ASV

[qjosea]

I have been on vpap adapt sv since Dec 09, would like to hear from any users and how they are handeling it. I had a little bit of a hard time adjusting to it but know I say to myself how did I survive without it until now. I feel great, look forward to going to bed, before I would wait until I was exhausted ready to pass out. Thank God this has changed.

[JohnBFisher]

It's GREAT to hear you have adjusted so well and are dong well.

I also have adjusted to breathing with it. I no longer notice when my ASV machine ramps up the pressure to help kick start my breathing.

But I fear good, consistent sleep eludes me. My neurologist/sleep doctor cautioned me this might be the case. Apparently the brain stem damage from my Sporadic OPCA not only impacts my breathing, it also causes dysregulation of the normal sleep cycle.

Most nights I am doing better. Unfortunately, I have some nights (like last night) that are horrible. I will have problems with cramping. I will awaken frequently. I awaken with headaches. When I have these events and also recorded my heart rate and SpO2 using pulse oximeter, I find severe SpO2 desaturations (always before I awaken or have those cramps).

Sorry it it sounds as if I'm whining. My attitude is poor this morning due to the poor sleep.

But I was in VERY bad shape without the ASV unit, so it is a Godsend! I am just glad I am doing as well as I am at this point.

[unadog]

It's GREAT to hear you have adjusted so well and are dong well.

Yes, congratulations! That is fantastic and good to hear! I think you haven't gotten more comments as there wasn't really a question.

Sorry it it sounds as if I'm whining. My attitude is poor this morning due to the poor sleep.

But I was in VERY bad shape without the ASV unit, so it is a Godsend! I am just glad I am doing as well as I am at this point.

Well, John, you are certainly alowed, after all of the positives you have contributed here! Though I am very sorry to hear that you are struggling.

Unfortunately, our lives are so incredibly complex, with so many variables, that complete success can be elusive.

Understanding cause and effect - and correlation - can be next to impossible! Hence all the whacko theores on the Internet, and tge difficulty distinguishing between real and illusory solutions.

In fact, after reading through Muffy's analysis in the "big thread", I'm amazed that we are able to breath at all! It all sounds like a nice theory that is doomed to failure in the real world!

I had 3 good, solid weeks of sleep about 2 months ago. Since then I've been trying to decide whether I do better on the BiPap or VPAP ASV. Most days I am coherent enough to write an email, which is an improvement.

Though I did have a hard time figuring out how to shop when I went to the food store a few days ago!

Michael

[JohnBFisher]

... Though I did have a hard time figuring out how to shop when I went to the food store a few days ago! ...

Oh, do I ever understand that. When I have bad days, I will force myself through work. Though some days I get to the end of the day and wonder what I did. Sigh! Fortunately, most days are not too bad.

But as you note, I try very hard to make the journey a bit easier for others. I spent years trying to get my sleep doctors to really pay attention to my increasing problems with my central apneas. Unfortunately, I did not get them to pay attention to it until it did very real damage to my body. So, I try to help others avoid the pain and frustration I experienced. If my experience can make the journey others experience a bit easier then I can justify my own difficult journey. Seems silly, but it helps me turn the lemons into lemonade.

[qjosea]

It's GREAT to hear you have adjusted so well and are dong well.

I also have adjusted to breathing with it. I no longer notice when my ASV machine ramps up the pressure to help kick start my breathing.

But I fear good, consistent sleep eludes me. My neurologist/sleep doctor cautioned me this might be the case. Apparently the brain stem damage from my Sporadic OPCA not only impacts my breathing, it also causes dysregulation of the normal sleep cycle.

Most nights I am doing better. Unfortunately, I have some nights (like last night) that are horrible. I will have problems with cramping. I will awaken frequently. I awaken with headaches. When I have these events and also recorded my heart rate and SpO2 using pulse oximeter, I find severe SpO2 desaturations (always before I awaken or have those cramps).

Sorry it it sounds as if I'm whining. My attitude is poor this morning due to the poor sleep.

But I was in VERY bad shape without the ASV unit, so it is a Godsend! I am just glad I am doing as well as I am at this point.

Hi John great to hear from you, I can tell you this machine is miracle. I take it everywhere I go, I went to Vegas during spring break and it flew with me. This summer the wife and I plan on doing a lot of travel and if I forget the wife I know the machine will be in the back seat of my car.LOL I hope they can find something to help you cope with your neurological problem. I just got a letter from my sleep doctor he just accepted a position with a hospital in town to be on their board. He did say that they have a replace for him from the faculty at Duke University. I know they have great doctor's, I hope the replacement is one of them. Again great hearing from you take care of your health.

Jose

[dsm]

Jose

Certainly am a fan of ASV therapy (for myself). My real breakthrough though, has been in getting my Vpap Adapt SV to provide consistent therapy because I found a way to stop the repeated patterns of leaks that were common with that particular machine (its infamous leak intolerance). The solution was of course using one of padacheeks new anti-leak straps for my quattro (or Ultra Mirage) F/F masks.

But like JohnB, when on this machine, there are times I will get leg cramps - increasing the epap-ipap gap reduced them but they remain intermittently. I just had 2 days without my machine (had no time to pack it) so resorted to Nasonex as my only breathing solution. No hint of any cramps !, but I did miss having the machine.

Cheers

DSM