NOSAJones

NOSAJones Recovered From Ret. neurologist with CPAP resistant OSA. After several surgeries... Send Message Subscribe: NOSAJones

Saturday, March 29, 2008
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OSA (obstructive sleep apnea) is a deadly disorder. It takes only ONE obstruction per hour (much less 5, 30, 60, or over a 100 per hour as seen so often) night after night, over many years, to finally catch up with you. The first symptom (what you feel) might be insomnia, fatigue (sometimes prof...

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Sue
Saturday, March 29, 2008 at 03:02 PM

Dear NOSAJones -

Thanks so much for your post and welcome to our community. Congratuations on your "recovered from" status. And you are right, it IS that crucial that people pay attention to this kind of problem immediately.

It would be great to hear more of your story. How did you recover and what is your practice now? Please share with us here - I suspect it will help both you and others in similar situations.

For more on OSA (obstructive sleep apnea) - see our section on this disorder with an overview of what it is and how you may overcome it too!

As well, Our Expert And Sleep Disorder Specialist, Dr. Allen Baivas has written several posts on OSA - they may be of interst as well.

All the best, sue (moderator)

re:If my story helps others, I&#39;m more than willing to share.
NOSAJones
Saturday, March 29, 2008 at 05:56 PM

Sue,
I'm more than willing to share my story if it helps others, it nothing else, to avoid the pitfalls I've faced during my 6 year odyssey.
One question: I'm putting together a paperback booklet to answer some of the questions I've had from friends and former patients (I'm not in active practice presently). Am I going to have any copyright issues? It's likely that some of what I have to say will likely, in some form, be in the booklet. I had planned on printing 500-1000 and giving them to friends and their loved ones who are dealing with this problem. What do I need to know to stay out hot water with your group?
Thanks,
Mack

re: re:If my story helps others, I&#39;m more than willing to sh
Sue
Tuesday, April 01, 2008 at 01:09 PM
Hi Mack. I got word back form our producer that she contacted you about copyright. Are you all set? Just want to close the loop for you. Let me know if you need anymore info, Thanks sue

Yes, all set.
NOSAJones
Tuesday, April 01, 2008 at 01:22 PM

Sue,

Thanks for helping me out. Now I can tell my tale and who knows, somebody out there in PAP-land might learn something from it (or not). Time constraints have got me right now, but I'll get back asap.

Mack

re: re:If my story helps others, I'm more than willing to share.
Karen Moore
Tuesday, April 29, 2008 at 01:27 PM

Hello There,

I saw your post that you are putting together a book for helping sleep apnea patients. I also have great interest in helping sleep apnea patients get the very best therapy so they will have long healthy lives.

I have sleep apnea and had a few minor issues at the start 4 years ago. I have been compliant and love my machine and what it does for my life.

I had strap mark issues when I started and made a solution for myself. After about a year,I thought that perhaps other people may have the same issues. This has bloomed into a business for me that is grown by patient requesting more padding solutions as well as word of mouth about the products I offer.

I now sell on the internet and would love for patients to know that there are solutions available when it comes to comfort of the masks. My website is www.padacheek.com if you would like to see what I have designed and what I now spend every day making for sleep apnea patients across the world.

Good luck with your book, and I wish you continued success with your treatment of sleep apnea.

Karen Moore

Compliance issues
NOSAJones
Tuesday, April 01, 2008 at 01:08 PM

One of the biggest problems in treating OSA is poor compliance, i.e., using the PAP machine only part of the night, like 4-5 hours out of an 8 hour nights sleep. It seems that it's almost impossible to get some patients to stick with the machine the full 7.5-8.5 hours (100% compliance). There are many reasons for poor compliance and one of the main ones is simply "they don't get the concept". What I mean by that is that patients with OSA are already basket cases and have little or no medical background. And here they are, trying to come to grips with stuff that is totally foreign to them. As a result, even when fully informed, they either do not or can not completely understand the consequences of a repeatedly obstructed airway hour after hour, night after night, year after year.
Patient education is the key, because when a rational person truly "gets the concept" he/she will do everything in their power to prevent high blood pressure, obesity, diabetes, heart attack, cardiac arrhythmia, sudden cardiac death, stroke, (and the list goes on) to save their lives. Some of the other issues of non compliance like claustrophobia should be easier to overcome with a big dose of education.
In summary: I meant what I said and said what I meant, your PAP compliance should be 100%.

OSA
Xanthid
Tuesday, May 06, 2008 at 06:15 PM

If this is so terrible, why don't the sleep doctors take it more seriously? (See my - Xanthid's- post on Still not sleeping after 2 years. ) My doc said I was just a hard case and wanted to try more drugs to keep me awake (Ritilin). He also said I was a bit obsessive when I came in with a binder full of information I had to pull off the internet - because they sure didn't give me any guidelines as to what "normal" is or what my results meant. After my 4th study.

re: OSA
NOSAJones
Tuesday, May 06, 2008 at 11:37 PM

You sound like I did a few years back. OSA and PLMS what a combination. I have them both myself. It turns out that there is a lot more to PLMS than was realized for many years. The leg movements (and sometimes arms) are only a part of something else that is going on in the central nervous system, for example, only fairly recently it's been discovered that the blood pressure goes up sky high (like 40 mm/Hg systolic) during these movements. There is probably a lot more going on in the brain that hasn't been revealed yet.

Of course this interrupts sleep too. So PLMs should be treated with a dopamine agonist like Requip or Miripex, etc., if at all possible. I'm on Requip 1mgm at night right now. I believe this disorder is the result of chronic OSA, but I have no proof of that yet.

I am a strong advocate of the APAP machine when CPAP is no longer doing the job.

The APAP machine is "Autotitrating". It has a computer chip in it which determines the correct pressure for each breath. It's like having a CPAP titration with each and every breath instead of going back to the sleep lab every 3-6 months to have a CPAP titration.

Oh, and by the way, I've asked the same question myself. Why don't the sleep doctors take it more seriously? I think one reason is that some don't fully understand these disorders; what's really going on and what it does to people.

The best sleep Dr. is the one who has OSA him/herself and is being treated for it. Unfortunately, that's not listed as one of their credentials.