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[Guest]

I am a member, but just can't remember what my membership user name is. Very typical for me. While I look for it, you can read this.

I'm not quite sure why I am writing. Not that I don't believe that this group has some wonderful insights. Actually I think that the medical world has been pounding it through my thick skull that I need to quit chasing rainbows and put my affairs in order (The last neurologist told me, after I fervently expressed my desire to know what was causing the 99% severe central sleep apnea. No OSA for me.

She said "Why would any doctor want to take you as a patient when you have an illness that is difficult to diagnose with no treatments that work with a poor prognosis." Adding, "What's in it for him"

I had no answer,maybe it is just for validation. I spent the first five years going to doctor after doctor, all telling me that it was in my head, before one ordered a sleep study. It was in my head alright, but not in the manner they referred.

This was Jan 2004 my first sleep study . The doctor comes in the next morning and tells me that I have 99% central sleep apnea with over 140 events per hour. She said no wonder you were sleeping all day and night, your brain has been severely oxygen deprived. I felt her disappointment as she went on to tell me that the CPAP probably wasn't going to help me. Also adding that she knew nothing of CSA and I needed to see a neurologist, which by the way, she didn't know of any, HELLO, I was on my own. (No kidding, I was soon to find out how few doctors know of this form of sleep apnea.) I was prescribed oxygen for the night and stimulants for the day and told that CPAP doesn't ususally work in cases like mine. Usually doctors find it shocking to see how large a dose of stimulants it takes to just keep me awake, not even very functional, I might add. I probably shouldn't blame them for not believing me. I've had to prove every aspect of my illness. I am very grateful for the few doctors who have tried. I do worry about the drugs but they view it differently, in as much, as I am trying to be functional for whatever time I may have.

I still think my spirit refuses to believe their dim view of my future, despite the fact that I've not made any headway in finding out why I have this disease. I was never that sick before a few years ago when I contracted "something" never to recover. Within a year I had Primary Immune deficiency, then my endocrine system completely failed.

How much was I sleeping, you ask? It easily equaled up to 20-22 hours per day. There would be only enough time to get a few awake periods of thirty minutes-forty five minutes before falling asleep again. Things like bathing became a luxury as I needed supervision so as not to drown. I was sleeping so much that I would fall asleep on the toilet in the middle of the night after only a minute of sitting quietly.Then I would be balancing myself the rest of the night. I would fall asleep standing in front of the refrigerator, standing there for more than an hour,only aware that I was slightly cold. My day existed only of brief periods of hazily stumbling around the house inbetween long naps. Just this vicious cycle of hell.Eating became problematic being i I ate any food with liquid, I wound up spilling it all over myself as I slid down the cushion of the sofa, again falling asleep. I couldn't sit on the sofa with a glass of iced tea, or I'd make a big mess. I ruined an entire wardrobe with pen ink, because I'd fall asleep with the pen in hand.... dropping in my lap. I fell asleep during the drilling of having a cavity filled, the dentist said he couldn't believe how I just dropped off to sleep. My study revealed that my sleep onset time was 30 seconds. That is the time it takes me to fall asleep. You can see how anytime I sat quietly for a few seconds, I'd fall asleep.

I'm grateful that the several hundred ml of stimulants per day has kept the major episodes of sleep at bay. I can now stay awake for more than four hours at a time, although it is still common for me to fall asleep after taking my dose of meds. The oxygen helps get at least some oxygen to the brain. My continual attempts to use the CPAP have not been successful. I do not have my husbands commitment to putting the unit on my face when I fall asleep at various locations. It has gotten to the point that I never sleep in the bed anymore. Not that I don't try, but it seems that my most wakeful period of any is at night. During the day, even though I may try to stay awake to force myself to night sleep, only to fall asleep in the recliner, or again .... on the toilet.
It is hard for me to try to describe the frustration, the futile attempts over and over, to have some sort of normalcy through this process. All the while never knowing what happened to cause this, or why? (Oh, I heard through the grapevine that my first sleep doctor has since declared that my pain medications caused this disorder although she otherwise had declared she knew nothing of CSA) ( how convenient.)
Honestly I found that most people did not take this to be a serious problem, even thinking it to be quite funny. My own mother told me that she just didn't believe that I could get a rare disease, believing that if she denounced it, maybe it would go away? When I try to get help and support, my own husband says that he just doesn't believe that anything will happen, so he doesn't worry about whether I wear the mask or not. I am homebound and 80 % non functional although the stimulants and oxygen 24/7 has kept the major "sleep fests" as I called them , at a minimum. I finally grew weary of trying to educate others when it probably wouldn't effect them. I could tell the minute I referred to the rareness of the disease, I lost their attention.

Several things have surprised and dismayed me over this experience. I had no idea how little doctor's truly understand the brain. For example, they kept telling me that central sleep apnea only happed to stroke patients and that it entailed lesions on the brainstem. Research later revealed to me that doctor's consider anything that is not normal "a lesion" and the brainstem is a wide open oasis relatively speaking. I found instances of infections crossing the blood brain barrier and causing central sleep apnea, but short of being thrown out of offices,I couldn't get any doctor to explore that possibility. I tested positive for Lyme about the same time. One thing that is never addressed at least to my knowledge is the effect on health of not getting all sleep stages. Because of so many apneas, I rarely get out of stage two sleep before waking myself up and starting over at square on again. I believe that because of this problem I can't restore my endocrine hormones thus becoming deficient in adrenal and pituitary, and other misc hormones. At even a mention of this question, I lose their intent to help. I just think they don't know and there is really only one thing bigger than this growing health crisis, that is a doctor's ego. I could tell right away that if they didn't think they were going to be selling me a CPAP machine, they really had no use to spend their time. I found in the sleep field, it is all about selling the machine. Wow doesn't that sound bitter and resentful? I don't think so. I think it is realistic to say that our medical system is in a mess. I've been to so many supposed top flight institutions and have noticed that once I received the stamp of "not for this world much longer" the doctors started confiding in me this candor I had not experienced. It was almost if they wanted me to forgive them for not accepting me as a patient. I heard it all, every excuse in the book. I think I would have rather they said," I'm not experienced enough and be done with it. " or at least some remark that gave a semblance of compassion. I had always considered that we were not paying for manners, it was for the expertise that was costly. I have found a high ratio of doctors to specialize themselves right out of the human body. Besides the official specialties of medicine, they have areas of interest now, which defines who they want as patients to an even greater degree. I also haven't found their offices to be crowded, if anything, they were bare. Which is probably why they wanted me to come in for an appointment even though they knew they wouldn't accept me as a patient. I've traveled hundreds of miles to be turned away in ten minutes.

Not able to find anyone locally that didn't treat me as some freak passing me around town as an abnormality, I had my second sleep study over 300 miles away. It showed over 112 events per hour, which they didn't seem that excited about the improvement. I guess it is all horseshoes and hand grenades at this point, right? I was then prescribed a machine and an inadequate mask. The initial months I couldn't get any mask company to service my account, so I didn't even know if it was working or not. To make a long story short, I believe there were several problems that led to an eventual disfunction completely. Despite various attempts at sunlamps, etc. my ciradiun rythym is shot. Similar to blind people, my body clock is 24/7
This has been a very good "one person clinical trial" on "how long a patient can maintain some level of normalcy without one bit of encouragement." It appears to me as if the medical goal is to see how difficult you can make it for the patient so that when treatment fails, you can blame them for not complying. I find it is difficult to establish any kind of team effort, any kind of common goals, if even the doctors aren't clear on what your illness entails. Most haven't even pretended to know what central sleep apnea is. For them to provide me with any encouragement/ support when they haven't a clue as to what I go through every day is impossible. In their opinion, its not their problem.
One of the worst days for medicine I think is the day they divided us up into body parts . Gone were the days that consideration was given for the whole person.

Disclaimer: I've had a few excellent doctors with the highest of integrity. They just kept retiring or moving making it impossible to get any continuity in any protocols. My biggest hinderance is the lack of intent to actually find out the cause of my illness. I've gotten every excuse in the book, but it boils down to the doctor's interest being in only symptom managment, not a cure. I sought out pain doctor after another to see if the pain patch I was on could be causing the problem. No one would ever admit that it could.
I'm not blaming them for being ignorant, just uninterested. I have not been ill much in my life, and I guess I expected a whole other game. I read somewhere that Americans suffer a two to three year lag in diagnosis behind European countries due to the depression diagnosis that is an automatic stamp anytime you present with fatigue as a symptom.
So even though I am trying to comply with the CPAP, due to the lack of commitment from doctors that it is beneficial, it is hard to get others to help me keep it going. I may wear it two hours per day, if that much, falling asleep at wrong locations other times of the night and day.I don't mind the mask, once I ordered ten masks to try on, I found the vista worked the best. Still.....I've not had one day, even when I've worn it the full sleep period, that I've woken up feeling like I've slept. I really feel that the mask has not presented any difficulties, at least not so that I would not gain any benefit..... but I do find constantly that I wake after a few hours with the mask around my ankle, arms or other body parts with no knowledge of how it got there. I cannot seem to catch myself with the "mask musical chair game", but I suspect that at some point I must feel as though I'm suffocating?
And although depression was not a source for my problem, I wonder if it can impact it now. Every time I think of going to bed, I face that number. The one that says I won't be breathing that many times tonight. I'm going to be a first time grandmother in a few months and for the first time in eight years I felt hopeful. Yet,the more I thought about it, unless I am able to find someone who will help me find the source of my problem, I'm still going to be worried every night,the problem hasn't changed. Now I simply have more to lose.


I think everyone who has patiently read this, which is the only thing I accomplished today, should get five stars for being saints. Thank you. Even being heard has value. My mantra is "one person - all people" believing that even a life crippled has meaning and purpose. I guess I would.
I spent an entire year compiling all of medical documents into a book form and PDF CD ROM. that includes all testing and diagnosis for the four diseases that I've been dx with. I have no idea how long it will take me to send it to any doctors.
I want to find another sleep doctor, to begin again, but I've recently started HBOT treatment leaving no time in the week left over.Currently I have a vpap that is set at 4/8. But next time I need to have more confidence that the system is working, so I need some way to verify this. It is a catch 22. I need awake time to find the resources to get well to be able to have more awake time.
The worst day of my life was not the day I received my dx. The worst day was when I sat in the doctor's office realizing that I was going to be my only advocate. And I was the one that was sick.

peg

[chdurie2]

peg:

i don't know anything about csa, but has anyone (or you) ever thought you might have chronic fatigue syndrome? and any possibility you could go to the mayo clinic? and yes, most of us who have had extended illnesses, particularly those the medical community doesn't understand, have found that we have had to take responsibility for our own illnesses and avoid doctors who think that a poor prognosis for recovery means that there is "nothing in it for them."

caroline

[NightHawkeye]

Peg, are you on an S/T machine? Is your machine a VPAP S/T? It doesn't sound like it from what you wrote. A few folks here have central apnea and use an S/T machine. I thought it was the standard of care for central apnea, since it acts much like a mechanical ventilator.

Please don't give up. Another approach being used to treat central apnea for some patients is increased CO2. In some folks the CO2 threshold is shifted and that is what causes the central apnea.

Just a couple of possibilities, in case you haven't seen them before.

Regards,
Bill

[krousseau]

Yes, Grandchildren do up the ante!
Glad you came back to this forum. Where do you live? Medicare? Insurance? You mentioned being homebound. Please take everything I'm going to advise seriously. If you can't understand or do any of them send me a message and I'll send more information. If it seems like a lot to do-pick one item a day.

Please reregister so you can send & receive private messages if you want. Fill in your equipment and city/town you live in. Do not look for the old forum registration.

Please hear that you have many signs of a situational depression-it is normal in your situation and would be considered a chemical imbalance-in this case medication is generally very helpful. Ask your doctor for medication. If he/she won't do that-get another doctor. You are fighting for a life with your Grandchildren.

If you have Medicare and/or insurance-have you had home care nurses?

If you don't have the machine NightHawkEye mentioned-get an order and letter of medical necessity (LMN) for one from a doctor-they have standard forms.

Send the order and LMN to a local DME that has a respiratory therapist that will visit you at home.

Also look for a Home Care Agency, Visiting Nurses Agency, even try Home Hospice and refer yourself-usually they then send out a nurse to see if there are any services they can provide. If you are homebound they can monitor medications-get a new antidepressant for them to monitor. A new machine is a good reason for them to visit. They can provide the support to make some changes in your treatment. They also have social workers who will know how to get you hooked up to some support when they "discharge" you from their service/agency.

PM me-I don't have a lot of CPAP experience-there are plenty of people here with that- but I do have lots of Nurse Practitioner and Home Care experience. I use a CPAP and I'm a Grandmother too. I will check back to the forum often hoping to hear from you. Kay

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CPAPopedia Keywords Contained In This Post (Click For Definition): medicare, CPAP, DME

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CPAPopedia Keywords Contained In This Post (Click For Definition): medicare, CPAP, DME

[Guest]

My continual attempts to use the CPAP have not been successful. I do not have my husbands commitment to putting the unit on my face when I fall asleep at various locations.

I was then prescribed a machine and an inadequate mask. The initial months I couldn't get any mask company to service my account, so I didn't even know if it was working or not. To make a long story short, I believe there were several problems that led to an eventual disfunction completely.

So even though I am trying to comply with the CPAP, due to the lack of commitment from doctors that it is beneficial, it is hard to get others to help me keep it going. I may wear it two hours per day, if that much, falling asleep at wrong locations other times of the night and day.I don't mind the mask, once I ordered ten masks to try on, I found the vista worked the best.

Peg, the only issue I can address is that of your cpap therapy. You wrote:

I may wear it two hours per day, if that much, falling asleep at wrong locations other times of the night and day.

if you don't use the machine consistently for every sleeping moment, you won't know if it will help you. This is not an instant fix. Even with consistent use, it can take weeks before you start to feel the difference, so you have to keep it up. Your success is not dependent on your doctor's commitment or getting help from others. It is up to you and no one can do it for you. I understand you are frustrated and angry that your family and doctors aren't being sympathetic, but not using your machine is like having medicine available and refusing to take it.

Check to see if your ResMed VPAP has timed backup. If not, I'd suggest you contact your doctor to write a prescription for a bi-level machine with timed backup. It's purpose is to treat central sleep apnea. But you will only reap the benefits if you use it every time you sleep. Your future health lies in your own hands.

[Wulfman]

Deleted

[Sleepless on LI]

Peg,

Your story has touched my heart, as I'm sure it has for everyone who's read it. I don't know very much about central apnea, especially in such an extreme situation such as yours, but there is someone on this site who also suffers from centrals who may be able to help you. Her name is Christinequilts. When I first came here, she offered some amazing insight into my problems. And since you two share a common bond with centrals, perhaps she can give you some advice or information that you don't have. If nothing else, it's always good to have someone to talk with who understands what you're going through firsthand. Maybe you could private message her. I haven't seen her post in awhile, but she would get the email that there is a message waiting for her if you do that.

I wish there was more in the way of help I could offer. Please know my prayers are with you. Although it doesn't sound like you have, please don't ever lose faith. I truly believe that as long as there's breath, there is hope. And if ever you need a friend, you have a web site full of them here to lean on. God bless.

[rested gal]

Peg, are you on an S/T machine? Is your machine a VPAP S/T? It doesn't sound like it from what you wrote. A few folks here have central apnea and use an S/T machine. I thought it was the standard of care for central apnea, since it acts much like a mechanical ventilator.

Please don't give up. Another approach being used to treat central apnea for some patients is increased CO2. In some folks the CO2 threshold is shifted and that is what causes the central apnea.

Just a couple of possibilities, in case you haven't seen them before.

Regards,
Bill

I echo what Bill said about getting on a bi-level machine with timed backup capability... a machine with S/T at the end of its name.

Here's a link to some excellent posts by christinequilts:
Links to Central Apnea discussions

And a link to the other possibility Bill mentioned... to do with some people needing CO2:
Nov 06 2005 subject: Sleep Disordered Breathing - a New Category. Excellent artic topic started by frequenseeker

I'd also suggest you contact "sleepydave" via PM on the message board called apneasupport.org. Send him the URL to your topic here. You can read a lot of his posts in the Sleep Studies forum of that board. He's a very smart guy who manages an accredited sleep lab in Connecticut. He might have some more suggestions for you.

[pipsywiggins]

Thank you Caroline, Bill, KRousseau, Lori, Wulfman, and the Guest :

I appreciate your thoughts and the time and energy it took to respond. I shall try and answer your points of consideration the best I can.

Caroline: Thank you for your ideas. I did go to the Mayo Clinic in the very beginning when my symptoms and lab work showed a reduced immune system and low endocrine lab results. They never suggested a sleep study despite my fatigue symptoms. Their only finding was asthma. I've also seen other specialist across the country. I did not mean to give the impression that my purpose was just to complain, as possibly the one guest who responded, may have interpreted my story. It was just that the events as they occcured to bring me to this point today.

Bill: I do not know what a VPAP S/T machine is, so I will need to look that up before I can answer your question. I have the resmed VPAP machine but in reading many of the postings here, my machine does not have the same features. It turns off and on and that is about it. I have had a bit of trouble with it resetting lately. As I mentioned, I have found that I am removing the mask during the sleep period without realizing it. Which leads to the machine registering the major leak. It has not been resetting correctly lately.
Because I had the study in which the doctor prescribed this treatment over 300 miles from my home in San Antonio, TX. It has been almost next to impossible to get any kind of service. There has not been any resmed representative in town and upon contacting them, they wanted me to drive 120 miles to bring them the machine. I couldn't seem to make them understand that I was much too ill. Finally they have found someone to take this area, but he indicated that it wasn't full time. I guess this company doesn't have many customers here,although it is one of the most populated cities in the country.
Anyway, thanks Bill. I appreciate your input and will check into it some more.

Kay.... Thank you for your thoughtfulness in such a thorough answer. I want to pm you to get more details. I do have insurance and was awarded disability very quickly. The only times I have had anyone come to the home is when I contracted an MRSA last year and they had to administer IV antibiotics. I wish I could get home health to administer the monthly IV of gamma globulin that I receive now, but thus far they've required that I go to this infusion place. It is an all day affair and very exhaustive.
I have asked physicians before about some home health assistance, but for some reason they didn't know how to proceed or felt that my family should help. I had asked for assistance because someone needs to be present when I bathe for the problem that I easily fall asleep in the tub. I tend to either not eat during the day, or get something like cereal because I am not able to cook or prepare anything more complicated. I have a college aged son who is also sick like me. He is doing a little better, so sometimes he will fix me something. He is on the 10 year college degree plan, I kid him, but he does the best he can.

In reality, not all doctors will prescribe these types of machines for central sleep apnea. I think the reason I came to here yesterday was to read posts trying to find tips on being able to find the right kind of doctor before I would have to invest much time and energy. My insurance is good, but the energy it costs me to keep making appointments that don't pan out is very costly. I was told by numerous doctors that I probably wouldn't find anyone locally to help and would probably have to find a national doctor. That is pretty overwhelming to me. I guess I never realized the difficulties involved when you have a rare disease that is not studied much.
I still try to research when I can wake up enough to get online. I still believe that I need to find the cause of the central sleep apnea. Thus far I've not found a doctor willing to help me find the problem.

I want to address the Guest who responded to my post with this:
Quote:

"if you don't use the machine consistently for every sleeping moment, you won't know if it will help you. This is not an instant fix. Even with consistent use, it can take weeks before you start to feel the difference, so you have to keep it up. Your success is not dependent on your doctor's commitment or getting help from others. It is up to you and no one can do it for you. I understand you are frustrated and angry that your family and doctors aren't being sympathetic, but not using your machine is like having medicine available and refusing to take it.

Check to see if your ResMed VPAP has timed backup. If not, I'd suggest you contact your doctor to write a prescription for a bi-level machine with timed backup. It's purpose is to treat central sleep apnea. But you will only reap the benefits if you use it every time you sleep. Your future health lies in your own hands. "

I understand your points completely, I think I failed to communicate the amount of time that had transpired to reach this point of where I have found myself not using the machine.It has taken years for the subtlechanges to occur before you find yourself realizing you've lost ground. You said that not using the machine was like having medicine and refusing to take it. I didn't mean to imply that I was refusing to use the machine. I use the machine every chance I get that I intentionally go to bed. It is those times of falling asleep in the chair, and other places that I get frustrated with myself for not using it. As I tried to express, I don't have a problem with the mask or the rate of air flow. It is not that I seek sympathy from doctors or family. I really believe that I can have a better quality and not be so dependent, but I need for them to also believe that.

I'd like to knowif anyone else has the problem of waking up with the mask not one your face. I asked the doctor and the mask company how to resolve this. Do you know what they replied. The mask company told me, "You just have to decide that you are not going to subconsciously remove it," and eventually you will quit taking it off. Is this true? It hasn't worked for me that way. I was looking through postings here to see if others had this experience where they solved it by this manner. I think there must be a reason I'm removing it.
Everyone assumes that the patient is stubbornly refusing to wear the mask and their method of treatment is "tought love" But I don't have a problem wearing the mask. You cannot know how upsetting it is to wake up and realize that once again I slept without benefit of the machine because I somehow removed the mask. I've tried just about everything but duct taping it to my face. Believe me, I do understand the importance of complying with treatment, although no one has said if I am still having apneas with the mask.

What I failed to communicate in my introductory post in describing the problems I've come up with in the past was that I was looking for pointers on how to choose the best sleep doctor. My needs require a neurologist although I do not know why, that is just what I'm told. The neurologist doctor that I had didn't know any more than the pulmonologist. If I had my wishes come true......there would be a way to find out if a doctor has experience in central sleep apnea before so much time gets wasted. Thus far, the doctor's I've seen go through the motions, and then about six months later they say that they cannot help me any more, that I need to see someone with more experience in the special situation. I'm starting over again now. Maybe there are no real answers. In this vast world of the world wide web I would think that somehow a patient could find out what a doctor has experience in. Not just what he chooses you to know. Thus far, I've only been able to find out what the doctor wants me to know. They promote a certain area of interest as a sub-specialty in an attempt to promote that most of their patients fit into that criteria The past six months I've been trying to research online to see if I can find out more information.
To the guest that implied I was waiting for the doctor's or family members to solve my problems, with this quote:

Your success is not dependent on your doctor's commitment or getting help from others. It is up to you and no one can do it for you.

Doesn't doing for yourself also include when to ask for help? And can one hope to receive help if they ask.
It has been my experience that whenever a doctor .....oh gosh, I'm not even going to go there. All I can say is that if a patient is paying for assistance, then they should expect to receive what they pay for. I realize that my situation is rare and thankfully not the norm. However I do believe that if a doctor's staff screens the doctor's calls and makes an appointment with a prospective patient agreeing that the patient fits their criteria. Then a patient should be able to expect some kind of assitance,a referral or guidance or ideas for the payment of their services. I've been surprised at the number of occasions in which a doctor has concluded during the first ten minutes of the 1st appointment that he/she cannot be of help to me. Although I'm dependent upon my husband to drive me to appointments, I have dedicated my time to solving this mystery,not for myself, but because my son has the same problems. I realize that my problems are unusual and it probably was not fair to discuss it here where members won't experience the same issues. I apologize.

Which brings me lastly to thank you Lori, for your kind support. I somehow manage. Two years ago, the doctors didn't give me any longer than six months to live. Although I cannot credit any sleep doctor being the force behind this benefit thus far, I"m hopeful that I will be able to find a doctor soon that has some new ideas. I hope that I can find some information online as to equipment that will be beneficial as I've not found that doctors are well informed on the equipment end of this illness. They tend to find one machine they like and use it for everyone, irregardless. It has been my experience in the other illnesses that I see specialists for, that I must find appropriate treament for which they then agree to. I came to this site so as to be very prepared before I go to another sleep doctor.

Okay, this has consumed my day....Thank you to all who have been helpful. I do appreciate your concern and you input in helping me build the best care possible.

Peg

Oh, after looking for my user name for several hours, I just signed up again....as "pipsywiggins" for any that would like to send me a message. I don't want to tie up any more of your time without your permission.

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CPAPopedia Keywords Contained In This Post (Click For Definition): resmed, Prescription, Bi-Level Machine

[brasshopper]

When I was just a kid of 20, I used to spend nights woth a friend who was a sleep lab technician - when I was bored and insomniac, I would visit him and watch the paper roll off the charts.

Back then, if you had a sleep disturbance, your only hope was to go to someplace like Shands (associated with the University of Florida) and hope that the people who were doing sleep research would take your case. They were the only people who could diagnose you - and, while at the time, they were mostly interested in building baselines for what normal sleep was, they were also the ones who could record your sleep and try to help your doctor understand why you had what you had.

Were I you, I would look to see who was publishing, write a note with a summary of my case, and send it to them.

The answer to, "What might have caused your CSA" might be a paper for some doctor-researcher who is on a publish/perish cycle at his university. But the people who do the research are also the people who have more than a mechanical understanding of the issues.

Pain patch? I only know of two - there is the Duragesic (fentanyl) patch and there is a morphine patch - the duragesic patch is more common. It is also singularly effective against chronic pain that can't otherwise be treated.

There are chronic pain groups - and those pain groups generally have lots of people on the fentanyl patches. If, in fact, the fentanyl has caused central sleep apnea in very many cases, I would think that you might find anecdotal reports there.

But, well, have you considered approaching those doctors who are doing the research into sleep?

You might consider calling a medical school library for leads.

[Yoga]

Peg,

I am so sorry to hear of all of the problems that you are having. Were you adquately treated for lyme disease? Did your son also have lyme disease? It can do terrible things to people. True lyme disease doctors believe that one must be treated for 6 months with antibiotics. Lyme disease is most prevalent in Connecticut, New York, & New Jersey so that is where most of the lyme knowledgeable docs are located.

Since both you and your son are having the same problems, it would seem
possible that it could be linked to lyme disease or possibly have a genetic component.

[NightHawkeye]

Peg, I agree with RG about talking with SleepyDave at the ASAA forum. Dave has exhibited considerable knowledge of central sleep apnea.

As for your mask not staying on, I have to wonder if maybe you take it off because you simply intend to get up, but then, in the process of getting up you instead drift back to sleep. As sleepy as you say you are, that would seem likely. I know that I've certainly found myself drifting off to sleep instead of doing what I'd intended to be doing sometimes. Maybe the solution is just to decide to sleep for a while longer, simply never take the mask off, rather than trying to get up. Just a thought . . .

This has been a very good "one person clinical trial" on "how long a patient can maintain some level of normalcy without one bit of encouragement." It appears to me as if the medical goal is to see how difficult you can make it for the patient so that when treatment fails, you can blame them for not complying. I find it is difficult to establish any kind of team effort, any kind of common goals, if even the doctors aren't clear on what your illness entails. Most haven't even pretended to know what central sleep apnea is. For them to provide me with any encouragement/ support when they haven't a clue as to what I go through every day is impossible. In their opinion, its not their problem.

I'd love to compare notes with you about the inadequacies in diagnosis and treatment exhibited by members of the medical community. First, though, you need to expend your energy towards improving your apnea treatment now. Your story is one that deserves to be told again, and again, but that can wait until your situation has improved somewhat.

I wish you the best. Please keep us informed.

Regards,
Bill

[krousseau]

Looking at many websites of sleep clinics in Texas and California this was one that listed several neurologists on staff. Figured if you went up to the Mayo Clinic you might be willing to try for California-takes a while to get an appt but you might get in on an urgent basis. Try to whittle your history down to 1 page large type.

http://www.stanfordhospital.com/clinics ... pDisorders

Location: Psychiatry Building
401 Quarry Road
Stanford, CA

Room/Suite: 3301

Mailing Address: 401 Quarry Road
Stanford, CA 94305

Contact Phone: (650) 723-6601

Fax Number: (650) 725-8910

Days and Hours: Monday-Friday 8:30 am - 5:00 pm



Stephen N Brooks, MD Sleep Disorders & Neurology
Theresa Buckley, MD Sleep Disorders & Neurology
Christian Guilleminault, MD Sleep Disorders & Neurology
Rachel Manber, PhD, Psychology & Sleep Disorders

[krousseau]

Oops sorry thought I PM'd that last message. Was that a no-no, should I delete it or is it OK to leave it?

[chdurie2]

peg:

many of us have had or still have the problem of waking up without our masks on and no memory of having taken it off during the night. i think what your dme said was right -- but i don't mean it in that unkind way -- but i think there is a psychological aversion to the mask for anyone that is best recognized. others here have suggested "making friends" with the mask and wearing it while awake or watching tv or whatever. i stopped taking off the mask in the middle of the nite most nites when i stopped trying to make cpap perfect and realized that whatever i was doing was probably as good as it gets and i wasn't going to get overly involved in whether the mask stayed on or off. Just one nite at a time, put the mask on, and if it came off during the nite, try again the next nite, rather than fretting about it. so the mask just became part of my routine. i also tend to forget things easily, so mask marks actually help me determine five minutes after i get up whether the mask was on or off and at what point in the nite it may have come off (no marks means it came off early, etc.)

i understand that you have a lot of problems but it would probably help if you would not allow yourself to fall asleep anywhere but a bed. if you start getting sleepy, drowsy, tired, whatever in a chair, go to bed, whether it is 11 p.m. or 11 a.m. that will help you integrate the mask/machine into sleep on a regular basis. it's really important to try to develop as much of a good sleep hygiene program as you can--maybe more important for you than for many. i've pm-ed you about my own experience with this--when i was a mess, i pulled out a discipline from i don't know where, not all the time, but a lot of the time, and it saved my life.

Caroline