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Advice needed for struggling CPAP user
#31
What is the item in your profile "Diagnosed with IDSPS/IDSPD"? A Google search does not yield any results.

Edit: never mind, found it in your first post:
Quote:Irregular Delayed Sleep Wake Phase Disorder since I was a toddler, it prevents me from having any kind of set schedule with my sleeping routine. I have had 5 separate sleep studies done and have not been able to fully complete a single one. The only data I have is from 1 hour and 45 minutes I was able to sleep during one study where I had the flu, was running a fever, had taken 650 MG of Hydrocodone and 300mg of Gabapentin for back pain and was up for 49 hours prior to the study (the sleep tech was surprised I was able to sleep at all.) It was this study that diagnosed me with sleep apnea with the recommendation for auto CPAP. I should also add I do not snore and I don't breathe through my mouth.

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#32
(11-01-2016, 08:31 PM)Sleeprider Wrote: You may need to consult on a hypersensitivity disorder to find a comfortable CPAP solution.

This: "Lanolin, AYR, medicated cloth tape and a homemade gel concoction I have been making with honey, coconut oil, witch hazel and olive oil on my skin" is just weird. No one can sleep with that kind of crap on their skin and it is probably the problem, not the solution.

Your problem is not with CPAP pressure, but with the interface. You seem to tolerate cloth better than silicone, and that may be a clue to the root of the problem. I would encourage you to stop adding your home-made salve to the problem, and focus on overcoming the sensitivity you have to something in contact with your facial skin through the night. The physical pain and discomfort is not normal. That is the problem, not CPAP, and this is why your supplier has given up. There is nothing they can do until you overcome this problem that has nothing to do with CPAP.


I only used the gels/tapes on the silicone masks after trying them stock. I have not used anything on my face since I started using the Sleepweaver masks almost a month ago, they have not caused any discomfort so I haven't needed to do anything else. I hadn't thought that hypersensitivity might be the problem but I will bring it up tomorrow morning with my primary care physician and on Friday with my neurologist as well, thanks for mentioning this. I am sure my insurance company hassling the DME on price lists and prior authorization submission daily for 2 weeks so I could try a new mask (1 year perscription) could of added to their resentment towards me as well. My respiratory therapist is cool but everyone else at the facility hates me now :/

(11-01-2016, 08:37 PM)Sleeprider Wrote: What is the item in your profile "Diagnosed with IDSPS/IDSPD"? A Google search does not yield any results.

Irregular Delayed Sleep Phase/Wake Syndrome/Disorder. Sometimes it is written as IDPSD, IDSPS, IDSPD depending on the doctor. Most of the doctors I have seen that even know what it is have only knowledge on DSPD, DSPS, DPSD as my irregularity symptom is rare and has not been successfully treated that I know of. It is impossible for me to keep to any sleep schedule as my circadian rhythm has no clock.
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#33
(11-01-2016, 08:37 PM)Sleeprider Wrote: What is the item in your profile "Diagnosed with IDSPS/IDSPD"? A Google search does not yield any results.

Edit: never mind, found it in your first post:
Quote:Irregular Delayed Sleep Wake Phase Disorder since I was a toddler, it prevents me from having any kind of set schedule with my sleeping routine. I have had 5 separate sleep studies done and have not been able to fully complete a single one. The only data I have is from 1 hour and 45 minutes I was able to sleep during one study where I had the flu, was running a fever, had taken 650 MG of Hydrocodone and 300mg of Gabapentin for back pain and was up for 49 hours prior to the study (the sleep tech was surprised I was able to sleep at all.) It was this study that diagnosed me with sleep apnea with the recommendation for auto CPAP. I should also add I do not snore and I don't breathe through my mouth.

Reading your first post, I tend to think the whole diagnosis is bogus with the drugs you were on. Given your efforts to make this work, and complete lack of success, I think you're one of the few better off quitting. You are depriving yourself of sleep and unless you can overcome the conditions and obstacles that prevent you from even getting a few hours of successful therapy, it is not going to work. Kick it to the curb and go to sleep. Come back at it when you are sure you need it, and can deal with the contact and fall to sleep naturally.

I asked my sleep doctor and the technologist for my 3rd study (same facility as sleep doctor) if the test results could of been bogus because of my sickness and medications, they said no but I don't really trust him given the evaluation of his care towards me in the 7 months I was seeing him. My PCP's main concern is not with the apnea (if I truly have it) so much as it is reducing the risks to my heart. Since the car accident I had in January of this year my doctor has been concerned about lowering my risks for heart complication with the medication and therapy procedures I have had done. The main issue is not having any other sleep data to confirm the initial diagnosis which is why they kept sending me back for more sleep studies.

I should also mention that because of the IDSPD I can have extreme difficulties sleeping under ideal conditions without the APAP causing me to get 2nd, 3rd, 4th winds etc. Not being able to sleep during the instances when normally it becomes difficult to stay awake but while on the therapy I cannot is what has been the most frustrating to deal with. Finding the right sleep specialist for my unique situation has proven difficult sans a circadian research group and network which has been helpful. For now I will suspend the therapy attempts until I at least see my new sleep doctor.

I appreciate the information Smile
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#34
Fubblin, something for you to consider, and you're the best judge of this possibility. Reading your first post, I tend to think the whole diagnosis may be bogus with the drugs you were on not to mention the flu and back injury. I don't know the details of that study, but the premise you have Sleep Apnea may be faulty considering the circumstances of your test(s). Given your efforts to make this work, complete lack of success, you may be one of the few better off quitting. You are depriving yourself of sleep and unless you can overcome the conditions and obstacles that prevent you from even getting a few hours of successful therapy, it is not going to work. You seem no better off today than when this thread started in September, and you had already been at this a considerable time. Maybe kick it to the curb and go to sleep. Come back at it when you are sure you need it, and can deal with the contact and fall to sleep naturally.

There are many things about your condition, and perhaps stress or sensitivity that I can't begin to comprehend. It's not even n the books. Maybe the doctors are trying to hard to pin your sleep problems on something that's easy to treat like OSA. The alternative is something that is unknown. Do what you think is best for yourself. Sleep apnea may not be your worst problem or even a significant source of your sleep disorder Best of luck getting all this under control.
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#35
(11-01-2016, 09:52 PM)Sleeprider Wrote: Fubblin, something for you to consider, and you're the best judge of this possibility. Reading your first post, I tend to think the whole diagnosis may be bogus with the drugs you were on not to mention the flu and back injury. I don't know the details of that study, but the premise you have Sleep Apnea may be faulty considering the circumstances of your test(s). Given your efforts to make this work, complete lack of success, you may be one of the few better off quitting. You are depriving yourself of sleep and unless you can overcome the conditions and obstacles that prevent you from even getting a few hours of successful therapy, it is not going to work. You seem no better off today than when this thread started in September, and you had already been at this a considerable time. Maybe kick it to the curb and go to sleep. Come back at it when you are sure you need it, and can deal with the contact and fall to sleep naturally.

There are many things about your condition, and perhaps stress or sensitivity that I can't begin to comprehend. It's not even n the books. Maybe the doctors are trying to hard to pin your sleep problems on something that's easy to treat like OSA. The alternative is something that is unknown. Do what you think is best for yourself. Sleep apnea may not be your worst problem or even a significant source of your sleep disorder Best of luck getting all this under control.

I have started seeing a group of 3 sleep specialists who combined have treated a multitude of sleep disorders, many of them being circadian rhythm disorders which is most helpful to me. Since I have still been unable to use the CPAP or get enough data from other sleep studies they have put the apnea treatment on hold and are working to to get a greater overall understanding of my main problem that has plagued me for years (the inability to maintain a sleep schedule). I have been wearing a wrist actigraphy for a little over 2 weeks now, so far the consensus seems to lead more towards a variation of non-24 and irregular sleep wake disorder but more coming up with a treatment plan is going to be tricky given all I have tried in the past and that I don't meet the full criteria of either disorder, something I did not know up until that point.

The insurance company is letting me keep my APAP machine in case it turns out that I need it in the future which is nice I guess. I will be starting a new melatonin regiment on Monday and I have also been on Ramelteon/Rozerem for a week. With these new doctors I am more hopeful than I have been in over a decade at my prospects of improving my quality of life. If it turns out later that I still need to be treated for sleep apnea I will return to these boards in the future. For now I would sincerely like to thank everyone who has given me advice, constructive criticism and offered me suggestions I would not have thought of otherwise, it was much appreciated.
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#36
Glad to hear you are getting some appropriate help. Do continue to keep us informed of your progress. Good luck.
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