Inspire

[LSAT]

Interesting article on the Inspire posted in the CPAP News at the top of this page...
http://www.sleepreviewmag.com/2017/11/i ... ions-2018/

[AMESS]

I like it-

[49er]

Interesting article on the Inspire posted in the CPAP News at the top of this page...
http://www.sleepreviewmag.com/2017/11/i ... ions-2018/

Thanks for posting the link.

As some folks know, due to my difficulties with pap therapy, I looked into this procedure in October 2015. Unfortunately, a sleep endoscopy determined that I was not a suitable candidate due to having a complete concentric collapse in the throat.

Earlier this year, I emailed the program director to see if anything had changed out of curiosity. He said there were surgeons modifying the throat structure so that people could qualify for this procedure. Hmm, it seemed like the MMA Jaw advancement surgery would have been a better option in this situation but of course, I could be missing something. Anyway, even if I had wanted to do this and I didn't, due to other medical issues, I doubt I would have been considered.

Even though I didn't qualify, I am glad it is an option for folks who need an alternative to pap therapy.

[DreamStalker]

Looks just like another more expensive excuse to not use the CPAP gold standard.

[49er]

Looks just like another more expensive excuse to not use the CPAP gold standard.

You have no bleeping idea what you are talking about. You know nothing about my situation or anyone else who decided this was a better alternative.

You write alot of great posts but I am tired of this holier than thou attitude.

49er

[DreamStalker]

Looks just like another more expensive excuse to not use the CPAP gold standard.

You have no bleeping idea what you are talking about. You know nothing about my situation or anyone else who decided this was a better alternative.

You write alot of great posts but I am tired of this holier than thou attitude.

49er

Actually I do know that CPAP therapy "IS the Gold Standard" for treating sleep apnea whether you want to believe it or not.

And FACTS are NOT "holier than thou" ... unless you were referring to yourself?

[DreamStalker]

Looks just like another more expensive excuse to not use the CPAP gold standard.

You have no bleeping idea what you are talking about. You know nothing about my situation or anyone else who decided this was a better alternative.

You write alot of great posts but I am tired of this holier than thou attitude.

49er

Actually I do know that CPAP therapy "IS the Gold Standard" for treating sleep apnea whether you want to believe it or not.

And FACTS are NOT "holier than thou" ... unless you were referring to yourself?

========

cpap is barely the bronze standard for about half of people with apnea

cpap does NOT work for many people

not everybody only has OA where a few cm of pressure works adequately

Whatever you say Mr. Gork ... whatever you say.

[DreamStalker]

Looks just like another more expensive excuse to not use the CPAP gold standard.

========

cpap is barely the bronze standard for about half of people with apnea

cpap does NOT work for many people

not everybody only has OA where a few cm of pressure works adequately

Whatever you say Mr. Gork ... whatever you say.

==========

its not what i say

its what the statistics show it actually is

Statistics say you're wrong .... again!

A quick and simple Google Search says ... About 69,500 results in 1 second

You crack me up Mr. Gork!

You really crack me up!

[Lucyhere]

Actually I do know that CPAP therapy "IS the Gold Standard" for treating sleep apnea whether you want to believe it or not.

It may be the Gold Standard for many/most people, but the "Gold Standard" may not work for everyone for a multitude of reasons. No way to know another person's situation (or the reasons) why it's not possible for them to use it, etc.

[kteague]

I don't think it's CPAP being the gold standard that's at issue. It's the "excuse" part. The stereotype. It's the sheer frustration of living with something outside the usual scope of an issue that neither outsiders or even yourself can understand. It's the judgement when one's best efforts, even after YEARS of diligence, don't yield expected results. The hurt of not being taken at your word and being believed, even after years of familiarity. Years of having a disorder that even the docs didn't understand has made me a bit sensitive to this.

[LSAT]

There is no question that CPAP is the gold standard, but, if you read the article I posted you will note that it said.....

Inspire therapy is an FDA-approved treatment for moderate-to-severe sleep apnea patients who are unable to use CPAP

[49er]

I don't think it's CPAP being the gold standard that's at issue. It's the "excuse" part. The stereotype. It's the sheer frustration of living with something outside the usual scope of an issue that neither outsiders or even yourself can understand. It's the judgement when one's best efforts, even after YEARS of diligence, don't yield expected results. The hurt of not being taken at your word and being believed, even after years of familiarity. Years of having a disorder that even the docs didn't understand has made me a bit sensitive to this.

kteague,

As usual, you nailed it perfectly. Thank you.

[DreamStalker]

Well “FDA approved ” labels really don’t make me feel all warm and fuzzy about any thing they approve. They also approve giving rat poison to patients with an atrial fibrillation (A-Fib) condition, a poison dosed to keep the patient from stroking out from a blood clot but at the same time slowly disintegrating the cellular walls of the vascular system until one day, catastrophic failure of some important artery is reached and they bleed out from a fatal hemorrhage. Oh well, it’s “FDA approved”.

As for using the word “excuse”, well OK … I can see where that might trigger some sensitive feelings from people still having difficulties adapting to CPAP therapy or from people who fail to experience any benefit from their CPAP therapy. I apologize to those people for my insensitivity. Nonetheless, the point of my post was and still is that CPAP therapy is the “gold standard”, the measure by which all other sleep apnea therapies are measured against.

Sure, if there is an alternative sleep apnea treatment that does the job, is affordable to you, and you prefer it over the CPAP gold standard – then go for it! Here is another link I found off of LSAT’s link (yes, I did read the article and a few others too) that lists 10 optional sleep apnea treatments for people “who fail or refuse CPAP”.
10 Sleep Apnea Treatments to Consider for Patients Who Fail or Refuse CPAP - Published on August 30, 2017

So instead of using the word “excuse”, should I have more appropriately used something like “substandard”? Or would that also have elicited condemnation and accusations that I had no idea what I was talking about?

I suppose my own excuse (I don’t have a problem using it on myself) for being insensitive and subconsciously using the wrong term is because of my own initial experience with CPAP. As I noted in another thread, I had never heard of sleep apnea when my doc said I needed to go to a sleep lab to get tested. I was just as surprised and shocked to learn what their solution to my diagnosis was and just like many people – I said to myself, and to the sleep doctor, that there was no fricken way I would ever be able to sleep with that stupid contraption strapped to my face.

I came home and began doing my own research. I looked for nutritional and drug options, throat exercises, dental devices, and yes the numerous surgical options as well. A couple of weeks later, when I went to pick up my CPAP machine and get fitted with a mask, I still had a very negative attitude that it was never going to work for me because I could not imagine sleeping with that thing strapped to my face all night long.

To my surprise it worked (for me) after the very first night and it changed my life, significantly … so much so that I still keep coming back to this forum to share my experiences and encourage those starting out to give CPAP their best shot because when it does work, it makes such a huge difference in the quality of life.

BTW – the “gold standard” for treating A-Fib is open-heart surgery for a procedure known as the “Maze IV” procedure. I convinced myself of excuses for NOT doing cardiothoracic surgery and instead opted for a substandard procedure known as catheter ablation. The ablation did in the end work for me to successfully treat my A-Fib – but I also experienced the associated risk complications which took me over a year to recover from.

Also, forgot to wish everyone a happy holiday season. Happy Holidays Everybody!!

And LSAT, I want to see some progress on your investigation of who is responsible for impersonating me!!

[49er]

Dream Stalker,

I greatly appreciate your post and your clarification of your position. I meant you had no idea what you were talking about when you said people were making excuses not to use pap therapy. Obviously, when you said pap therapy was the gold standard, that was an accurate statement.

I wanted to reiterate that when I was diagnosed with sleep apnea at the end of 2011, I was excited about being able to use the machine. I never thought of any other options.

Unfortunately, it just didn't work out in spite of my therapy being optimized according to sleepyhead. I kept waking up after 3 hours and had tremendous difficulties in getting back to sleep. Then the poor sleep at night led to what I call "narcoleptic like" sleep attacks during the day. In spite of my best efforts, it was a vicious cycle that sleep doctors didn't have answers for.

One doc diagnosed me with hypersomnia and suggested I try Provigil. But even a very low dose caused extreme agitation which the SOB labeled as anxiety.

About every 6 months to a year, I would get miraculous sleep that everyone talked about on the forum. But it never happened two days in a row.

Unfortunately, this year, I was diagnosed with Lymphoma. I can't prove it but I strongly suspect my sleep issues lowered my immune system making me more susceptible to this condition. It made me wonder if I hadn't chickened out of having MMA Jaw advancement surgery if things would have been different. Of course, I will never know.

Additionally, I have complicated the situation by taking Temazepam full time earlier this year. Big mistake as I am now slowly tapering off it.

I am still using the machine even though I am getting horrible quality sleep. But not using it seems like a worse alternative.

49er

[kteague]

As for using the word “excuse”, well OK … I can see where that might trigger some sensitive feelings from people still having difficulties adapting to CPAP therapy or from people who fail to experience any benefit from their CPAP therapy. I apologize to those people for my insensitivity. Nonetheless, the point of my post was and still is that CPAP therapy is the “gold standard”, the measure by which all other sleep apnea therapies are measured against... Also, forgot to wish everyone a happy holiday season. Happy Holidays Everybody!!

Wondered what your response would be, and it seems you are exactly who I thought you to be. Thank you for being open. And Happy Holidays to you too.