Therapy via mouth and a full face mask is like last resort vs. a traceotomy.
Deviated septum: You should see a good ENT and have your nasal passages checked out. You can have a polyp or deviated septum and you can spray your nose until the cows come home and it won't help that congestion. IF you do have a deviated septum, using a mask with nasal prongs like the OptiLife, nasalaire, swift, breeze, hybrid etc., or anything that pushes on the end of your nose can make that deviated septum worse, in fact it can completely block off your nasal valve. The only way to fix that is with surgery. Find a doctor that has done a hundred of them and you'll be fine.
Congestion from mask pressure: You can also use a mask that presses on the outside of your nose and cause you to be congested. Usually this is from a smaller mask, if you can take your fingers and probe around the base of your nose and notice you become congested, then a mask will do the same thing. The only way to get around that is using a larger mask. Sleep labs are screwy, they are more inclinded to fit you with a mask that is too small for you than one that is too large. If you happen to be one of those patients with chronic nasal congestion, a mask that is too small will make it worse. The reason they prefer to fit you with a smaller mask than you need is because they think they leak less. You are only going to be there 1 night for your study, they don't care if you are comfortable, they just don't want any leaks because it makes their job harder.
If you have a deviated septum or suspect you do, I would see a good ENT for an exam to rule that out, I would also only use a yoga style saline only rhino rinse on your nose, practice a rhino rinse and use a BreatheRight under your mask then compare how you do to other nights.
Maintaining privacy is keeping others from accessing your medical records, those laws are NOT to keep you from your own records.
If my doctor refused to give me the actual results of my medical tests after rendering their opinion of what they say, I would not hesitate to sue their ass off. They will make every excuse in the book as to why you shouldn't have them, but the main reason they keep them from you is malpractice. IF they don't treat your condition status quo, you can file a malpractice suit against them.
I'm not one for filing law suits, I've never had to do it, but I have sent a few letters and got the test results I was entitled to.
How else are you able to see another doctor for a 2nd opinion on your condition? Those are your records, get a folder and put a copy of all your test results in it, and build your own medical history file. I have a 3" binder with every test I've ever had done, every blood test, every MRI scan, every test. IF I go to a new doctor, I have my binder if they want to see the results of a test I had 3 years ago, I flip back to it, they can see exactly my progression going back more than 7 years.
I see my doctor now after having blood work done, the nurse brings in a copy of my blood tests with holes punched in it for my binder.
Where you are now:
1. You need a copy of your PSG, you NEED to read for yourself exactly what was found on that study. Was there any CA or MA events? Those can be those onset events, was there any PLMD's? was there any spontaneous arousals seen on that PSG? How are you to know unless you get a copy of your PSG. That is WHY you had that test. OSA is ONLY 1 disorder, there are over 70 other sleep related disorders, that PSG may even identify a hidden heart condition that may be going untreated. I guarantee you if you write a letter to you doctor and send it Certified mail with a cc: at the bottom to your attorney, that report will show up in the mail 2 days later.
2. Our normal fight or flight response when we are suffocating is to remove anything from our face covering the nose and the mouth, that is where we breathe from. While you may be getting air from the machine, it may not be high enough to eliminate the blockage. That may be why you are having those tendencies of removing the mask. Just understand that is a normal response, the more important thing is to determine WHY it is happening. Is it an obstructive event like the tongue into the back of the throat or is it a blockage lower in the airway? or is it GERD possibly contributing to the blockage lower in the airway. IF it is the latter, you may have some "NR"'s show up on the Encore Pro reports. Other causes for those NR's can be central apnea. So you need to determine which of those is it.
3. Keep in mind that using your machine at a minimum pressure of at least 8.0cm would/should keep your O2 levels near normal, but if you have compromised lung capacity then you may even need supplemental oxygen.
4. I agree there is a HUGE difference between A-Flex and C-Flex, therapy wise there is no difference (if there is, have your doctor prove it to you, I'd be willing to bet they can't). As for using your Cflex another year over the Aflex, I'd find another doctor that knows what they are talking about, your doctor seems like a flake to me.
Onset CA's, those onset CA's should eventually go away, or you should not have any anxiety over them, I used to have them so bad I could never sleep, I would be awake straight for 3-4 days in a row from them where I finally just dropped. CPAP helped me get over those, they were majorly worse when trying to sleep on my right side, don't know what caused it someone once suggested artery pressure on the vagas nerve may be the cause, but I avoid that side now and it hasn't been a problem. I finally got over the anxiety of not breathing when falling asleep, my heart would actually feel like it had stopped beating, that was what contributed to the anxiety. Then my heart would be just racing, I'm fully awake on my side now.
Personally, I think the A-Flex machine does a better job at handling those even over my M series of the C-flex version.
IF you can post a couple of your "Auto Daily" reports including the legend data at the bottom, maybe we can see what is going on with your therapy. I'd want to see what those reports look like at sleep onset and if any NR's are being reported. Some times you can blow through those but many times you can't. IF you can't you need a different machine like possibly a AdaptSV.
If you have been on therapy for some time now, it is not a time for your doctor to play dickhead, you need to direct your own therapy if your doctor doesn't want to play ball you get another doctor.
NOTE: I also want to add on mask types. You mention nasal congestion. That is a problem with CPAP therapy. You must be able to breathe through your nose for ideal therapy. Therapy via mouth and a full face mask is like last resort vs. a traceotomy.
Deviated septum: You should see a good ENT and have your nasal passages checked out. You can have a polyp or deviated septum and you can spray your nose until the cows come home and it won't help that congestion. IF you do have a deviated septum, using a mask with nasal prongs like the OptiLife, nasalaire, swift, breeze, hybrid etc., or anything that pushes on the end of your nose can make that deviated septum worse, in fact it can completely block off your nasal valve. The only way to fix that is with surgery. Find a doctor that has done a hundred of them and you'll be fine.
Congestion from mask pressure: You can also use a mask that presses on the outside of your nose and cause you to be congested. Usually this is from a smaller mask, if you can take your fingers and probe around the base of your nose and notice you become congested, then a mask will do the same thing. The only way to get around that is using a larger mask. Sleep labs are screwy, they are more inclinded to fit you with a mask that is too small for you than one that is too large. If you happen to be one of those patients with chronic nasal congestion, a mask that is too small will make it worse. The reason they prefer to fit you with a smaller mask than you need is because they think they leak less. You are only going to be there 1 night for your study, they don't care if you are comfortable, they just don't want any leaks because it makes their job harder.
If you have a deviated septum or suspect you do, I would see a good ENT for an exam to rule that out, I would also only use a yoga style saline only rhino rinse on your nose, practice a rhino rinse and use a BreatheRight under your mask then compare how you do to other nights.
someday science will catch up to what I'm saying...
SnoreDog has given you some good advice. Especially about seeing an ENT regarding nasal problems AND in the USA you "do" have a LEGAL RIGHT to copies of your medical records!!! Especially since the advent of HIPAA.
Write that letter as SnoreDog suggested. In it state that you have previously (on more than one occasion ??) requested a copy of the summary data, including graphs, of your sleep evaluation and titration study(ies), as well as a copy of the dictated results report and that they have not been forthcoming. State that you are now requesting a copy of your entire medical records from their office as is your right under HIPAA. Send the letter CERTIFIED MAIL, RETURN RECEIPT REQUESTED. CC the letter to this doctor's local medical association AND the state medical association. Check your state government website, there is a licensing body for businesses such as sleep labs and for doctors. CC the letter to them as well. If the sleep lab/doctor fails to respond w/your records w/in 30 days you really have them by the short hairs. Their/his license to practice w/in your state will be in serious jeopardy. I've had good response w/copies to the above 3 organizations and always gotten the records I requested. Plus the satisfaction of knowing the licensing body and medical societies had applied pressure AND were aware of the shoddy practices of that physician.
Understand that the records BELONG to the generating facility or physician, that your LEGAL RIGHT is to COPIES of your medical records and that the generating facility or physician does have the right to charge a REASONABLE fee for providing the copies. However, if I've had to resort to cc'ing my request for copies due to failure to respond to previous requests I've never been charged (big brother watching seems to have saved me that cost).
I had ONE hospital refuse and stall (prior to HIPAA) and actually lie to me. But I was able thru their Patient Advocate to get a copy of the ONE PAGE chest xray report. They charged me a $10 access fee (to bring it up on their 'puter ??) and $1 (per page) copying fee for the one page. I had told them that I could just get a copy from my family doctor and they told me that he could not LEGALLY give me a copy since THEY were the generating facility. THAT is when I lost my temper and insisted on seeing their Patient Advocate.
Don't let them stonewall you. Put your request in writing and cc it to the above as well as to the sleep lab/doctor so the sleep lab/doctor KNOW your request has gone to the above.
Write that letter as SnoreDog suggested. In it state that you have previously (on more than one occasion ??) requested a copy of the summary data, including graphs, of your sleep evaluation and titration study(ies), as well as a copy of the dictated results report and that they have not been forthcoming. State that you are now requesting a copy of your entire medical records from their office as is your right under HIPAA. Send the letter CERTIFIED MAIL, RETURN RECEIPT REQUESTED. CC the letter to this doctor's local medical association AND the state medical association. Check your state government website, there is a licensing body for businesses such as sleep labs and for doctors. CC the letter to them as well. If the sleep lab/doctor fails to respond w/your records w/in 30 days you really have them by the short hairs. Their/his license to practice w/in your state will be in serious jeopardy. I've had good response w/copies to the above 3 organizations and always gotten the records I requested. Plus the satisfaction of knowing the licensing body and medical societies had applied pressure AND were aware of the shoddy practices of that physician.
Understand that the records BELONG to the generating facility or physician, that your LEGAL RIGHT is to COPIES of your medical records and that the generating facility or physician does have the right to charge a REASONABLE fee for providing the copies. However, if I've had to resort to cc'ing my request for copies due to failure to respond to previous requests I've never been charged (big brother watching seems to have saved me that cost).
I had ONE hospital refuse and stall (prior to HIPAA) and actually lie to me. But I was able thru their Patient Advocate to get a copy of the ONE PAGE chest xray report. They charged me a $10 access fee (to bring it up on their 'puter ??) and $1 (per page) copying fee for the one page. I had told them that I could just get a copy from my family doctor and they told me that he could not LEGALLY give me a copy since THEY were the generating facility. THAT is when I lost my temper and insisted on seeing their Patient Advocate.
Don't let them stonewall you. Put your request in writing and cc it to the above as well as to the sleep lab/doctor so the sleep lab/doctor KNOW your request has gone to the above.
_________________
| Mask: Quattro™ FX Full Face CPAP Mask with Headgear |
| Additional Comments: PR SystemOne BPAP Auto w/Bi-Flex & Humidifier - EncorePro 2.2 Software - Contec CMS-50D+ Oximeter - Respironics EverFlo Q Concentrator |
Women are Angels. And when someone breaks our wings, we simply continue to fly.....on a broomstick. We are flexible like that.
My computer says I need to upgrade my brain to be compatible with its new software.
My computer says I need to upgrade my brain to be compatible with its new software.
I'm new to this forum and about 6mos struggling with the CPAP machine. I understand Nodzy's frustration. Seeing the results of your sleep study and a good relationship with your doctor would help you a lot, go to someone else who has a supportive staff. I have to say I'm not crazy about my doc, but he has respiratory therapists in his office that are helpful with all the equipment issues and he has a great PA. I've just had a very noncomplient period, maybe just an hour or 2 with the machine in place each night until I finally take it off, I don't even turn it off all the time and it sits on my pillow blowing away. Some nights I don't even try and wake up with that old familiar headache and drag all day. I 'm feeling really tired (using the machine really does make me feel better- if I can leave it on and sleep while it's there) and am trying to get back on the track. Early on in my treatment the PA gave me a script for ambien which helped a lot-those were the first uninterrupted nights with the machine. I find though, that even a half of a 10mg pill makes me groggy the next day and I still wake up at 3am. If I don't take the ambien, I sleep really bad now. What a joke, I aways thought I slept great (I was totally unaware I had sleep apnea until the sleep study) and now I have insomnia? I've decided I need to stop taking the ambien and figure out how to leave my mask on. I used a few tipes from this site last night, lowered the machine and used a scrunchy on the bed post to get the hose under control. I have to admit that the situation was a lot better just those little things-thank you all so much for sharing your tips. I took an ambien last night too, but made it to after 5 am with the machine. I feel a lot more hopeful now and not so tired today, just a little foggy from the ambien. Does anyone have any sleep aid experiences that might help me get past this?
I'm so glad you guys are here-have to admit, I was considering giving up-then I read all the heart disease and stroke stuff again and remembered how I used to wake up several times a night with my heart pounding-and I'm the opposite of an anxious person!
I'm so glad you guys are here-have to admit, I was considering giving up-then I read all the heart disease and stroke stuff again and remembered how I used to wake up several times a night with my heart pounding-and I'm the opposite of an anxious person!
_________________
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Nodzy
- Posts: 541
- Joined: Tue Jun 05, 2007 5:38 pm
- Location: Planet Mirth - But not too close to the edge.
Thanks for the great response input.
Doctors haven't refused to provide my records -- they are hedging on me having them -- playing that game, "make the patient dizzy with excuses." Simply, they cheaped-out on me and are trying to hide the fact that I was initially and subsequently under-treated. The letter demanding my entire medical record copy was in the works before my original post above. But a drive crash on my main computer sent all of my files and history into lock-mode until I have time, energy and focus to extract everything to this computer. I will get the packet.
Yes: I understand the natural tendancy to reject anything covering the face. My situation is somewhat more complex in that respect. Several injuries in my adult years, and several personal attacks on me during my childhood involving being smothered into an unconscious state set a deep revulsion to any part of my face being covered. I fight it well... most of the time. Though, evidently, at times during sleep that deep-rooted fear makes me clear my face of anything touching it.
Too, as I mentioned, it could be the low oxygen saturation during sleep that is one of the causes of me removing the mask, in an attempt to get more oxygen in.
The doctors are too slow to act, so I will get a recording wrist oximeter and software and measure my own SPO2 initially during sleep over an entire week. That should give me a wealth of data about the O2 saturation levels, and could explain much about my ineffective OSA treatment and lung capacity. Previously, I have passed every lung capacity test.
As for the heart: I've had two verified MI's and one that I had and recovered from without the benefit of immediate medical care. When I finally managed to get to a hospital they were so unconcerned, and left me unattended, unmonitored, and unchecked for over four hours... that I got up and walked out. Of course, they were absolutely concerned then.
For heart and arteries, I treat myself other than the two prescribed low dosage blood pressure medications. I use brown vinegar -- one to two teaspoons twice daily in 4-ounces of water. It is a centuries-old artery cleaner, blood thinner and general health tonic. Unfiltered apple cider vinegar works best, but any brown apple cider vinegar will yield benefits if you can handle taking it. Current formulations of vinegar tablets, caplets or capsules are not the same and will not yield the same benefits, or work as quickly for artery cleaning.
I had also modifed my aspirin intake from one 325mg tablet per day, to two 81mg aspirin every six to eight hours. On days when I'm feeling bad I change that to every four to six hours. Spreading the intake, and taking smaller dosages, made a great difference in how well I feel and how well I fend off movement of clots and plaque. Yes, I have many times felt those things moving and slamming to a stop. Since adding the vinegar to my regimen, and changing my aspirin dosage and intake schedule I have had far fewer incidents of clots and plaque being felt, or of them doing obvious damage.
For instance: In 1999 I had plaque or a clot slam the web of my left hand, between the thumb and index finger. I went to the hospital and they had me sit and wait for almost four hours before being seen by a doctor. I could not close my left hand. It hurt like it had a railroad spike penetrating it. They prescribed Percocet and said to exercise the hand gently because I had suffered muscle and tendon strain. I had been asleep when the blockage suddenly occurred. There was no strain, no damage from lifting, pulling, pushing or hitting anything. It was a blockage from a clot or plaque. Total misdiagnosis. I went to another hospital and by then the damage was set-in. They also misdiagnosed and labled it as severe nerve irritation from strain. I walked out without even arguing the point further.
It took over three months before I could again get my hand 80% closed. I kept working with it and finally achieved success and regained full use of that hand before six months had elapsed from the date the blockage caused the damage. It is trouble-free to this day, with full grip strength and no limitations.
In 2001 I woke just before daylight one morning with a slam-hit in my left eye. It felt like a mule kick, and hurt like one. I raised my head and looked around, noticing that the entire lower half of the sight in my left eye was gone. I tried to rationalize all sorts of things, but the nagging knowledge of it being a blockage from plaque or a clot forced me quickly into offensive mode.
Knowing how doctors and hospital ER's too often minimize most things, and pass the window of opportunity for quick and complete resolve, I treated myself.
I jumped up, crammed-in four St. Joseph's 81mg aspirin and took about 2-ounces of brown vinegar in about 6-ounces of water, and also took a 0.4mg Nitroglycerin tablet. In about 15-minutes my sight started returning. Over the following 20-minutes my entire sight returned and the pain had almost vanished. During my last eye appointment for new glasses, in April of 2007, there was no evidence of any eye damage ever occurring... none.
St. Joseph's aspirin, being flavored and uncoated, if chewed and left in saliva around the tongue, can get into your blood stream much faster than a swallowed, uncoated aspirin, and far faster than an enteric coated aspirin that is swallowed. The danger is damage to tooth enamel.
Yes, what was always referred to as 'children's aspirin,' can save an adult life or prevent permanent damage better than a higher dose single aspirin tablet that is swallowed.
Some people can not take aspirin. Many others should not take aspirin without the knowledge and advice of their physician because of health concerns and possible drug interactions.
OSA, and other sleep disorders, contribute to artery plaque and clots... among a plethora of other byproduct maladies, some of which can cause sudden death or permanent debilitation.
NOTES:
Revealed by the recently acquired Encore Pro software, I need to get mouth breathing and mouth leakage under control before trying to resolve the low oxygen saturation levels. The two masks I tolerate well overall are not effective because of the mouth leakage, and me pulling the mask off during sleep.
I just ordered the Hybrid mask with which to try a one piece solution to the leakage problems. Tolerating it is another matter.
I also ordered a Ruby chin strap to try in combination with the Comfort Curve and Opitlife masks, to see if either of those combinations will give me much lower leakage numbers, better compliance and more consistent sleep-time oxygen saturation.
I may be able to tolerate the Ruby chin strap and a nasal interface mask better than the Hybrid mask covering my mouth while pressing into my nose. But, I want to try the Hybrid mask to avoid the layered heardgear binding feeling and the trapped heat from those multiple heargear straps.
In partial summary: This board and the thousands of people contributing have given me renewed hope, and the drive to find answers that suit my particular needs. In addition to the hundreds of my questions that were already answered in whole or part as I have read through thousands of posts.
Doctors haven't refused to provide my records -- they are hedging on me having them -- playing that game, "make the patient dizzy with excuses." Simply, they cheaped-out on me and are trying to hide the fact that I was initially and subsequently under-treated. The letter demanding my entire medical record copy was in the works before my original post above. But a drive crash on my main computer sent all of my files and history into lock-mode until I have time, energy and focus to extract everything to this computer. I will get the packet.
Yes: I understand the natural tendancy to reject anything covering the face. My situation is somewhat more complex in that respect. Several injuries in my adult years, and several personal attacks on me during my childhood involving being smothered into an unconscious state set a deep revulsion to any part of my face being covered. I fight it well... most of the time. Though, evidently, at times during sleep that deep-rooted fear makes me clear my face of anything touching it.
Too, as I mentioned, it could be the low oxygen saturation during sleep that is one of the causes of me removing the mask, in an attempt to get more oxygen in.
The doctors are too slow to act, so I will get a recording wrist oximeter and software and measure my own SPO2 initially during sleep over an entire week. That should give me a wealth of data about the O2 saturation levels, and could explain much about my ineffective OSA treatment and lung capacity. Previously, I have passed every lung capacity test.
As for the heart: I've had two verified MI's and one that I had and recovered from without the benefit of immediate medical care. When I finally managed to get to a hospital they were so unconcerned, and left me unattended, unmonitored, and unchecked for over four hours... that I got up and walked out. Of course, they were absolutely concerned then.
For heart and arteries, I treat myself other than the two prescribed low dosage blood pressure medications. I use brown vinegar -- one to two teaspoons twice daily in 4-ounces of water. It is a centuries-old artery cleaner, blood thinner and general health tonic. Unfiltered apple cider vinegar works best, but any brown apple cider vinegar will yield benefits if you can handle taking it. Current formulations of vinegar tablets, caplets or capsules are not the same and will not yield the same benefits, or work as quickly for artery cleaning.
I had also modifed my aspirin intake from one 325mg tablet per day, to two 81mg aspirin every six to eight hours. On days when I'm feeling bad I change that to every four to six hours. Spreading the intake, and taking smaller dosages, made a great difference in how well I feel and how well I fend off movement of clots and plaque. Yes, I have many times felt those things moving and slamming to a stop. Since adding the vinegar to my regimen, and changing my aspirin dosage and intake schedule I have had far fewer incidents of clots and plaque being felt, or of them doing obvious damage.
For instance: In 1999 I had plaque or a clot slam the web of my left hand, between the thumb and index finger. I went to the hospital and they had me sit and wait for almost four hours before being seen by a doctor. I could not close my left hand. It hurt like it had a railroad spike penetrating it. They prescribed Percocet and said to exercise the hand gently because I had suffered muscle and tendon strain. I had been asleep when the blockage suddenly occurred. There was no strain, no damage from lifting, pulling, pushing or hitting anything. It was a blockage from a clot or plaque. Total misdiagnosis. I went to another hospital and by then the damage was set-in. They also misdiagnosed and labled it as severe nerve irritation from strain. I walked out without even arguing the point further.
It took over three months before I could again get my hand 80% closed. I kept working with it and finally achieved success and regained full use of that hand before six months had elapsed from the date the blockage caused the damage. It is trouble-free to this day, with full grip strength and no limitations.
In 2001 I woke just before daylight one morning with a slam-hit in my left eye. It felt like a mule kick, and hurt like one. I raised my head and looked around, noticing that the entire lower half of the sight in my left eye was gone. I tried to rationalize all sorts of things, but the nagging knowledge of it being a blockage from plaque or a clot forced me quickly into offensive mode.
Knowing how doctors and hospital ER's too often minimize most things, and pass the window of opportunity for quick and complete resolve, I treated myself.
I jumped up, crammed-in four St. Joseph's 81mg aspirin and took about 2-ounces of brown vinegar in about 6-ounces of water, and also took a 0.4mg Nitroglycerin tablet. In about 15-minutes my sight started returning. Over the following 20-minutes my entire sight returned and the pain had almost vanished. During my last eye appointment for new glasses, in April of 2007, there was no evidence of any eye damage ever occurring... none.
St. Joseph's aspirin, being flavored and uncoated, if chewed and left in saliva around the tongue, can get into your blood stream much faster than a swallowed, uncoated aspirin, and far faster than an enteric coated aspirin that is swallowed. The danger is damage to tooth enamel.
Yes, what was always referred to as 'children's aspirin,' can save an adult life or prevent permanent damage better than a higher dose single aspirin tablet that is swallowed.
Some people can not take aspirin. Many others should not take aspirin without the knowledge and advice of their physician because of health concerns and possible drug interactions.
OSA, and other sleep disorders, contribute to artery plaque and clots... among a plethora of other byproduct maladies, some of which can cause sudden death or permanent debilitation.
NOTES:
Revealed by the recently acquired Encore Pro software, I need to get mouth breathing and mouth leakage under control before trying to resolve the low oxygen saturation levels. The two masks I tolerate well overall are not effective because of the mouth leakage, and me pulling the mask off during sleep.
I just ordered the Hybrid mask with which to try a one piece solution to the leakage problems. Tolerating it is another matter.
I also ordered a Ruby chin strap to try in combination with the Comfort Curve and Opitlife masks, to see if either of those combinations will give me much lower leakage numbers, better compliance and more consistent sleep-time oxygen saturation.
I may be able to tolerate the Ruby chin strap and a nasal interface mask better than the Hybrid mask covering my mouth while pressing into my nose. But, I want to try the Hybrid mask to avoid the layered heardgear binding feeling and the trapped heat from those multiple heargear straps.
In partial summary: This board and the thousands of people contributing have given me renewed hope, and the drive to find answers that suit my particular needs. In addition to the hundreds of my questions that were already answered in whole or part as I have read through thousands of posts.
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Nodzy
- Posts: 541
- Joined: Tue Jun 05, 2007 5:38 pm
- Location: Planet Mirth - But not too close to the edge.
Margo,
I'm sorry that I didn't reply sooner to your post here.
REMEMBER: Always check with your doctor(s) before modifying your regimen. or taking any OTC medication that your doctor has not previously approved.
Ambien and other sleep aids are fine. Some work better for some people, and others don't work well for some people.
Through reading labels and mulling through thousands of pages of medical information on the top three medical sites online while caring for my mother through her last 10-years of life, I discovered many things.
Benadryl (Diphenhydramine HCI) often taken for drug interactions, allergies and such is the prime or only component in many OTC sleep aids. They are far less expensive than Ambien, Lunesta and the other prescription sleep aids.
Benadryl does make most people drowsy, or prone to feeling too relaxed and wanting to nap.
Benadryl (Diphenhydramine HCI) is not tolerated well by everyone. But most people can take it.
Some brands of sleep aids with Diphenhydramine HCI (Benedryl) as the only component are 50mg, and others are 25mg.
Some brands are caplets, some are tablets and some are gel caps.
Simply Sleep, by Tylenol Brand, is 25mg caplets. They recommend for sleep taking two caplets, for a total of 50mg. Many people in order to achieve sleep with that product would need only one caplet of 25mg.
They can even be cut in half to make 12.5mg quarter-doses. I sometimes use the Simply Sleep in either 25mg or 12.5 quarter-dose to assist in getting to sleep. Again, it's far less expensive than a prescription sleep aid.
True to norm though, buying Benadryl as the product is less expensive than buying a sleep aid that contains nothing more than Benadryl. So, try to find Benadryl 25mg caplets, if you need a cheap sleep aid, and can safely take Benadryl.
I hope that helps your quest for sleep.
I'm sorry that I didn't reply sooner to your post here.
REMEMBER: Always check with your doctor(s) before modifying your regimen. or taking any OTC medication that your doctor has not previously approved.
Ambien and other sleep aids are fine. Some work better for some people, and others don't work well for some people.
Through reading labels and mulling through thousands of pages of medical information on the top three medical sites online while caring for my mother through her last 10-years of life, I discovered many things.
Benadryl (Diphenhydramine HCI) often taken for drug interactions, allergies and such is the prime or only component in many OTC sleep aids. They are far less expensive than Ambien, Lunesta and the other prescription sleep aids.
Benadryl does make most people drowsy, or prone to feeling too relaxed and wanting to nap.
Benadryl (Diphenhydramine HCI) is not tolerated well by everyone. But most people can take it.
Some brands of sleep aids with Diphenhydramine HCI (Benedryl) as the only component are 50mg, and others are 25mg.
Some brands are caplets, some are tablets and some are gel caps.
Simply Sleep, by Tylenol Brand, is 25mg caplets. They recommend for sleep taking two caplets, for a total of 50mg. Many people in order to achieve sleep with that product would need only one caplet of 25mg.
They can even be cut in half to make 12.5mg quarter-doses. I sometimes use the Simply Sleep in either 25mg or 12.5 quarter-dose to assist in getting to sleep. Again, it's far less expensive than a prescription sleep aid.
True to norm though, buying Benadryl as the product is less expensive than buying a sleep aid that contains nothing more than Benadryl. So, try to find Benadryl 25mg caplets, if you need a cheap sleep aid, and can safely take Benadryl.
I hope that helps your quest for sleep.
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Nodzy
- Posts: 541
- Joined: Tue Jun 05, 2007 5:38 pm
- Location: Planet Mirth - But not too close to the edge.
Wednesday, August 15th:
Successes, however small are being achieved. My compliance ratio is slowly going up, morning headache frequency and intensity is still lowering and I'm having more energy overall. Not to mention that I am more alert and perky.
On Saturday night, August 11, 2007, I added Pur-Sleep aroma therapy to my regimen -- thanks to Bret including me in the last trial. It was an instant benefit in sleep quality, and it diminished the frequency of mask-off episodes to just one in four (4) nights of using aroma therapy. My large leak numbers are also far below my norm while using the aroma therapy, with nothing else changed.
That is fantastic, considering that I still have mouth breathing and mouth venting (tunnel venting) problems to resolve. As noted on my other posts, I have a Hybrid mask and a Ruby chin strap enroute with which to attempt to get the leakage numbers down to designed mask vent LPM, or near it at least.
Knowing that I have COPD and low oxygen saturation, especially while sleeping, today I ordered a nice Best Peak Flow Meter and a Exerciser Spirometer from http://www.vitalitymedical.com.
In my mind, it can't hurt to go far beyond what doctors say and offer in trying to better my health. It is highly possible that specifically exercising the lungs may provide for the ability to achieve better oxygen saturation while sleeping and when awake.
Sure, exercise can provide the same or similar benefits, but this will be in addition to all exercise. The relatively inexpensive Best Peak Flow Meter will allow me to see my best inhale and exhale readings, when I want to see them, without having to wait to see a doctor and hope they'll squeeze that test in while I'm there.
More to come....
Successes, however small are being achieved. My compliance ratio is slowly going up, morning headache frequency and intensity is still lowering and I'm having more energy overall. Not to mention that I am more alert and perky.
On Saturday night, August 11, 2007, I added Pur-Sleep aroma therapy to my regimen -- thanks to Bret including me in the last trial. It was an instant benefit in sleep quality, and it diminished the frequency of mask-off episodes to just one in four (4) nights of using aroma therapy. My large leak numbers are also far below my norm while using the aroma therapy, with nothing else changed.
That is fantastic, considering that I still have mouth breathing and mouth venting (tunnel venting) problems to resolve. As noted on my other posts, I have a Hybrid mask and a Ruby chin strap enroute with which to attempt to get the leakage numbers down to designed mask vent LPM, or near it at least.
Knowing that I have COPD and low oxygen saturation, especially while sleeping, today I ordered a nice Best Peak Flow Meter and a Exerciser Spirometer from http://www.vitalitymedical.com.
In my mind, it can't hurt to go far beyond what doctors say and offer in trying to better my health. It is highly possible that specifically exercising the lungs may provide for the ability to achieve better oxygen saturation while sleeping and when awake.
Sure, exercise can provide the same or similar benefits, but this will be in addition to all exercise. The relatively inexpensive Best Peak Flow Meter will allow me to see my best inhale and exhale readings, when I want to see them, without having to wait to see a doctor and hope they'll squeeze that test in while I'm there.
More to come....
Is noise from the mask and machine an issue for your insomnia?margo wrote:I'm new to this forum and about 6mos struggling with the CPAP machine. I understand Nodzy's frustration. Seeing the results of your sleep study and a good relationship with your doctor would help you a lot, go to someone else who has a supportive staff. I have to say I'm not crazy about my doc, but he has respiratory therapists in his office that are helpful with all the equipment issues and he has a great PA. I've just had a very noncomplient period, maybe just an hour or 2 with the machine in place each night until I finally take it off, I don't even turn it off all the time and it sits on my pillow blowing away. Some nights I don't even try and wake up with that old familiar headache and drag all day. I 'm feeling really tired (using the machine really does make me feel better- if I can leave it on and sleep while it's there) and am trying to get back on the track. Early on in my treatment the PA gave me a script for ambien which helped a lot-those were the first uninterrupted nights with the machine. I find though, that even a half of a 10mg pill makes me groggy the next day and I still wake up at 3am. If I don't take the ambien, I sleep really bad now. What a joke, I aways thought I slept great (I was totally unaware I had sleep apnea until the sleep study) and now I have insomnia? I've decided I need to stop taking the ambien and figure out how to leave my mask on. I used a few tipes from this site last night, lowered the machine and used a scrunchy on the bed post to get the hose under control. I have to admit that the situation was a lot better just those little things-thank you all so much for sharing your tips. I took an ambien last night too, but made it to after 5 am with the machine. I feel a lot more hopeful now and not so tired today, just a little foggy from the ambien. Does anyone have any sleep aid experiences that might help me get past this?
I'm so glad you guys are here-have to admit, I was considering giving up-then I read all the heart disease and stroke stuff again and remembered how I used to wake up several times a night with my heart pounding-and I'm the opposite of an anxious person!
If so, you might want to invest $3 bucks in some of those orange foam ear plugs. They can be found at the grocery store pharmacy, you just roll them between your fingers to make them smaller for insertion into the ear canal and they expand in a few minutes to fit you. Takes some getting used to, but you can find out in a hurry if the noise from the machine is the cause of the insomnia.
someday science will catch up to what I'm saying...
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