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I am seeing the Sleep Dr tomorrow,(Monday) because I have had an increase in stopping breathing, even with the machine. It was horrible. Waking me up with the adrenaline rushes from telling my brain to BREATHE!!! I already wake up about every 2 hours anyways, even WITH the machine.   Made my heart rate go up and my BP. When I called and asked for appt they told me they could only see me in 4 weeks. Well, I couldn't live like that for 4 more weeks.  So I raised the setting up to 11, it got a tad better so I raised it to 13. It is better, but I am still having apnea.  It has gotten so bad, due to the hormonal issues causing lack of sleep that I am taking Doxipen. AND I HATE to take sleeping pills. I have gone 7 years without taking them with this waking up every 2 hours mess.

ANYWAYS!!!!!!

 

I did have some central apneas with my sleep study. I was wondering if I didn't need a bi pap machine. And if anyone would please give me some ideas on what to ask the dr.

I would surely be appreciative (A little late I know, but just how thought about it).

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Mary, thanks for the heads up on the video's.  I will watch them. I have had such a hard time because of sleep, with hypothyroidism, adrenal, and other hormonal issues, which affect sleep BIG TIME! 

And the c-pap is not the big a help. Since I raised it up, it is some better, but not a good restorative sleep that is required in order for us to perform at a good healthy level. Basically, stay tired most of the time. 

Hopefully, this study that will be done, this Sunday, the 3rd, will show something.

Thanks again for your input.

Terry, Thanks for the info. I will see what the study says, and hopefully we can go from there. I am hoping and praying, that I don't have to get a new machine. I have not been able to work in 8 years now due to health issues. 
Anyways, it is what it is, as my brother says! ha ha.

Thank you again. Will let you know what the outcome of the study is. I am also going to find out what my AHI is. It does not show up on my machine.

Peggy

Terry Vella said:

Peggy, Auto machines are about twice the price as a normal CPAP then Bi Level are dearer again. The auto is probably more for comfort, for example mine is set at a low pressure of 5 and a high pressure of 15, I hardly ever reach 15 but if I need it my CPAP detects what I require and raises it, when I start breathing again, after a few minutes it will reduce again to 5 and stay around there till I have another Apnea. I have complex sleep apnea or both obstructive and central, I find that fixing my obstructive helps my centrals probably because I now get the much needed oxygen to my brain. My AHI is down from 30 to 3 and of those left 2 are central and 1 obstructive per hour or 66% to 33%. I started with a straight CPAP and found the constaint pressure a bit overwelming and now only get the pressure I require.

Peggy, hope it goes well and look forward to seeing your results, hope you don't need a new machine for the cost side of it. I use software that runs on most newer machines that will tell you all the info you need, when you work out what your doing with the CPAP we can see if it works on your machine. The software is free but you would need to buy a card reader for about $40, not sure you may already have one if you have a digital camera. I find it good having everything in my own hands and not relying on medical people as much. Anyway one step at a time. 

Terry, Thank you so much for your support. That helps! More than I can say. I tell you, I hope I don't have to have a new one(Would love to not require the old one) because of the financial aspect. Will post it after I get home Monday.

Peggy, good luck with your visit and let us know how you go.

Just to clarify excessively high pressure causing central apneas, my sleep doctor described this as the body's way of resisting the excess pressure, a transitory effect that can be addressed by reducing the pressure.   I was routinely seeing anout a 2:1 ratio of central to obstructive events according to the Resmed algorithm and measuring system.  As my AHI was usually in the 2-3 range, I haven't worried too much. The last two nights I've had an AHI of 0, so I'm starting to worry that my S9 is just mailing in the results --- LOL!

Mary -- why do you believe ASV would be better for everyone? 

My apologies for being off this forum for a number of months.  I underwent a number of challenges throughout the last quarter of last year -- including replacement of a second knee -- still swollen but no limp, close to full extension and flexion allowing me to ride a cycle with ease -- touch wood!

Mary Z said:

Real central or mixed apnea should be treated with an ASV machine.  Please look at Phillips Respironics or ResMed web sites for a thorough explanation of ASV machines.  They cost between $4,000 and $5,000 unless you buy one second hand.  I believe ASV would be better for everyone, but because of the expense insurance companies need proof they will work for you and that you need one. I had a sleep study done with the ASV, it has brought my AHI from a six month average of 18.6 to a 9 month average of 4-8.  You can ask your doctor about an ASV.  They are programmed much like a Bilevel, but the softwear is different and more complicated.   Did you know sometimes raising the pressure  can cause centrals when the pressure is too high.  For a year I tried CPAP, AUTO, and Bilevel (I was diagnosed in March 2008 and went on straight CPAP which I liked).  My apnea  worsenened, probably because of the many medicines I take.  I urge you to take the time to watch the five YouTube Videos Zollistar recommended.  The Doctor is a neurologist, pro CPAP abd talks a lot about vitamin D, and the need for restorative sleep because that's when our bodies heal themselves.  I have said it before, but it's worth repeating.  Good, restorative sleep (meaning getting to the deep stages and REM sleep) is absolutely necessary for you to feel good and succeed with CPAP. If you haven't worked on sleep hygiene please think about reviewing that and working on your sleep.  I know it seems  simple, but it's not, getting good sleep can be real work as you experiment to find out what works for you and what doesn't.  For instance an example is coffee, some people are exquisitely sensitive to caffeine.  Working on the computer until bedtime can disrupt your sleep because of the light from the monitor and the  awake state it leaves you in. Sorry to be so longwinded.  How did your visit with the doctor go?  Good luck,

Mary

 

This is a very long, edited description from Respironics website  on ASV :

 

Advanced thinking further simplifies management of complex sleep apnea.

What if you could easily and effectively treat your most complicated sleep-disordered breathing (SDB) patients—stay connected to them at home as their needs change, and improve  your at-home management to positively impact long-term compliance? BiPAP autoSV Advanced—System One was specifically designed and validated to give you the peace of mind to not only treat patients with Complex Sleep Apnea, Central Apnea or Mixed Apnea, but the ability to manage their future usage, compliance and efficacy data to help assess the success of treatment.

Clinically proven algorithms, including the innovative Auto EPAP, continually monitor and adjust to a patient’s changing therapy needs.

Demonstrated Bi-Flex technology enhances patient comfort for long-term efficacy.

The BiPAP autoSV Advanced—System One incorporates more device intelligence so that you can make the most informed and timely decisions for your patients. By combining the proven autoSV Advanced algorithm with the System One platform, the BiPAP autoSV Advanced—System One:

monitors sleep assessment parameters to provide optimum feedback for your most complicated patients

Provides detailed patient-flow waveform data, and is able to recognize indicators beyond classic OSA symptoms. Provides valuable information in real-time with the addition of the modem options to simplify patient management

 

Incorporates our state-of-the-art Encore patient data management and reporting system automatically gathering vital patient information through a secured-access website available via any computer.

The BiPAP autoSV Advanced—System One puts timely, accurate patient information at your fingertips, allowing you to instantly change prescriptions or communicate as necessary. The intelligence is easily accessible and can be collected through wireless modems for remote access, helping ot link a team of clinicians in separate locations together.

I know this is mainly aimed at clinicians

You know the argument that is out there- CPAP or AUTO? ASV is a glorified, better combination of both AUTO and Bilevel. Folks prefer AUTO because it is more flexible. This is the most flexible and intelligent machine out there.  Even if you don't have complex ,mixed, or central apnea now this machine will treat these conditions should they arise.  This is a great machine for long term use because of that flexibility.  I started treatment with a CPAP, next doctor wanted bilevel and I ended up with two because the first one did not go up to 30 pressure (unfortunately this machine gave no clue as to AI and AHI), so back to my old VPAP Auto 25.  I still was having nightly apneas in the 25 average range. I asked for a sleep study with an ASV and my AHI dramitically improved to 4-8.

Of course the cost is prohibitive because the software is more advanced and not everyone needs an ASV, but if cost was not a factor I think this would be the preferred machine for its ability to treat all kinds of apnea.

Hi Everyone, Hope you had a great restful weekend. 

Ok, Back home, guests gone. Settled down a bit, and time for a report.

 

It started off kinda rough,  I had a 2 hour drive up there, and was a tad apprehensive when I arrived. because I could not get situated or comfortable in the bed, and couldn't get the pillows just so. You know how that goes.

Basically, The report shows that the machine is taking care of the apnea, I just don't sleep. From 10:35pm to 5:59am, to be exact, I woke up 6 times. (and they gave me an Ambein after about an hour) Not from the apnea, I just don't sleep. The Dr. told me I was just going to have to take a sleeping pill. The problem is, I have taken them and I still don't sleep. PLUS, I HATE to take medicines. He said I was just going to have to add it to the arsenal. Doxiden 5 mg. A low dosage. I have been taking them since I've been home, and the sleep is not much better.

 

This seems to be a family issue, because I have talked to several Aunts, Uncles and Cousins, and they all seem to wake up all during the night.

 

He also said I was maintained at level 8 on the machine, but I have had to be using it at 13 at home. I am not understanding that part because "8" just does not keep the apnea periods under control at home.

Oh well.....What is a body to do? 

Thank you all for your interest and helping me with this. You can't put a price on support!

Peggy, it looks like you don't need a new machine which is good.I feel the same way about meds and even with CPAP wake numerous times during the night. People think CPAP makes you sleep, it doesn't, it helps you breathe and the by product should be a better nights sleep.

I normally get 7-8 hours broken sleep but it is much better than the 1-2 hours I used to get and I feel good most days vs how crappy I used to feel.

I'm sure I don't have to tell you about all the sleep hygiene things that you are more than likely doing. I have found some herbal sleep medications help a little, not that I sleep but they seem to calm me. I sometimes take Valerian and have just been taking Kava, I still don't like taking them for more than 30 days, they are not addictive like prescription meds but not sure what they do to my body. It sounds like yours could be hereditary. Have you tried some things like meditation? I go to a course each week but don't know if it really helps me sleep but think it helps with my stress and anxiety.

The sleep problem, the insomnia, is serious.  Without the deep and REM sleep your body does not repair itself.  Perhaps you could find a sleep specialist- a psychologist or social worker who could teach you how to sleep.  I hear you about genetics and they probably will find the gene that causes insomnia to run in families one day.  I sympathize.  I have insomnia occasionally, but I have a new mask and I'm afraid of it leaking so am constantly aware during the night and checking my mask for leaks.  Still I cannot imagine never getting good sleep.  I don't know why the numbers they get in the lab so often do not correspond to the pressure we need at home.  I guess there are some apneas they do not count when falling asleep and waking and if you had a few centrals they might not count them.  Last time I had a titration study they said at 4/8 I had "no apneas".  I went home expecting this miracle to continue, but was immediately back up to 25 apneas/hour.  It's disconcerting and disappointing.  Peggy, hang in there.

Terry, Mary Z, 

Thank you both for your help.

I looked above and I misspelled the sleeping pill. It is Doxipen! I hate using these things because they cause problems of their own.  But I guess I shall give it a whirl. They've not worked in the past, so maybe this time will be different.

We Shall See!

You guys have been great!!!!!!!!

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