AHI 97.....newbie needs help

My husband has had sleep apnea for awhile and we have tried several doctors, machines, masks etc. We have new insurance and so have a new doc who ordered a study. Today we got the results....AHI 97. Sooo scary! He will be getting a bipap but this doc basically said the setting wi be so high it's doubtful he can tolerate it. So what are we supposed to do?!!? A little more info....he has terrible nose congestion. Had a septoplasty and something else(scraping tissues) back in July and it hasn't seemed to help much. We go back next week about that. Anyway, this doctor made this seem like a hopeless situation . Advice?

Djtcl5 wrote:My husband has had sleep apnea for awhile and we have tried several doctors, machines, masks etc. We have new insurance and so have a new doc who ordered a study. Today we got the results....AHI 97. Sooo scary! He will be getting a bipap but this doc basically said the setting wi be so high it's doubtful he can tolerate it. So what are we supposed to do?!!? A little more info....he has terrible nose congestion. Had a septoplasty and something else(scraping tissues) back in July and it hasn't seemed to help much. We go back next week about that. Anyway, this doctor made this seem like a hopeless situation . Advice?

Suggest he try starting at lower pressures till he can tolerate it and then work up. SOME therapy is better than not being able to adjust to it.

As far as the congestion, I'd suggest that he do nasal cleansing before bedtime and maybe lower humidifier settings. Sometimes too much warm humidity can make congestion worse.


Den

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And, there are lots of people who have had AHI numbers higher than his. And, there are also women who use bi-level therapy at high pressures, too.

Some doctors are just jerks (I had one of those). You need to take what they say with a grain of salt.
He'll probably do better with a full face mask if he has nasal congestion problems. At least he could breathe through his mouth that way and not diminish his therapy.


Den

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A full face mask, so the air can get in, stay away from doctors with knives. Get the software that works with your flavor of machine. Jim

I already feel better! Thank you all so much! I felt like he was handed a death sentence. I'm hoping we can get the nasal issues sorted out and I think that will help. He doesn't breathe well even when awake right now. I'm hopeful that he can use the machine. Can you tell me what you software you are referring to?

Djtcl5 wrote:I already feel better! Thank you all so much! I felt like he was handed a death sentence. I'm hoping we can get the nasal issues sorted out and I think that will help. He doesn't breathe well even when awake right now. I'm hopeful that he can use the machine. Can you tell me what you software you are referring to?

Once he gets to using the machine, he'll get quite a bit of his life back.

Some of the forum members have developed some software that works across several makes of machines and several computer operating systems. It's called "Sleepyhead" and there are quite a few references to it with just a little looking around here. In fact, the top "sticky" in the Announcements section above has a good deal of information about it.

viewtopic/t88983/Pugsys-PointersSleepyH ... Hints.html


Den

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"High" is a relative term around here in regards to pressure. You did say he will be getting a bi-level so that should help some. My pressure is only 14 but the bi=level machine made is so much more comfortable. A friend of mine needed a pressure of 25. His adjustment was so difficult he did drop his pressure for a while as suggested above then ease it up in increments. He developed pressure induced centrals so had to go with a high end machine that could handle them, but he's been successfully using the higher therapeutic pressure for a few years now. It is daunting, yes, but certainly not hopeless.

My pressure runs between 11-15cm, not as high as some, but don't need a bi-level cpap or full face mask. Although either of those may be appropriate when the time comes, you'll see. Don't worry until it's time to worry. These sleep lab titrations are often way off, we hear that all the time. You can figure out what's going on, and go with the minimal pressure that gives enough therapy if you have to. But the main thing is just to be prepared to look at his sleep data so he can figure out what pressure he really needs. And stop worrying about it until there's a reason. I know that's easy for me to say, but just don't worry until there's a real reason to worry, focus on being ready to understand how to obtain and look at sleep data, etc. Worrying in anticipation of something that may never happen just makes life unpleasant.

Djtcl5 wrote:My husband has had sleep apnea for awhile and we have tried several doctors, machines, masks etc. We have new insurance and so have a new doc who ordered a study. Today we got the results....AHI 97. Sooo scary! He will be getting a bipap but this doc basically said the setting wi be so high it's doubtful he can tolerate it. So what are we supposed to do?!!? A little more info....he has terrible nose congestion. Had a septoplasty and something else(scraping tissues) back in July and it hasn't seemed to help much. We go back next week about that. Anyway, this doctor made this seem like a hopeless situation . Advice?

Is the new doc one who specializes in sleep medicine? If not, can you see a sleep doc who has more expertise and experience with this? It is important to get your docs to understand and work with you on any necessary adjustments at the beginning because insurance is likely to require compliance data from your machine and if you start changing pressures on your own, it may be an issue.

My first sleep doc about 5 years ago wasn't particularly helpful -- not problematic, just not particularly helpful. My new sleep doc is wonderful. Even before my studies this time, she stressed the importance of working together to figure out how to make this work. I know I'm very fortunate in this. Hopefully, you can find a doc who will work with you to find a way to make it work.

I have sinus issues and use a full face mask. It's a little getting used to at first, and the first ~week was really tough. I mean, really tough. I worked myself up into an anxiety over it. But, by day 5, with help from here, I slept through the night with it. I'm working on some of the techniques people have mentioned here to become a full time nose breather but for now the full face works and I dont want to change. It takes some getting used to, but its worth it to me. I dont even feel the air pressure anymore. When I went to the DME, we tried a nasal mask. There in the office, in the afternoon, sitting up in a chair I could breath fine. But I knew I would open my mouth in my sleep so I chose the full and I'm very glad I did. The slightest stir of wind from the north and my sinuses are upset. I'd recommend the full, and to get used to it, put it on with the machine during the day while watching tv or reading or something other than trying to sleep so he gets used to it. Worked for me.

Oh, and I seriously doubt there's a such thing as a hopeless case.

Welcome to the best damn forum for sleep apnea anywhere .

My son had trouble getting used to the high pressures until we stepped in and told him to drop the pressure until he could get used to it. Once he was used to that he went up in increments until he was comfortable and his AHI was below 5 consistently. Its not rocket science, but the DMEs want you to listen to them and them only....... typical god complex on their part .
Once your hubby get his prescription for his gear, if you have any questions, there are many great folks here that can help out and get him settled.
Again welcome, you have come to the right place to get his therapy on track.
Cheers
Nan :

After several years of denial, I had another sleep study done. In reality, I ended up having 4 sleep studies done. Two diagnostic, and two titration. This was to satisfy medicare requirements. I use a bipap machine with EPAP of 15 - 20 and IPAP of 20 - 25. With the higher pressure, the bilevel machines make it easier to exhale. It took me about three nights to really get comfortable with the pressure. I used it 4 hours the first night, about 6 hours the second night, and have been using it all night ever since, except for a two week period where I couldn't stand to wear the mask. The medication I was on after having back surgery made me very nauseous. The full face mask made it worse.

Djtcl5 wrote:My husband has had sleep apnea for awhile and we have tried several doctors, machines, masks etc. We have new insurance and so have a new doc who ordered a study. Today we got the results....AHI 97. Sooo scary! He will be getting a bipap but this doc basically said the setting wi be so high it's doubtful he can tolerate it. So what are we supposed to do?!!? A little more info....he has terrible nose congestion. Had a septoplasty and something else(scraping tissues) back in July and it hasn't seemed to help much. We go back next week about that. Anyway, this doctor made this seem like a hopeless situation . Advice?

My first advice is to consider another doctor. If he's starting out suggesting failure, then you may want to consider one a bit more supportive and encouraging. The doctor should have said that although the pressure is high, he will work with him to find a way to make things as tolerable as possible.

My untreated AHI is 117, and I'm on what's generally considered a pretty high pressure (17, was 18 before I lost some weight). Although I'd obviously love to return to the old days of just going peaceably to bed without having to put a full face mask on, I also know that now can't sleep without it. The other night, the power went out, and I just stayed up until 1:00 AM when the power came back on (I really need to get a battery backup) because I couldn't take the thought of sleeping with the dangers of severe apnea. Yes, I have issues I have to deal with--such as getting used to often waking with a cotton dry mouth. At high pressures, swallowing air can be a problem--this sometimes produces some abdominal discomfort (and other side effects since the air eventually is expelled)--but tweaking the pressure (or using a bi-pap) can help with this.

To be honest, I don't recall having great difficulty learning to sleep this way. First of all, when you have really severe sleep apnea you're pretty tired to begin with. Secondly, sleeping without apneas makes you feel enough better that it really helps you stick with it. Further, since my doctor told me I needed CPAP to save my life, that was great encouragement to adjust as well.

The bottom line is, it is a bit of an adjustment. But I didn't find it nearly as difficult as your doctor indicates. Please hang in there and work on it. Don't give up hope!

Actually, my wife would probably say you may have the more difficult adjustment. You will have to adjust to the noise of the machine--it won't be as bad for your husband because the noise will cycle in time with his breathing (which I find somewhat hypnotic and a help to sleep). However, most modern machines are relatively quiet, so even this will be mitigated substantially. Also, you will have to become accustomed to waking in the middle of the night next to someone wearing a mask.

Welcome to the forum... AHI 97 is bad but far from hopeless; mine was 140 and my oxygen level dropped to 50 something percent.
I have been on this therapy for almost 2 1/2 years now and it is not hopeless... It gets better..

Take 15 minutes and review this youtube video it will help you understand what is going on..
https://www.youtube.com/watch?v=-gie2dhqP2c

This video put the whole thing in perspective for me. I was able to show this to my family and friends so that they also could understand what is going on.
It should be required viewing for any one that is new.

I have what is considered high pressure settings of 23 and 19. The biggest issue will be to control leaks from the mask.
Liners work wonders.

I wish you well..