ASV user - New to the Forum

[shortcake]

Hi all. I've been on xPAP therapy for 7 years and have read some great info/advice during that entire time by searching this forum, so I decided it's finally time to join and be able to help others too. Sounds like there aren't too many ASV users, so hopefully I can be a productive member of the ASV community here. My sleep apnea journey is complex, so I'll try to keep the mandatory background info short

I was diagnosed with moderate OSA when I was 21. During high school, I was naturally very thin (105 lbs) and had plenty of energy, but once college hit, I became very fatigued and gained that pesky "freshman 15". After months of testing, my GP finally referred me to a sleep study even though he knew "it'll come back negative." Behold - moderate OSA! AHI = 18.

One year later, extremely CPAP compliant but not feeling better and having strange symptoms (numbness, tingling) a neurologist diagnosed me with Chiari Malformation with basilar invagination, which was putting potentially dangerous pressure on my brain stem. Surgery was very necessary, and the world-renowned neurosurgeon was confident it would relieve the pressure enough to CURE my sleep apnea. Awesome! Surgery consisted of removing a bone in my neck through an opening at the back of my throat, then a Chiari decompression and fusion of my top vertebrae to my skull. I was in the hospital for 3 weeks, then in a rigid brace with limited movement for 6 months, and a neck-only brace for 3 more months. I regained most movement of my neck but ended up with slight weakness on the right side of my face/neck (deemed insignificant by my docs).

After fully recovering, another sleep study showed I still had OSA... AHI 'improved' to 16. Prescribed pressure = 11. Gave it a good try for a year then tried slight changes to pressure, anywhere from 9 to 13 cmH20. New sleep study showed Complex SA with very few obstructive events (note: centrals were grouped into one number - not divided into apnea/hypopnea). Titrated on Resmed ASV. Another year later, feeling only slightly better than I had on CPAP, I went to a neurologist/sleep doc thinking they might find an underlying disorder or PLMS, etc. First study was an ASV titration only, using a Respironics BiPap auto SV advanced. So I was prescribed that, thinking the different algorithm and auto-EPAP feature might work better for me. Several months later, no improvement, another study - this time a split night. Diagnostic hours showed RDI = 30, about half obstructives and half central hypopneas. Titrated on CPAP then switched to ASV. Neurologist prescribed CPAP at 8, at which I supposedly had 1 obstructive event and a few RERAs. Skeptical, I tried going back to CPAP-mode for a while and felt worse. I've since went back to ASV.

A few weeks ago I saw a different pulmonologist/sleep doc and voiced concerns that I may be hypoventilating, due to a fairly low respiratory rate and tidal volumes. He said he wouldn't be surprised if I had centrals due to the Chiari and associated surgery, but based on my neurologist's sleep studies showing no centrals during CPAP or ASV therapy, he could only suggest a new sleep study at his recommended lab to make sure it's done and scored correctly. He suggested my persistent EDS could be from my surgery (which was 5.5 years ago), which he likened to a traumatic brain injury from which I may never fully recover. The obstructive component can be explained by a hereditary "small airway" and probably worsened due to the transoral portion of my surgery (muscles probably lost some tone).

So that's where I am now. Keeping a positive outlook on things but it's hard to hear "there may be nothing else we can do for you" and "wow, you are one of the most interesting/complex cases we've seen." Here are a few other notes about my therapy:

- I had a tonsillectomy at age 6
- An ENT saw no signs of GERD but a slightly deviated nasal septum (runs in the family... Mom & brother had theirs fixed and saw no improvement in breathing)
- I have copies of all my ASV sleep studies, use Sleepyhead and track my progress closely. I have tried many combinations of EPAPs, PS, etc and am very careful... I'm not "dial winging" or working toward a 0 AHI. I've done my research but there's always more to learn when it comes to health.
- Have tried many things for the residual EDS, including Provigil, Nuvigil, Ritalin and currently taking Adderall
- Diagnosed with Hashimoto's thyroiditis (Thyroid numbers normal but slightly elevated antibodies run in my family. Have been on low-dose treatment and numbers look very good.)
- Any other possible causes of fatigue/unrefreshing sleep have been ruled out by blood tests


If this sounds similar to anyone else, feel free to PM me or comment... I'm here to help as much as I can!

[TahoeGal]

Hi Shortcake!

You've been thru a lot. I don't have a similar story - I had a sleep study after more than 20 years of complaining of fatigue, to doctors as well as the spouse. My psychiatrist strongly recommended a sleep study, as she thought it might be a factor in my depression. Lo and behold, I have severe central apnea. No known cause. My sleep dr said it was unlikely to be caused by a neurological or cardiac problem since I don't have any symptoms. He recommended against testing, because I have no symptoms.

So I was put on resmed VPAP adapt. Life has been nearly wonderful since then (sept. 2013).

Nice to have another ASV user on the board. There's not many of us.

TahoeGal.

[Pugsy]

Hi...just wanted to welcome you to the forum.
Your machine equipment isn't showing up in your profile....maybe you have one of the machines that are no longer sold so that link is broken. There's been a lot of broken links lately.
You can just manually add it to the comments section if you wish...like I have my back up machine.

[squid13]

Welcome to the forum. There is beginning to be a bigger group of ASV users than there use to be.

[shortcake]

Thanks everyone! Nice to meet you.

TahoeGal - I'm kind of surprised your doc didn't want to investigate your CSA a bit more, especially if it is severe. I'm glad the VPAP Adapt is working so well for you though! I found it a lot easier to breathe with than the Respironics ASV and it kept my flow graphs rounded at the top. I use a S9 VPAP Adapt as my travel machine and wish I could use it more often, but have noticed the Resmed algorithm causes my breathing to become too shallow, which wakes me up.

Pugsy - I initially selected the BiPap auto SV Advanced, but noticed that wasn't showing up (broken link) then changed to to the 60 series, which I can see when I post. If it's still not appearing, will add to my comments. I believe I have the 950 version which is (mostly) compatible with Sleepyhead. The reason for saying "mostly", I will save for another post

squid13 - We are a rare breed I suppose! But I also believe doctors are becoming more aware of the benefits of ASV treatment for certain conditions and the numbers will continue to grow as the technology continues to improve.

[icipher]

Thanks everyone! Nice to meet you.

TahoeGal - I'm kind of surprised your doc didn't want to investigate your CSA a bit more, especially if it is severe. I'm glad the VPAP Adapt is working so well for you though! I found it a lot easier to breathe with than the Respironics ASV and it kept my flow graphs rounded at the top. I use a S9 VPAP Adapt as my travel machine and wish I could use it more often, but have noticed the Resmed algorithm causes my breathing to become too shallow, which wakes me up.

Pugsy - I initially selected the BiPap auto SV Advanced, but noticed that wasn't showing up (broken link) then changed to to the 60 series, which I can see when I post. If it's still not appearing, will add to my comments. I believe I have the 950 version which is (mostly) compatible with Sleepyhead. The reason for saying "mostly", I will save for another post

squid13 - We are a rare breed I suppose! But I also believe doctors are becoming more aware of the benefits of ASV treatment for certain conditions and the numbers will continue to grow as the technology continues to improve.

I am trying to decipher what you're saying... so you have used both the respironics AND the resmed. Which one do you prefer? I use the PR system one ASV 960p and I get along with it, but i haven't tried the resmed.

[shortcake]

I am trying to decipher what you're saying... so you have used both the respironics AND the resmed. Which one do you prefer? I use the PR system one ASV 960p and I get along with it, but i haven't tried the resmed.

Hi icipher. Yes, I've used both. My original sleep doc (a pulmonologist) diagnosed the Complex SA and titrated me with a Resmed S9 VPAP Adapt. Used that for more than a year but wasn't feeling much better, so I went to a neurologist/sleep doc whose lab used the Respironics machines. So now I use the BiPap auto SV advanced (PR System One, 950p).

Each has its strengths and weaknesses. I found the Resmed much easier/more natural to breath with, and I think it is quieter. The pressure changes aren't as noticeable between EPAP and IPAP. The Respironics has a greater range of adjustable settings and pressures, including the auto-EPAP and pressure support range from 0 to max. My VPAP Adapt's pressure support minimum was limited between 3 to 6 and could not set a back-up BPM rate. The newer model may be able to do all that though. The advantage of the Respironics is that the pressure settings can be adjusted so that it acts like a BiPap, BiPap ST, APAP or CPAP. So that's helpful when trying to optimize your therapy. But again, the newer Resmed models may be able to do that too.

If the Resmed algorithm didn't cause me to hypoventilate, I would prefer that machine - mainly because the "easy breathe" technology is very comfortable.

[Pokie]

I am was diagnosed with complex sleep apnea six weeks ago. I was prescribed an ASV machine . I do not have problems using the machine/mask. I am not sleeping through the night like I did I the beginning, very disappointing. i am waking up every 2 hours or so. Should I contact my physician?
Thanks

[LSAT]

I am was diagnosed with complex sleep apnea six weeks ago. I was prescribed an ASV machine . I do not have problems using the machine/mask. I am not sleeping through the night like I did I the beginning, very disappointing. i am waking up every 2 hours or so. Should I contact my physician?
Thanks

It would help to know exactly what machine, mask you are using and the pressure setting...Please register.
Do you have any idea what's waking you.....Need to urinate, changes in machine pressure, mask leaks....etc ?

[kteague]

I am was diagnosed with complex sleep apnea six weeks ago. I was prescribed an ASV machine . I do not have problems using the machine/mask. I am not sleeping through the night like I did I the beginning, very disappointing. i am waking up every 2 hours or so. Should I contact my physician?
Thanks

Welcome Pokie. Your post is on the end of a thread from 2014. It would be helpful if you would join the forum and post your equipment in your profile for continuity of information and responses. Random guest names will be scattered and you'll get asked the same questions over and over. In general, if you feel that it is not your machine or mask causing the wakings, you should ask your doctor. Will save further dicussion for your own thread.