No Answers Yet For Problems With ASV

fiberfan wrote:

Paper_Nanny wrote:MR is also going to set up a referral to a sleep specialist in another part of the state who has used xyrem to help normalize the sleep architecture in people with FM.

I think this is the med a friend with FM is taking. Friend started the med with a clinical trial and described the med as basically the same as GHB. The positive changes in friend's energy levels have been wonderful to see.

Yup, that's the one! Glad to hear your friend had positive results from the medication.

Deborah

Mr Bill wrote:

jnk wrote:...

An overview that I found enlightening, myself:

http://emedicine.medscape.com/article/3 ... view#a0104

Fits me to a T. Especially the insomnia. ...

Amen! Problems with insomnia - when I take time to analyze it - are as much due to a dread of sleep as it is due to anything else. If you constantly stop breathing as you fall asleep it WILL cause you to get edgy about going to sleep.

As I've noted before my issue appears to be due to my neurological issues. Sporadic OPCA impacts the brain stem, including the respiratory centers. And I do know that under stress I tend to develop ataxic breathing. It's not a common symptom for me, but I have experienced it. Hmmm... I might need to add that to my notes to ask my sleep doctor / neurologist during my next visit.

I've also realized that as my stress level increases, so do ALL of my symptoms, including the central sleep apnea. After a long day of work around the house, or being out with people (in noisy, busy environments), I am more likely to have problems with my central sleep apnea. Fortunately, I've learned to just rely on my machine. So, I can (mostly) ignore the gasping episodes as I fall asleep and allow the machine to ramp up the pressure.

But these breathing issues is why my MedicAlert file includes "Uses Ventilator At Night". And it's why my wrist band includes "sleep apnea" - among all my other problems. I want first responders to realize that breathing is NOT automatic for me. Just maintaining a clear airway is no guarantee with me.

Mr Bill wrote:... My mom was in the hospital last week starting off with an ER visit till 3 in the morning and then admittance. ...

So sorry to hear about your mother. It's good to hear she is doing better. Now, how about you catching up on that sleep ... 8^)

Mr Bill wrote:... The waking sleep transition seems to get worse for me when I am tired. The adrenaline of waking ... its just really hard to even consider sleeping, even thought that is what will fix much of the problem. If I can just get to sleep. ...

Wow! Unfortunately, that is exactly how I feel. Fortunately, I don't struggle with asthma or GERD. But I sure know what you mean about that adrenaline shot. I had really pushed myself for a couple days. And I felt it for the past two nights. I fight going to sleep. And I ended up ripping off my mask a couple times. I just about get to sleep and WHAM! I realize I have NOT been breathing and my heart is racing. I have to calm myself and force myself to put the mask back onto my face.

And I've had people have the gall to tell me that I'm overweight because I lack will power. They have NO idea. Choosing life, choosing a positive attitude, choosing to put on my mask are all due to sheer will power to do what I think is right and better - better for me and better for my family and friends.

I really appreciate that response. Its good to know I'm not the only one having this experience.

On Wednesday 03 August 2011

Paper_Nanny wrote:He did suggest one medication change for me, which is a change from cymbalta to savella. Cymbalta increases serotonin and NE at a ratio of 3:1. Savella increases at a ratio of 1:3. He said it is possible that since savella has a higher increase in NE, it may work better for fatigue. If this is true, it may allow me to reduce or completely eliminate the methylphenidate and provigil that I take.

I thought I would give an update on that now that I have been on the savella for a few days. Yes, My Rheumatologist did give me the savella titration pack on 02 August, but I did not start taking it until Tuesday 09 August. I didn't want to be doing any medication changes during my camping trip the weekend of the 6th. Camping trip went well, by the way. I didn't take My Machine with me and altitude was a little higher than what I'm used to- 5744’ as opposed to my usual 4100- but sleep was okay and I was quite the energetic camper.

So, the medication change... I had my last dose of cymbalta the day before starting the savella. And with that REM suppressor out of the picture, I have been having dreams and dreams and even more dreams. I know the wave form data doesn't show sleep stages, but I have been having many periods of fast breathing in my sleep. Could that be indicative of being in REM sleep?

The titration pack for the savella has Day 1: 12.5 mg in the evening. Days 2 and 3: 12.5 mg morning and evening. Days 4 through 7: 25 mg morning and evening. Days 8 through 14: 50 mg morning and evening. That dose (50 mg BID) is standard maintenance dose.

I am on Day 5. I did okay until this morning and then wham! I am definitely feeling some side effects of the drug in a not so happy way. So, I am going to deviate from the standard titration and slow things down a bit. Back off to 12.5 mg in the mornings and 25 mg at night until I feel okay at that dose, and then increase to 25 mg BID.

Possibly once I get to a higher dose of the savella, it will show some REM supressing effects also. I will be interested to see what happens in that regard.

Here will be reports from the BiPAP for the past two nights, and links to the past two nights of Waves.



http://dl.dropbox.com/u/34735018/08-11%20waveforms.pdf



http://dl.dropbox.com/u/34735018/08-12%20WaveForms.pdf

Deborah

Paper_Nanny wrote:MR is also going to set up a referral to a sleep specialist in another part of the state who has used xyrem to help normalize the sleep architecture in people with FM.

I was amazed by the speed with which the clinic was able to get me in. Someone called yesterday to schedule my appointment. Next available was 23 August. I declined that one and am scheduled to go there on 30 August.

And my long awaited appointment with My Sleep Doctor- Mister Sleep Doctor himself- is scheduled for tomorrow. I still have not complete the homework assignment of coming up with my questions for him. I still have over fifteen hours. Why rush??

Increase on the Savella dose is going slowly, but increasing none the less. I have gotten up to 25 mg BID and will be raising the bedtime dose to 50 mg tonight. My fibromyalgia symptoms are worse than they have been in a very long time. I had actually forgotten how bad those symptoms could get. I don't know how much of that is because of this drug swap, but in case any of it is, I want to be on the full maintenance dose of the Savella as soon as possible. And if it doesn't help, then I will be making a quick turn around and getting back to my Cymbalta.

My AHI has been pretty low for the past several nights. Maybe I will post graphs tomorrow. I had one night where it was down to 2.4!! Amazing!!

I have been feeling overly medicated the past few mornings from the ritalin/ provigil combination and have cut the morning provigil dose in half to see what will happen. So far, nothing has happened other than me not feeling quite so overly medicated. Is it the Savella or is it the lowered AHI? Or is it Memorex? Or, in an odd twist of fate, is it a symptom of the fibromyalgia? Who knows? Anyone?? Certainly not I.

Deborah

Deborah

If you choose to reply (u know !) - please do post the capnograph + matching SpO2 data. That will be so informative to us lurkers.

Thanks

DSM

dsm wrote:If you choose to reply (u know !) - please do post the capnograph...

Capnograph?

I go on vacation for 2 weeks and you guys are doing capnography?

This is a progressive board!

NotMuffy wrote:

dsm wrote:If you choose to reply (u know !) - please do post the capnograph...

Capnograph?

I go on vacation for 2 weeks and you guys are doing capnography?

This is a progressive board!

Well whaddya expect - you have been teaching us plebs for years & years - you must have realized (hoped) that a tiny part of it might eventually sink in
Now this web site below is great for learning what a half decent capnogram might reveal - it really is very impressive

http://www.capnography.com/What/what.htm#

Also, thanks for all you have set out to teach us - I hope some of it is filtering through.

Cheers

DSM
(off on a 4 week trip myself)

NotMuffy wrote:

dsm wrote:If you choose to reply (u know !) - please do post the capnograph...

Capnograph?

I go on vacation for 2 weeks and you guys are doing capnography?

This is a progressive board!

I don't do capnograph, but my husband has done it.

Paper_Nanny wrote:

NotMuffy wrote:

dsm wrote:If you choose to reply (u know !) - please do post the capnograph...

Capnograph?

I go on vacation for 2 weeks and you guys are doing capnography?

This is a progressive board!

I don't do capnograph, but my husband has done it.

Now that I think more about definition of "capnograph" I will say that no, he hasn't done it, but I have. I was originally thinking "capnography" was doing calligraphy in all capital letters, but that doesn't make sense. "Capnography" would be more like how e.e. cummings wrote. I spent many years of my life writing like that. Husband has always been more compliant about Rules of Capitalization.

He is also more likely to use standard definitions of words and if he were here, he would be quoting from dictionary.com right about now. "cap·no·graph definition-- Pronunciation: /ˈkap-nō-ˌgraf/ Function: n : a monitoring device that measures the concentration of carbon dioxide in exhaled air and displays a numerical readout and waveform tracing.

Deborah

Paper_Nanny wrote:Possibly once I get to a higher dose of the savella, it will show some REM supressing effects also.

Maybe, maybe not:

Just "Relocated"

Paper_Nanny wrote:

Paper_Nanny wrote:Results of my PFT:

https://docs.google.com/leaf?id=0B17g-C ... h&hl=en_US

https://docs.google.com/leaf?id=0B17g-C ... h&hl=en_US

Is that hyperinflation something to be concerned with? (I will put that on my list of questions for MSD).

I believe that assessment is somewhere between "misleading" and "incorrect". With all parameters increased, particularly IC (if you were really hyperinflated IC would be down) and PEF (which is like sick) you are simply "windy".

An hefty FRC promotes Plant Gain stability (one of our research points) and the Diffusion is WNL (although what is construed to be "WNL" for Diffusion is beyond me. If you look at the CI, basically if you show up for the test you're WNL. Probably the best way to determine a specific PFT Laboratory Diffusion "Normal" Range is to stand outside and ask a "statistically significant" group of "normals" what they got.).

Going back to the reason(s) behind the PFT, diffusion was needed to consider why baseline oximetry was a little low. If diffusion is "WNL", then perhaps respiratory depression (secondary to the drug cocktail) could be considered as a better explanation.

And calligraphy would have been a better way to look at that.

My DME ordered an ASV but she said it was not the S9 Resmed so my humidifier will not work. Not sure what kind it is they had I think she said system one.

I believe they all have efficacy data that are ASV machines. What other brands are out there and would have trouble downloading the data. She said they will order the s9 asv if that is what i request.

Here are detailed reports of the past four nights, showing very reasonable AH Indices:

Here is the wave form data from last night.



And here is my bit of nightly wave related confusion--

The CAs at 1:28, 1:30, and 1:39-- The places where the CA lines are don't look all that different than the places immediately preceeding the CA line. Why is the line where it is? Also, the places marked as CAs don't look flat, like other apneas. Why are they apneas and not hypopneas?

The entirity of last night's waves can be found here--

http://dl.dropbox.com/u/34735018/08-18%20waves.pdf