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[Treatment] Doctor wont raise settings higher... what now?
#21
RE: Doctor wont raise settings higher... what now?
Bottom line is if you feel better and sleep better at 8.5 than set it there. We're not here to worry about hurting the Doctors feelings.
A lot of people have problems with pressures below 6cm and feel they can't breath. When you dial in flex your right at 6cm. I noticed the machine drifts just under 6cm so that extra .5 you add at 8.5 keeps you above that.
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#22
RE: Doctor wont raise settings higher... what now?
Is it possible your night terrors are an effect of getting deep sleep? That's when we dream and untreated apnea interferes with that. I have heard people say, and it happened to me, that they experienced vivid dreams when starting CPAP. Almost like our brains are trying to make up for lost time.
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#23
RE: Doctor wont raise settings higher... what now?
I dumped my "sleep doctor" years ago.  He was useless.  I got my first APAP several years ago and have been figuring it out on my own with occasional help from this site.
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#24
RE: Doctor wont raise settings higher... what now?
Thank you for being patient, I now have some more data to share- and fyi the night terrors are not nightmares by any means. I wake up screaming and in pain, migraine and limbs throbbing like a heart attack.

I am still feeling as bad as before I had the APAP.

I did switch to a full face mask on the night of THU 10-5-17, and it is comfortable alhtpugh the NUMBERS appear worse. Sleepyhead says my numbers since I got the machine were actually the best the two nights before the doc appt where I was told to change to 8.

I had a CT scan on THU before the mask switch and my Primary doc called and let me know it was fine, haven't heard from sleep doc.

https://imgur.com/a/tWoPq
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#25
RE: Doctor wont raise settings higher... what now?
Events are well controlled, and the machine is at nearly steady pressure through the night. The VS2 is a bit of a distraction, but this looks like pretty good therapy. Your complaint about migraines and pain sound like hell. I don't know if the two are related or not, and would not know what to suggest to alleviate it. How has feedback been from your doctor's office?
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#26
RE: Doctor wont raise settings higher... what now?
Your tired because your not getting enough sleep. Looking at your hours on the machine I didn't see one with 7 to 8 hours sleep.

My mistake you had one day of 11 hours. Catchup sleeping. Dumb me. Oh-jeez
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Advisory Members serve as an "Advisory Committee" to help shape Apnea Board's rules & policies.

Membership in the Advisory Members group does not imply medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.



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#27
RE: Doctor wont raise settings higher... what now?
The doc was expecting it to be a sinus issue (and that was why I had the CT scan) and has been obstinate in that I am messing myself by not using the 8cm min. He hasn't really acknowledged the symptoms. The nights with big spaces are nights where the mask came off while I was asleep, not because I was awake during that time. I see the APAP as a necessity to life and will never voluntarily leave it off. I will say once or twice I was awoken at the other pressures and was so tired that I laid down and literally fell asleep in seconds, not putting my mask back on.

My symptoms are really truly almost back to what they were before the APAP- I have to eat when driving anything more than twenty minutes, I have brain fog, dizziness, migraine all day, and I am miserable.
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#28
RE: Doctor wont raise settings higher... what now?
It's a puzzle why you have apparently good treatment with low AHI, zero RERA and are not feeling better. The symptoms you list are associated with many disorders, including vestibular migrane, Lymes, hormonal imbalance, Vitamin B12 deficiency, Lupus, various infections etc. A simple search on the symptoms you list, may provide a list of things you can narrow down to a plausible few. The history of migraine is one you need follow up on, and a good complete blood panel would help in any diagnostic attempt. You clearly need a physician to help you that is open-minded, curious and helpful, and that certainly seems to be lacking right now.

Continue the PAP therapy, but consider investigating other conditions that may be contributing to your dysfunction. Time may improve or heal this, but the symptoms you list do not come from CPAP or sleep disorders alone. I think you have solved one part of this puzzle, and need to move forward with a physician you trust to investigate additional possibilities.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
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Organize your OSCAR Charts
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#29
RE: Doctor wont raise settings higher... what now?
I already had a complete blood work up with my primary and she had me take antiobiotic then, too. i am hoping that he is just being cautious and now that the CT came back notmal he might try a Bi-level. i really do get better when i change my pressures but it just doesnt last. crossing fingers.
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#30
RE: Doctor wont raise settings higher... what now?
SW33, I like your chances better on a Resmed machine if you have the chance. Either the Airsense 10 Autoset CPAP or Aircurve 19 VAuto VPAP would be superior options for you compared to the Philips you are currently using. I would have suggested it earlier, but figured we would "make-do" with the Dreamstation. I have seem much better results on an Autoset due to the more aggressive pressure movements for obstructive cues, and better exhale pressure relief. The Aircurve is not that much different from and Autoset except it is capable of higher pressure support. I don't know if you need, or would benefit from that as your pressures are not very high; however I think you would find either option much more refreshing.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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