Update on OSA/CSA.. Asv..

[traveling Utz]

As I have shared on here..

This has been a struggle.. and process.. and finally.. Some success..

On my own, I found the perfect Neurologist.. If your in the MD area and need one, let me know.. Ill get you the details..

I was initially prescribed w/ OSA.. Even though the initial study showed Centrals, a lot of them..

Went through the whole CPAP and trying hard to make it work.. and finding out, I wasn't crazy and there was a reason why I couldn't sleep..

The Sleep dr.. Looked back at my last sleep study and saw I was having a TON of Centrals that were not long enough to "register" as Centrals..

I have been on the ASV since July.. I also switched my DME.. A breath of fresh air.. Will answer questions.. Will send out supplies and the proper supplies..

With a huge thanks to Pugsy.. I have been able to access my data.. Did I say how much I am appreciative of Pugsy?? THANK YOU!

I am doing good, not great on the ASV... I am still waking up at 4am, and unable to fall back asleep with the mask.. Even when I am still on Ambien..

I saw my sleep Dr on friday, and since I also was showing Leg movements during my sleep study.. She has now taken me off of the Ambien and put me onto Horizant.

I used it last night.. I woke up at 3am, went to the bathroom and put the mask back on.. I woke up at 4.. left mask on and went back to sleep until the alarm..

This is one of the first times that I slept with the mask until the alarm.

I know its a baby step.. But its a step..

The morning "brain fog" is tough.. But, I will deal with that..

So.. To round it up.. New Dr.. New DME and both have been great!

And an ability to see my data from my machine!!

[sawinglogz]

*wild cheering*

If my experience is typical, the fog takes a while to go away, and it sometimes comes back a bit. Nearly 4 months in and it's still not quite second nature, mostly figuring out how to deal with minor leaks that wake me up.

[JohnBFisher]

Ditto ... Wild cheering ... It takes time to adjust to the therapy. But you are toughing it out. Keep it up. A good night of sleep is possible.

[traveling Utz]

I guess I posted too early...

Last night was horrible..

Slept until 2.. I went to the bathroom, and put the mask back on.. I was awake until 345, when I finally took the mask off..

I may have gotten another 30 mins sleep..

Only thing different was I went to a baseball meeting and had a beer..

So will see how things go tonight..

[JohnBFisher]

... Only thing different was I went to a baseball meeting and had a beer ...

You might want to experiment and see if it makes a difference if you are in a recliner or not.

Or if you have more pillows helping you stay upright or not.

Additionally, does it seem to be due to higher pressure that you have such a hard time sleeping?

Just wondering out loud ... and concerned for you!

[traveling Utz]

... Only thing different was I went to a baseball meeting and had a beer ...

You might want to experiment and see if it makes a difference if you are in a recliner or not.

Or if you have more pillows helping you stay upright or not.

Additionally, does it seem to be due to higher pressure that you have such a hard time sleeping?

Just wondering out loud ... and concerned for you!

Thank you..

I am sleeping in bed.. I am only use one pillow, cause it seems to keep leaks at bay..

The Wisp mask is working great.. It did seem to start with leaks as I entered the end of the three months.. But as soon as I called the DME, I had the mask the next day.

I looked back at my data.. Once again thanks to Pugsy!!

Of the last seven detailed nights.. 2 were awakenings when the pressure was higher.. But the others it had been steady.. So no real correlation..

[JohnBFisher]

Sounds as if you may need to get really acclimated to the mask. You might want to try reading or watching TV while wearing the mask. Even I (after almost 25 years) find wearing a mask confining. So, it's not an unusual feeling. But you can become accustomed to wearing it. That helps.

[hueyville]

I have been fighting similar issue for 2.5 years. Originally diagnosed with OSA after sleep study then the titration said my machine should be set to pressure of 21 cmH20. When it was originally delivered the person from my original DME that showed up was not my assigned respiratory tech. It was the techs week of vacation so one of their salesmen out of Atlanta brought the machine that was supposedly already set up for me. I put it on first night and thought it was going to kill me. I called my DME and was told it takes a while to adjust to cpap therapy for some people. I kept trying for several weeks and never made it through an entire night with the machine. I kept calling and finally the resperatory technician looked at my machine and said all was good with it and I just needed to be patient and keep trying. The ramp button became my best friend. I could press it every 15 minutes without even waking up fully. Even doing this I was miserable and eventually quit using the machine.

Then we had three friends that died within a year of sleep apnea related issues. Didn't wear their machines and were found dead next morning. One fell asleep in his recliner and machine was in bedroom, another went out of town for one night an did not want the hassle of moving the machine for just a single night in a hotel. Housekeeping found her dead the next morning. My wife flipped out and said I had to start using mine so I tried with the same bad luck and quit using it again. Then we were invited to spend a week with some other couples in a condo on the beach so she said I had to take the machine and use it or stay at home. She was not going to let me keep everyone awake for a week. That is when I ordered the Repironics software, got busy with Google and educating myself. While all my information from the sleep study and doctor said to use a pressure setting of 21 figured out the machine was actually set at 24. Called the DME who said their computer said that it was to be set at 24 and the lab must have sent them the wrong data. Of course the lab claimed to send the correct and blah, blah, blah.

I figured out how to get into the settings and turned it down to 21 but it still was killing me so I kept turning it down till I could stand it. We went to the beach with the machine set at a leisurely 8.5 cm. Wife said I still snored but not as bad and the mask muted some also thus I did not wake the other couples. We did also have a room on a separate floor from all the others too thus we made it without incident. When we got home she demanded I keep using it. Looking at the numbers in the software it was obvious that I was not getting any real benefit so I slowly started increasing pressure. I went up 0.5 cm per week till I got to 13.5. Then my back surgeon decided it was time to do my lumbar then neck surgery. While discussing it I asked if my sleep apnea was going to be an issue. He thought not until I told him the entire story. I showed him a print out of several nights sleep and when he saw AHI numbers ranging up into the 90's he freaked and said I had to get the apnea under control before he cut. Said if I started having events like my software showed somebody would stick me on a respirator and he did not want a tube shoved down my throat right after he put my neck back together.

Thus all my surgeries are on hold, I found a good neurologist that specializes in sleep and went back to the lab. He diagnosed central apnea in addition to my obstructive. Of course he has also recommended another high setting but during my titration I kept waking up when they would try to go as high as they needed. In addition they tried my best fitting mask that I brought plus a couple of theirs and could not get any of them to seal appropriately past 20 cm. I am on mask number six which is the best thus far. Respironics quattro air.

So the doc told me to set my machine at 17 cm and run it for a week which I did and it actually worked out with me being able to wear it all night. Each subsequent week I am supposed to turn it up one cm and work my way up to 21 cm. Last week I turned it up from 19 to 20 cm and my body completely revolted. I tried it for three miserable nights. Friday I called his office and he said I could turn it down and try turning back up in a few days. I turned it down to 19.5 Friday and it was a decent nights sleep but last night was a bother and was up at 5:00 aam. Was so tired this morning had to try for a nap and ended up having a very good 2.5 hour nap at 19.5 cm. Thus I am going to try it again tonight but since I need to work tomorrow if it starts waking me every 15 minutes will turn it back down to 19 cm since I know can sleep at that pressure even though my AHI averaged 12 to 21 the week at 19. It has to be better that 60 to 90 which is what I run with pressures lower that 17.5 cm.

So my plan now is to just keep being patient and let my body adapt to this darn machine at its own pace rather than torture myself. Once a week I will turn it up 0.5 cm and when it finally works out will stay and try raising it again the next week. If it hurts me then I will turn it down and wait another week. If it takes me the rest of the year to make it where the doctor wants me I don't care. I would rather have higher numbers than optimum than fight the machine all night. As it is I have to take an Ambian at bedtime then about 3 to 4 hours later I have to take a 10mg diazapam when the machine wakes me and can't go back to sleep. They won't let me take two Ambian per night and every other sleeping pill I have tried makes me double stupid instead of my normal stupid the next morning. I totally feel your pain. I would not recommend following my procedure without consulting your doctor first. Mine says it beats doing what I did in the beginning and just give up and quit using the cpap completely for a year. Until I get my apnea under control my back surgeon does not want to cut. I am tired of living in pain management so I am going to get this working so we can cut. Thus I feel your misery first hand and hope you get on track soon. This board has been a God send for me as until I found this resource I had nobody else's experiences to compare my own to. Now I don't feel like I am lost in the woods alone as it seems there are a lot of us out here in the forest.