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[CPAP] New to all of this. Bit puzzled
#1
New to all of this. Bit puzzled
So I was diagnosed last year with severe sleep apnea, mainly hypopnea and a few centrals after a sleep study done in a hospital here in The Netherlands where I live. I was quite shocked cause it was only recent that my partner started noticing my stops during the night. So I'm convinced I haven't had this severity for a long time. I was 37 when I was diagnosed, not overweight, don't smoke or drink, but I do have a lot of hormonal issues and I figured out that I have a deviated septum on right side where not a lot of airflow is available. Seen many ENTS, and they were not sure if a surgery on my septum would benefit me. Since I also have OAS. Cause there is still AIRFLOW trough my nose. So I put that aside cause I don't like surgery if I'm not sure it's going to help. 
I had a sleep study done, where I was allowed to take a benzo beforehand. They knew this would make my sleep apnea worse but I was having some anxiety and I had to sleep there offcourse. I also suffer insomnia. 

I used benzos for quite a while before, my gp said I can take it 3 times a week up to 10 mg. Which isn't a lot. She wasn't worried about it. But I felt I was getting addicted, even to that small amount. So I stopped it all together. I can't tell if it's improved my sleep apnea, I guess not, I've only had this one sleep study done and i was still on them at that time. But I decided to stop cold turkey, got withdrawer symptoms but felt so much better when I was off them. But yes, the insomnia became worse again. 

So I only slept for 2 hours in the sleep clinic in hospital. They said it was enough. I wanted to do a new study, they said they had seen enough to make a diagnosis. So I was diagnosed with sleep apnea, mainly hypopnea (don't know what the difference is??) and I had an AHI of 71. Which is severe. I had a few centrals but they didn't seem to worry about it. So was put on cpap. With a nasal mask, I have epilepsy and my neurologist said i shouldn't use a full face mask in case of seizures during the night. Mouth or nose need to be free. 

I couldn't get used to it. Even though the pressure was set really know. According to sleep clinic it's enough. I don't need high pressure. It was put in between 4 and 6. And the machine shows the pressure is mainly around 5.8 to be enough for me. (sorry I don't know yet how this all works with the pressure and stuff) 

But the 5.8 pressure made my apneas a dissapear completely. Sometimes to 0.8 but that is nothing when you come from a AHI of 71. So I guess it's working? Sleep clinic was pleased. 

Over the next couple of weeks I developed severe sinus pressure and pain, headaches, severe dizzyness and facial pains, mostly sinus pains. Every morning after cpap use I felt like sh*t. Dizzy, room spinning, pale as milk bottle. I was using a nasal pillow mask and the pressure on my nose was insane. ENT says I have chronic inflamed turbinates (already had that before cpap) and I guess cpap isn't helping. So I stopped using cpap. I just couldn't handle the severe symptoms when waking up. 

Then I started to give it another shot. Bought a nasal mask that seems to let out more air through the tiny holes, it's a resmed mirage fx for her. It's not as comfy but the intense pain I felt in my nose with the pillows is gone. It does feel like I can't breathe at times, I find it harder to get used to. Still wake up with sinus issues. And a lot of bloating. To the point that it hurts my abdomen. 

What I've noticed now is that when I start falling asleep I stop breathing right away, I hold my breath and then I wake up. I'm wearing the cpap while this is happening. Eventually I fall asleep but it can take 2 hours of this. I never had that before. 

Does that mean cpap isn't working or is it a setting? It still says that my apneas are below 1, even when this happens. This ramp setting is on, maybe I should adjust it. I only notice it when I'm falling asleep. And I believe that's why my insomnia is worsening. My body keeps waking me up as soon as I fall asleep. I don't have this symptom when I'm not wearing CPAP. So that is odd. I believe it has something to do with a setting. But sleep clinic isn't helpful. They only see that it takes away my apneas and don't care for anything else. I've debated going to another sleep clinic but then I'll have to give them the cpap back, cause it's there's. And I might end up with a completely different one. 

I'm new to all of it, hoping to find some knowledge or guidance here. I have heard that high pressure doesn't always mean you have severe sleep apnea and that low pressure also can be used for severe sleep apnea, like what I have. I find it weird that my apneas go away on such a low pressure setting. Is that normal?? I use cpap around 4 hours a night. Hoping to go to 6. Thars the amount of sleep I need. I do need to pee a lot during the night. I have hormonal issues that cause a weak bladder. So that isn't helping at all. 

Any help would be appreciated. Thanks so much. It's all a bit overwhelming
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#2
RE: New to all of this. Bit puzzled
Welcome to Apnea Board!

If you are able to download the free OSCAR software and post a chart from the daily page, we could take a look at your data and offer some suggestions.

First, be sure you have an SD card in you Cpap while sleeping.

There are links in my Signature Line to help you organize a chart and then by using the Attachment Feature, you can post a chart here.
OpalRose
Apnea Board Administrator
www.apneaboard.com

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE.  ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA.  INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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