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Hi, I've been on CPAP for the last two months but just managed to get my sleep studies. I only had an Apn/Hypn Idx of 1.1 but Arousal Index of 33.6.
The Calculation of Respiratory Disturbance Index listed: #RERAs: 137, TOTAL SLEEP TIME 282.5,
RERA INDEX: 29.10, AHI 1.1, RDI: 30.20.
At the beginning it states there was no desaturation below 90%, but under Calculation of Oxygen Desaturation Index is listed # of Oxygen Desaturations: 4 and Desaturation Index: 0.85. Without cpap the min is listed as SaO2 Min:90; with cpap the SaO2 Min is 93. That doesn't seem enough to justify treatment.
For my second study with CPAP the results states "CPAP improved RDI but increased arousals at all pressures." Pressure at 5 with AHI: 0 Arousal Index: 41.3, Pressure at 7 with AHI: 0 Arousal Index: 74.9, Pressure at 9 with AHI: 1.2 Arousal Index: 66.4, Pressure at 11 with AHI: 0 Arousal Index:86.4.
I showed the study to my GP...who is not a pulmonologist...and she said she would just drop the therapy, so I'm really confused as to whether the 137 RERAs are breathing related or just another problem. Would love to have feedback from those experienced in therapy.

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The MG is not giving you any day time breathing problems that you are aware of? I'm sorry to hear of the need for long term prednisone as it is NOT a medication designed or intended for long term use. Have you had a baseline DEXA scan? By all means you SHOULD. Osteoporosis is a side effect of long term pred use despite its being thought of as a post menopausal women's disease.
I don't know if it is caused by MG or not but I breathe shallowly for a few breaths and do a catch up breath...almost as if I forget to breath and then remember. My GP sent me for some testing but decided was not a problem. I plan to discuss it with the MG neurologist in December.The prednisone has caused type II diabetes but is well controlled with diet. From the first dose of prednisone, I had the baseline DEXA scan and started Fosamax as I already had osteopenia so am due for DEXA scan soon to see if I'm better or worse.

I know prednisone is not a medication designed for long term use and my MG specialist is very aware of this, but 5mg every other day holds VERY severe double vision and ptosis at bay. My life was truly horrible with having to wear an eye patch to even drive a car or read. Also have to deal with muscle weakness.

I feel so much better when I have a reasonable night's sleep and so hope I can unravel whatever hinders it. Sometimes I wake up and am tempted to just get up but decide to get one more segment of sleep to add up to 8 hours in bed.
I will add that I am not overweight so losing weight will not help. If CPAP will help, I am determined to make it work.

Thank you for caring!


.

Judy said:
The MG is not giving you any day time breathing problems that you are aware of? I'm sorry to hear of the need for long term prednisone as it is NOT a medication designed or intended for long term use. Have you had a baseline DEXA scan? By all means you SHOULD. Osteoporosis is a side effect of long term pred use despite its being thought of as a post menopausal women's disease.
Good on you, Dale. You seem to be right on top of things.
"My AHI is actually worse on CPAP than during my sleep study. Perhaps some of the RERAs are being recorded as apneas or hypopneas? I have a data capable machine and regularly check my sleep status. I do seem to feel more alert with the machine but I still have the every one to two hour awakenings throughout the night...not bathroom trips...I never get up during the night."


I am having nearly same experience as you and have to believe that RERAs are being recorded by my equipment as apneas. I have actually just submitted the question of whether this is possible to Respironics and am interested in whether they will reply. In any case, when I was able to cut the recorded AHI on my REMstar Pro from 18 to 6 I suddenly felt day-and-night MUCH better. It's been only a few days since the improvement. They would have to drag my CPAP machine out of my grasping fingers after that. I suspect you and I have UARS or some other respiratory-related syndrome that regardless, responds to CPAP. In the end, that's the most important thing.
We do seem to have the same problem. My AHI in the study was 1.1 and I never have gotten that low on my machine. I am usually under 5 now and sometimes as low as 3 but I still awaken throughout the night. I am feeling better, though. Sure wish I could sleep longer stretches!

I am interested to hear what Respironics has to say about the RERAs. I have also suspected they were being recorded as apn/hyp. I would be grateful if you would post the answer if they respond.
Dale Jackson said:
"I am interested to hear what Respironics has to say about the RERAs. I have also suspected they were being recorded as apn/hyp. I would be grateful if you would post the answer if they respond."

Lo and behold, I did receive a very nice response from the Respironics service center, and a very quick one, too. They appear to attribute my OAs to the real thing, not RERAs. In any case, I will continue to work on leak reduction and getting used to the equipment and hopefully getting better and better. And I'll bring all the data (and the Respironics reply) to my primary care physician when I have a follow-up in November. I don't think I said, but I've only been on CPAP since September. Here is the Respironics response:

"During your one night in the sleep lab, there are many things that may have prohibited you from getting into levels of sleep that you may reach in the comfort of your own bed at home. These include the wearing of electrodes over various places of your body and sleeping in a different bed in a strange environment, just to name a few. When in the comfort of your own bed and reaching these stages of sleep, you may have more events such as apneas or hypopneas. Once you relax and get used to using the CPAP device, you may reach levels of sleep you may not have reached in years, and that may increase the AHI values. Body position during these stages has a big effect on whether it is more prevalent. It is quite normal to see these changes with use of CPAP, but you should be encouraged about the fact that you are feeling better."
Thank you! That really was a quick response from Respironics. Also their take on the OAs is not what I expected but sounds reasonable.

I've only been on CPAP for four months so I'm still working out leaks and masks. I don't think I have yet found "the mask" but it's getting easier. I had my follow-up at two months and now I'm left to myself for a year! I check my numbers every morning and record them. I really love the data capable machine!
I have been asking alot of questions for you guys. Wel not just for you guys. It has also been very educational for myself. If you ONLY have flow limitation then Dental appliance, ENT, or Mandibular surgery may be the way to go. I am still looking for studies to support my peers, but most seem to agree with these findings.

My appreciation to Dr. Park for sending me on the hunt.

Steven Y. Park, MD said:
You don't have much apneas or hypopneas, but you do stop breathing 29 times every hour. RERAs are respiratory event related arousals, and if the breathing pause doesn't last longer than 10 seconds, it won't get counted as an apnea or hypopnea. So you don't have any significant oxygen desaturation issues, but you to have significant breathing pauses that prevents you from staying in deep sleep. It's treated the same way as OSA since it's an anatomic breathing problem. This is along the lines of what's called upper airway resistance syndrome. Symptoms include poor quality sleep, daytime fatigue, depression, anxiety, blood pressure fluctuations, headaches, and many others.

If you can tolerate CPAP, I would continue for a while longer, making sure that your compliance numbers are good. Unfortunately, your effective AHI won't help, since it's so low to begin with. Another option is to use a mandibular advancement device, but only if your oral cavity anatomy makes you a good candidate.
Thank you Rock, for researching this. I was having serious doubts as to why I am on CPAP. I hope you are getting some answers to those questions you are asking! I need all the encouragement I can get.

Thanks again to Dr Park. I was ready to stop CPAP when Dr park posted. I have not missed a night since his statement "but you do stop breathing 29 times every hour." That's a little disturbing to think about.

Rock, you stated "if you ONLY have flow limitation" then other measures might be effective, but I have few flow limitations and mostly apneas and hyponeas. It's the waking so many times that has me puzzled.

I will be seeing my neurologist Nov 4th for my myasthenia Gravis check up and will see if breathing problems may be related. I know many MG patients have breathing problems but I had not connected my sleep problems with this condition.

Keep asking those questions! It can be educational for both you and me!
You definatley need to talk to your doc. They are going to know best about your therapy. Your AHI is pretty low. I was talking about your RERA index. this is the type of flow limitation i was talking about.

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