Maybe AHI<5 is not possible for me

[jbn3boys]

I'm beginning to think that the idea of having an AHI below 5 on any kind of consistent basis may just not be possible for me. Maybe I need to lower my standards. As long as my AHI is lower than 10, maybe I should call that good enough. And maybe I should start blaming all my tiredness on something else...maybe stress, maybe depression, maybe excess weight, maybe having 3 pre-teen/teen boys...who knows.

After 6+months, I still have no consistent data. I've tried so many different pressure settings. I'm on my second kind of machine. Both of my sleep studies ended up with AHI below 1.0, but I have NEVER been able to achieve that at home.

On those rare times my AHI has been below 2.5, I have actually felt really good the next day. I think that has happened less than 5 times in 6 months. The last week or two have been averaging 7-8 AHI, as high as 9.7 one night.

The most recent idea is I "might" have RLS. I think it would more accurately be called PLMD, but the doc says RLS. Diagnosed based on "elevated periodic leg movements" and a "low" ferritin level. Ferritin level is 20. Normal is 14-350. Doc treats with RLS meds if ferritin is below 50. I'm not sure I'm buying the diagnosis, and I really don't understand why the treatment is not aimed at raising the ferritin level. I'm going to give it a month, and if I don't see real improvement, I don't think I'll continue with it. (I plan on trying to raise my ferritin level through diet and supplements, if I can.)

Has anyone else not been able to achieve "success" with xpap?
(success being defined as AHI lower than 5.0)
Is a low AHI just not possible for some people?

I think I just need some sleep....sorry if this is disjointed or unclear. I will clear up any confusion tomorrow, if you let me know.

[chrisp]

Hello JBN,
You might post your pressure setting and the corresponding AHI with those settings. Type Machine. Perhaps then we may offer some suggestions.

[LarryD]

If you suspect depression you need to talk to your physician right away. Fatigue and a general lack of interest in doing things is a core symptom of depression and will render you unable to do anything if you don't get it treated.

[rested gal]

I'm not sure if you've contacted kteague or done a search for her posts, jbn3boys, but if not... you might want to PM her to talk about RLS and PLM, ferritin levels, meds, etc. Kathy has a lot of experience with all that.

In the meantime, some interesting reading about RLS (Restless Leg Syndrome) vs PLMD (Periodic Limb Movement Disorder -- a sleep disorder):

Muffy's discussion:
viewtopic.php?p=421262#p421262

A guest posted informative quotes from sleepydave:
viewtopic.php?p=77530#p77530

Links to more info from sleepydave:
viewtopic.php?p=94787#p94787

-SWS wrote an interesting post:
viewtopic.php?p=523545#p523545

Interesting posts by sharon1965 and kteague:
viewtopic.php?p=207303#p207303

sharon1965, kteague and others discuss meds:
viewtopic.php?p=211653#p211653

Mars posts a study:
viewtopic.php?p=539631#p539631



Some posts by kteague:

viewtopic.php?p=429038#p429038

viewtopic.php?p=311715#p311715

viewtopic.php?p=147006#p147006

viewtopic.php?p=147439#p147439

viewtopic.php?p=311715#p311715

viewtopic.php?p=71855#p71855
Kathy mentions what a neurologist told her about "Sinemet."

viewtopic.php?p=114828#p114828

[robysue]

jbn3boys,

I'm sorry to hear that your rough times continue.

Do keep in mind that those AHI's on the titration tests are for whatever the actual length of time you spent at the pressure they decide is one to prescribe: and that can be for a very short time. It's a shame that they won't do a full night study without tampering with the pressure to see what goes on with our prescribed pressure all night long.

I do think you need to make sure the other issues that could contribute to your exhaustion are all properly addressed too.

Stress and depression can both make you exhausted and affect the quality of your sleep. Take time out to take care of yourself. And don't be hesitant to ask those boys of yours to help out around the house and to let you have some peace and quiet when you need it.

[Goofproof]

Probably not without a FF mask... Jim

[jbn3boys]

I'm using a BiPAP right now (as it says in my sig line). Set in straight BiPAP mode, not auto, per doctor's orders.
I have used 14/11, 13/10, and 15/12 (currently)
Average AHI at each setting was 5.7, 5.3, and 7.8 respectively.
I expect the 7.8 to continue to come down as I get used to the higher pressure. It's only been about a week.
I spent 4 months tweaking numbers on apap. You can search my prior posts if you want to see all the coordinating numbers.
I'm really not looking for help with changing my settings....I have a doctor who is doing that. I'm still willing to work with her on this. I want to do all the things she suggests, so that she knows I've given each step the time she thinks is necessary. After all, she is the one who is trained in this field. Everyone here is very knowledgeable, but knowledgeable in their own situation--mine appears to be rather unique.

I've already seen a doctor for my depression....have been seen for many years now. I'm in the process of switching to a new doctor, since mine decided to go back to New York (small town Wisconsin was just not for her). I have an appointment with a doc that has come highly recommended next month. I also see a therapist/counselor on a regular basis. (Please to not tell me that I should not see a therapist, or that I am seeing the wrong kind. This was a very well-thought out decision, and he has done wonders for me.)

I really am working on the stress issue, but two big stressors will just take time to resolve. (I don't want to get into specifics.)

I have not actually contacted Kathy, but I have read many, many of the posts here on RLS and PLMD. I do not plan on staying on the meds long term. At this point I am only committing to a month, until I actually see my doctor face to face. During that month I am going to work on increasing my iron levels, and just see if I notice any real difference. I'm guessing the meds won't do much, since I'm not really convinced that I have PLMD. (I'm still waiting to see my sleep study report....)

I think I'm just really looking for some idea if there are others out there who are not able to get their AHI to a level of "effective treatment".

And maybe I'm just looking for a little encouragement, too. It can be hard to want to keep doing this, when it doesn't seem possible for me to get the results that most of the people here can achieve. Maybe we need a special board/forum for those of us who are "unusual" patients.

[scrapper]

Given the info we have shared, those numbers are excellent! They do not meet the ultimate or the world's standards, but for you--they are excellent. Please do not get hung up on the numbers...........leave the bipap be a constant in your life and accept it for what it is.......and work on your other stressors, allowing time to heal some of the grief and pain.

Above all else, be good to yourself my friend!

[Pugsy]

I agree with Scrapper. I just wanted to offer encouragement. Try not to dwell on the numbers. We are all unique in some way or another and sometimes we just don't fit in the mold that many others might fit in. Maybe you just need your own mold..

[bayourest]

jbn3boys wrote: And maybe I'm just looking for a little encouragement, too. It can be hard to want to keep doing this, when it doesn't seem possible for me to get the results that most of the people here can achieve. Maybe we need a special board/forum for those of us who are "unusual" patients.

as another UNUSUAL PATIENT I'd be up for that!!
it does sound like you are doing everything in your power to improve and that you have doctors who are engaged in your process. that seems like a huge benefit. Please hang in there and know you are not alone.

[Tired Linda]

I expect the 7.8 to continue to come down as I get used to the higher pressure. It's only been about a week.

It's easy to get impatient and be too hard on yourself. But, remember, you are on a different machine, different settings and "it's only been about a week." Not very long in the scheme of things.

My family will tell you there's nobody more impatient than me when I'm having a problem. I struggled for five long months trying to figure out what was "wrong" because I couldn't get my AHI under 5. I finally began to think that maybe <5 wasn't going to be possible for me, either. Once I started to accept the possiblity and quit obsessing about it, the answer came. It wasn't the easiest "fix" and it took a huge leap of faith, but my AHI is now regularly between 1-2.

It sounds like you have a lot on your plate right now. The moral of the story is don't give up and cut yourself a little slack. The answers will come. Maybe not when you want them to, but they will come.

Linda

[HoseCrusher]

An observation from "outside the box."

During a sleep study, they hook up a lot of equipment and have something like 20 different things they monitor while you sleep. Based upon this "complete" view of your sleeping, they give you an AHI score of 1.

Your machine only looks at one thing and that is airflow. Your machine AHI score is something like 8.

There is no doubt in my mind that the sleep lab is seeing the same airflow information that your machine is seeing, they just add to that information the other "views" that they have from the other channels that they are monitoring, and determine that the other airflow events are not significant.

One way to resolve this is to sit down with the sleep lab people and bring with you the data from your machine and compare their airflow events with your airflow events, and once you see a pattern, they can show you the other channels that lead them to dismiss the airflow event. Unfortunately, this is most likely not possible without some serious "arm twisting."

The purpose of the machine data is to follow a trend. In your case, as long as the machine AHI is around 8, you are stable. While this is an interesting solution, it doesn't cover the case that involves you having a change in your "life situation" that causes your machine AHI score to drop. Oh well, life often isn't perfect yet somehow we endure.

[Bons]

You aren't alone in the boat.

At my 6-month check up last month, my AHI over a two month period was 4.9, so while it's under 5, it isn't by much. I have yet to sleep through the night, or for more than three hours at a stretch (usually less). Part of my elevated AHI is that I'm subject to sleep onset centrals, so they flare up whenever I have an arousal. I'm probably soon headed for my fourth sleep study to see what's causing all of the arousals - I'm betting on periodic limb movements or my way too vivid dreams that get me anaylzing them while I am having them.

[robysue]

jbn3boys,

It's good to see that you are doing the necessary work for managing the depression. And that you've thought out carefully all the necessary things that go into making a decision about how to address the depression and that you, yourself, are confident that the kind of therapy you're doing for the depression is right for you and is effective for you. That's a critical thing, I think, in dealing with depression.

And yeah, I hear you on the fact that the stressors (whatever they are) will eventually sort themselves out, but that for the here and now, that there's not much you can do about them. Perhaps you can talk with your counselor/therapist about behavioral methods for learning to deal with how the stress makes you feel in a more positive fashion. In other words, there may be some techniques the counselor/therapist could suggest for you to try when the stress seems to be really strong that would help you physically "let go" of some of the stress-related worries and anxieties for a while so that you can more easily relax and think about something else---particularly if stress related worry pops up near bedtime or during any night time awakenings.

And it's a real bummer that you've been working so hard to make xPAP work for you, but that you're still feeling so physically and mentally exhausted AND are still having high machine reported AHIs. It would be so much easier for you to dismiss the large number of central/clear airway apenas as "transitional"---and hence "don't matter, because they'd not be scored on a PSG because you're 'awake' or 'transitioning to sleep' when they happen"---if only you were actually feeling better in the mornings---at least for a little while each day.

[jbn3boys]

Thanks for all the encouragement, folks. It really dose help to know that I'm not alone, and that others really do care. There is just no one around here who really understands what I'm going through.

You've all made some good points, and I will try to remember them. Some days are just so much harder than others. Thanks for being there for me when the days are hard!