Sick and frustrated with doctors.

[signal20gsxr]

So I am just needing to vent here. I have UARS. I have also suffered from GERD since I was 18. In 2002 I had an ulcer, then in 2004 I got a hiatal hernia. I have been on Proton pump inhibitors for 10 years. I had my gallbladder removed in June of this year because it was spastic and I had gallstones. When I had an abdominal CT scan they found scattered diverticula.

The problem I have been having is that my lower esophageal sphincter is so scarred my stomach/intestines are being pumped full of air now that I am on an APAP. So I had a follow up with my GI doc first because my pulmonologist is a moron and didn't feel like wasting my time with him. My pressure has only gotten up to 15 once and 13 maybe twice since I have using my APAP. My last follow up with the pulmonologist he dropped my max pressure down to 15 from 20 which didn't do anything. So I went to talk to my GI doc. I have been eating regularly and having normal bowel movements. In fact I have gained 10lbs in 2.5 months. Of course he pokes around on my gut and its sore in places. DUH its going to be and has been but I deal with it. It takes a few hours in the morning to get all of the air/gas out of my system. He puts me on Bentyl. Now I take 2mg of ativan a night because I can't sleep if I don't. I am able to sleep for usually 7 hours. Sometimes more sometimes less. All benzo's are respiratory depressants. I know this and in time am hoping I can get off of them but my body needs times for my sympathetic and parasympathetic nervous system to balance out. This is what my psychiatrist said and is why they do not want me to try and get off of ativan as of yet. Which we both believe is going to take a lot longer then a few months. According to my cardiologist (who was the first doctor I have seen that even had I clue that I had a SBD) and my Psychiatrist both believe I have had OSA/UARS to some extent since I was about 18-20 years old. I also told my GI doc this. To them this explains why I was having so many issues that no one could figure out. The fact that I had severe agoraphobia and within the first month on my APAP I could pretty much go anywhere at anytime, my morning nausea went away that I had for over a year and so did my heart palpitations that I have had for over a decade, I got my appetite back etc. I have not felt this normal in years. I have not gotten one panic attack since I have been using it.

So my GI doc gives me Bentyl. Three problems with this. Its an anticholinergic so it can make GERD worse because it relaxes the LES, which obviously is going to make it easier for air to get into my stomach, it antagonizes your rest and digest system,(parasympathetic nervous system) lastly your not supposed to take bentyl if your taking benzo's from what I have been reading!!! The next morning I had tremors all day long, nausea, was very light headed, pulse was running at 90 all day long (it normally runs in the upper 40's to low 50's during the daytime) and my bp was up.

I did see a new sleep doc two days ago. I will say that he spent more time talking with me during the first visit then all three visits I had with my old pulmonologist. After I explained everything to him he lowered my max pressure to 9.5 which is my 90% pressure. He also put in for my DME to get me a full face mask and also a chin strap. He said to try the chin strap first and keep using the nasal pillows. If that doesn't fix it then switch to the full face mask. I do wake up with this weird vibration that I can't make sense out because I am half asleep. But I either swallow or close my mouth and it goes away (not exactly sure which though). He asked if I wake up with a dry mouth. I said yes sometimes I do. So he said that I am probably opening my mouth. He said if you have any problems after that let me know. I see my DME on Tuesday.

Its frustrating and difficult when you have to see one doc for one thing and another doc for something else and none of them communicate with each other. Another example. I got a bad head cold 25 days after I got my APAP. It was donated so I had to use it for at least 6 hours every night for 30 days to be able to keep it. My sinuses were so plugged It was like I was suffocating when I went to bed. I saw my internist. They said to take sudafed. My psychiatrist said not to take sudafed because its a stimulant and they know I can't tolerate stimulants. So I tried afrin. My pulmonologist said not to use afrin. My new sleep doc tells me he has no problem with me using one squirt of afrin at night if that works. Just don't take it during the day is all.

I really can not put into words the frustration that I have with most all of the doctors I have seen over the past 20 years and the whole system. I have been complaining even since I was put on seroquel (Back in 2003) that I would wake up with my pulse and BP so high it felt like the someone was shaking me trying to wake me up. Because I have anxiety they just upped the dosage so I could sleep through it because they thought it was nocturnal panic attacks which turns out it wasn't.

I am sure many or most of you have had to deal with the same types of issues. It just seems really messed up to me. I do a better job of being my own doctor then most I have dealt with and I am not even a doctor. But I do have a better understand of whats going on with my body, what does and does not work for me and what I can and can't tolerate. Unfortunately you just can't go in there and tell them what you want them to do. It pissed them off and that's the last thing you want. Okay I am off of soap box for now.

[johnthomasmacdonald]

the problem is that the way the system is currently set up, doctors have no time or incentive to actually sit and think through the specific and unique issues of YOUR case, that take TIME and time is money. They will get the exact same reimbursement from the insurance companies whether they spend 5 minutes giving you the "one size fits all" all treatment or take an hour out and really try to figure out what is going on. If you need to keep going back to this guy or to lots of other "specialists" who act the same, that actually generates more money for the system

[jencat824]

Signal,
I understand your frustration, since I deal with several drs myself. I have gone in to some appts, told them what was wrong & exactly what I wanted done to fix it. Depending on the relationship I have with that dr, some listen to me, some get mad & some just go ahead and ignore what I said. I have learned when I get a great dr, keep them, when I get an awful dr, start looking for his/her replacement. I have multiple medical problems, so frustration is just part of the package I have to deal with. I think in your case, you are your own best advisor, since you have a good handle on what is happening with your body.

Hang in there you might want to try a method I've used with drs before, with some success. Tell the dr you have been doing research, not just some internet, google search style research, but have read actual research studies from drs at reputable institutions. And before you tell dr that, do the research to back up what you are saying. It takes a little time, but you pretty much have already done a lot of research, I can tell from your post you are very knowledgeable, so quoting the research you have done should not be a problem. Then tell the dr you would like to try xxx treatment, since you do know your own body and would feel comfortable trying xxx (even if that means going off a drug they think you need). Most drs are willing to let patients to try doing without a drug, or using an alternate drug therapy. I've even got a dr to agree with me trying acupuncture (and with some success).

Main principle is dr works for you and its your body. Vent away, since I think they've been running you ragged. You see problems with their therapy, they want you to do it their way, it should be a decision that both of you agree with. I get rid of drs who won't listen to me.
Jen

[avi123]

At your age of 40 it's still not too late for you to go study medicine. BTW, about the GERD and the proton pump tabs, I take only one tablet of Prilosec daily even after my GI doc said it's ok to take two. I read about it in the Consumer Reports on Health.
Don't neglect doing upper and lower endoscopies!

[signal20gsxr]

Thanks everyone for the replies.

John, I used to be a mechanic. Worked as one for several years. I only had one ever come back. When I was 13 my grandma's car had a starting issue for years that countless shops could never figure out. I was talking to our family chiropractor about it one day because he is into cars. He knew exactly what the problem was. A $12 dollar part. I take my time to figure out what is wrong, what caused it and how to properly repair it. The system is screwed up. Most seem more concerned about getting people in and out so they can make more money than actually doing their job properly. This is why I got out of working out of a shop. Same thing. Just fix it ASAP and get to the next one. If you want it done right I have to do it myself. I would apply the same ethic and principals if I was a doctor. Fix the problem not treat the symptoms if at all possible.


Jen thanks for the advice. I do have to learn to be more proactive but learn some tact at the same time.Since I am paying them I do not feel like I should have to kiss there arse. I do not have insurance and pay out of pocket. I am just so fed up that I get so upset I just end up getting in with a different doc after a mix up. The issue is they are not all bad but they just don't take the time to look at your history, ask some question and think just a little if what and how they are trying to treat is going to interfere with other conditions that other doctors are treating. I mean they are doctors isn't this what they are supposed to do?

AVI I have had two upper endoscopy's No lower as of yet. But I think the abdominal CT scan would have shown anything combined with the blood test they can run now. They have quite a few they can run to check for inflammation of the GI tract. I know that PPI's long term are not good. I have tried to cut down. My dad has suffered from ulcers and GERD since he was 12, his dad past away from a perforated ulcer, my moms mother also pasted away from a perforated ulcer. I think there is something hereditary that has to do with producing to much stomach acid.

I know I would make a good doctor. However the amount of time and money to get though school I don't know if it will ever be an option. As I mentioned earlier I am a very good mechanic. However because I work on everything like if it was my own you just can't take the time to be able to make any money nor have enough customers that are willing to pay the extra.

[jencat824]

Signal,
I had typed a very wordy post in reply to you, somehow lost that (I think that happens to me for a reason - no one wants to read when I run off at the keyboard ).

So, now I have the opportunity to be brief. I was going to tell you all the reasons to justify my suggestion. Well here it is, no justification needed. When I go to my various drs, I take a small, HIDDEN, tape recorder in my pocket. I tape record & keep my sessions for future reference. I always review carefully every session after the appt, when I get home. I keep these for future reference FOR MYSELF ONLY (its not legal to tape someone without their knowledge). I NEVER have told anyone except my hubby that I do this (well, never til now). I would never use this info against any dr, no matter how bad. These recorded sessions are to help me to catch anything I may have missed, and make decisions about whether I want to seek another dr to replace one that is not adequately doing his job (that job includes communication). Sometimes I have come from an appt furious, only to listed to tape the next morning & find out he did give me the answers, I just wasn't listening or processing the answer.

I go to each & every appt no matter how small, or a follow-up with a list of questions, and a list of what I need to learn. I have this written in my own 'messy' handwriting, so that even if the dr takes the list to look at (and some have! ), they could not decipher what I wrote. That is so they don't brush off my questions until I have at least tried to get them to answer it. You may have to ask a question 2-3 ways to get an answer. Asked enough times, the dr will usually give an answer. Sometimes you have to listen to the tape to realize he gave the answer 2-3 times, but in a very convoluted way.

I hope this helps you, (I'm trying not to get wordy again),
Jen

[purple]

Walking helps to get the gas out of your system.

A dry mouth can sometimes be a result of GERD. Or put another way, many of us develop a reverse sump pump effect when we breathe. As we bring stomach acid up, it both damages the valve a the top of the stomach, and the fumes can leave a bitter taste in our mouth, that might seem like dry mouth.

In my last sleep study I had to get up at 2 AM to walk around and belch out gas. The Sleep Tech who was doing the test said in all her years doing that kind of work she had never seen anyone with such bad aerophagia. She goes back to the days when they did sleep apnea treatment using the vacuum cleaners for pumps and closing the tubes with tape.

She said that it was her experience that nearly anyone could use a nasal mask and train themselves in less than two nights to open their mouth to exhale, and close to inhale while asleep. Thereby preventing aerophagia.

I got a Bi Level machine, which allows for one pressure on inhale and another on exhale. Problem is not only are Bi machines expensive, and Medicare does not allow for a patient getting a Bi type machine (Respironics calls their Bi Pap) unless they fail more standard PAP machines, or a person has a condition, like MS.

I wonder if my using a Bi Level machine is actually making my chest muscles more weak, as I get a lot of help in breathing.

As of now, I see that Respironics is selling a bi machine model(s) on cpap.com at a price only a bit above an APAP.

Else one might try to get a machine off of http://www.secondwindcpap.com/ or Craigs List. Or someone off the board. One fellow works for a DME and has used machines and is respected for being honest. Still be careful from whom you buy and probably use PayPal.

Let us know if you find another solution.

[signal20gsxr]

Jen, thanks for the advice and don't worry about being to wordy. My post often get pretty lengthy. I doubt that I will ever use a recorder but your idea to re listen to what they did say makes a lot of sense. I always have a mental list and even at times have made a written list when I am not in a frame of mind to remember.

I lose a lot of posts as well because I get logged out before I am finished. So I copy my text when I am done before trying to post it.

I really prefer not to go to medical doctors if at all possible. I try natural remedies first. Like with my sciatica. I have had it ever since I can remember due to a birthing injury. Chiropractors and massages are much more helpful than pain meds. I do take good supplements and have had hair analysis and even a neurotransmitter test does before.

My new sleep doc did lower my peak pressure and he did say that my nasal breathing is somewhat restricted. My body seems to prefer warmer/dryer climates. The first two nights with the lower pressure I was still waking up burping. He did suggest taping my mouth closed. I have done this for two nights now and for the first two night since I have been using my APAP I have not had to burp or abdominal pain when when I wake up. I don't understand why taping the mouth would help because you can still swallow even with it tapped closed.

Purple I did try exhaling through my mouth. It was very weird to put it mildly. I doubt that I could train myself to do it in that little amount of time. My understanding is that mouth breathing even if exhaling can dry your mouth out which can lead to tooth decay. Plus from what I have read the vagus nerve has many receptors in the nasal passages that monitor air flow. I might be wrong but from my understanding we are designed to breath through our nose while we are sleeping. So I do not know if its ideal to exhale through your mouth or not. I do know that everybody is different and for some it might be the best thing to do and for others maybe not.

I do have the head of my bed elevated and try to sleep on my left side as much as possible. If my APAP is able to keep my airway open then I don't see any reason why I should still be getting reflux. Not saying its not happening but my typical symptoms no longer exist. If fact I can eat before I go to bed which before was not possible.

I have looked into getting a Bi PAP. I have to wait till after I do my taxes next year and go from there. I do not know if a Bi-PAP would help or not but I won't know till I try. My new doc didn't seem to think that a Bi-PAP would be of any benefit. I need to start doing more breathing exercises to strengthen my diaphragm. I know its week as I always was a chest breather. Hopefully this will also help with my hiatal hernia.

[Todzo]

Hi signal20gsxr!

From time to time I read in a book called “The Rise and Fall of the American Medical Empire” by Robert A. Linden. He sees the decline of the American health care system as directly related to four things. The disappearing primary care doctor, health care insurance reform, the influence of the pharmaceutical industry on the practice of medicine, and reform of malpractice litigation. He was a primary care physician and calls his viewpoint that of a trench doctor.

Because only 20% of those commended to Positive Airway Pressure (PAP) devices are able to use those devices for over four hours a night at the one year mark I am writing my congressmen to look into the matter. Something is seriously wrong here. The system has seriously failed us and a lot of blood is being spilt. We need to bring about change quickly.

For you right now, well consider this. One can say that as blood oxygen goes down the CO2 level in the blood would tend to go up. I use a pulse oximeter to help me sustain good CO2 levels. My experience looks like this:

Nose

99% Stuffed up, likely to sneeze
98% Stuffed up
97% Just a bit stuffed
96% Probably clear, feeling OK
95% Nice warm feeling inside

Stomach (note: several minutes at reading to change)

99% Stomach in a knot, heartburn, nausea
98% Stomach in a knot, possible heartburn
97% Stomach has bloated feeling
96% Stomach beginning to relax
95% Stomach relaxed, digestion continues

If you breath too much and wash out too much CO2 from your system your brain will despise the resultant blood [1]. It appears that any neuron dense organ such as the stomach regards such blood in the same way.

I think you need a doctor who is aware of CO2 maintenance issues.

Right now I am dealing with stress from a traumatic event. The stress drives my tendency to breath too much to increase. Combined with the positive pressure of my CPAP by breathing at night tends to become unstable. Right now I am treating this with some enhanced expiratory rebreathing space (EERS)[2]. I have come to believe that PTSD is more of a physiological problem than a psychological problem. With my brain better able dealing with the stress is not so bad.

Since Upper Airway Resistance Syndrom (UARS) is right in the thick of over breathing and nose irritation (see my SpO2 observations above) I do not think that APAP is a good choice for you.

Have a great week!

Todzo

[1] :
Integration of cerebrovascular CO2 reactivity and chemoreflex control of breathing: mechanisms of
regulation, measurement, and interpretation Philip N. Ainslie and James Duffin Am J Physiol Regul Integr Comp Physiol 296:R1473-R1495, 2009. First published 11 February 2009; doi:10.1152/ajpregu.91008.2008
Link: http://www.ncbi.nlm.nih.gov/pubmed/19211719

[2] :
J Clin Sleep Med. 2010 Dec 15;6(6):529-38.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Source: Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

[ChicagoGranny]

He asked if I wake up with a dry mouth. I said yes sometimes I do. So he said that I am probably opening my mouth.

Well this is the first problem I would tackle. If you are opening your mouth while using nasal pillows you are likely losing pressure and then you have breathing events. The events may make your GERD worse and they may cause you to have more pressurized air enter the digestive system.

"Gotta be fixed!"

A tactic to keep your mouth closed or use of a FFM is the solution.

I do have the head of my bed elevated and try to sleep on my left side as much as possible.

Elevation is good (about 4 to 5 inches). You know your body, but in my case aerophagia is worse on the left side as compared to the right. Also learn the rules for GERD patients such as how many hours to allow between eating and lying down and what foods should be checked for possible inclusion on your personal "avoid list".

high CPAP pressure

Consider some remedies which may allow a lower pressure to be effective:

- Sleep exclusively on sides or stomach, forcing it with a tennis ball on back of shirt if necessary (some use small backpacks).
- Wearing a soft spinal collar while sleeping.
- Use of a mandibular advancement device (~$2500) while sleeping with CPAP. Some insurance policies will pay.

You can work through most of this without a doctor involved. If all this fails you may need to get the doctor involved again.

Take this on as a personal challenge to solve this problem selfishly for yourself only (enlightened self-interest). The stress about worrying about the whole system is something you don't need now.

Once you achieve a stable healthy condition, you and I will take on the whole damn bunch and revolutionize the practice and delivery of medical care.

I have come to believe that PTSD is more of a physiological problem than a psychological problem.

True. PTSD in military veterans is more closely correlated with sleep apnea than severity of combat experience.

[signal20gsxr]

True. PTSD in military veterans is more closely correlated with sleep apnea than severity of combat experience.

Just listened to an online Q and A off of Dr Steven Parks website on PTSD, trauma and SBD. Don't know if its the chicken or the egg thing you know. Maybe they had some form of SBD and the trauma magnified it? Either way it was interesting to listen to. I never knew there was any connection.

Todzo that is some interesting information. For me its the chicken and egg thing- Adrenalin from anxiety or just anxiety alone will increase my breathing and heart rate causing my O2 levels to increase. Lets say I am watching a movie in my recliner at home currently, O2 is 96-95% and pulse in in the mid 50's. This is when I am able to eat a decent sized meal without issues. I can't eat if my pulse in running in the 70-80's range which usually O2 will be 99-98% at the same time.

APAP therapy for me has been a live saver. My fight or flight system was so over active while I was asleep and it prevented me from getting into deep sleep. Both of these destroyed my stress response. My new sleep doc did agreed that my AHI is worse than the results from my sleep study.. My AHI is up to almost up to 6 some nights. My average is 3.2 for the past 2.5 months which is higher than my sleep study (2.6). I have times that its running up or close to 15 for a couple of hours. Its only at 0 for an hour or two total during the night even with using an APAP.

Granny. Taping my mouth took care of the aerophagia. The bad thing is that three nights ago I lost power for about 3 minutes starting at 3.41 am. I never woke up but felt like garbage the next day. . My DME said that is why she does not recommend taping the mouth. I was just re breathing the air through the hose and what little fresh air I could get in and out of the vent holes if I was breathing at all.

I did get a Ruby chin strap yesterday and had no aerophagia, bloating or burping this am. I also got a new nasal mask and FFM. This seems to make the pressure feel a lot lower than with using nasal pillows. The extra area offers a cushioning affect. The nasal mask while providing a good seal was very uncomfortable with the chin strap. I am going to keep using the nasal pillows and chin strap for a week and see how I do. Then I will try the nasal mask without the chin strap and see how that does. Its pretty comfortable. More so than the the nasal pillows and chin strap. However the FFM by far is the most uncomfortable out of everything I have tried. So I am just going to use that for when I have a head cold or severe nasal congestion.

My Stomach really has a mind of its own. My GERD is actually worse if I go to long without eating. Its like my hypoglycemia. I produce to much insulin when I don't need to. I do have it managed as best as I can at this point. I am hoping that over time the longer my SBD is managed properly things like my GERD and hypoglycemia will also get better.

[Todzo]

Todzo that is some interesting information. For me its the chicken and egg thing- Adrenalin from anxiety or just anxiety alone will increase my breathing and heart rate causing my O2 levels to increase. Lets say I am watching a movie in my recliner at home currently, O2 is 96-95% and pulse in in the mid 50's. This is when I am able to eat a decent sized meal without issues. I can't eat if my pulse in running in the 70-80's range which usually O2 will be 99-98% at the same time.

My Stomach really has a mind of its own. My GERD is actually worse if I go to long without eating. Its like my hypoglycemia. I produce to much insulin when I don't need to. I do have it managed as best as I can at this point. I am hoping that over time the longer my SBD is managed properly things like my GERD and hypoglycemia will also get better.

Hi Signal20gsxr!

About a year ago I started using my pulse oximeter to help guide me toward breathing in a way which would not blow off too much CO2. Simply I found the lowest heart rate controlling with breathing while keeping the exertion level constant and then used the SpO2 reading as a guide to get back there quickly.

I have learned to listen to my body as I do this and have come up with several lists of symptoms vs SpO2 levels one of which is this:

Stomach symptom verses pulse oximeter blood oxygen (SpO2) level in percent.

99% Stomach in a knot, heartburn, nausea
98% Stomach in a knot, possible heartburn
97% Stomach has bloated feeling
96% Stomach beginning to relax
95% Stomach relaxed, digestion continues

Your experience seems to be in line with mine.

The stomach symptoms are some of the slowest to move, that is you are looking at about ten minutes at the specific level to see the change.

Stress is the largest factor in over breathing for me.

I think APAP may not be the wisest choice for you. They tend to key in on symptoms caused by over breathing and respond with more pressure. If the result happens to calm your system enough the thing may work. If not, hopefully the respiratory efforts will awaken you before your breathing becomes extremely unstable.

I strongly encourage you to talk with your doctor about using enhanced expiratory rebreathing space (EERS)[1]. I added that back to my treatment with some added venting control for better response to any serious over breathing and the result was a whole lot less symptoms of PTSD. I wake up with an optimistic and positive attitude.

During a recent expert interview [2] Dr. Krakow helped us understand how the stress of traumatic events or serious threat upset CO2 maintenance and so cause PTSD. It is indeed a physiological problem not a psychological problem and always has been. This explains why I was never able to find any psychological treatment which had good evidence that it was effective to treat PTSD. You do need to understand the cause of a problem to fix the problem.

May we find real causes and fixes indeed!

Todzo


[1] :
J Clin Sleep Med. 2010 Dec 15;6(6):529-38.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Source: Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

[2] :
MP3 of - Expert Interview: Dr. Barry Krakow on PTSD, Insomnia, and Sleep Apnea http://doctorstevenpark.com/expert-inte ... leep-apnea

[signal20gsxr]

Todzo,

So when you say that APAP therapy might not be the best for me are you suggesting CPAP would work better? For over half the night last night my AHI was at zero with just a couple of events. However my pressure was between 6 and 8 during the time when it was at zero. This is a first but its also the 4th night I have been using a chin strap and my average AHI for the first time is running lower than it was during my sleep study. My max pressure (9.5) does peak out at some point every night even now that I am using the chin strap.

They do say it takes time for your body to adjust to any PAP therapy. Since I am a few days short of 3 months with it I don't know when its the best time to start making a lot of changes. I am heading in the right direction and can't afford any setbacks at this time. Not to say some things won't help but until I try them there is no way to know if it will help or not. I did check my O2 levels one night when my pressures were at 7 and 15. O2 never got above 96%. I rather have it a little high than it get to low and start kicking off my adrenals again. This would cause a major set back for me.

I do appreciate your input and advice. It does make sense to maintain a proper O2/CO2 levels with enhanced expiratory rebreathing space if they are not running in the proper ranges. Yes, it does seem that we are dealing with some of the same issues. However I am dealing with a lot of emotional baggage that I was just not capable of dealing with being jacked up on so many meds for close to 13 years. I guess what it all really boils down to is am I getting enough deep sleep? If I am does the trauma just go away? I don't know. Maybe I am finally getting the deep sleep I need and that is why I am able to start processing the emotions of the trauma now? If so its just going to take time to work through them?


I have a very slow and shallow respirator rate as it is even when I am awake. My bp and pulse are also low as well.Yet O2 runs 97-99% during the day. The only time pulse, BP and respirator rate elevates is during exercise or when I am having a panic attack or am very anxious. Which I really have not had to deal with recently.

I am hoping that in time and my fight or flight system will calm down and my sleep quality will improve. I have started exercising a little now that I have the energy to and this seems to be helping as well.

The best monitor for me is my appetite. The better it is the better I am doing.

[Todzo]

Todzo,

So when you say that APAP therapy might not be the best for me are you suggesting CPAP would work better?

I have a very slow and shallow respirator rate as it is even when I am awake. My bp and pulse are also low as well.Yet O2 runs 97-99% during the day. The only time pulse, BP and respirator rate elevates is during exercise or when I am having a panic attack or am very anxious. Which I really have not had to deal with recently.

I am hoping that in time and my fight or flight system will calm down and my sleep quality will improve. I have started exercising a little now that I have the energy to and this seems to be helping as well.

The best monitor for me is my appetite. The better it is the better I am doing.

Hi signal20gsxr:

Starting back in August I started reducing my pressure. My pressure had been bumped up to 15 a bit over a year earlier and that resulted in less AHI at that time. But since that time the use of EERS[2] to handle the CO2 maintenance issues at night and eucapnic breathing training to quash the “panic” related over breathing during the day gave me the energy I needed to move from a place I now consider unsafe to a small city where I do feel more safe. I also lost a bit of weight. So, as I kind of expected, the ease of being able to breath with less weight resulted in unstable breathing at 15 cm/H2O.

I reduced pressure and watched the data for a week or so at a time. As I passed through 12 cm/H2O I noted that the signs of unstable breathing dropped away. Many weeks later as I tried 7 cm/H2O I noticed actual apneas in the air flow wave forms so I now run with 8 cm/H2O. The average AHI of the three days at 7 cm/H2O – BTW – was 2.00. That was in October.

November 16th is the anniversary of a serious assault and robbery upon me years back. It causes me stress today. This year friends caught the changes in my abilities and looking more carefully at my data I could see that unstable breathing at 8 cm/H2O was happening! When I think about it I should have expected that. The truth is that while doing my pulse oximeter guided eucapnic breathing training during the day I found it much, much harder to keep the breathing rates down to where they should be.

So please note that stress brought the point at which unstable breathing occurred for me down from 12 cm/H2O to less than 8 cm/H2O!! Think about that!!

If I increase pressure to overcome an obstruction – and – the obstruction is overcome then my system will relax and be more happy.

But if my system is already stressed and so the threshold of over breathing is already breached!!

I really have tried to find a doctor I can work with here. I was forced to self titrate by not finding one. As I considered how I might do things on my own my first thought was a conservative use of the APAP mode of my machine. I believe my original setting was 13 bumped over the years to 15 cm/H2O. So my low was 13 and my high was 15 – and – snoring brought the pressure up from 13 to 15 in minutes! APAP not a good choice for me at all!!

I do not so often wear my pulse oximeter while doing my breathing training – because I have learned to look at physical signs to tell me what is going on. Consider this:

Blood oxygen level (SpO2) vs Nose symptom:

99% Stuffed up, likely to sneeze
98% Stuffed up
97% Just a bit stuffed
96% Probably clear, feeling OK
95% Nice warm feeling inside

Blood oxygen level (SpO2) vs Stomach symptom (the genesis of GERD?):

99% Stomach in a knot, heartburn, nausea
98% Stomach in a knot, possible heartburn
97% Stomach has bloated feeling
96% Stomach beginning to relax
95% Stomach relaxed, digestion continues

The first thing that usually tells me I am breathing too much is indeed a stuffy nose. I really love what breathing at eucapnic levels does for my nose. I love, love the smell of flowers in the summer time. I am very sad to have missed so many years of that!

So if I over breath, my nose will stuff up, I will snore, and an APAP will raise pressure exactly as it did – which will tend to make me breath more and make things worse!!!! This is why I do not think APAP is a good choice for you. You deal with issues of anxiety – they will move the threshold – the APAP will key on snoring – or an apnea from resultant GERD – and things will be bad.

Regardless of how you are treated I do believe you or your treatment will need do deal with CO2 maintenance issues. For me that is CPAP with constant data monitoring and breathing volume awareness using EERS when needed. For someone with bucks and a good doctor the new ASV class PAPs are reportedly breathing volume aware with good results with these issues.

The shootings are much on my mind these days since I know that many will be dealing with insomnia and PTSD. So I close with info I wish I could get to them and those who medically serve them:

Proper Treatment of Insomnia and PTSD:

During a recent interview Dr. Barry Krakow related that his group has found that 90% of those presenting with insomnia had a sleep breathing disorder (half UARS half OSA) and in the rest the awakenings were over 90% attached to respiratory incidents[1].

The pathology for PTSD also appears to be a sleep breathing physiological problem not a psychological one.

This year I have found my symptoms of PTSD much helped by a simple solution which corrects the CO2 maintenance issues involved [2]. I believe it is so effective because the brain is so sensitive to changes in CO2 [3].

Please treat insomnia and PTSD as the breathing disorders that they are.

[1] :
MP3 of - Expert Interview: Dr. Barry Krakow on PTSD, Insomnia, and Sleep Apnea http://doctorstevenpark.com/expert-inte ... leep-apnea

[2] :
J Clin Sleep Med. 2010 Dec 15;6(6):529-38.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Source: Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

[3] :
Philip N. Ainslie and James Duffin, Integration of cerebrovascular CO2 reactivity and chemoreflex control of breathing: mechanisms of regulation, measurement, and interpretation Published online before print February 11, 2009, doi: 10.​1152/​ajpregu.​91008.​2008 AJP - Regu Physiol May 2009 vol. 296 no. 5 R1473-R1495
Link: http://ajpregu.physiology.org/content/296/5/R1473.long

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Bilevel/BiPAP/VPAP helps many people with aerophagia. Have you experimented with the Aflex and cflex options and levels on your current machine?

I'm afraid of Afrin, even one squirt per day. Watch out for dependence where you end up stuffed up if you don't take it.

I found my GERD like symptoms are less if I increase my minimum APAP pressure. It doesn't make a lot of sense, but I'm thinking that maybe I'm sucking acid out of my stomach when I start to get some restrictions in my airway, even if it doesn't show up as an apnea in my results.

Some people think one type of mask or another helps them with aerophagia.