Had UPPP, Do I Have To Get A New Doc, To Get Help With This?

[SaltLakeJan]

I need help with this. I have checked the posts re: UPPP, none relate to my specific problem. I originally was diagnosed w/ severe Obstructive Sleep Apnea in 2000. I couldn't get a mask, at that time, that didn't leak into my eyes. I kept on with Cpap until I got Conjuctivitis in both eyes. When it would clear & I restarted Cpap, the infection would flare. The ENT who had done my sinus surgery, told me that he would guarantee UPPP surgery would eliminate apnea forever. He gave me the name of one patient who had just had it done - He said it was a bugger to get over & he thought it would work for him. The Internet didn't have topics like that, & I decided since CPAP wouldn't work for me, I'd go for the surgery. BIG MISTAKE. The ENT removed the Uluva, cut the soft tissue from my throat, and scraped the soft palate to the bone

Last fall I found several articles regarding UPPP, & that it may reduce apnea, but not eliminate it. I found a sleep doc, explain UPPP, he didn't comment on it & ordered sleep study - not titration. Result: I have moderate sleep apnea. He ordered ResMed 8 Elite 11, but made a comment that he would or might change machines.(I can't recall which he said) A month after I began, I asked the Dr. what he plans to do - all I get is evasion - "Let's see what happens in the next month or so." I didn't get the Computer program, because I didn't know what equipment he would order.

Initially, I didn't realize the surgery made my throat wide enough for a truck to drive down, and that CPAP might not work for me. I tried hard to make it successful. I had a high leak rate, & started taping, which reduced my LCD information to: Leak 0.2, AHI, 3.6, AI 0.3, HI 0.4, and similar results., my current pressure is (9.6 =cm) But, the Positive Pressure air is surging into my mouth, not opening my airway. After checking what the Posts here have regarding UPPP, I checked with my Dentist, he doesn't recommend any of the dental appliances for me. I have made an appointment with a highly recommended Sleep Dr. on May 5th. He has only agreed so far, to see me on a consultation basis.

I took my Data Card to the DME. On the Chart showing Apnea & Hypopnea, I had 18 apneas & 21 hypopneas for the night. A couple of the apneas lasted over 50 seconds.

I really need some suggestions on this - If he agrees to take me as a patient, what type equipment do I need - What else do I need to ask him? I am between the rock and the hard place if I can't persuade him to help me, since the dental device won't work for me. Please give me lots of suggestions. Jan

[DreamDiver]

...A month after I began, I asked the Dr. what he plans to do - all I get is evasion - "Let's see what happens in the next month or so." I didn't get the Computer program, because I didn't know what equipment he would order.
...
Initially, I didn't realize the surgery made my throat wide enough for a truck to drive down, and that CPAP might not work for me. I tried hard to make it successful.
...
I really need some suggestions on this - If he agrees to take me as a patient, what type equipment do I need - What else do I need to ask him? I am between the rock and the hard place if I can't persuade him to help me, since the dental device won't work for me...

Jan,

It sounds like you've been through a lot. I'm hearing this: You've seen one surgeon who did what sounds like a radical "standalone" UPPP, two sleep doctors, a dentist, and are looking for a third opinion from another sleep doctor. You've got an AHI of 3.6 and a low leak rate, but you're concerned that existing apneas are still relatively long.

First, if you're not having any more trouble with conjunctivitis and you're getting an AHI below 5.0 with a low average leak, it sounds like you're doing much better than you were. Consider how bad it must have been prior to using CPAP.

Second, Many of us without "autos" have taken our titration into our own hands because that's about the only thing a sleep doctor is going to do different. That means buying the software and learning how to use it. It's not covered by insurance, but it may be worth it for you.

Third,it sounds like you're still in the "walking dead" stage of recovery. Please consider having a spouse, family member or close friend act as your patient advocate- for any doctor visit - who knows and understands all your medications, understands the concepts of CPAP and can act to fill the gaps. Sleep docs will try to make the visit fifteen minutes or less. If you stop asking questions, they'll conclude the visit and bill you, regardless of the outcome. Have your patient advocate with you at the doctor's visit. Doctor's listen better when a patient advocate is in the room. Briefly relate your general history. The fact that you've had surgery impacts the doctor's decisions. Bring a list of questions ready and don't leave the room until all of your questions have been crossed off. Write down notes. If you can't write fast enough, get your patient advocate to write down notes. Even rehearse the questions with your patient advocate prior to the doctor's visit. Write down your patient advocate's questions too. There's a likelihood that being in the walking dead stage is going to make you think a little less clearly than your patient advocate. When you can't express yourself, get your friend to fill in the gaps and explain. Note: Your patient advocate should be smarter than you, and better rested. If your spouse, family member or friend is a little fuzzy-minded, all the warm-fuzzy moral support is not going to be as helpful for you as the person who can distinguish shades of gray in the doctor's replies and nail down fuller, clearer answers to your questions without attacking or seeming aggressive. That can be a tough call, but your health is on the line, you know?

Fourth, don't leave without getting a prescription for the machine you want. Do yourself the favor of researching exactly what machine you want and ask for it specifically. For CPAP, I would ask for an auto with full data capability. Personally, the next one I get will likely be a Sandman Auto with the heated humidier and software. An auto does a better job of titrating than a single sleep study. Once you know your preferred titration, you can set your auto to straight cpap mode at your preferred pressure. A smaller population will need a very high pressure, but at pressures like 21, it is nearly impossible to breathe out when sleeping and relaxed. Hence, these people need bi-pap. You don't fall into that category. For the price and convenience, the Sandman Auto is the only machine that will help diagnose the remaining very small fraction of people who have mixed or central apnea. If it turns out that most of your remaining apneas are central rather than obstructive, you'll have definitive proof that you can bring back to the sleep doc in the form of data printed out from the Sandman Auto. In that case a further sleep study might show you have a different kind of apnea and might need a different kind of machine other than CPAP. Frankly, the bulk of the xPAP population are well served by CPAP. The Sandman Auto will give you a wider range of options and diagnostics than any other machine available for the same price range. Plus, it's supposed to be quiet. Caveats: the Sandman Auto does not have an equivalent of Cflex or EPR, but many people actually do better without it.
That said, your s8 elite is also an awesome machine that does include EPR and is also supposed to be relatively quiet. You may find it unnecessary to change machines, especially if you can get your leaks figured out. In this case, you'll only need to buy software.

Fifth, if you haven't already, why not consider a full face mask? You can still tape, but you may find it unnecessary, since pressure between mouth and nose will be equalized. You'll still be able to breathe just through your nose without having to worry about air escaping out of your mouth.

Sixth, you've already got a great machine, and there's no reason why you can't do one experiment. If you're EPR is on, try sleeping with EPR off. That's a setting that won't involve self titration, and should be easy to change on the machine's settings panel. If you can't tell the difference or if you sleep better - and this can be the case at a pressure of 9 - you may decide you're a candidate for the Sandman Auto.

[Wulfman]

Jan,

I'm unclear from your post as to when you had the UPPP done.

The ENT who had done my sinus surgery, told me that he would guarantee UPPP surgery would eliminate apnea forever.

Did you get that in writing? I'd be thinking about suing that lying POS.

You may now need Bi-Level therapy and higher pressures.

Den

[SaltLakeJan]

Hi Den,
I appreciate your reply. The UP surgery was done in the summer of 2002. His Surgical discharge instructions were carefully parsed. In one corner, in small, barely discernable letters, I can make out UP (small letters. he wrote something on the Dr line, but I couldn't tell what it is. I think my dh filed it away for me - I was a sick puppy for quite a while. The ENT also did a couple of earlier sinus surgeries, I have 1 1/2 typed pages giving the gory details for each of those surgeries -

So the answer to your question, did I get my guarantee in writing - NO. And for the UPPP surgery, I got a general hospital check out form with a few routine items checked, and a few words half formed., no typed pages giving full details. Interesting hmmm?

I have been giving CPAP my best effort, plus reading about possible machines for me. I had read about both autos & Bi-Level. I don't have an understanding which would be better me. Could you give me some bi-level pointers I can take to the new doctor. Thanks much.
Jan

[Wulfman]

OK. Nothing recent then. (UPPP)
I also see you're not "maxed out" on your CPAP yet, either (9.6 cm.). On the other hand, the ResMed machines with EPR are sort of like a mini version of a Bi-Level machine......you get the actual drop in pressure according to which EPR setting you select. You might want to try bumping your pressure upwards and see what happens.......(or do you have any other medical conditions that would adversely affect doing that?)


Den

[SaltLakeJan]

Hey Den.
We had the same thought, about bumping the pressure, I considered it last night, but wanted to wait until someone knowledgeable on the forum confirmed how much. I was going to up it to 10cn, Should it be higher? I remember something about ResMed and 10 pressure. The Doctor originally set my pressure at 7, after about a month, I called and left a message that I was struggling to breathe, and If I didn't hear back from him, I would bump it in increments. I never heard and I kept bumping it. I dumped the EPR at the time I was having a hard time breathing. Should I enable it??

When I discovered my ^%$#^ ENT had deceived me- and that his guarantee was as worthless as he is - I was steamed. The more I thought about it, the madder I got - then last night after I finished the post, I got a burning in my stomach. Right then, I decided the ENT was "Old News" and I wasn't going to let my anger cause me as much trouble as his surgery did. I feel better this morning, and I don't have any health reason not to increase my pressure.

This is so "old hat" for you, but I appreciate your help - it makes the ENT even less important.
Jan

[Wulfman]

Hey Den.
We had the same thought, about bumping the pressure, I considered it last night, but wanted to wait until someone knowledgeable on the forum confirmed how much. I was going to up it to 10cn, Should it be higher? I remember something about ResMed and 10 pressure. The Doctor originally set my pressure at 7, after about a month, I called and left a message that I was struggling to breathe, and If I didn't hear back from him, I would bump it in increments. I never heard and I kept bumping it. I dumped the EPR at the time I was having a hard time breathing. Should I enable it??

When I discovered my ^%$#^ ENT had deceived me- and that his guarantee was as worthless as he is - I was steamed. The more I thought about it, the madder I got - then last night after I finished the post, I got a burning in my stomach. Right then, I decided the ENT was "Old News" and I wasn't going to let my anger cause me as much trouble as his surgery did. I feel better this morning, and I don't have any health reason not to increase my pressure.

This is so "old hat" for you, but I appreciate your help - it makes the ENT even less important.
Jan

The 10 cm. "thing" has to do with the ResMed Autos.....their A10 algorithm. With the Elite (or with the Auto in CPAP mode), you don't have to worry about that. I'd say, just keep increasing the pressure (maybe about 1 cm. per week, if that's enough time to get used to it) until you see some improvement.

One other thing (I just thought of as I was typing this).......what position do you sleep in? Back?....side? Side sleeping would be better (if you're not already doing that).


Den

[SaltLakeJan]

Hi Den,

I was a confirmed back sleeper, until the December sleep study - I had lots more apneas on my back, than the side. It was a hard habit to break - until I rolled a small pillow in a towel, and left a foot of the towel loose. I tuck that towel end under my side, and a similar one in front - I can't roll in either direction - It took that much to break a life life habit. Anything else you can think of for me to tell my doctor - I will appreciate it.
Jan

[SaltLakeJan]

Hi DreamDiver,
Sorry to be so slow responding to your post - things went crazy at my house - unexpected company. You basically outlined a plan to help me have a satisfactory meeting with the new sleep doctor. Seeing suggestions laid out logically helped me get over the major apprehensions I had about my appoinntment with him. I called his office & discovered he had an office manager, and that I could speak with her. I asked how long was my initial appointment was going to be. I was pleased that it was scheduled for an hour and a half. I also asked if he was accepting new patients, (he is) But she said he makes it clear at the first meeting if the patient isn't serious about therapy, perhaps they better find another doctor.

I have a question regarding titration:
DreamDiver wrote:

[
Second, Many of us without "autos" have taken our titration into our own hands because that's about the only thing a sleep doctor is going to do different. That means buying the software and learning how to use it. It's not covered by insurance, but it may be worth it for you.

I plan to buy the softwear, but I don't follow you about taking "titration into our own hands" I have read about self titration many times, but since it didn't apply to me at the moment - If you have an opportunity, can you give me a "run down" on self-titration.

Your suggestion of asking a friend or relative to be my Patient Advocate and go with me to the appointment was a brilliant suggestion. You quoted:
Note: Your patient advocate should be smarter than you, and better rested. If your spouse, family member or friend is a little fuzzy-minded, all the warm-fuzzy moral support is not going to be as helpful for you as the person who can distinguish shades of gray in the doctor's replies and nail down fuller, clearer answers to your questions without attacking or seeming aggressive. That can be a tough call, but your health is on the line, you know?

My daughter is married to an attorney, and she fits the description of a perfect Patient Avocate. She is a quick-witted young woman & as smart as she can be. I asked her, and told her the qualifications, only I modified them a bit. On the part where she has to be smarter than me - I told her, she could assume that role while were in the doctor's office, but no way was I going to let her think she was the smarter for one minute longer than the appointment. We will get together before the appointment and go over all the suggestions you listed.

You wrote that "some will need a very high pressure, but at pressures like 21, it is nearly impossible to breathe out when sleeping and relazed. Hence, these people need bi-pap. You don't fall into that catagory" I don't know which catagory I do fall into. I have upped my current pressure to 10 cn and it doesn't seem to have enough power to keep my airway from collapsing when I have an apneas. I am considering calling my DME, and ask if he has any experience what type machine is used for people who have had UPPP surgery. Do you this this has any merit, or wouldn't he know about that? If you think it wouldn't work - please let me know.

Thanks for your post - the plan out outlined, helped me greatly. Thanks again, Jan

Your post was a great help to me - It gave me so many options to consider, I forgot my apprehension. Thanks so much. Jan




Fourth, don't leave without getting a prescription for the machine you want. Do yourself the favor of researching exactly what machine you want and ask for it specifically. For CPAP, I would ask for an auto with full data capability. Personally, the next one I get will likely be a Sandman Auto with the heated humidier and software. An auto does a better job of titrating than a single sleep study. Once you know your preferred titration, you can set your auto to straight cpap mode at your preferred pressure. A smaller population will need a very high pressure, but at pressures like 21, it is nearly impossible to breathe out when sleeping and relaxed. Hence, these people need bi-pap. You don't fall into that category. For the price and convenience, the Sandman Auto is the only machine that will help diagnose the remaining very small fraction of people who have mixed or central apnea. If it turns out that most of your remaining apneas are central rather than obstructive, you'll have definitive proof that you can bring back to the sleep doc in the form of data printed out from the Sandman Auto. In that case a further sleep study might show you have a different kind of apnea and might need a different kind of machine other than CPAP. Frankly, the bulk of the xPAP population are well served by CPAP. The Sandman Auto will give you a wider range of options and diagnostics than any other machine available for the same price range. Plus, it's supposed to be quiet. Caveats: the Sandman Auto does not have an equivalent of Cflex or EPR, but many people actually do better without it.
That said, your s8 elite is also an awesome machine that does include EPR and is also supposed to be relatively quiet. You may find it unnecessary to change machines, especially if you can get your leaks figured out. In this case, you'll only need to buy software.

Fifth, if you haven't already, why not consider a full face mask? You can still tape, but you may find it unnecessary, since pressure between mouth and nose will be equalized. You'll still be able to breathe just through your nose without having to worry about air escaping out of your mouth.

Sixth, you've already got a great machine, and there's no reason why you can't do one experiment. If you're EPR is on, try sleeping with EPR off. That's a setting that won't involve self titration, and should be easy to change on the machine's settings panel. If you can't tell the difference or if you sleep better - and this can be the case at a pressure of 9 - you may decide you're a candidate for the Sandman Auto.

logically, helped me get over my apprehensions (which were growing by the hour) I called the doctors office, found he had an office manager. I got to speak with her & ask if he was accepting new patients (he is) based on patient and doctor being able to mutually establish goals for treatment. She also said at the initial meeting, if he senses the patient is a "goof off" he will suggest if they are not committed to the treatment plan, they should get another doctor.

[-SWS]

Initially, I didn't realize the surgery made my throat wide enough for a truck to drive down, and that CPAP might not work for me. I tried hard to make it successful. I had a high leak rate, & started taping, which reduced my LCD information to: Leak 0.2, AHI, 3.6, AI 0.3, HI 0.4, and similar results., my current pressure is (9.6 =cm) But, the Positive Pressure air is surging into my mouth, not opening my airway.

Hello, Jan. I was wondering if you could clarify the AHI, AI, and HI numbers. The AI and HI added together will make up the AHI score. So depending on how high or low your residual AI and HI scores typically are, you can give us a better idea how well or poorly CPAP is working for you.

After checking what the Posts here have regarding UPPP, I checked with my Dentist, he doesn't recommend any of the dental appliances for me.

UPPP surgery can sometimes make effective CPAP treatment extremely difficult. And not everyone happens to have just the right physical traits (craniofacial characteristics) to benefit from a dental appliance. So you're right to chase down or explore whatever optimum CPAP therapy has to offer. In the unlikely event that CPAP can't somehow adequately address your obstructions, there's always the option that Dr. Mack Jones selected for himself:
http://www.sleepguide.com/profiles/blog ... vere-sleep
But that technique will only address obstructive apneas and hypopneas versus central ones.

Love your sense of humor as you described employing one of DreamDiver's great suggestions:

My daughter is married to an attorney, and she fits the description of a perfect Patient Avocate. She is a quick-witted young woman & as smart as she can be. I asked her, and told her the qualifications, only I modified them a bit. On the part where she has to be smarter than me - I told her, she could assume that role while were in the doctor's office, but no way was I going to let her think she was the smarter for one minute longer than the appointment. We will get together before the appointment and go over all the suggestions you listed.

[SaltLakeJan]

Hello SWS,

Thanks for your informative post -giving me the opportunity that If CPAP isn't successful, I could go for a Tracheostomy. You join a unique group of people who have suggested (not to my face) that they might be happier if my throat was slit. My theory is, "Oh well, no matter how hard you try, it is impossible to please those --who do not want to be pleased." I might add, they were lazy subordinates. Seriously, I was excited to get your post. I need all the help I can get.

I didn't get the softwear for my ResMed CPAP because the doctor indicated he would be changing the machine - that hasn't happened yet. I am still reading the LCD read out. The stats I included were from several days ago. Let me give you the last 3 days notes, hopefully that will give you a better idea of where I am. My pressure is 10cmH20.

4-28-09 Leak 0.14 AHI 11.1 AI 1.2 HI 11.1 Hours Used 6 hrs 25 min
4-29-09 0.26 19.1 2.8 16.5 6 hrs 41 min
4-30-09 0.30 15.1 1.5 13.6 7 hrs 11 min

My leak rate was in the high 30's , and all the corresponding stats were high around April lst. A few days later they plunged to satisfying low figures. Now, they are ascending. I have consistantly using the same mask, the same taping technique. (the only thing I have changed has been my nightgown)

Since I discovered my UPPP surgery was a ficaso, and I restarted CPAP, my mouth has filled with air. There was so much pressure, it seemed to explode from my lips. I wanted this CPAP to be a success and I have given it my best effort. I started taping in February. Now, I have to awaken several times a night, pull the tape off, and exhale the accumulated air - it takes several breaths to feel comfortable. I have to take the tape off because the air pressure tries to blow the tape off my mouth-a painful experience. Because of the on-going awakenings, my sleep deprivation is worse than when I began. I can fall asleep, anywhere, anytime. I had to stand in a doctor's appointment Tuesday, I have a cranky back, and I used that as an excuse to him. Anything you can do to help me, will earn my eternal gratitude.

Jan

[-SWS]

Before I forget, I'd like to link this thread with the other UPPP thread that we currently have going. Comments in one thread may be relevant to the other UPPP thread:
viewtopic/t41490/so-very-tired-and-it-i ... ml#p364433

I didn't get the softwear for my ResMed CPAP because the doctor indicated he would be changing the machine - that hasn't happened yet. I am still reading the LCD read out. The stats I included were from several days ago. Let me give you the last 3 days notes, hopefully that will give you a better idea of where I am. My pressure is 10cmH20.

4-28-09 Leak 0.14 AHI 11.1 AI 1.2 HI 11.1 Hours Used 6 hrs 25 min
4-29-09 0.26 19.1 2.8 16.5 6 hrs 41 min
4-30-09 0.30 15.1 1.5 13.6 7 hrs 11 min

Jan, you and Mar have a couple similarities going in your threads: 1) postoperative UPPP difficulties (long term) regarding CPAP efficacy, and 2) outstanding hypopneas are predominate. However, you are running fixed pressure CPAP that leaves many hypopneas and some apneas under-addressed, and she is running APAP that cannot efficiently address her events. Another possible similarity is that hiking the pressure to address those outstanding residual events just may not be feasible, for a variety of unique reasons in physiology (presently undetermined IMO).

My leak rate was in the high 30's , and all the corresponding stats were high around April lst. A few days later they plunged to satisfying low figures.

Any guesses of what might have contributed to your high and low AHI figures? Are late evening beverages or snacks exacerbating acid reflux? Might positional sleep have an impact? Any airway-resistance impacting asthma, allergies, or COPD?

Since I discovered my UPPP surgery was a ficaso, and I restarted CPAP, my mouth has filled with air. There was so much pressure, it seemed to explode from my lips. I wanted this CPAP to be a success and I have given it my best effort. I started taping in February. Now, I have to awaken several times a night, pull the tape off, and exhale the accumulated air - it takes several breaths to feel comfortable. I have to take the tape off because the air pressure tries to blow the tape off my mouth-a painful experience.

Have you experimented with neck position yet? Think of the classic mouth-to-mouth resuscitation technique: that step where the head is tilted back slightly, to make for a more open upper airway. A small neck pillow or soft rolled towel might facilitate an experiment like that if you haven't already tried it. Unfortunately, an experiment like that can also aggravate any neck problems such as arthritis, disc issues, etc.

Because of the on-going awakenings, my sleep deprivation is worse than when I began. I can fall asleep, anywhere, anytime. I had to stand in a doctor's appointment Tuesday, I have a cranky back

Pain and sleep deprivation can be viciously cyclic: poor sleep tends to exacerbate pain, and pain tends to deteriorate sleep. Make sure your doctor understands that mitigating nocturnal pain is even more important for a chronically deprived sleep disorder patient. Some pharmaceutical pain treatments can adversely affect sleep architecture, daytime cognition, or both. So a pharmaceutical approach to pain can be a real balancing act, especially for a chronically deprived sleep disorder patient.

[SaltLakeJan]

Hello SWS, Hello seems like an insigificant greeting to you because this morning you are like a life saver to me. I have felt so alone in this situation. DreamDiver's and Den's posts helped me & but I felt a great need for it to continue. I don't know what to think about my sleep doctor, he isn't bad, he just hasn't been with me in my UPPP condition. My appointment on May 5th with the new sleep doctor is very important to me. I really appreciated being linked to Mar's posts. It is like hearing my story in greater detail. I send a her (a fellow UPPP'er) my best wishes to resolve the issues that plague her.

I understand her issues well. My pressure started at 5 cm. I couldn't breathe, the DME couldn't change it without a Dr's prescription. I called Dr's nurse, said I needed pressure increased before that night, and if the Dr. didn't object I would raise it in increments. I could tell it was an unusual request, she kinda stammered, and I said please call me if he doesn't want this. I never heard back In fact, he didn't mention it at my office visit, he also skilfully avoided answering my questions regarding a different machine. That visit was my only follow-up since I got my equipment December 31, 2008. I do have visit scheduled in a month - which I hope to cancel.

Reflux has been lurking in my life off and on for years. As I increased my CPAP pressure, the reflux increased even faster. Rooster's diet helped, but the acid reflux bothered me so much, it also impacted the sleep deprivation .
So I joined Mar in having an endoscopy, plus a motility study to see if I was a candidate for reflux surgery - I'm not! The endoscopy pictures revealed an Gastric Ulcer (I believe the stress & sleep deprivation caused this ulcer) that reflux was eating away, also gastritis, esophagitis, & Dyspepsia, and a diaphragmatic Hernia.The hernia is something new - may be caused by the effects of CPAP & Acid Reflux.

So SWS, to answer your question re: late eating. I had to ban that soon after starting CPAP. When My stats dropped I was using painter's tape. Having to take it off & reapply it during the night because of the air trying to escape thru my mouth, burned my skin. I changed to paper tape. My stats increased. I'm trying to recall if anything else happened at that time. My figures for last night had also increased. I was awake more than I was asleep
Leak .038 AHI 17.6 AI 1.7 HI 15.9 hrs used 7 hrs 41 min.

In reply to another question. My nick name should be stuffy. I have allergies and constant stuffy nose. & on-going sinus congestion. I use Grossan Nasal Irrigation twice a day, that helps, but doesn't eliminate. A year ago an X-ray revealed suggestions of COPD and Emphysema, That's why I went to the sleep doctor originally. I never got an answer on that either. However, I can exercise and not get too winded. I will bring that issue up with the new Doc.

The neck positional thing is an interesting topic. I have read about Kara's brandy keg, I'm going to research this today and implement any changes I can come up with. I do awaken with my neck bent over.

The pain issue is another thing I don't have addressed. I have always gone light on pain meds, Ibuproffen 200 mg has been a help. With the ulcer, I had to stop that & Hydrocodone makes me nauseous. To my surprise, Arthritis has expanded it's territory, and I have pain from feet to head. The spinal stenosis in my back is voicing a complaint.

All these are issues - but I am focused on getting the best apnea therapy I can, and SWS, I'm willing to try any suggestions you can come up with - I am optimistic that I will get more help here, than I do from the medical profession.

I appreciate you linking me with Mar's. I may learn something from her similar situation. Thanks again.
JAN

[-SWS]

Plenty in that post above to brainstorm about, Jan.

If you don't mind I'll move a copy of your statement from Mar's thread here as well for our upcoming discussions in this thread:

I also think I may have had apnea most of my adult life, and am considering that many of my illnesses are linked to untreated apnea. Repeat bouts of Bronchitis and Pneumonia; Reflux followed by Hiatal Hernia. And, of course it was natural for me to be diagnosed with Fibromyalgia, even tho my prime symptom was extreme fatigue. Also research by N.I.H. shows a close relationship between Diabetes and Apnea. I was diagnosed with Diabetes 15 years ago.

I think we should strive to analytically tie things together in this thread. You seem to have a small mosaic of interrelated health issues that might best be addressed with an integrative approach. So please consider this post as a placeholder for me.

I hope other posters will continue to contribute typically great ideas to this thread as well!

[robertmarilyn]

Hi Jan,

I'm going to reply to your post in my thread tomorrow, because it's late and I'm looking forward to sleeping long tonight but I wanted to comment on a few things that came to my mind as you speak of illnesses and sleep apnea. About 5 years before I had my UPPP, a doctor I had gone to because my fingers were swelling up like huge hot dogs (and I have petite little hands so this was not a fun thing), thought I had a lot of symptoms of Lupus. I looked Lupus up and I did have a lot of symptoms. He ran some tests and I was negative for Lupus but I had a problem with my hands losing circulation when they were cold (Renald's syndrome I think). Basically I started wearing gloves when outdoors if it was below 70 degrees and this helped a lot...and I kept my hands out of the freezer.

When I went to my new internal medicine doctor in Feb because I was feeling so very very tired, she ran a whole battery of tests on me and got the ball rolling to get me tested for sleep apnea. Without me ever mentioning being tested for Lupus in the past, she noticed I had symptoms that she thought could be Lupus...so she tested me for Lupus and the tests were negative. Long term sleep apnea does a lot of bad things to our body and even though it may not be the cause of other illnesses, I do think it can contribute to us being afflicted with other things. (I guess that is silly to say because we KNOW sleep apnea can cause some really bad problems).

I knew nothing about thyroid disease...but three years ago, after a long year of feeling tired, a doctor tested my thyroid in the process of running other tests and my TSH was 187!!! My doctor called me from her Karate class on a Sat night to give me the news...she was shocked and said I should have been in a coma. But the way I felt was business as usual for me...it was nice to find out I didn't have to feel THAT bad if my thyroid problem was treated. Getting on meds did help me but I knew I was still tired. I think for me, I have a hard time distinguishing just how fatigued I am supposed to try to put up with...I was told I could always have residual tiredness from my untreated sleep apnea, even once I was treated. That is what I was told again today...that even if a machine does help me, I may always feel tired.

What I think you and I and others who may be like us (they don't have to have had a UPPP, just maybe have lived for a long time with untreated sleep apnea)...what I think we need to be sure to do, is be vigilant about going to the extra effort to prevent more trouble with other diseases. That is why I jumped onto going to the gastro doc and not taking a chance of letting any more damage be done to my body by this 'new to me' acid reflux problem...maybe I had acid reflux before and didn't know it but now that I knew I was having really bad acid reflux, I wasn't about to let it go any farther without seeing a doctor and making sure I had a plan for treatment. Because...I want my sleep apnea treatment to work and acid reflux and aerophagia (another new thing brought on by the XPAP treatment) are going to be show stoppers when it comes to treating my sleep apnea. One doctor told me I would just have to get used to it and that is when I by passed her and went to the gastro doc on my own.

In the last few months I have systematically attacked areas of my health that were clouding the picture of my goal of getting help with my sleep apnea...some of these things didn't even arise until I tried a XPAP machine for the first time about 6 weeks ago. And I knew that having had a UPPP may have been a factor in allowing these things to be worse than they would be if I hadn't had it (but in my case, I really do believe it was a life saver for me...the doctor who saw me today checked out my ears, nose, throat and neck and she could see how petite I am and how there isn't enough room for things even now). Eash of us needs to sit down and gather what we know about our health history so that we are able to present it to doctors in as concise a way possible (easier said than done)...this helped me today.

It sounds like you have been reading the very good advice concerning acid reflux and like me, you've been checked out thoroughly by the doctor. Have you raised the head of your bed up? I know I did that as soon as I started having acid reflux and it helped although the meds helped even more. (Actually getting off of a straight pressure of 14 with no exhale relief was a must also). I'm wondering if you raising the head of your bed might also help your allergy/congestion problems. I know when I am congested, having my head raised some does help me...some little things like this may make things more tolerable while you continue to work to find more lasting and better solutions. We'll keep chipping away with little solutions and they may help you get closer to bigger solutions too.