No Inspiration

[hacknea]

It's been 2.5 years, and I still rarely use my Inspire, much less a CPAP/BiPAP. The Inspire keeps me awake all night, even worse than a CPAP/BiPAP does.

I am thinking of having it surgically removed. I know that sounds heretical.

I am of normal weight (BMI 22 -- 6'0" tall male, 165 pounds), I don't smoke, and yet I have extremely severe sleep apnea, enough to cause me to fall asleep at the wheel and total my car 3 years ago. Last week I woke up in bed with a 155/100 blood pressure, 93% SpO2, and 102 pulse, at rest. I was also sweating profusely. I do not have the flu, COVID, or any other infection.

I also have severe stomach pain and nausea upon waking, but no acid reflux or ulcers -- an upper endoscopy found no scarring, bleeding or H. Pylori infection, and proton pump inhibitors / acid reducers have been totally ineffective.

I think I might have relapsing polychondritis, since my outer ear ruptured last year, with blood and pus oozing out of it, and I have a deviated septum without ever having any trauma to the nose.

Unfortunately, I have to continue doctor shopping until I find one who takes it seriously enough. Most doctors just label it as psychosomatic anxiety.

[Janknitz]

I have a friend who got pregnant in high school, even though she was using birth control. It was probably antibiotics she was taking at the time that made the birth control ineffective, but my mom said something I always think of when people don't use treatment they've been prescribed. "Birth Control Doesn't work in the drawer". Neither does a BIPAP/CPAP, or an Inspire remote.

You have severe apnea, you have an Inspire device implanted, and you have BIPAP, but you don't use either. And now you are having other issues that may or may not be related to severe untreated apnea. Are you waiting for your apnea to cause another car accident to kill you or someone else? Are you waiting for the long term effects of untreated severe apnea to turn you into a vegetable? That may happen faster than finding a doctor these days you can be happy with.

Using Inspire or a PAP machine is HARD. So are the long term effects of severe untreated apnea. Choose your hard.

[Julie]

Your stomach problem is likely related to (or just an extreme case of) aerophagia - please use forum search bar for it and see lots of info. Normally the fix would be to slightly lower the min. setting by a couple/few #s, but you sound like you have a more serious case, so if the above doesn't help, please talk to a sleep doctor and/or at least your GP about that. I'll leave the rest of your note to others with more expertise. What I would NOT do is assume/guess at the rheumatoid polychondritis thing without seeing more MD's - it's not something normally related to Cpap or OSA and is not common in any case - not something to just guess at and/or treat yourself for at all. Janknitz's note is also good.

[ChicagoGranny]

1.

I am of normal weight (BMI 22 -- 6'0" tall male, 165 pounds), I don't smoke, and yet I have extremely severe sleep apnea

"It's not the size of the neck on the outside, it's the size of the airway on the inside." - Dr. Mack Jones


2. During qualification for Inspire, did you have an airway examination and discussion with an ENT? If not, you should get that done ASAP.

3.

I think I might have relapsing polychondritis

Yes, you should pursue that and get a medical diagnosis before assuming you have it.

4.

even worse than a CPAP/BiPAP does

I bet you didn't have a good support group when you were trying to use CPAP. Why don't you dust off your machine and let the forum members teach you how to use OSCAR and how to optimize your CPAP therapy.

Welcome to the wildlife park!

[hacknea]

Although I had an Inspire installed 5 years ago, right after a non-fatal car crash caused by OSA, I have rarely used it. As soon as it kicks in, it wakes me up and keeps me up, even at the lowest setting, and so it does not provide any relief over sleeping without Inspire. I've been to over 8 appointments to over 3 sleep specialists to reprogram my Inspire, and so far none of them have provided relief.

Today, I obtained a used Inspire 2740 programmer, the tablet device with a transceiver that the sleep doctor places on your chest when programming your Inspire, for under $300.

I have downloaded the 2740 manual and will try to use it myself, trying to find the right settings to relieve my OSA. I can change the settings every week, while it would be prohibitively expensive to go to a sleep specialist every week, and if I only go once every 3-6 months, I will find the settings are wrong on the first week, and I will immediately stop using my Inspire until my next appointment.

To me, programming my own Inspire is no more unethical than programming your own CPAP/BiPAP levels. It is my body, and I know more about my Inspire's effectiveness than anyone else. The worst it can do is wake me up -- a hypoglossal nerve stimulator is not going to make me die in my sleep, while not treating my OSA increases my risk of health problems or even death.

I've gotten used to being tired all day for over 8 years now, so being able to program my own Inspire might provide relief. I'm a software engineer, so I am used to programming.

[ChicagoGranny]

no more unethical

It's not unethical AT ALL.

[hacknea]

It's not unethical AT ALL.

I am an austro-libertarian, so I agree wholeheartedly, but this is not a forum for politics.

I just want relief from from OSA, and I finally have another tool.

[Nocibur]

I be a Astro-Libertarium...

Well there's your problem right there.

[ChicagoGranny]

I am an austro-libertarian, so I agree wholeheartedly, but this is not a forum for politics.

If you search this forum, you can find dozens of Methodenstreits.

[hacknea]

I be a Astro-Libertarium...

Well there's your problem right there.

Please go back to sleep, and don't misquote me. I have enough troubles as it is.

[Dog Slobber]

so being able to program my own Inspire might provide relief. I'm a software engineer, so I am used to programming.

This statement really doesn't make sense. It's not something a competent Software Engineer would say.

The term "programming" when used in the context of writing executable code, is very different than the term "programming" when used to configure or set up a device. One context simply doesn't translate to the other.

[Nocibur]

so being able to program my own Inspire might provide relief. I'm a software engineer, so I am used to programming.

This statement really doesn't make sense. It's not something a competent Software Engineer would say.

The term "programming" when used in the context of writing executable code, is very different than the term "programming" when used to configure or set up a device. One context simply doesn't translate to the other.

Well, seems to me Mr. Wizard is going to need to do some "programming" in order for this endeavor to be anything more than DWing. Specifically, take the 2740 telemetry signal and link it to Oscar (which would require CPAP and a minimal setting)(at least, that would be easiest and cheapest). The signals have to be REALLY synced. Then see Chapter 5:

https://manuals.inspiresleep.com/conten ... A3fDF8MQ==

And without being in Real Time and a guy spinning the dials, finding ideal settings could take a while, then you have to account for the CPAP effect (or continue with low-level CPAP).

Further, if a (the) underlying issue is sleep continuity (which, IYAM, is a (the) major component) this is going to be an uphill (futile?) battle.

[Nocibur]

...don't misquote me.

Or else what?

You ain't the boss of me!